The usual description of migraine includes visual aura, one-sided throbbing pain, nausea, and sensitivity to light and sound. There’s a lot more to it than that. The following information, which comes from my very favorite migraine book, Migraine: The Complete Guide, is a list of the other symptoms of migraine. It’s organized by the phase that the symptoms they occur in and by which part of the body is involved. I’ve made a few changes to the information from the book; most noticable is that I’ve collapsed the book’s sections on aura and prodrome into one.*
Prodrome (the period before the pain begins)
Visual (aka aura)
- a bright shape that spreads across the visual field of one eye and appears to block some or all of the vision; can be seen whether the eye is open or closed
- flashes of light and color
- wavy lines
- geometric patterns
- blurred vision
- partial loss of sight
- numbness or tingling on the face or upper extremities
- a sense that limbs are a distorted shape or size
- smelling odors that aren’t actually present (like natural gas or something burning)
- partial paralysis
- weakness or heaviness in the limbs on one side of the body
- difficulty finding words
- problems understanding spoken or written language
- mental confusion
- transient global amnesia (similar to amnesia that follows a concussion)
- food cravings (particularly for carbohydrates, candy and chocolate)
- stomach rumblings
- increased thirst
- bloating/fluid retention
- frequent urination
- mood changes
- high energy
- sensitivity to light and noise
- intolerance of being touched
- heightened sensitivity to odors
- intolerance of food odors
- loss of appetite
- cold, clammy hands and feet
- facial swelling
- goose bumps
- bloodshot eyes
- black circles around eyes
- water retention
- frequent urination
- frequent yawning
- nasal congestion
- runny nose
- difficulty concentrating
- changes in blood chemistry
- changes in blood pressure
- blood vessel dilation
- difficulty regulating temperature
- changes in heart rhythms
Postdrome (24 hour following headache)
- inability to concentrate
- frequent yawning
- feeling of intense well-being
Having the variety of chronic daily headache that is caused my migraine, I’m not convinced that these symptoms only occur in their respective phases. I certainly have different symptoms that don’t seem to be connected to severe headache pain. It could be that people with CDH have trouble knowing when they are in a particular stage or that we experience the symptoms more frequently than in these rigidly defined phases. I also wonder if people who have been diagnosed with tension-type headache experience similar additional symptoms, particularly the cognitive ones. (Don’t take anything in this paragraph as fact — these are my vaguely informed, non-medical musings.)
So you’re not crazy, losing your mind or faking it. Perhaps it’s a link to send to those who question your illness.
*Some sources maintain that an aura only encompasses the visual changes that can happen before a migraine. Others, like this book, include sensory, motor, language and cognitive difficulties as part of aura. The more common approach is that aura is only visual, but one of many symptoms of prodrome.
152 thoughts on “Not Just a Headache: Migraine’s Other Symptoms”
I feel this headache that is difficult for me to see clearly. My body is very weak, too much saliva in my mouth and am feeling hot in my stomach.high body temperature and lost of appetite. Am still worrief
I never wanted to believe I had migraines – thought it was sinus but CT sinus scan was normal. My mother suffered migraines and became a pain pill addict (dr prescribed) who was afraid to leave the house for fear of encountering her triggers – perfume, smoke, cleaning products , etc. I didn’t want to be like her so I blamed my headaches, nausea and auras on my sinuses. I can usually beat back a headache with pseudoephedrine (the stuff you have to get from the pharmacy) tylenol, black coffee in a hot mug I can wrap my hands around, deep breathing, hot water bottle, hot washcloth with essential an essential oil, peppermint, lavender or rosemary all seem to help a bit. If it’s not better or starts coming back after 4 hours I’ll take Advil. But the nausea often remains even when the headache gets better. My headaches aren’t the ice pick, head banging variety. They feel more like a sickening sucking pressure behind one eye. My auras don’t predict a headache they seem to be random – Scintillating jagged rainbow that grows from a speck til it covers my field of vision in one eye. Auras last about 20-30 minutes. I think overeating certain foods is a trigger for me – smoked foods like jerky or salmon, tofu, cheese and falafel. But I can’t say for sure because the headache comes a day or two later (?). Definitely can’t drink wine, tequila is ok ; ) Sleeping in late will often set me off. Reading these posts was very enlightening – so I thought I’d share my experiences and remedies. If you can tolerate the sudafed, give it a try. I think it helps because it constricts blood vessels, definitely gives you an energy boost but it can make your heart race. Also my GP dr recommended vitamin B2, Magnesium, and CoQ10 taken daily as a preventative. I am not faithful in taking the supplements so I can’t testify to their effectiveness. Thank you all for sharing and I wish you good health!
I’ve had migraines off and on since I was 12. I have found that the best action to take when one is starting to happen is get outside into the fresh air ASAP. If I manage to do this it will be stopped.
Yes to the tingles! Not all the time, but often enough.
Sometimes out of the blue my scalp tingles, that is usually a sign migraine is coming.
I also have this feeling that my nerve endings are outside my skin. (?!). I feel that raw.
I started getting more of these types of symptoms after having ocular shingles. Have you had shingles. Same nerves are involved….
Got answers to so many questions.thanks.
Does anyone get the sensitive skin even without touch? It sounds weird but I get like heightened skin without any touch. It feels like someone is touching it with a feather, like a tingle.
I have a number of neuralgia issues related to my migraines. Sometimes I get tingling pain that keeps getting worse. If it gets real bad, it feels like someone poured strong acid on my skin and my skin is burning off. This particular symptom is worse when it is hot and humid – things like boiling water on the stove is the worst – can’t go into th ekitchen when anyone is boiling water.
I’m glad to have found this blog also. I am sorry, everyone here for what you are going through. I “never had migraines, and wasn’t even a headache person!”
Okay so that was wrong. Only now after feeling dire for almost a month, I find my memory going back to when I was 16 and having something (no one even bothered about migraines in those days. You took an aspirin or two and soldiered on) I had and still have -no idea if it was a migraine or not. I was taking exams, and only passed two of them I felt so rotten that whole week. The doc gave me some analgesics which I recall didn’t work, and I also remember soon after that having a terrible stomach which ended up with me going through all sorts of stomach tests in order for them to find nothing. I was put on a diet for it which was dreadful and wouldn’t be considered today.
Then suddenly I was better. Forgot all about it. Everyone said it was “exam nerves”. Okay so I had been pretty nervous about other things before that but never felt ill like that.
Fast forward 14 years and one May I got stomach pain all of a sudden one evening. Thought it was a 24 hour bug. Felt sick as a dog. Then an oppressive malaise kind of headache started and during it I was pretty useless at everything and any kind of focus was hard. Ditto any kind of physical hard work -like cutting down deadfall, getting stacks of firewood in for winter and chainsawing/chopping it all up.
That lasted….about a year. The constant draining feeling was something I hadn’t been used to feeling. So were the bouts of inexplicable nausea and an endless pressure inside my head. No -not a blinding agonising pain, but it was there -all the time. The nausea would switch on and off at random. I ate whenever it switched off.
Doctors hadn’t a clue and I gave up on them and their paracetamol “cures”. I felt like I hadn’t long to live. Lived in the mountains and there were lots of steep walks/climbs more or less involved with everything in normal life. I spent a lot of time sitting on a mountain crying my eyes out because I literally hadn’t the energy to get home and lie down. Felt like there was some kind of vampire doing me in.
Yet I knew I was a fit person. I had no health issues! Back to the doc for umpteen tests but no one could find anything wrong. Migraine wasn’t even mentioned, and I knew nothing about migraine (no internet in those days and a 12 mile round hike to the nearest library. As if I would have even thought about it anyway.)
Not one other thing wrong with me.
Then one day (forgotten how it happened) it just wasn’t there anymore.
So what did I do? I forgot all about it, and looked back to that dark year as some weird anomaly I couldn’t and didn’t want to understand.
Fast forward to 1999 when I saw scintillating shimmering silver over my dying husband’s bed. I thought it was his Soul starting to leave.
Bless his Soul.
But no pain or other ill feelings to follow that.
Saw the same shimmering lights edged with beautiful rainbows once years later, but again no other symptoms followed.
Forgot about all those light show incidents too. Moved on.
Stll not a “headache person….never get them”, I saw the same lights, zig zags, rainbows while walking in snow March 17. No symptoms to follow.
But I was splitting logs on March 27 this year when I suddenly (can time it to the minute) -felt absolutely horrible, and or no logical reason, queasy, shaking inside, fast heartbeat, missing beats all the time, out of breath a bit, and that awful dull “miasma pain” over one eye. Thought it was low blood sugar, so ate but it didn’t help. Neither did 2 pain tablets (Ibuprofen) Drank coffee, didn’t help. Tried lots of water….didn’t help. Sleep didn’t help.
Two days in I thought it had to be a virus or stomach flu. Twice had to go to the loo pretty quickly in the morning which was -well -a little bit “faster” than my usual habit, but wasn’t full blown diarrhea….so I wasn’t sure about the stomach flu idea.
So now it’s been almost a month of feeling that every day. Feel sick almost every morning and shaking all over and even my legs feel weak. Heartbeat is all over the place. Feel like my head might explode. My knee twinges (my knee is fine so why does that happen?) My back aches -not in the kidneys but in the sacro iliac joint. That might not be connected….I don’t know.
Food cravings and for oily greasy things (weird or what?). Oddly I am craving sardines, and often do just following a bout of nausea. How does that make any sense? Or greasy fried eggs potatoes and butter at one in the morning just after feeling shaky and sick as a dog. Craving salty stews, chocolate. Yes I am sure they are BAD but I crave them deeply and eat them too. There have been times I’ve felt so queasy I can’t face food but have happily eaten a small chocolate bar and actually felt a little better!
Exact opposite to that….hunger has increased and sometimes it’s unnatural ravenous hunger when I can’t even wait for the veg to steam and eat it out of the pan before it’s done. Now I can’t go more than 3-4 hours without eating. I do try to stick to “healthy” food but allow myself to eat food I crave also.
Much more thirsty, so obviously piddling more.
Doc checked me out and can’t find anything wrong. He said I sound as if I’m pregnant with the morning queasiness and odd food cravings. Pregnant at 64? Ha ha!
He said the “auras” would be unlikely to be migraine in my case as there were so many days in between seeing one and these symptoms starting. But I am not sure about that.
Bloodwork’s good, urinalysis is good. No lymph nodes up. No fever. No GI issues except the above-mentioned. No blood pressure issues. Eyes OK, ears OK. He doesn’t even think my heartbeat is unusual.
I am beginning to wonder if all this is migraine, or maybe a form of migraine. I didn’t think it was because I didn’t think I had migraine history (until I thought about those forgotten things in past years.) I don’t have a blinding, head-banging headache. I don’t have extreme sensitivity to light (though do notice I often feel a little better when the sun goes down.) Noises don’t bother me too much. I don’t have odd smell perceptions or odd tastes in my mouth.
But this last month I have been seriously wondering if I have some terminal illness, it has been that bad. Come the morning I am a shaking quivering nauseous mess that can’t face breakfast, with a head that feels like a vampire’s chewing on it, and a heartbeat doing a Tango, while pretending to be normal and okay and positive. Sometimes I don’t want to wake up.
Does this sound like migraine?
One of the biggest myths is migraine = headache. The vast majority of my symptoms are not headache-related. Your auras seem very indicative of migraines. Same with nausea and food cravings. If you are not getting the help you need from your GP, I strongly suggest you see a neurologist who knows migraines well. (Note: my GP was worthless – he first told me I had a brain tumor, took a test, then he told me I was having seisures, took a atest, and he said definitely siezures. Then went to neurologist who told me GP was ignorant.) Finally, I feel for your nausea symptoms – I sometimes get nausea and vertigo. Cold pack on my neck and ginger tea (with real ginger) helps me a bit.
100% agree with Scott… for a lot of us, headache is mild or none. It’s the other symptoms that are very bothersome. For me it’s visual aura (sparkles), nausea, aching all over, dizziness, feeling “off”, brain fog. I once asked a neurologist, “if this is migraine, why do I ache all the way down my body?” He said it’s a “body migraine”.
This information is so helpful! It’s frustrating that so many medical professionals don’t know the full symptoms of migraine. I have vestibular migraines and don’t experience pain. Dizziness is my predominant symptom and it’s debilitating. I have constant symptoms for over 14 months now, and i’m trying preventative meds which so far just made me worse. This condition has ruined my life. I live in bed, barely eat because of the nausea, feel depressive and anxious moods because of the migraine which are hard to deal with. I have a host of strange and scary symptoms. I found the best support on a Facebook group for vestibular migraine – definitely didn’t get enough information from doctors who just throw pills at me. I’m relieved to see that changes in heart rhythm are mentioned here, i have felt skipped beats connected to my migraines and so have many others in my support group but hardly any medical professionals acknowledge it as a migraine symptom.
I’m 22 had baby but recently my migraines get worst please excuse my writing but not everyday about 2-5 times a month I wake with a migrain have to get up my body won’t let me rest until it is delt with so I get up take a shit feel cold feel hot sweaty and light headed I then be sick and shit some more (and no it’s nothing I ate) once that passes I have a 2 minuet space to grab my dovay and lay down then the big bit start. It starts with my hands both of them they get pins and needles and start feeling numb then the feeling spreads through my arms legs and face the more it spread the worse it gets my hand will then start to curl in on my self like a claw hand it’s do painful I ask my husband to uncurl my hands and sometimes he can’t move then for me because the are so cramped up on a really bad day my face will look like I saw my death it’s so painful sorry to say but I turn into a disabled person who need lifetime wheelchair but after 10-15 mins it all starts to go like nothing ever happened then I just feel shity the rest of the day. But when my crapms finish the only thing i can seem to eat or drink is a cold chicken tikka pasty and fruit shoots apple are my trigger.
If anyone has the same or knows of what exactly this is please reply. Thanks .
Wow good to find this site. I get what I have heard described as abortive migraines, i.e. I don’t get the headache. What I do get is zig zag lines on one side which come on really fast, and total mental confusion such that I can’t tell you how long the visual disturbance lasts, also my heartrate seems to slow significantly. I just swallow a couple of paracetamol and shut my eyes and wait as I don’t get them frequently I don’t have any proper medication. Strangely enough I also had recently a vile episode of what was diagnosed as Transient Global Amnesia and there seems to be a correlation between migranes and TGA. I thought I was having a stroke and when the doc said “Transient” my heart nearly stopped as I thought he was going to follow with ‘ischaemic attack’ thankfully he didn’t. Having a history of breast cancer twice I am always scared these things are indicative of a sinister lesion in my brain and having seen my breast surgeon recently he said if I get another TGA I must have a CT head. It is so ‘good’ to see other people having these extraordinary symptoms.
My proteome seems to have changed. I used to get really tired and would yawn a lot before a migraine. Now I get mad. So extremely furious. It seems that the madder I get, the worse the migraine will be. If I learn how to calm down, will the migraine not come? Even though it is part of the proteome? This has to stop. I love my husband and he is usually the one dealing with my temper.
I have had migraines for as long as I can remember. When I was 4 years old I would beg my mother not to put on perfume because how bad it made me feel. Recently, my migraines have gotten worse. Odors are still the most common trigger. Some odors cause almost immediate migraines. They also make me incredible angry. Other triggers, like food, lights flashing, glare, high alttitude, barometric changes, etc cause migraines, but not as immediately or as severe or cause the feelings of anger that odors cause.
Even though I have talked about this with every doc I have seen (and suggested to a number of them that I thought I was having migraines), it was not until this year (I’m now 54 years old) that was I “officially” diagnosed by a neurologist. I can’t even list all the diagnoses I was given until then (or the long list of meds I tried). Because I have a long history of suicidal ideation, most of the diagnoses I was given were related to either unipolar or bipolar depression. I might also have one of these, but IMHO migraines are really my primary diagnosis.
Does anyone else have such a sensitivity to odors? Even if a smell does not bother me, I am just plain hyper sensitive. When I lived in the mountains, I knew there was a forest fire and was able to pinpoint it before anyone else around me even noticed the smell. I notice gas leaks before others. Walking down the street can be a nightmare; a blooming plant can send me into a tailspin. Cigarette smoke. Formaldehyde off-gassing. Things that others do not even notice and I am screaming with pain. And anger. There must be some direct link from my olfactory bulb to my amygdala – anger, fear, and aggression all get immediately activated by trigger smells. I don’t hug people anymore because if they are wearing an odor I want to punch them and will feel that way until I wash the odor off me. I had a MRI a couple of months ago because my PCP said there was no way a migraine could cause all this and he kept saying I must have a brain tumor (I was going blind in one eye more regularly and also having huge problems with disorientation and forgetfulness, so his explanation was at least plausible) – anyway, most people talk about how loud a brain MRI is. Well, it’s nothing like the smell I experienced. I could smell burning plastic, burning metal, and all sorts of other unidentifiable odors. And once I get a migraine due to smells, all my other senses go into overdrive and I have symptoms that are more classic, like photosensitivity, auditory sensitivity, skin/touch sensitivity, nausea, fatigue,….
Does anyone else have sensitivities to odors like this? I would be grateful for anything you can offer. Thanks, and I wish you a pain-free day!
Hi. I am 41. I have been getting every symptom of an aura migraine since I was 12. I have had 3 different diagnoses for the same symptoms. I was told it was lack of oxygen, hypoglycemia, and finally they did an MRI last year and told me that it is an aura migraine. I am having one right now. I feel so lightheaded. I am on Imitrex but it doesn’t help. I am going to ask him to put me on maxalt.
I started getting migraines from the age of 11, aura, intense vomiting, sensitivity to everything, half of my body would go numb, couldnt walk, couldn’t talk, couldn’t lift my extremities, intense stomach pains- basically everything that can go wrong with you just outside of having a stroke, about 6-12 times year. Had all kinds of medical procedures done, sure enough nothing wrong. I started seeing a CRANIAL OSTEOPATH when i was 16. I put that is big letters because i want people to see it- i saw her for about a year. migraines GONE. im serious, THEE most debilitating thing in my life, ruining my life- gone. I lived in the western suburbs of Chicago. she still practices. i think she is located in Deerfield now i forget her name because its been 15 years. Recently i had my second child and was prescribed Zoloft for post partum anxiety, took my first pill and bam- migraine. cut my pills in half and took those for several weeks no problem, the first day i went back to a full pill- another migraine. So i went off of Zoloft thinking it wasn’t ever going to happen again. ive had like 5 migraines since ive been off of Zoloft for 2 months. i have a family now, i have children to take care of now, how is this possible?! How can i be getting migraines again after i thought that i had beaten them. How can a little pill change my whole life? Turns out Zoloft can trigger migraines, but even after you stop taking it? Has anyone else had this happen to them? taking a pill that sets off their migraines then don’t go away? I don’t live in Illinois anymore so i can no longer see my osteopath. currently making plans to do so in the summer- an entire year away.
Jina, Migraine is a lifelong condition and symptoms can reappear at any time, even if they have been under control for many years. Zoloft might be the culprit, but it could also be the depression, hormones, breast feeding, or some combination of those factors. I recommend seeing a headache specialist, if possible–they’re the most likely doctors who can consider all the different factors and suss out the best approach to stopping the attacks. Your OB/GYN is probably the next best bet.
Hi all my names Laura I am 34 and have been diagnosed with chronic migraine . My life is no longer a life it is hell and I feel family and friends just think I play on it when really I just want to curl up and die when the migraine takes full force I cannot move I have to go to the bathroom with a sick pan can’t even keep water down , hot and cold sweats stomach upset , full body ache and total exhaustion . I have been given topomax but as alot of ppl on here have said it makes you feel awful I also use the sumatriptan nasal sprays which used to help to a certain degree but now does not even touch the sides I am in bed for 3-4 days straight feeling like I am actually dying and I have three little ones to care for and I can tell my partner is getting fed up with it all like I am playing on it . It’s so nice to find out that I am not alone thanx to all that have posted on here and good look to us all with lose disgusting disease
i have migraine it comes to a head and it goes to neck, shoulder, heart and hands…… i ‘m facing this problem since 1 yr . pls anyone can help me ……..
Just wanted to mention that for my older sister and I, our main trigger turned out to be cigarette smoke. Our Dad was a smoker, and my sister went straight from living with him to living with her husband, also a smoker. When her husband finally quit, no more migraines! I didn’t realized that cigarettes were the trigger until I went from living in my own house to traveling for work and living in hotels. If I got a smoker in the room next door or upstairs — migraine! Thanks to anti-smoking laws — and living in my own house again — I rarely have them. When I do, it’s usually due to dehydration or bingeing on licorice (raises blood pressure) or grapefruit(lowers blood pressure).
I’m a 50yr old woman who has had ice pick (I.P) headaches for the last 8yrs. About 2 weeks ago I have been experiencing frequent I.P headaches in my left eye brow region. Followed by eye twitching and now my left cheek is twitching as well. It comes and goes throughout the day with or without a headache. What’s wrong with me?
Virginia, please consult your doctor. I’m not a health care provider and cannot give medical advice. Only your doctor can answer your question and will likely require a physical exam.
Hi- have you been tested for Vitamin & Mineral Deficiencies? Particularly D, Magnesium, A, & B group. Please don’t rely on verbal “normal” but get the actual numbers & do some research instead, as US normal is way below the normal of healthier countries.
When testing for B levels ask for the more accurate MMA test. Brands I currently recommend: Pure Encapsulations, Thorne Research, some Vital Nutrients.
Good Luck & Heal Well.
Migra-Eeze supplement might help you…
I do apologize for the typos. P.S. I love the title. I have corrected many on that with my reply, “It’s not a headache, it’s a migraine”.
Wow! I see I am coming in late on this one. A very interesting read. I too have suffered severe migraines since, well as far back as I remember, before my mom sent me to school at age four. It’s been a complete disaster and devastation to my entire life. And to my children. I noticed only once hrte but haven’t read all the comments and I intend to. With mine I always vomit, for hours upon hours. So hard, to where there is nothing but bile the reflux to vomit won’t stop. This adding far more unbearable pressure into the head of pain already so unspeakable. I too get jerking of limbs. As with every other single symptom mentioned above. We always know when it’s coming, knowing how much time you have to get home is another question. I have read by the MAGNUM an national medical migraine research association as have spoken with the president. There are many different types of migraines. And all ate related to chemicals in the brain. Some put out too much serotonin and thus a total negative and depletion of this chemical which then rebounds by the brain pumping out something else to try and make up for the lack thereof. So on and so on goes the chain reaction leading up the the tragedy of a perfect storm. Also, I too have lost much of the muscle in my back due to too many migraines, yet the pain feels as if they’re all there. Back, shoulders, neck and never muscles alone but the spine and neck. I believe this condition has led me to osteoarthritis and other conditions I won’t bother you with. After spending so many x amount of hours in s bed for fifty plus years it makes sense. This is why one woman mentioned full body reaction, (I believe she said it vaguely different, however) Today is day five after suffering for three days with migraine and two vomiting, I’m very dizzy and weak today. My stomach will not digest anything and I it’s so difficult to keep liquids down. Sumitriptains do help if it’s that type of migraine and I catch it soon enough, however like a bulldozer it is inevitable to hit. Just a matter of a day or two. Too much of anything is never going to help in fact will only result in a migraine on a higher level of pain. I am not sure why I’ve or any of us have been chosen to suffer these by God but I believe it will somehow makes perfect sense someday. I do know many, many people are going to be accountable for their treatment and judgement on us. Even Dr.s, especially Dr.s. for refusal to except the truth and we being in horrendous pain ate treated horrible by Dr’s and their perspective staff. One does not bring on a migraine by herself. One does not wish to be in the dark for days on end. One does not wish to vomit endlessly. I refuse treatment of a neurologist, I’ve had hideous experience with many and refuse to switch meds again. Or be taken off one or two I know work. There will most likely never be an actual cure to all migraines but we must use what works for us even if it is, a little brief while longer before the next migraine. The cocktails they use in emergencies are a joke. I hate these with the passion, I feel as if I’ve been put into an induced comatose but can heat everything and still feel the pain. I believe they truly know this works because we can no longer express pain in any fashion. Not even lift a hand. Bit they expect us to drive home while still in pain and now hardly able to hold the eyes open. I too have had my fair share with husbands not willing to live with the disease. Therefore, I have given up on that as an option. I do not prefer to be alone and lonely but it’s better than dragging someone else’s life down. So many people out there are normal in the respect they can plan ahead and know they will enjoy the time. We cannot make pkans.. Ever. It’s a disparaging life. Yet, how am I so thankful for so much. I know many people in this world suffer hideously. And I am sorry for that and for all of you my friends who suffer this disease. I pray for each of you , relief. Thank you for this wonderful message dear writer. And for all your comments.
I too suffer debilitating symptoms, headaches,sweats, dizziness,balance trouble,jittrry,anxious,depressed, disoriented, backache, fluid retention, visual spots,floaters,legs ache,weakness,fatigue,can’t move without vertigo,muscle spasms in back,ect. Looked at as a hyperchondriac by many…. I get these 28days a. Month. Sensitivities to medications, hormones therapies,ect. Nothing works for me…. I suffer bad ….
I’ve had migraines for almost two years but our insurance won’t allow for me to see a neurologist about them, let alone take any medications for them. Does anyone else experience full body pain or pain in their back during a migraine? If so, how do I ease this pain? Heating pads do not work and massages cause agonizing pain. I desperately need advice please.
I do. Sometimes my back, neck, head. Sometimes my whole body. I seen a neurologist and he said they are called body migraines. He offered some med (cannot recall the name) which makes you an air head so I opted out. He said the next med to try for migraines is antidepressants. I haven’t been back. I find that over the counter pain meds don’t do a thing for me. Ice or a cold wash cloth and stretching helps a little.
I get neck pain before all my migraines except ones caused by odors (which happen immediately). Cold packs help. Accupuncture helps. Yoga every morning helps. Massage helps (sorry it does help you). One thing I have learned to do is lay down with cold pack on my neck when I feel it coming on. This often minimizes the migraine intensity.
I’ve suffered with migraines all of my life. Headaches as a child evolved to a diagnosis of migraine during puberty. I am now a 41 year old woman, and would very much like to say how migraines and their symptoms can evolve throughout a persons life. As a young woman I had classic migraine. Unsurpassable pain and all the typical symptoms before it hit. But now I suffer them in clusters. Am rarely sick. And all my most of my typical warning signs have changed. … I now get tremendous facial oedema and pain behind my ears that is terribly painful. … I thirst, and do still crave certain foods, but it is an on going battle. Migraines are a terrible condition to suffer with, but always listen to your body. You may not always experience the same symptoms/triggers or pain solutions for all of your life. Believe me. Migraine evolves as you do.
I would like to know if anyone has experienced anything like this: for a phase in my 20s I had migraines with aura and pain at regular 3 month intervals – exactly to the date. I put this down to hormones and after about 5 years they disappeared. Now they are back and I am in my early 50s. Still aura and pain but more aura and from one a year to a sudden increase last year to one every few days for a couple of weeks then another year gap. No obvious triggers but for some reason I put it down to beetroot (was doing a lot of juicing at the time including increasing the beetroot which was one of my favourites). Still doing the juicing but no beetroot and they seemed to stop. Still no beetroot but two migraines three weeks apart with the last one a fortnight ago. Fairly typical for me with more aura than pain but since then my memory is not what it was. Can’t remember the names of people that I know I know. It’s becoming embarrassing at work – can’t help but think about dementia etc. Can the after effect of a migraine cause this? I know they are related to brain activity but for as long as two weeks after?
I exercise hard every day and have a very healthy vegetarian diet. Don’t smoke, maybe one drink a week if that. Any ideas please?
Sue, please see your doctor. Lingering memory effects would be unusual for a migraine hangover, but it could be what’s happening. The only way to know is to get a full check up from a doctor. Even if your memory issues aren’t tied to migraine, that doesn’t mean they’re caused by dementia, but only a doctor can tell you what’s going on.
Hi Sue… Your scenario is very similar to mine. I first got the migraine with aura in my 20’s after the birth of my kids. It would happen 2 or 3 times a year. Then nothing until my mid 40’s. Perhaps there is something to the hormone theory. Are you by chance going through perimenapause?
My headaches are not very painful when I have these. I will get the aura which lasts 15-30 minutes, followed by a slightly painful headache and just feeling “off” or “weird.”
I often have periods of brain fog, memory problems, concentration problems but not related to the migraines with aura. From what I’ve read, those are common with perimenapause?
Could be vitamin B- group deficiency dementia. You may want to be tested for all vitamin & mineral levels. For B requesting the MMA test is smart- better than most widely used tests. & get exact numbers & do due diligence as a verbal “normal” carries little weight in US as our normal is often a healthier country’s “dangerously low”. Supplementing with high quality, holistic doctor recommended supplements is vital. My docs have recommended Pure Encapsulations, Thorne Research, & some Vital Nutrients.
If you make the request for testing your doctor will hopefully comply. Usual deficiency suspects with migraine- D, Magnesium (try Mag Glycinate or Citrate), B group, A.
Migra-Eeze has helped me on occasion.
The person going by 🙂 should be more considerate before suggesting that anyone posting here could have dementia of any kind, vitamin b deficiency or otherwise.
My daughter has had migraines since middle school. Just one every now and then. She is 23 and has been suffering for 6 months. She started having daily headaches and migraines with occasional dizziness and vertigo. Her primary Doctor put her on 80 mg of inderal. Which took away the pain but her dizziness and vertigo stayed. In fact she has daily dizziness and vertigo every day that is constant. From morning until night. She went to ENT and neurologist. ENT has ruled out that problems she is having is related to her ears. Neurologist thinks maybe migraines with vertigo but it is uncommon to have the constant dizziness like she has. She tried Valium and did not help. She has tried nortryptaline and made her worse. Next medicine is topamax. She can’t drive and she stumbles often. Would the inderal cause the constant dizziness? Her blood pressure stays normal. So it’s not low blood pressure. Could all this be related to anxiety and stress. She has been under tremendous stress at work. Her new job is when all this started. Could anxiety and stress be the cause of headaches and constant dizziness. Any suggestions or thoughts on this appreciated. Thank you. From one worried momma.
I am so sorry about your daughter. My twin sister, who like me suffers from migraines, read your post and asked me to write to you because your daughter’s symptoms are so similar to mine. I will try to make it short.
Up until 2010, I never thought I had a migraine. For years I dealt with bouts of unexplained dizziness and feeling out of my body. About every two years, starting when I was 27 years old, there would come one day when I started to feel slightly off. At first it would last maybe a couple minutes, and then it would get progressively worse. And then it would last all day, for days. I went to a bunch of specialists, did a whole bunch of tests, and nothing conclusive showed up to why I was feeling this way. After about seven or eight months of feeling dizzy 24/7, I was diagnosed with anxiety. Basically I had a breakdown, took Xanax and Wellbutrin, was out on medical leave for three months, went back to feeling normal and resumed my life.
And then the cycle would start again, same pattern, about two years later. I was convinced I had anxiety and agoraphobia (the latter because I hated to leave my house, more on than later).
In 2009 I was 40 years old and the cycle started again. I went to my GP and told her I wanted to get to the bottom of what was causing my dizziness, and she said I was just anxious because I had two small children and my husband was making less money and pretty much left me crying because she was not going to figure out what the heck was wrong with me.
This is where your daughter’s story starts sounding a lot like mine. I tried to get on with my life. The dizziness started getting worse and lasting longer, and I did what I had always done, went to a psychiatrist to get some Xanax, and started seeing a therapist. Same stupid cycle, different year.
This time though, early March, I woke up one day with raging vertigo. My eyes were flicking so bad I could feel them rolling in my head. Went to my GP, who sent me to an Ear, Nose, Throat doctor, who did that maneuver thingy more times than I could count. (And made me feel sicker every single time). I just kept going from specialist to specialist and no one could help me. Like your daughter, I had constant vertigo and dizziness. I had numbness in my hands, arms and legs. My feet felt like marshmallows when I walked, my eyes felt weird, I had constant nausea, could barely think. Bad vertigo, althought better than at the beginning, lasted over a year. I worked for eight months that way. I decided to take a medical leave after losing all sense of driving two days in a row, and recognized I could have killed myself and others. I was exhausted and sick and could no longer keep up.
It took over a year after that to sort me out. What worked for me, after much trial and error, was amitryptiline (a tricylic antidepressant). Amitryptiline made me feel like someone had turned on a light in me head and I could think again. Perfect med? No, but it controls my symptoms and lets me live pretty well. I also use dihydroergotamine shots as an abortive (again, old medicine but has worked wonders). I still have Xanax for anxiety, and it helps with the dizziness. Not quite sure why it works, but I do know they will never give it to patients long term because it is addictive.
Here are some things I learned, and maybe can help you and your daughter.
1) Light sensitivity might be an issue and the person not know it. I would suggest your daughter try migraine glasses. I had no idea how light sensitive I was, and how sick light made me, until I put on migraine glasses and my eyes felt rested. I am not saying glasses are a miracle cure, but they can cut down on one of the things causing malaise. I still use them every day.
2) True, having constant dizziness and vertigo is not common, but that does not mean migraine can’t manifest itself that way. I always thought my anxiety and depression were what made me dizzy, but that did not turn out to be the case. sometimes it is not that easy. Anxiety can cause migraines, just as migraines can cause anxiety, so in my opinion this could be considered a “what came first, the chicken or the egg” scenario.
3) Just in case though, have they checked for other possible causes? There is a condition called Meniere’s that presents symptoms similar to a type of migraine called basilar migraine, which also is accompanied by vertigo. Not sure if doctors have explored that possibility.
4) Migraines can be triggered by stress and anxiety. So yes, her new job might have started a migraine cycle. And it can’t help that she is feeling this sick and trying to do ANY job. Even if the job wasn’t stressful, her body and mind would be under a lot of strain from trying to function at a high level when she feels this sick. Ideally, she might need time to rest from work and concentrate on healing, although I understand that is not a choice many people can make.
5) There are different types of migraines, including silent ones (absence of head pain) and even the migraine people consider “normal” can be accompanied by very different symptoms. She can have a raging migraine and not have a headache, or maybe she can feel head pressure that she wouldn’t even think is a headache because her other symptoms are so much more intense.
6) Meds can cause dizziness. The hard thing here is that your daughter is dizzy all the time, so even if the Inderal was making her dizzy, it would not be fixing the underlying problem. If a med makes her dizzy as a side effect, then she is just exacerbating the problem that has her going to the doctor in the first place, so that particular medicine would not be working for her. I think I was so desperate to have something fix me, that I lost sight of that simple truth.
7) Be an advocate for your daughter. Do not settle for a crappy doctor. Do insist on changing meds if after a reasonable period of time said med is not benefitting her, or the side effects of a med are too much for her. Treating migraines can be hard, and just as with any other illness, it can be even harder to treat when your case is not a text-book case.
I hope this makes sense. I hope this helps you and your daughter. I am thinking of you both and sending her healthy vibes. Best of luck. Let me know if I can do anything to help.
I suffer from most of everyones symptoms except no seizure, here was the cure. The muscles around your spine are stiff, you need a chiropractor treatment to loosen these muscles so they arent stiff and putting pressure on your spinal disk compressing nerves. Once your spine is popped all over up to the neck and back muscles loosened, your headaches, breathing issues, migraines, urge to urinate migraines, have to poop migraines, eye pain etc etc etc will start to stop permanetly.This has nothing to do with back pain. Its life in the USA.
Hi all, I know I’m late to the party… I have read through the syptoms and everyones comments… I get the worst migraines, where I can actually feel my veins in my head throbbing. I ad the best Chiro (awfully expensive though) who managed to alleviate the symptoms fairly quickly. I moved away and haven’t been able to find the same relief from another Chiro.
I have a stuffy, congested nose, water retention, nausea, cravings for sugarry foods and obviously the worst pain ever!!! I cant quit my job and thus use a migraine cocktail (muscle relaxers, pain meds, nausea meds and something that “opens up” the erteries all drank together) up to twice a day whilst having these headaches.
I usually get headaches around month end (stresfull time at work) and whenever I have emotional problems (figts with my partner).
A general pre-cursor for me is also “I haven’t had a headache since..”
Does anyone know of something that “fixes” this, not only treats the symptoms?
I’ve had what I’ve heard called classical male migraines. That is, an aura followed by a headache but not one of the intense kinds many people mention. It’s a more general temples/eyes/back of the head/neck/shoulders ache that lasts a day or two following the aura. I’ve had them my whole life. In the 90s, I began having the aura daily and sought medical treatment. Diagnosed with migraine. Tried all the trigger foods, all the afore mentioned drugs. But nothing worked. The cluster receded and since then, like before then, I might get a dozen in a year or none.
As I’ve aged, I’ve grown to recognize signs way before the aura. Irritability or sentimentality. A noticeable and subtly sudden shift to the negative. But I discovered another sign I had never considered. I was playing racquetball (40s, relatively healthy, some arthritis, back surgery) with my friends in a court that had a viewing balcony. The ball bounced up into it and someone had to climb the nearby flight of stairs to retrieve it. I volunteered. Suddenly, as I rushed up the stairs, I realized I had zero pain – anywhere in my body – it was electric and wonderful. I felt like I was a deer on the moon. I bounded up those stairs and paused to just appreciate the absolutely most energized and pleasant feeling I’ve ever felt. I bounced back down the stairs like a teenager and returned to the game. Within 5 minutes, there came the aura.
Then just in the last 4 or 5 days – maybe more – I have had this unusual (for my cantankerous self) sense of good feeling, a sensation just this side of euphoria. I even joked at first to my students, “Uh oh…I’m in a great mood. I’m going to have a migraine.” But the aura didn’t come. And the feeling of well being continued for days (as did stuffy/runny nose, neck ache one day, and other less pleasant signs that the euphoria allowed me to discount).
I forgot about any impending migraine and began to be excited about my new “normal” good mood. Then this afternoon while teaching, I was talking with students and noticed a missing part of one of their faces. And boom! It all came clear. And the aura did its thing. And now I have the head/neck/shoulder ache. I don’t enjoy having these, but the sense of joy this time was almost worth the 48 hours of flu-ey feeling. Honestly, I would pay money to feel the joyful mood that sometimes comes before a migraine – if they could market it without the migraine!
I have had a migraine for five days straight I have tried everything to get rid of it. My arms hurt I have loss of apetite and strength has dissappeared please help me should I go to hospital or are these symptoms normal with a migraine
Christopher, if you haven’t been diagnosed with migraine or if these are unusual symptoms for you, please call your doctor. If your doctor is unavailable, you should go to urgent care or the emergency room. The symptoms aren’t necessarily cause for alarm, but anything that’s unusual for you should be checked out ASAP.
Like some of you, my migraine symptoms are varied and don’t always include remarkable head pain. There are times I have difficulty accepting that they really are migraines, even tho my neurologist says they are. Reading about others’ experiences is really affirming.
This time, for example, I’d had a couple days of feeling mildly flat emotionally, not quite interested in anything. Then a day or so later a feeling of just being “off” in my brain–almost confused but not quite… (that symptom comes on rapidly). I became sensitive to noise– silverware clattering was extra loud, paper crumpling sounds were distorted, my nose was stuffy, my eye was puffy (upon waking). Vague headache and neck stiffness ensued…. That night I had to get up to pee several times… The next morning I felt as if my brain was still asleep, and I had a fatigued feeling all day. My head felt pressurized and as though there were waves of pressure pushing out from within my head. Pain wasn’t severe but it did ache. I felt chilly. My nose stayed stuffy. My body felt somewhat achey too. Ibuprofen and extra strength Tylenol didn’t do much. At bedtime I had a round of ear buzzing in both ears. (Sometimes I’ll get a brief blast of ear noise in one ear. I can never tell if that’s another migraine coming on or one winding down). Also last night I had to take a couple quick trips to the bathroom for minor digestive urgency…
Today, belly still feels a bit unwell, the fatigue has improved dramatically and the body aches are easing too. I’m having some brain-fog, as it feels like my brain is wearing a sweater or something. Noises are a bit distorted again. I’m having head pains that hop from temple to temple but don’t last. I’ve no idea if I’m postdrome or prodome!….Last night a new weather front moved in, so I’m wondering if that can be a trigger for me….
What I don’t experience often is sensitivity to light or visual auras. I have had visual “color-shows” before when my eyes have been closed, and a flash of light waking me from my sleep once. Sometimes I feel like an outlier. As I said, it’s hard to accept that such a collage would be “migraine” but when I read about others here I don’t doubt that they have migraines. It’s just hard to believe it for myself.
Anyway, great topic. Helpful and affirming and very appreciated. 🙂
Im presently mid-migrain hang-over, so please bear with any spelling or wording difficulties. These stories sound so much like my own. For 10 years I’ve suffered weekly debilitating migrains. Metoprolol Tartre 50mg helps me somewhat as a preventative. I thought it was very important to share that I reacently discovered migrains are a common side effect of the NUVARING. 11% of users reported this side effect. THATS HUGE! I have been on the nuvaring for 10 years… the same as my migrains. I will be getting off hormonal birthcontrol ASAP and hope the migrains go with it.
Well…where to start? I’ve been reading through the past comments, and it’s great to find people who are going through what I am, who understand! I’ve learned so much just from reading the comments.
Everyone has been doing their stories, so I guess I’ll join in. I’m 17, I was diagnosed in September/ October of this year, after finally dragging myself the doctors following a long time of auras/ pain happening but ignoring/ not remembering them. I finally went to the doc after dizzy spells happened and I fell in college, then the pain hit about an hour later, it was really scary.
I tried Sumatriptan as an abortive, but found that I got a really heavy/ achy jaw, and that the exhaustion following a Migraine came on a lot faster.
The doc then put me on Zomig instead, I still get the jaw problem, but nowhere near as bad.
I’m now on Topirimate (Topamax) as a preventative. I was on 25mg for a week (felt fine, only had one migraine that week that was a 4/10 on the pain scale), then had my dose increase to 50mg. I felt like a zombie. I’ve adjusted to it now, but I seem to forget little things (did I put the pen in the box
It’s been interesting reading various people’s descriptions of their migraine attacks. Over several days, I’ve been getting alternating partial numbness, usually on the left arm, left leg, with tingling that is felt everywhere from head to feet (or at least lower legs.) The tingling can be painful and feel like burning on the skin. My thighs also feel painful when they are touched (is this allodynia?) but don’t seem to hurt from motion. The pain seems to be more on the skin or a surface pain rather than deep muscle pain.
Please consider having a full panel of tests for vitamin & mineral deficiencies run when you go on the 10th? including MMA for B defic. as the test usually run is not accurate.
Please arrange in advance to acquire the actual number results. Don’t rely on verbal “your levels are normal” as a U.S. normal is anything but in some more in-the-know countries! One needs actual numbers and to do their due diligence with research.
I predict you’ll find out you have a vitamin A, D, & B, and Magnesium deficiencies- as your symptoms are consistent.
Brands I use which my allopathic & holistically educated doctor recommend:
Pure Encapsulations~ magnesium citrate, magnesium glycinate, B w/ PPQ, etc.
Thorne Research~ Vitamin D/K2 (liquid). A & D from either great brand.
Please note: one MUST take Magnesium if taking D otherwise migraines & heart challenges can ensue.
Good Luck & Good Health!!!
Thanks Cathy. Went to dr Wednesday she put me on Topamax and 30 days of Xanax because I am so neuroligically fried. I do have an appt on Tues, 11/10 to rule out other things like possible Mineiere’s Disease.
With some of the symptoms you are having (vertigo, nausea, ear ringing, etc) you might want to rule out Meniere’s Disease. My husband would have attacks similar to what you describe and it took him months and many doctors to figure out what it was and what to do about it. He finally ended up at an ear, nose and throat doctor and was diagnosed with this. He was prescribed Papaverine to take daily and never had an attack again.
Thank you everyone on this blog. About 3 years ago (I’m now 48) I started randomly waking up and go to sit up and be spinning so badly i would fall over or fall into things felt like i was tipping over. This would happen 3-4 times a year. Now i wake up and still feel the dizziness but also extreme sensitivity to light, sound and motion it just paralyzes me with nausea alot of pressure and ringing in both ears alot of ocular pressure behind both eyes. I always thought i just have to curl up in a ball in a dark room and try to sleep through it. Always thought it was vertigo or inner ear. Just finding out this is probably migraines. I always treated it like you would a migraine but i never had the the severe headaches. Even though i am very debilitated by my symptoms i never really thought, migraine. I have linked my episodes to barometric pressures and changes in the weather. I now get these attacks many times a year. The last two attacks I’ve started noticing all over tingling in my whole body along with extreme body fatigue along with all the other symptoms. COMPLETE SENSORY OVERLOAD. It seems each episode is lasting longer and recovery is taking longer. Any advise or comments would be greatly appreciated.
You may have a disorder called Meniere’s disease. My husband suffers from it and has had very good treatment with medication. See a specialist. Symptoms can include: vertigo, nausea, ringing in the ears, vomiting, headache, fullness in the head, sensitivity to barometric pressure and others.
I have both daily chronic headaches (tension type) and migraines with aura. The 1st time I experienced the aura, I was in my early 20’s (I’m 46). I had no idea what was happening. I began seeing sparkles and in the course of a minute or two, I couldn’t see anything other than a little bit of peripheral vision. Being I had no idea what was happening, I figured I was getting ready to pass out. Luckily I was at home so I layed down for a few minutes. It passed in about 15 minutes and I went and ate some sugar (thinking it was a low sugar thing, maybe). The next time it happened, my husband suggested eating some salt. After a few years of this happening maybe once a year, I got use to it although I didn’t know what it was. It would always be followed by a mild headache but leave me feeling drained and “off”. Years later and the wonderful internet, I was reading about headaches and stumbled across “Migraines with aura”. I thought “WOW so this is what this is!” I don’t know what causes them for me. A year ago I finally went to a neurologist for my chronic daily headaches and was told that they too were basically migraines as well. I told him that it really wasn’t just my head, it had become from the back of my head down to my rearend. He said it is called a “body migraine”. Gave me a prescription for Topamax as a preventative but once I got home with this miracle bottle, I looked up the side effects and decided the air-head/dumb feeling wasn’t for me. He said the next thing to try on me was an antidepressant. I never went back. I’ve tried B complex, D vitamins, multi vitamins, more sleep, stretching and exercising, different pillows. Nothing works. I get tired of people who have an ‘occasional’ headache, say that they know how I feel. They do not. I also get tired of doctors jumping to the conclusion that I am having rebound headaches from over the counter pain pills. They say do not take more than 2 times a week. I do not. The reason I do not is because they have ZERO affect on my headaches. I will say that after reading all the comments, it makes me realize that it could be so much worse! My sympathies with you all!!
I have had Migraine headaches since I was in Elementary school. I had it so bad that I had to lay down , could not work I had just about all the symptoms that were mentioned .Now since I am taking Ibuprofen liquid right away when it starts , I can keep working. For me its the best medicine I ever had for Migraine.
All the best !
I have been having migraine headaches for 3 weeks now I have blurred visions I have hard time concentratingadd a CT scan blood work everything was normalI just have this headaches on my sidesometimes I have heart racing sweating constipationI get really light headed dizziness sometimes I’m tired the veins in my head hurts my side by side forehead my foreheadthey said everything was normal just going home they gave me prednisone but I finished that now everything’s coming back again having send me to a specialist yetI just want to be normal again I don’t know what to do do you guys have any idea what’s for me to do I have two little kids so I need to take care of I’m just tired of being sick my whole family told me they had migraines before it’s normal but my sister she takes medication for headaches and it goes the way so I don’t get why mine is not going away it’s just frustrating so is having a side pain and then I went to see my OBGYN for it and she told me I had IPspeople that have constipation problems and diarrhea whatever whatever but I’m going to see a specialist for that now but I need to see a specialist for my headaches and my doctor she’s not sending me to a specialist or neurologist so I really don’t know what to do I leave in Minnesota Wilmer and I was wondering if anybody that knows any specialist or religious that I can go through my stuff without a referral thank you
I just “caught up” on all the posts here. WOW. As many of you have said–I don’t feel alone anymore. I related to someone’s reaction to her migraine being called “a headache.” When a doctor (or anyone, for that matter) labels my migraine as a headache I am always surprised–and reminded of how many others must view this condition.
Anyway, all the best to all of you.
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I’m so glad i found this site, in tears right now. I’m a migraine suffer for over 17 years been on every anti seizure medication you name it. ct scans, mri, blood work all normal. body numbness, headaches, confusion, fatigue and one point i thought i was losing my my mind. I just want my life back because i don’t have one right now.
Reading all of this information makes me feel like I am not alone. For most of my life I thought I had “an inner ear problem”. My attacks frequently occurred in public. I would have about a 30 second warning, break out in a very heavy sweat and then drop to the ground face down and be unable to move or speak for about 1/2 hour – 2 hours – all I could manage was a “grunt” – if anyone tried to move me everything would go black and I would vomit. In about 8 hours the attack would be over and I would just “snap out of it”. I have also had temporary losses of vision on other occasions – as in sudden onset without headache – light sensitivity and “regular” migraines. It is only recently, after discovery these were not TIAs and that there was nothing wrong with my inner ear, that a neurologist diagnosed me with complicated migraines with aphasia. I even had an attack during eye surgery where it was triggered by the intense light – and now know to get an “eye block” for subsequent surgery so my optic nerve doesn’t send a signal to my brain that my eye is seeing intense light. Not one doctor I have ever seen has actually ever seen my symptoms in anyone else – so it is good to know (in a way) that others at least have had similar experiences. I am 63 years old and have suffered with these attacks since childhood. I can even wake up to an attack. My neurologist finally said that the inability to move or speak was “neurological” whereas I just thought everyone who “felt dizzy” was going through what I was going through. Best of luck to everyone reading this information.
Wow. This is a great resource. I had no idea. I had migraines even as a toddler, I remember them. But once I started school, they seemed to go away, until my later teen years. I knew about them, because my sisters and brother would get them, and occasionally, my father. I remember my sister stumbling about with a tight ace bandage around her head, looking like a wounded soldier. My brother would just disappear to bed, and I would see him rocking back and forth, moaning. I felt bad for them, but didn’t understand, or even know that this was not a normal part of life. When my own migraines started, I never had a prodome or any kind of visual disturbance. I would always wake up with one… no warning the night before. It got so I was afraid to go to bed at night, thinking maybe if I never fell asleep, the headache would not come. I would vomit for about 2-3 days, in the horrid pain you all know well. I would lose the ability to speak, accept for a few words like a baby, and my legs wouldn’t work well. Loss of coordination, and I found that I would have short term memory loss and inability to concentrate for about a week.
Thankfully, I learned to associate my morning migraines, to eating MSG the day before. That helped me to eradicate my migraines by 90%, up until the age of about 40. Then they seemed to go away, other than maybe once a year. Ahh, was it all behind me?
I am now 60, and our old “friend” had returned under a new disguise.
These “new” migraines first went unrecognized by me, because I had no idea that my new symptoms were related to migraine.
I have had about 7 of them now, in the last 6 months.
The day before, I seem to start with unusual bitchiness. It is not like me to be impatient or rude. By the end of the day, I feel like something is really wrong, and very pessimistic about life. The next day, my face is oddly swollen, and my eyes are terribly bloodshot. I don’t feel well… achey, don’t want to eat, blurry vision, stiff all over, sometimes strange drumming inside my ears, and not coordinated. Now the final symptoms are what got me worried.
Changes in vision, but then, this strange tiny patch like a “beehive” of activity, consisting of light and dark, sharp patterns. At first, while my eyes are open, it seems a vague patch of blindness. But when I close my eyes, I can see the sharp lines, bright white and black lines, and geometric pieces of all colors, all moving together in a little patch that is growing larger and clearer. The bigger it gets, the less I can see when my eyes are open.
The first and second time, I didn’t know what to make of this!
As the visual disturbance grew to wedge itself across my whole sight, the headache would descend. Right after the headache started, the vomiting began. Profuse sweating and terrible chills. Yet the headache did not remind me of the migraine of my younger years. It did not seem as severe or long lasting…only (“only”) 24 hours. Leaving me exhausted and disoriented mentally, I need a couple of days to recoup.
I never had the alien visual disturbances before. I really didn’t think my new collective of symptoms were migraine, because I didn’t think it’s symptoms would change at 60 years old. I don’t know why they have returned to my life, and they seem to be getting more frequent. I guess I could try and see if there is a new offending food, and hope I can get control again as I did when I discovered the effect of MSG related compounds when I was young. I hope so.
Now that I know the other things that can accompany migraine, I truly sympathize with others who have these other symptoms, and some that sound worse.
For whatever help it may offer,
a hot bath with a drop or two (not too much) of real lemon essential oil in the water (submerge the back of your head), and baste your forehead with the washcloth. (lemon is the only scent I can stand, but it seems to help a little). Put on a big cotton teeshirt, and bring a COLD washcloth back to bed with you (and something to vomit in). I still have to get through the tunnel, but the cold cloth on the head does seem to help a little, and it helps to block out light. We will take any help we can get, right? When you get that feeling like it’s beginning to pass… a little COLD coconut water helps me. Wait a while in between sips. It is good to hydrate as soon as possible.
So sorry to you guys. I know what it’s like.
I am relieved to find out that I don’t have a brain tumor.
All the Best.
I so identify with your comment! I had horrible migraines through my 20’s, but during my 30’s I had so few that I categorically decided that they were over. Now in my 40’s they started again. The symptoms are so radically different that I didn’t even consider they might be migraines until my twin sister, who sadly has them much worse than me, finally laughed at my denial and informed me that once a migraine sufferer, always a migraine sufferer. 🙁
I have hemipolgic migraines. I go paralyzed on 1/2 my body. Blurred vision to complete loss of vision. I know it’s coming on due to the tingling in my face. I’m on Topamax. I haven’t had one in a long time. It happened while I was driving. I was able to stop and put the car in park by my mobile side but sat in an intersection blind for about minute.
Hi Ann. Good luck with the Topomax. I did a 6 month trial on it and, while it did relieve the light sensitivity and I had no attacks, unfortunately it literally “made me stupid” and took another 6 months to gradually get off of it. I remember one incident when I was visiting a friend. I couldn’t find my car keys as I was leaving – only to discover that, not only were they still in the car, but I had simply parked and walked away without even turning the ignition off. So be very careful on that stuff. Best regards, Mary.
I get dizzy with Nasty anxiety days before any sign of headache I also get weak arms and legs. It’s awful I feel like I’m going to dye doctors couldn’t find anything wrong with me I felt so alone I still find it weird that all of these nasty things started happening 5 days before the headache came now I just need to find treatment that doesn’t have bad side effects I also take lexapro so any ideas would be helpful
Okay ive been a migraine sufferer for probably close to ten years. I am 27 years old, in relatively good shape, im a server and go to college for nursing. I eat a pretty healthy diet and get adequate exercise. I have a history of a blood clot that was in 2012 in my upper R arm which I was treated for 3 months with Coumadin. During this time of treatment in 2012 I remember specifically standing up one night and seeing a blinding white flash of light, almost immediately got a pounding headache and felt the left side of my body give out. then a pins and needle-numb sensation took over the left side. rushed to the ER, my mri was negative for hemorrhage and they sent me home. I successfully finished treatment for the clot in 2012 and have been clot free since. had mild migraines off and on very rarily though since this event. About 3 weeks ago I was driving a friend somewhere, having normal conversation, and feeling completely fine, no headache and in a great mood 🙂 as my friend was getting out of the car I was staring, I only know this because she had to say my name multiple times before she left and she thought it was odd that I acted this way. I shrugged it off though, thinking I was tired. almost immediately after this I noticed my left eye jolted up and down very fast for a few seconds causing impaired vbision and also made me feel like my world was spinning. I felt my lips go numb and tingly, then myt face on the left side followed by my arm and leg all at the same time I . then I felt a sudden throbbing pain as if someone hit me in the head with a baseball bat, followed by the continuous numbness on my left side and I still tried to shrug it off that it was maybe a lack of sleep, being that i have a baby at home and hadn’t had the full amount of normal sleep a day or so prior to this incident. so I bit down on my lip to see if I could shrug off the numbness and it wouldn’t go away, I still felt numb and very very unsteady, I was still parked in my car at this time, alone, on the side of the main street. this continued a couple minutes. after I thought I was okay to drive I began to head towards home, still feeling a little unsteady but wanted to get home. I didn’t make it even a mile probably before I developed different symptoms. I still ahd the continual numbness and throbbing head pain, but now I was almost feeling paralyzed on my left side, I knew I was unable to derive so I tried to pull around a turning truck and was barely able to make it into a parking lot without hitting the vehicle., I parked and called 911. I noticed that when I talked to them that my usual, low pitched and very loud voice sounded very odd. it was almost muffled sounding and very high pitched., I tried to clear my throat to make it go back to normal and it wouldn’t. I also started having problems swallowing. the emt arrived after the police officer and asked me questions. I felt very confused and dizzy, they tried to have me stand to get to a strectcher and my legs instantly gave out, I felt like I couldn’t walk. it instantly terrified me and I started hyperventilating and crying because id never experienced anything like this in my life and was terrified. I got to th4e hospital and was told me blood pressure was going from high to low and not constant, I felt the numb sensation still, dizzy and when asked to sit up I almost immediately threw up multiple times. I felt extremely tired and still had severe head pain. the CT came back normal, as I suspected. They kept me for about 2 hours and then released me with the diagnosis of Migraine with Vertigo. my mom had to help me walk to the car because I was so unstable to walk alone when we left. The following two days I had the worst almost non stop constant head pain id ever felt in my life. so bad that I couldn’t sleep, and when I did fall asleep I woke up crying because of the pain. I also noticed in the past few weeks since the incident that I continue to have headaches daily, memory problems (more severe in the past few days than ever) and im very tired, get confused easily and strange burning sensations in my head along with the headaches and also spurratically will get the facial or arm numbness. im awaiting appointments with both my primary doctor and a neurologist but in the meantime I want to hear anyone else view on what may be going on because I am very worried and have been off of work since due to the symptoms I have and am getting very frustrated and worried, any help through advice, suggestions, opinions or sharing of personal similar experiences would be greatly appreciated. thank you for your time.
Hi everyone, reading through this makes me feel like I just met my real family, the family that knows story of my pain
I have been suffering from migraine since I was young say 13 years, being an African living in Africa everyone concluded that am being bewitched, I tried all traditional medicine and failed unti I discovered internet
Now I do suffer but its a mild one because I now know what triggers it, I do avoid everything that is known to trigger this torturing headache, and the list is long to a point that one can think its almost difficult to live a normal life
Beer, coffee, tea,coca-cola and everything with caffeine is a no no but most importantly stress and hard labor is the main cause according to me
I don’t go near where there is a sharp sound like panel beating area,if you want a big clap then drop a plate next to me,these are some of the things I discovered that they have been causing migraine
Having a diary where you can record everything starting from what you have eaten to financial condition is more important
When am broke am likely going to suffer
Once again thanks for your contributions I have learned that am not alone
I have had Aura Migraines since I was little, I also remember having a few strange seizure like episodes while at a roller rink. I would collapse onto my back whenever the strobe lights would turn on, though I was an excellent skater, I didn’t skate at the rink anymore.
Not only do I have migraines but I have amazingly vivid dreams, I wonder if anyone else here has really real dreams and nightmares.
I did not get them as frequently when I was a kid, but wondered why nobody else was struck down with as many “stomach bugs”, that is what I knew them to be.I would only get maybe 2 a year.
I began really suffering with chronic Migraines at around 13, and then a gap then from 19 years old, an Aura Migraine 2 – 3 times a month.
I read this amazing book by Oliver sacks ‘Migraine’ only a few years back, when I was 25 or so, when my migraines started to take on new, more serious symptoms.
I recall sitting at a computer and suddenly feeling really flushed, sweating in the face and wanting to rip the monitor off the table and throw it against a wall. I almost couldn’t control my unreasonable rage.
Then I felt a strange sensation like pumping thick hot liquid through the back of my neck into my brain and a hot prickling sensation, but it wasn’t like Whiplash.
I felt really cold suddenly but was still sweating and partial vision lost.
It was such a bad headache I only remember fragments of what happened after it.
Unlike some fortunate people I have read about, my Migraines appear to be upgrading every few years adding new symptoms, longer in duration and more intense gastrointestinal issues.
I am now 31, and suffer days of gastrointestinal problems just before an Aura Migraine hits. I was diagnosed with a heart murmur recently and have serious heart related issues before a migraine again like its pumping thick liquid, especially in summer.
Sometimes I can get 3 morbid headaches a week, ranging from thunderclaps and sinus migraines with no aura to aggravated pain near the base of my scull, on my neck where there is sometimes a raised lump during hormonal phases and abdominal cramping.
I have an appetite for about half a month.
I have been hospitalized soooo many times for shocking headaches, sometimes I can’t remember things; and put on re-hydration due to hours of endless vomiting.
I have lost so much weight and am unable to put it back on.
From 2013, I was getting Aura migraines at a chronic level, 3 times a week. It was impossible to keep my job. I was constantly tired and anxious that It would strike me down away from home, and it did.
People react fearful no matter how much reassurance.
Hospitals inject with maxilon anti nausea and asprin and refuse to let me drink.
I have begged… BEGGED for water in the hospital feeling as if I was going to pass out, sweating profusely from Aura Migraine Vomiting, waiting for a drip.
I have been wheeled into emergency, had ambulance bills of $2000 and probably a few mild strokes in there.
I can never keep a job long.
I am starting to believe there may be something else wrong with me, but can not find a Dr who will listen.
I was given a lousy dose of sumatriptan for these Migraines which is ineffective for the type of migraine I get, it does nothing to prevent the Aura. The Dr’s I have seen were hopeless and there must have been about 20 of them by now.
The last Dr i stuck with for over a year, he will not refer me for a CT. I have no idea why.
I have had migraines since I can remember, but fewer when I was a kid.
My memory recalls strong food aversions, hours of vomiting and feeling like someone pored hot spicy coffee into my scull and neck.
I have tried explaining the condition to multiple Drs for years and they brush it as ‘migraine’ but I have never had a diagnosis.
When I started getting Aura Migraines back to back in 2013, I couldn’t take it anymore.
I was afraid to go to work or leave the house in case one would strike, and it did at work.
I was feeling more sick. Strong Gastrointestinal issues, sometimes stronger than the headache that were a few times worse than the usual bowel problems.
Food aversions days in advance, extreme weakness and trouble swallowing/eating for a few days beforehand.
I have been hospitalized for severe Migrain multiple times.
I have experienced seizures as a child
I was given sumatriptan which is like a pebble against the type of migraine I get, it is completely the wrong medication and the G.Ps wont refer me to a neurologist or for a CT which is free now.
I am sick of people acting like I am making a big deal out of nothing.
A good 2 – 3 weeks of experiencing this every month, that’s enough.
My migrains are getting worse closer to the end of me menapaus I to wee so so much some where befor and also retain water other times its a scarey place at times with the fast heart and shakes hot and cold and people especially Dr thing you are mad and just anxus it make me so so made at times I am just looking for some help and support
I just wanted to chime in….”Hi, my name is Susan and I am a migraine sufferer”.
I got my first migraine when I was in second grade. The Aura came on and gradually blocked out most of my vision. I was at school and I was convinced that I had spontaneously gone blind. I was crying and throwing up and then the horrible headache came on.
I continued to suffer from migraines on and off my entire life. One of the worst things was being called a faker. Talk about kicking a kid when she’s down.
This is just me, but one thing I figured out (the hard way) was if I get too excited or happy about something, it seems to cause a migraine. Think school field trip, trip to Disneyland, Christmas Eve, I’d be so excited and then I’d get a migraine.
Due to this, I try to modulate my happiness (which sucks!) but it has actually seemed to help. My migraines trailed off and I rarely get them now. Maybe one every couple of years.
I came here today because I got one, for the first time in a couple of years and with it my face seems to be swollen. I went to bed and rode out the Aura. I do this with my eyes sealed shut until I’m sure it’s gone. This tends to keep me calm and I rarely throw up if I do this.
After I slept it off, I got up and my face seems to be swollen. This made me curious about all the symptoms and I found myself here.
Now a days, the bad news is the when I do get a migraine, the aura comes on super fast. I got the aura and my vision was completely blocked within 10 minutes. It used to take about a half hour.
The good news is the headaches are not nearly as painful as they used to be.
Here is what I am sure of (when it comes to my migraines). Sustained excitement or euphoria is a guaranteed migraine for me.
Certain beers cause me to get migraines. Most recently Amstel Light. This may mean gluten is an issue (for me)?
Also, I find it interesting that I thought I smelled smoke last night before I went to bed. I even walked the house again doubling checking.
I didn’t get the Aura until 10am this morning.
If you are reading this, you are probably a migraine sufferer (too).
Sorry to have to meet you under these circumstances.
Susan, thanks for sharing your story. Unfortunately, many of us know what it’s like to be called a faker because of migraine. I’m glad you’ve found some relief, though I’m sorry that modulating your excitement has to be the thing that helps. If you take triptans, you might want to ask your doctor about injections, nasal sprays, or dissolving tablets. They all work faster than pills, so might be able to stop the aura more quickly.
I need help please, I am fourteen and just started experiencing bad headaches. Just a plain ok headache you know, it started on Tuesday, reached its peak on Wednesday and calmed down through the week. I saw a doctor and she prescribed riboflavin and magnesium Then next week I felt a whole lot better and began to continue my daily activities. Then I went to kennywood , rode some by bumpy rides and the headaches began all over again but something new was happening, my left leg hurt bad. But here I am now with the pain surging through my whole left side of my body, not being able to sleep. I never got the magnesium and riboflavin, but I have been relying on ibuprofen
Please contact your doctor immediately. The pain through the entire side of your body is unusual. It’s probably nothing to worry about, but it’s not a typical headache or migraine symptom and should definitely be looked at as soon as possible.
The magnesium and riboflavin are preventive treatments, rather than acute treatments. You’re supposed to take them every day and they will reduce your susceptibility to headaches. Though some people do find relief from magnesium during a headache.
good day all, each time am having migraine I do feel weirdness on my left side of the body and it just started recently, though I have been diagnosed 8 years ago of migraine… what is wrong with me
Masmal, please consult with your doctor about this. It’s always good to get any new migraine symptom checked out. There’s a chance it could change which treatment is best for you.
This list is great, mentioning things I wasn’t sure was normal to migraines or not. I get a very severe, 3 day migraine if I have the smallest amount of caffeine. Literally less than a cup of caffeine will break me a day or so later.
I’ve never had the aura, but I always get the partial vision loss. I’m not so sure if it’s that I can’t see well as much as maybe the pain is SO intense I simply can’t focus on what is before my eyes. I have to have help identifying what I’m looking at.
But the most worrying aspect is that not just my face, but my head swells, and it’s visible. I can see my appearance is different. I also get the intense sense of well being after this 3 day migraine spell. I can move like nobody’s business, SO happy, feeling so good.
I used to get migraines on a regular basis from the time I was 5 years old, but after a head injury they stopped. Now I get them almost exclusively when I drink a can of soda or glass of tea. Light and sound bothered me so much back then, but the pain is so intense now that those things don’t even matter.
Amber, thanks for sharing your story. That’s quite a strong reaction to caffeine, but it’s good you have identified such a major trigger. Blurry vision can be a migraine symptoms (it’s one I just developed this year), but actual vision loss, even partial, is typically an aura symptom, though it can happen at any point in the migraine. If you haven’t spoken to your doctor about it, please do. If it’s more than blurry vision, there might be a better treatment for the times you do get a migraine attack.
I have read some of your comments and it’s great to know that other people share this mysterious condition known as migraine. I have been getting them for 25 years now, twice a month, and I’m still waiting for the day they cease. I never lose hope. The most frustrating thing for me is that other people, do not understand this condition – co-workers, family, friends, etc. And everyone is ready to give advice. I am a very healthy person otherwise. I exercise, eat healthy, sleep 8 hrs, don’t drink or do any drugs. One thing that I recalled happened to me was when I had abdominal surgery some ten years back, the migraines stopped for 5 months – the entire time my body needed to recover from the surgery.
Nettie, thanks for sharing your story. You might find this article amusing, it’s about the five people you meet when you have migraine: http://migraine.com/blog/five-people-meet/. I’m glad you’re holding out hope for relief.
It’s very interesting that they stopped for a while after abdominal surgery. Have you’ve traced back to see if anything changed during that time other than recovering from surgery–like a diet or medication change? I assume you have, but wanted to make sure.
Glad I found this site.
My migraines started when I was 17 and was put on birth-control pills in order to get my periods back after having been anorexic for a year. I’m 52 now and they still run my life. My worst symptoms are facial swelling and numbness, extremely pallor (even if I have a tan, or am wearing self-tanning stuff, the color disappears and I look sickly and ghostly), and straw-like hair that no amount of conditioner begins to help. I have a lot of other symptoms, too, but the ones I mentioned have eroded my confidence and keep me from being in public.
Sue, I’m so sorry you’ve been struggling for so long and that your confidence has reduced because of it. I wish you all the best.
Yes! Finally someone writes about sensitive skin.
Argan, sensitivity to touch is a common migraine symptom. You can learn more about it by searching for the term “allodynia.”
FOR THE PAST WEEK I HAVE BEEN EXPERIENCING FLASHING LIGHTS AND OTHER VISUAL DISTURBANCES.I WENT TO SEE THE OPTICIANS AND EVERYTHING SEEMED OK.I WENT BACK TO SEE THE DOCTOR AS I AM STILL EXPERIENCING THIS. IT IS CAUSING ME SEVERE ANXIETY.PLEASE HELP.
Sonia, please contact your primary care physician. The visual effects aren’t actually in the eye, but come from the brain. Opticians can’t treat it, but your doctor can give you some treatment options.
I also suffer from CDH been diagnosed since I was 10 yrs old. I also have chronic migraines as well.. I completely understand most of your posts.. it is nice to know that someone else knows the pain!!! I also have osteoporosis of the neck, spine, hands, feet and when I get my migraine which usually last at least 3 days my hands will lock up to where I can only use a finger or two, I’m hunched over cause of my back… it sucks
Crystal, I’m so sorry you have to deal with osteoporosis on top of chronic migraine and chronic daily headache. Best of luck finding some relief.
I had my first migraine when I was 11 years old. Over the years the pain with each one intensified until it came to the point where prescribed medication didn’t always work and I’d have to go to the ER for a cocktail of shots that would at the least lessen the pain and stop the vomitimg while enableing me to sleep it off. I experience the typical symptoms and some not so typical. If the migraine is severe enough I will appear to be drunk to someone who doesn’t know any better. My speach will slur and I’ll be off balanced and confused. One day while shopping I experienced stroke like symptoms and was taken by ambulance to the ER. I can’t even tell you how angry and confused I was when the doctor told me I was having a selent/acephalgic migraine. I had never heard of such a thing and after 30 plus years of firsthand migraine experience I thought he was blowing me off and couldn’t figure out why. the pain of a migraine was typically very severe in my experience and I thought he was crazy, on drugs, or not paying attention when I said I was not in any pain. I was afraid to be alone, still believing I was having some form of a stroke so stayed the night at my parent’s house. I got an appointment with my doctor and told him what happened and he sat there and explained to me that a migraine can occur in any part of the body and that pain could be absent. How confused I felt. How was I supposed to drive when symptoms like that came on with no warning? Both times I lost sight in my left eye, was numb on the left side of my body from face to toe, and almost fell the first time. I asked him how to tell the difference between a stroke and a silent migraine and he told me to look at my face in a mirror; if it was drooping it would be a stroke and if not a silent migraine. 4 years later I still carry a compact mirror with me every where I go. I don’t like pain. In fact, when it comes to migraines I consider myself the whimpiest of the whimpy but I will tell you now that I’d rather have the migraine with the pain because I know what to expect. The acephalgic migraines are just plain terrifying to me. I’m thankful that I don’t have them as often as the regular migraines. I feel for anyone who has to deal with any form of migraine but especially those who have to deal with both…
Kathleen, thanks for sharing your story with us. That sounds very scary. I’m glad the acephalgic migraines don’t come often, but it still must be very frustrating.
I am so fascinated by some of the comments on this sight, some people’s symptoms seem a lot like mine, and I have been looking for diagnosis for YEARS! I have been suffering from sporadic attacks of God knows what for about 8 years. Symptoms include severe headaches, auras and about one to two days of body pain (generalized and difficult to describe – other than pressure), followed by intense frequent urination, euphoria, tingling in fingers, toes, and numbness in tongue. The three stages of the attack last anywhere from 5 to 7 days. The three stages are:
1.Teeth on edge (orange juice tastes bad), leg cramps, ending with auras and intense headache.
2. Body pain varying from general discomfort and fatigue to intense discomfort, pressure and throbbing pain.
3. Release from pressure, intense frequent urination, numbness in extremities including fingers, toes and tongue, fatigue, euphoria, feeling like I have been beat up.
For the first 7 years, I would get the attacks only one to three times per year. Recently, I have had 8 attacks in a little under four months – I feel like this is going to kill me.
Doctors have been mystified, but recently my GP theorized that migraines were part of it and gave me migraine meds. The migraine medication actually worked for the headaches, and so that part was a partial relief. It also seemed to be a good first step in a diagnosis.
A kidney specialist theorized that perhaps the symptoms are all related to “body migraines”. I have been taking the migraine medication even without the headache and that has been preventing all the symptoms for the time being (at least at the time I write this). Is this possible? Is it possible that I have been experiencing “body migraines”? Does anyone else have these symptoms? I would really like to know and I would love to talk to anyone who has the same or similar symptoms. I need to figure this thing out, I feel like it is going to kill me.
“Body migraine” isn’t a known diagnosis, but, because migraine is a neurological disorder, it can cause symptoms throughout the body. Here’s a list of some of them: http://www.thedailyheadache.com/2006/12/the_many_sympto.html. Most of your symptoms do sound like migraine and the fact that the medication helps is also a sign that it’s migraine. Still, the intense body pain is an unusual. Your best bet would be to see a headache specialist, if possible. The first three links at http://www.thedailyheadache.com/resources are lists of U.S. headache specialists.
I wish you the best of luck. Please let us know what you learn!
Does anybody get full-body edema during migraines? My arms, legs and stomach become visibly swollen…this morning my scale was up five pounds and I am a very petite woman. I have had a week of migraines and had to have my husband come pick me up from work because I couldn’t even stand up straight. I know mine are from a hormonal imbalance but can’t get my GP or endo to get on board with it, very frustrating.
Any symptom that impairs your functioning so severely should be taken seriously. Have you seen a headache specialist? They might have more knowledge about a preventive or abortive that could reduce the migraine frequency and severity or reduce the edema. Here’s a list of physicians with training in headache medicine: http://migraineresearchfoundation.org/diplomates.html
I too have had Migraines since the age of 12. I am now 39. I have all of the symptoms, but I have a hard time telling when they will occur. I usually don’t complain to people when I have a Migraine because it is so frequent. Who really wants to hear about my pain all the time.
I do feel misunderstood a lot and I don’t always feel like I fit in. Going to a bar and having a drink is hard to do because I know that I most likely feel lousy very soon, and friends don’t always understand or believe me.
I have trouble at work with listening and my hearing and sometimes I am perceived that I am not paying attention, but that is untrue.
I don’t know, I have tried the Gluten free and I feel like it sorta helped. I take HBP meds and an antidepressant to help with the anxiety. It still does not get rid of the majority of the pain but it helps with the pulsating, throbbing that happens. I hope one day I will grown out of this or they find a cure. I often feel that it is due to my personality as well being that I am a perfectionist and somewhat type A.
It is nice to see that I am not alone by reading these comments.
You are definitely not alone. It’s encouraging that the blood pressure med is helping at least a bit. You can check with your doctor to see if you can take a higher dose or if a different blood pressure drug might be more effective for you. Hang in there.
Well, I’ll just carry this right on into 2014…… I am sitting on my bed googling migraine and edema, because that’s one of my symptoms, and I found this thread. I agree with everything you have all said. It’s frustrating to me that not only do people say they have had bad headaches and they understand, I also get exasperated when people keep referring to my condition AS a headache. As we all know, it’s not a headache, it is a neurological disorder that includes (and not always) head pain. The other symptoms can be so debilitating.
After I started taking a medication for high blood pressure, the frequency of Migraine went down considerably. I was so happy. However, either the positive effect has worn off or I’m being triggered by something new, because I’m headed right back to where I was before when I felt as if it ruled my life.
What is so frustrating is that we know how talented and wonderful we are, but the Migraine syndrome we experience can take away our ability to be who we are in the world. I know that there are many people who suffer from physical ailments that limit them and hold them back, that even brings them to an untimely death. What is so disappointing to me about our experience with Migraine is that others don’t get how something they think of as a bad headache can have such a dramatic effect on us. Being misunderstood makes dealing with Migraine syndrome even more difficult.
Beautifully said! Thanks for sharing your perspective.
It’s been 26 years for me. About 2-3 per week but can last sometimes beyond 3 days and up to 5 days. My prodrome is yawning which confuses me sometimes because I don’t know if I’m just tired or if the migraine is on its way.When it comes, I get nausea and throw up first thing in the morning – like having morning sickness but you’re not pregnant. Once the nasea leave, the diarrhea starts. After three days of migraine, the abortives no longer work. I’m incredibly grateful for my abortive Zomig – it allows me to continue to work full time but it’s useless after day two or three of migraine. I always get the circular blind spot in my right eye and my depth perception (especially peripheral) gets knocked out wack and I walk into doorframes. I see my doctor on Dec 9th to discuss the migraine surgery. But you have to go through a pretty rigorous trial of botox and I may not even be a candidate because of my Spina Bifida. He wants me to go on the anti-seizure meds which scare me even more than the botox. I agree with Barbara back there on September 4th. It’s just nice to feel the empathy of these wonderful strangers – especially when family members can’t even take ten minutes to google “migraine”. I know I’m not the only one that suffers the cruelty of ignorant family members. My heart goes out to all of you and I wish you many pain free days. I’m blessed to have a caring and loving husband and an understanding boss at a job I love, so it’s all good in my world. Peace.
We who suffer from migraines are a very strong lot of people!
I have had them since 12 yrs old and I am now 60. They have ruled my life. Still at 60 I am clueless as to the cause. I do agree that it is a perfect storm type of problem. One thing I am surprised to read about from others is the “I have not had a migraine for awhile, only to be hit by one within 24 hours.” I have tried many things Topomax, feverfew, inderal, various anti-depressants….not much relief. I suffer from both the migraines with and out auras. Interesting the ones with an aura are quite mild….the aura is the worse part for me. But the other migraines without the auras are quite painful and debilitating.
Years ago I was diganosed as being allergic to Casein;. So I am thinking that perhaps that and gluetin could be problems for me.?? Interested in hearing from other who might share the same ideas?? Oh yes I also do the frequent urination during a migraine……great to read that others do as well.
So helpful to share our malady (to know so many others understand.) I’ve learned over my 40 years as a migraine sufferer (I’m 66) that it is sooo misunderstood by not only by those around us, but by the medical community at large. It takes sharing on sites like this to fully see the wide range of symptoms and seemingly unrelated afflictions that migraines produce. I’ve become convinced it is a whole body ailment and, in my case, seems to manifest itself everyday as either a classic aura, fibromyalgia pain, frequent urination, digestive disturbances, dizziness, muscle weakness, and now, after recent open heart surgery I see shooting, silver lights many times a day. (Blessedly, after menopause, I rarely get the headache, itself ) I’ve told this to several doctors, including my neurologist, and am met with blank stares and comments like, “No, those can’t all be part of migraine, as it is not an entire body syndrome.” Well, I think they are wrong, and I feel many of you would agree with me.
If anyone hasn’t tried going gluten free as a possible remedy or help, you should try it. I’ve had migraines my whole life varying in frequency and strength. I found out I was gluten intolerant recently and as a nice surprise my migraines have almost completely gone except around my monthly cycle. But I’m happy with once a month compared to 5-30 days!
I used to have several triggers: severe congestion from allergies- almost gone now from giving up gluten. Various foods- no headaches after eating now unless I eat gluten. I think mainly because gluten can damage how you absorb food. Tension from not sleeping well- sleeping better and feeling rested and energized now.
Just thought I’d share for anyone interested. May not help all, but hope it helps someone.
Thanks for sharing. Gluten is definitely an issue for some people with migraine and headache disorders, but not all and is worth a try. I’m glad going GF has helped you so much!
Hi, all very interesting reading! anyone get full-body paralysis, with limb jerking/twitching, lasting hours?? Just over two years ago – having had migraines since aged 6 (now 50) which were 1-2 per year – I had an episode of this, fully conscious and aware but unable to consciously move or to speak, which lasted 4hours, and i had a migrainous headache during it and afterwards. the limb jerks continued afterwards too. I was taken to hospital – mri and ct normal – eventually given clonazepam for jerking (went for about 5hrs then came back though reduced). I continued to have migrainous headpain and limb jerks, with aura/prodromal symptoms, together with these episodes of paralysis. Was tried on triptans without success. I was referred to a neurologist who concluded this was chronic migraine syndrome, that the paralysis was rare but part of this, and started me on propanalol, later adding nortriptyline. I’ve been keeping a symptom diary, I’ve trawled the internet, I’ve read allsorts, but I can’t find anything about this paralysis/jerking connected with migraine! in many ways it seems more like epilepsy. I have an appointment tomorrow with my GP to discuss it all – episodes are more frequent now than they were (21 since the new year) – I have constant headpain which varies from minimal to searing, frequent bouts of muscle twitching and/or jerking, scalp/face/lips tingling/crawling, afterimages, and it seems to match migraine apart from the paralysis. Any thoughts anyone?
I have a similar story to those posted here. I have had h/a since I was 21 yrs old,now 46. I have experienced muscular twitches and jerks as well when I was younger. Mostly I get rt sided pain with eye and face drooping on the affected side. I also get in a twitch in my cheek to the rt side of my mouth. I have frequency of urination,visual disturbances to occasional blindness,constipation or the opposite,tingling and crawling of my scalp. In my younger years, paralysis and loss of consciousness. Embarrassing to have the ambulance come pick you up and wake up in the ER not knowing what happened. I also get extremely high blood pressure during an episode with heart palpitations. Makes me nervous of stroke,of course. I was on many different meds when younger but felt they were making me more ill as the side effects were just as bothersome as the pain. I had a period of about 10 years where I only had one h/a a year…this was certainly a blessing.
I was divorced a yr and a half ago,my choice and now am finding myself going through all same stuff as when I was younger. It is totally ruining my life with my new man and my job! I am thinking of seeing a neurologist again but am nervous because of all the testing and guinea pigging of meds you go through and get no relief.
To the medical community….HELP US! We don’t want to live this way. We are normal people who enjoy life when we can and feel isolated and alone with no relief and skepticism from our GP’s and family and friends.
Great to have an outlet in this forum and hearing other people’s stories help with the isolation.
I know this is an old post, but my husband has episodes that start with a strange numb feeling around the left side of his mouth. Then he gets head pressure, not migraine type pain, followed by seeing squiggly lines, all over body weakness where he has to find a place to sit down then a temporary stage of paralysis where he literally can’t move. He can hear everything going on but cannot respond. His eyes will sometimes roll upwards and look like REM movement is happening. Other aura symptoms are frequent need to urinate, excessive yawning and mood changes. After the paralysis part, he looks like he’s sleeping. Sometimes he’s out for 15-30 minutes. Other times he’s out or sleeping for hours even an entire day. The sleeping (after one of these events) has been whole days up to 15-16 hours with him only getting up to take meds and use the bathroom then right back to sleep.
Has anyone else heard of this type of migraine or perhaps a sleep disorder? He also has moderate sleep apnea but has used a CPAP machine for 3 years and it’s working at optimal levels per diagnostics. Any help with similar symptoms is greatly appreciated!
This site helped so much! I currently am laying in bed in a dark&cool room sweating like a hot flash, dizzy as all get out, wanting to cry but knowing I can’t (it causes more pressure). I just woke up from an 8hr rest filled with cycling dreams (same crap over and over) and the funny thing is, 24 hrs ago I was. hinking “I feel really, really good! Only muscle soreness, no headache! This is great!” Boom. Full-out today.
Sadly, I had to confess to my husband that I was in a neurotic state and a “tornado” (our code word for cleaning frenzy of sparatic action as I run away from the pain) after we got home from my daughter’s birthday party…where I had been so tired I thought I would fall asleep on the chair! screeching children made me jump to anger to where I just had to step away for a minute. I’m not an angry person;I’m just in chronic pain with no control over it! Low energy to sparatic highs make me feel bipolar, but it’s been tested and I’m just a complex migraine. It’s funny that ppl mention seizure; I had exhaustion convulsions and full body ache in college, after too big a workload. Drs didnt believe i wasnt epileptic, but after months of anticonvulsants GIVING me seizures, i stopped myself and havent had one since. You think docs would be more open to listening than over-prescribing. . . Nope. All about that $$$
Now I’m in the full body migraine again, with stiffness and soreness that makes me say “this migraine is in my bones!”every time i change positions i get nauseated and dizzy/black out a bit. Ive been having daily headaches that only get better when i hydrate, sleep no more than 8hrs(sadly it’s 3am now), and take 200g of amino-rich protein (chicken, turkey, and whey work wonders. The Triptophan boosts seretonin). sunlight and flourescents make matters worse. I used to only have migraines once a month, with my cycle, if at all.
Im in bodybuilding, so my muscle fatigue is to be expexted, but ever since my hystorectomy in October (uterus N cervix only) i have had severe mood swings and basically all the signs of hormone imballance. I cant help but think i may have some estrogen dominance making my head want to explode on a daily basis. For the last 6months ive tried elimination, relaxation(hard with toddlers!), and scheduling out every day the same. My triggers are msg, artificial sweeteners, and casiens(dairy fat that breaks down like an opiate). But like others above , it’s only a trigger during the perfect storm (otherwise it’s more digestive intolerance and dull allergy headache)
. The migraines are just getting closer and closer together. This marks a month of back to back pain, and on days when I forget to caffeinate regularly or take rhodiola (a natural stress regulator) I find the all-too-familiar ocular pain on my left. Now it’s in my temple and neck, too. Tension plus migraine equals depression for me. I feel like a fibromialga patient must (actually, the pain receptors for migrainers and arthritis patients are the same). When your brain is reacting to a false trauma, it is so hard to get it under control. I have thrown out all my meds and even the Tylenol and ibiprophen from my cabinet. I’m not going back to pharmacy. I agree with an above post about just dealing with it and pushing through. I just bear it out and refuse to lay down, roll over, and metaphorically wet on myself because the pain is winning. Honestly, that’s the reason I’m so frustrated; will power and intellect are doing very little right now. I WANT to belly up, but with 2 kids under 3 it’s not an option. Agreeing with another poster: migraines got significantly worse after each child. So thankful for the people who have shared on here! I don’t feel so alone. This list makes me realise how much pain I’ve been in. Add in “static in ears” and “clenched teeth” and that’s my list perfectly.
Im going to start progesterone cream soon, and hopefully that helps. At 23, i should not be having all these issues!
I’ve been suffering from migraines now since I was 11. I’m now 23. Mine are odd though, a lot of people say they have signs anything from an hour to a day before. I don’t get any of the tell tale signs until the visual aura kicks in, that’s generally there for 30-50 minutes. After that has eased off I get a light headache which soon turns into the biggest throbbing headache ever.
The thing I find odd with mine are that the symptoms change between each migraine. For example a couple of weeks ago at work I got he visual aura, shortly after telling them I needed to go home it all went, so I looked like a liar walking back into work saying its ok I’m fine now.
Sometimes I vomit, the majority of the time I don’t, sometimes I get numbness in one side of the body and face but again the majority of the time I don’t.
NOTHING I have ever got from the doctors seems to help, so £8.50 a time for them to if anything, intensify the pain isn’t worth it to me. The only thing I have ever done which helps when a migraine attacks is smoke some marijuana. The best pain killer in the world by far as so far its the only one that helps ease the pain and help me get to sleep.
My heart goes out to those who suffer with these worse then me, its been such a Bain on my life for the past 12 years. To the point where Ive been investigated at work for sickness. This just creates more stress!
I am a 54 year old woman. I have had visual Aura’s my whole life. My migraines are inherited. My father, sister, and all 4 of my kids get them. Mine are usually weather related and seasonal. I can have them 10 times a day or 10 times a week and I’ve had them disappear for a year or 2. I have had 2 grand mal seizures while taking anti depressants. Apparently I’m sensitive to the SSRI in them. I no longer take anti depressants and thankfully don’t have a need to be on them. I have started getting the Aura’s again, however I don’t get the pain. I’m not complaining because I have felt that head crushing pain my whole life. Since I do not get the pain following an aura, I do have the need to urinate about 8 times in an hour. It’s the weirdest thing. I am left feeling hungover after the ” flasy lights” and peeing. It still knocks me down for the day as I am light sensitive, slightly nauseated and peeing. I take only Tylenol 1 for pain because I am afraid of getting a rebound headache. Anything stronger ie: Percocet. I will have the most horrendous painful rebound migrane.
Anyway, this page has been wonderful to read. Feel like I a, not crazy cause a migrane makes me pee. Lol. Good luck to all of you!
While we see what happens to us during before and after a headache, lets get some tips on how to stop them completely!
I do have good news to post. As I had tried EVERYTHING and I do mean every pain etc pill tonic you can think of. I went in a incredible journey on my health and how to heal when medicine was not working. The answer is your diet. It was my diet. I tried not eating chocolate that did not work. The only thing that works as a preventive and a maintenance is in fact a plant based diet. Eat mostly all raw veggies and fruits. Not only will your headaches go away but other things heal as well. I pray your blessed by this information. Eat more salads 🙂
I am so glad I found this site! I was starting to wonder if I had a brain tumour or something! I have the facial swelling with the migraine and wasn’t aware it could do that! I hate being in pain, of which I am every day. I didn’t even know there was such a thing as CDH. Thanks so much! This site has really helped!
This is a lot for non-migraineurs to digest but it is what we struggle through and still try to lead somewhat of a “normal” life. After experiencing this trauma over and over I believe you become afraid and distant. What else can you do when instinct guides you into a protective state of mind so that you end up avoiding all triggers at all cost…the end result is seclusion. I feel such comopassion for anyone who has been forced to lead this type of life that becomes our norm! Wishing all of you a pain free day.
Krista, I like that you characterize a migraine attack as a trauma. It really does feel like one, especially when they are frequent, and it does change your behavior. Interesting to think of this illness in a different way. Thanks!
When you say I haven’t had a migraine in ___ days and one invariably crawls up from the depths of hell and ruins your day in short order, do you think maybe subconciously your spidey senses are tingling? I often can sense a migraine coming, before the occasional heightened sense of smell and sometimes mild shadow vision before the full blown Auras strike and confirm the spirit crushing migraine is yet again upon me. I often definately have a random thought of migraine in one of the uncommon abscences of that thought..
I have battled this bastard migraine disease all of my adult life. I hate migraines I hate the thought of the thing having any power over my day to day life. So I fight and I never let them put me in a bed. Even when I feel like I will litterally DIE if I don’t get into a cool, quiet, dark room… I refuse. I also refuse to subject myself to the newest trial drugs anymore because being a guinea pig for the old classes of drugs only cost me money and wasted my time and hurt me. I have had Dr.s say some things that made me want to put them into the same chronic searing pain day in and day out that I endure to help them get the a better understanding of the fact that I am not nor will I ever be there as a drug seeker, but living in chronic pain does crazy things to a man. So now I just fight with my will, and go to the Dr. when I need a physical. I will deal with the disease myself until the medical community and society at large get a freakin clue as to how to deal with pain sufferers and especially migraine fighters.
You all helped me today by sharing your stories, I read them half blind with a damn nasty migraine fighting for my attention…but it was good medicine, and the only side effects I noticed are an increased sense of community. Most importantly I didnt retire to a dark hole early and little more of my life was lost to this disease today.
It is not uncommon to know a migraine is coming on even before the aura. A lot of people say they just feel “off” anywhere from an hour to a day beforehand.
I’m so glad you found the site helpful. You are definitely not alone. I wish you all the best in your search for relief.
I am so thankful to have come upon this site.. I’m 34 And have suffered with migraine since I was 18. As the years have gone by they only seem to get worse. My last pregnancy my third child was a nightmare hellish experience. Migraines weekly and countless hospitilizations. They gave me morphine which is the only thing that worked. Since then I’m also suffering from ppd and on antidepressants. They recently prescribed zomig but I’m scared of the interactions between the two so just continue with the morphine which only makes them bareable. I was happy to see that I’m not alone with tooth, ear and eye pain, I had never made the connection between the former two so it was interesting to see it may all be migraine. I also get high energy and a realization like hmmm I haven’t had a migraine in x number of days only to be slammed and out of commission for days. It’s hard to watch my partner have to do all the caregiving while I lie in bed but I can’t for the life of me do anything else. I hate living this way. When I was pregnant they also tried a drug called stemitol on me.. And it was living he’ll.. I felt like my body was suffocating and intense anxiety. I’m pretty sure they shouldn’t have given me that during pregnAncy and am convinced it caused growth problems in my son who now is normal thank god. If a doctor ever tries to give me that again I will tell him to inject himself first while I watch him lobotomize himself. We don’t need to be guinea pigs we need relief from constant agony and suffering. I hate when I hear stuff like take Tylenol or alieve.. I’m mean come on if it were that simple do you think I wouldn’t have done that already!!! I hate the constant feeling of being alone trapped in my head to wage a long battle 2-3 days against something I can never complete defeat. I pray for the day I and others who suffer will get the relief they deserve. I hate being unable to live a normal life and worry that my partner will oneday leave cause the woman he loves is too broken to keep helping.. Sorry for the verbal hemorrhage but I needed to get this off my chest.. Hoping for a better future for all.
Thank you for putting this list together! While there seem to be a crazy number of them I was relieved to see my symptoms before a migraine and during to some extent on the list. I regularly search for an answer to my migraines and headaches but thought I had such an odd list of symptoms for migraines that they can’t possibly be related, but it looks like they might be.
I am also happy to find a site full of people that prove I’m not crazy ôr making symptoms up! Its hard for people to understand the pain when. They do not regularly get them and I’ve felt so bad inconviecing my boss, coworkers and family. Glad to know I’m not alone
My Migraines are under good control by taking 3 25mg tablets of Lamactil (Lamotrigine) twice a day to prevent daily Migraines. I only get a Migraine about 8 to 10 times per year now. When I do get a Migraine I take two Aleve (Naproxen Sodium) plus two Tylenol 3. The Migraine goes away in about 30 minutes completely. I have two minor Cardiac Arrythmias, so I cannot take any Migraine Abortive medicines, which usually causes rebound Migraines anyway. Other things that prevent Migraines for me is to eat a high fiber diet (usually oatmeal daily) and drinking a glass of Gatorade at the very first sign of a headache. Gatorade will usually stop it before it gets worse. I also rub Origins “Peace of Mind” peppermint lotion under my chin ears and neck. I hope these things will work for you, too. 🙂
Like the rest of you, I was very glad to find this site and to discover that others experience some of the unusual symptoms my daughter and I do prior to a migraine, such as frequent urination and the awareness that it has been quite a few days since my last migraine. I always took this as superstitiousness and have advised my friends never to ask how my head has been, as this always seems to trigger a migraine. Now I know that I’m not alone in this. My neurologists have never heard of frequent urination as a precursor of migraines, but it is the surest indication I know of that a migraine is on its way. I can easily lose 4-5 lbs. in the day before I get a migraine.
Because of modern meds, I am now able to work, losing only a day or two to migraines a month, and working through the less severe one. (If I am able to drive, I am able to work according to my calculations), but I was disabled for 15 years and lost most of my daughter’s growing up years to migraine pain. I have often felt as if those 15 years were stolen from me, from us.
One of the things that concerns me is that many MDs don’t listen to our reports of what helps us. My daughter has been hospitalized twice and developed migraines while inpatient. The MDs wouldn’t listen to what works for her, resulting in long hospitalizations until they finally administered Dilaudid, the only drug that helps at this point. Another concern is that hospitals are moving away from the use of Dilaudid, preferring Toredal and other medications that don’t help either of us. The future is not looking rosy.
I can definitely feel for all of you who have severe migraines! I have suffered with mine since I began my monthly cycle in high school. I’m now 41 and they have run my life. Back in my twenties, I would only have them about once a month with my cycle and on occasion when I was under a ton of stress (good or bad). But then at 26 I had my 1st baby. I couldn’t take anything while being pregnant and something about my hormonal changes made my migraines come more often. I have 3 children and with each child, the migraines became worse. I was at the point where I was having them daily! I had tried every medication known to man. The only thing that worked ok was zomig. But throughout my pregnancies and nursing my babies, I became addicted to pain killers. My migraines were so intense. I have the “full body” people above have described.
I always begin having the aura first and the sensitivity to odors. Then, I literally become pale and lose the color in my face and the pain sets in. I know at this point, I’m in for a long haul! I vomit so much, can’t eat, have to hide my head deep within my pillow, putting pressure on it for a slight amount of relief (that doesn’t last long). I sit as still as I can. I know if I cry like I want to, that it will just make it worse. I can’t be touched, talked to, I can’t do anything at all. I am unable to function whatsoever. I lay in my bed and pray for the pain to stop. It usually takes from 10-24 hours for my symptoms to decrease so that I can get back to my daily activities. My husband left and divorced me because he couldn’t take how often I was always sick. He said that he had lost his wife. Although, what the people around us don’t understand is that we are the ones who are suffering. If you are reading this and someone you love is going through this sort of pain, I beg of you to be there for them. Don’t leave them when they need you the most.
My marriage ended 4 years ago know. I am raising my 3 beautiful children on my own and luckily, I am down to only 1-3 migraines a month. They have become more severe in nature the older I am getting. I am scared about having an anneurysm or stroke. I have suddenly been having severe facial swelling that I haven’t experienced before, which frightens me. I no longer have medical insurance since my divorce and each Zomig pill costs me $60 per pill. Although, since my divorce, I have gotten off of all of the various medications I was taking. I am no longer taking any prescription painkillers, no more antidepressant, no more Topomax (which I felt was killing me!), etc. I now only take vitamins and the occasional Zomig and try to relax. I do bio-feedback, relaxation exercises, yoga, and I keep a headache diary, where I write down the things I eat and do and try to make connections between them and my migraines. One person posted up above that it is the perfect storm that truly causes them. I believe they are absolutely correct! If I’m under stress, beginning my monthly cycle and I eat something with MSG… I’m screwed! But on a day when I’m calm and relaxed, I can eat a whole bowl of soup with MSG and be ok. So, watch out for the triggers and try to keep them to a minimum.
Good luck to all of you out there who suffer from these things. Mine have been diagnosed as complicated migraine with aura. I have been to the ER more times than I can count with them. I can only hope that I will outgrow them and that none of my children end up with them. One can only hope! God Bless!
Im thankful I was able to read this, and I am not crazy. I am getting tired of having these headaches everyday. I wake up with a mild headache, and when I bend over, I stand up, I have to wait for the pressure to release from my head. I have moderate pain all day long, and sometime around 5-7pm I will all of a sudden become confused, loss for words, speaking is difficult for me, and my wife can tell that the switch was just turned on. I then become worthless for hours. I am in so much pain, and cant function, I have to sit and stare off into space, and sometimes I will have the camera flash in my vision/eyes, when opened or closed. Then the extreme, cant deal, horrible pain takes place. I feel like I want to bang my head against the wall. Then as it slowly fades away, I start talking again, and I have to go to the bathroom 7-8 times in a 2-3 hr period (while I am in bed). It is effecting my entire life and marriage. I cant be the old self I was before, and I have anxiety everywhere I go. I get the cold sweats, and paleness, and what I seem to think is dark circles. I use to be able to tan, and the circles would go away/less noticable. Now they are more noticeable when I am darker. I wake up in the morning after a long day of headaches/pain, and I feel beat up and exhausted !! I am feeling this pain more now, cause I have gotten off all meds. 1 of those meds were lortab/hydrocodone, for 4 years, and 100-150mg day. When I was taking them, the pain wasnt as intense. I got off zoloft and anti depressants also. During the time i was taking those meds, I was prescribed Topomax for my migraines, but I didnt take it everyday like I should, so I am awaiting to try them again, to see if it works. I also think I am having bad allergies too, do to my cats and dog. Seems like the more I stay at home, the more frequent the migraines. This is becoming a huge hassle for me, and wearing me out. Is it possible I am having these headaches cause of my allergies, which lead to migraines ?? I cant keep living like this. I get no relief, or have any way to get relief ! Is there anything I can do, to get my life back? I have been to the neurologist, my primary, etc- Im tired of trying to explain my symptoms, and them thinking I dont have anything wrong with me ! I have a ringing in the ear too. Its constant,and never leaves… As does the headache. Its all day everyday, and only gets worse, with I get the vision,migraine, urination and confusion, then wake up feeling beat up ! I need some advice ASAP… Thanks
I am so grateful that I found this site. I just got off the couch after two days of what I call “full body migraine”. Sometimes, along with my “regular” migraine, my entire body is sore and I blow up like a balloon, from my face to my toes. I take Imitrex but in these circumstances it doesn’t seem to do much. It’s been enlightening reading others’ symptoms like frequent urination and burping. I never made the connection till now! Does anyone else share my symptoms throughout their body? Well, time to go back to sleep…
I just found this blog today, and reading the symptoms above was like finding a long lost sister. It’s awful that you suffer this way, and I know that because I suffer, too. As awful as it is, it’s good to know I’m not alone. I too had to quit my job because of migraines. No one wants to hire someone who’s calling in sick all the time, and most people just don’t understand … “Oh, yeah I get headaches, too.”
I can totally relate to the person who said they banged their head against the wall. I tried to knock myself out like that once, just to stop the pain and make myself sleep.
Thank you so much for your blog. I’ll have to check out the rest of it now.
I have only been having migraines for about 6 months. I have some level of pain almost all the time. Every day brings something unpleasant and new. Today’s surprise is intense ear throbbing. I can feel and hear my pulse in one ear. very disconcerting. Anyone have ear problems? I have complained to my GP for years about ear pain, only to hear him say my ears are fine.
I went from dr to dr c/o ear pain/pressure of varying degrees, with the same answer–nothing wrong with your ears, must be your sinuses. Had sinus surgery which fixed nothing. Sinus CT scans–always OK. No dr EVER suggested ear pain/pressure may be related to migraines……..
the money I’ve spent and the time I wasted……happy to hear from all these Kindred Spirits 🙂
Candy, I’m sorry you’ve had to have unnecessary tests and treatments. It’s so frustrating that many symptoms of migraine are unknown by many doctors.
Ear pain & hearing loss is related to Vitamin A deficiency. Please research/consider being tested for full Vit/Min deficiencies and treating with high doses of Thorne Research &/or Pure Encapsulations brands. For migraine one Must also consider treating with rather high doses of B Complex, Vitamin D/K2, Magnesium Citrate &/or Magnesium Glycinate. Good Luck! PS When testing for B please request the MMA test. Best Health to You!
Angel, thanks for the information!
My prodrome tell is little burps for no apparent reason. When I start doing that I know within a few hours I will have a migraine.
Wow! Reading all these comments is like an alcoholics first few AA meetings…OMG, you mean other people experience so many of these different symptoms?
The “I haven’t had a headache in __# of days” being an absolute precursor blew my mind. Without a doubt it occurs every single time for me.
the frequent urination in general….I thought I should be proud to have such wonderfully functioning kidneys.Darn! Thanks for ruining that delusion. Seems like no one mentioned stress. I’m a firm believer in stress being a trigger and most medical professionals I’ve dealt with have mentioned it. I have tried chiropractic, steroid spinal injection,botox and about 7 preventive maintenance meds(Inderal, Depacote, Elavil, Topamax…) with no luck. I think the chiropractic stent inflammed my neck pain… the spinal block has seemed to help that immensely and I am thankful for that because I want to be hopeful that occasionally the stress caused by the neck pain is assistive to the migraine process. I definitely believe that foods are a huge trigger…the time I spent on a physician assisted low carb diet seems to me to have been a time when my migraines were less frequent. I’ve also tried the Purple Butterbur and the COQ 10… no luck. I’m thinking about giving accupuncture a try.
I guess more than any of what I’ve said I just want to express my frustration that modern medicine, though trying, appears to be so ineffective to find more answers so far. My mother suffered with daily headaches and I remember when I got a little older I would think “she can’t have a headache everyday!!!”. Guess what; I changed my mind on that thought.
My neice suffers too and she is presently having some relief with taking prescribed Neurontin. This medicine has huge bad press so I am cautious to jump to trying it but I am happy for anyone that gets a little relief.
After reading over this before submitting I am also convinced that “run on sentences” are also a symptom. Nah, that’s just ignorance. Blessings to all who suffer that one day soon something miraculous will come to relieve us of this debilitating malady.
I have an interesting precursor. It’s the thought that “wow, I’ve not had a headache for a few days, and I bet I’ll never have another.” Within an hour I’ll have a migraine. I’ve had this experience so many times that I now know that it is a sign, as well as the aura, that a migraine is on its way. Maybe part of the euphoria.
I am afraid your definition of migraine is not the one accepted by the medical community. They don’t all fit the textbook definition.
I have been suffering from migraines for several years, and while I have pain, it is nowhere near as intense as yours. However, I do experience balance problems, numbness in and around my mouth, difficulty speaking and finding words, a spacey, confused mental state, and even low blood pressure. Prior to the migraine, I typically experience minor speech difficulty and frequent urination.
After a CT scan, MRI and MRA, my neurologist diagnosed me with migraine. According to him, not all migraine sufferers have horrific headaches, as you do. I do, however, have to endure feeling like I’m having a stroke or have a brain tumor, and I get a pretty severe headache as well.
So while I sympathize with your considerable suffering, you’ll have to pardon the rest of us for not having all the classic symptoms in the right order.
First off, I want to vent to an audience of those who will understand; I am really tired of individuals who claim to have migraines, but have NONE of the classic symptoms. Those who have never had one have NO CLUE how intense or debilitating the experience is. I concur that it can be likened to epileptic seizures. I don’t deny that these individuals are experiencing pain, but if you can take a Claritin or Aleve and it goes away, it’s not a migrane. I am extremely concerned that the work “migraine” has become synonymous with “really bad headache” instead of the specific affliction that it truly is.
I’m 41 and have been experiencing migraines since my early twenties. They are the classic migraine progression with all of the symptom phases listed above. I can go several years without one and then experience many back to back over a few months. The pain has been so intense that I have literally banged my head against the wall just to distract myself from it. An early migraine sent me to the E.R. because I could not stand up due to disrupted motor control.
I’ve tried many approaches to managing my migraines. The first instinct was to try to pinpoint what what causing them. I head about the concept that there were “trigger foods” that were high in tannins. So, I cut out red wine coffee, tea, chocolate and a number of other foods. Thank goodness I still got a migraine, because life like that sucked!
Not knowing what was causing them (I now believe that it is a “perfect storm” scenario involving good or bad stress, food, and perhaps allergies), I turned to managing them when they do occur. We all know that over-the-counter pain killers have no effect. I tried Imitrex and I might have well been taking a sugar pill. The first experiment that really worked was purely instinctual and very simple; the hottest shower that was still comfortable with the water running on my scalp. I’m sure this has something to do with vasodilation. I have since started alternating the hot showers with cold gel packs from the freezer. It feels great and I feel like I’m giving myself a spa treatment.
Most recently, I found that marijuana is the most reliable way to manage my pain, especially if I use it during the prodrome. Let me add that I am extremely fit (run 10 mi a week) and live with moderation, i.e., drugs are not a part of my “lifestyle.” It also gets rid of the debilitating nausea and sensitivity to light that I get. While I can still get disoriented from the migraine, it simply does not bother me. I was able to eat a meal and clean my house during my last migraine! Isn’t that better than putting blankets over the windows and assuming the fetal position? My decision to try marijuana was its connection to medical uses for pain and nausea. It works so well that I now find traditional medical management of migraines very suspect.
I found this to be very helpful information. I am making a list of questions to ask my neurologist on my next visit and many of them are listed here. Although they are on this site I still plan on asking him about them.
A former room mate use to somewhat tease that I would have to urinate a lot during a migraine. I would just get comfortable and have to get up and get to the bathroom. When I’m at the treatment center, I ask for a room that has a bathroom in it. I had no idea that the frequent urination was connected to my migraines!!
Hei people, Happy April Fool’s Day!!
A dietician was once addressing a large audience in Chicago. “The material we put into our stomachs is enough to have killed most of us sitting here, years ago. Red meat is awful. Vegetables can be disastrous, and none of us realizes the germs in our drinking water. But there is one thing that is the most dangerous of all and we all eat it. Can anyone here tell me what lethal product I’m referring to? You, sir, in the first row, please give us your idea.”
The man lowered his head and said, “Wedding cake.”
Happy April Fool’s Day!
Im 32,had migraines that are life affecting for the last 8 years. Who was I? A bodybuilder, climber, fearless fool that thought I was invincible. Now? Im a sypathetic, slower, more cautious person held back by migraine. I still climb to an easier standard, go mountain biking and still work fulltime with no time off sick. BUT, everyday life is much more of a struggle. Nothing comes easy now.
I have no pain just everything else that comes with a migraine. Dizziness, CANNOT THINK STRAIGHT AT ALL, Light & Sound Sensitivity, weird feelings of anxiety that are totally random. A precurser to my migraines is chronic stomach gurgling/rumbling throughout the night and waking with an uncomfortable feeling in my stomach Next day, its time to face the music!
What makes mine worse!??Dont lie in at the weekends!!! That is my downfall. Saturday through to Monday mine can sometimes peak. MILK, cheese and cheap chocolate(brownies or anything with chocolate chips in), pickled and smoked foods, MSG. Large amounts of Carbs/Starchy food that make me sleep heavily. A cup of tea can sometimes make it worse.
Lets cut to the chase. What helps? What makes it better or easier. Try to fly in the face of the symptoms. Get on with life (which, I know, isnt easy at all when you’re stumbling over your words and everything looks bright and hazy!). Try High Protein shakes like Met Rx meal replacement drinks, not mixed with milk! Creatine monohydrate really really helped my migraines quite alot. Why? Im not sure but try it. Strong, fresh, organic ground coffee. Anyone heard of the LEAKY GUT SYNDROME Linked to migraine???? Look it up. Its interesting stuff.
I see migraine as a full blown neurologocial disease/ problem getting close to epilepsy. Its a daily affecting disorder and if you are a sufferer you will know what I mean.
I am getting off my soapbox now.
Hope something in here was of some help.
I am so relieved to see someone else state they don’t have the pain. I used to go to the ER with bad headaches, but now at 60, I have grown used to the chronic pain and unless it is at least a 7 to 10 rating, I hardly notice it.
It is all of the other symptoms that drive me nuts and make me feel like I am crazy. Numb, cobwebby feeling on nose and face. And not being able to think clearly is my least favorite, and most debilitating symptom. I wonder at times if this is what a brain injury feels like. I have had migraines for about 50 years now. Maybe my brain is broken.
I have issues with my heart that are noticeable when I have migraines. I have had a workup by a cardiologist because of my arrhythmia, which was diagnosed by my regular doctor first. I have noticed the arrhythmia as a reliable prodome.
Sometimes, I wish I could just take to my bed because of my “spells”. But life goes on, and I can’t stay in bed several days a week. I more often than not have some degree of migraine on a regular basis. And I just slog through it like probably most of us have to. I have been married for over 15 years and my husband still will say – wow, it seems like you are getting lots of headaches lately. (sweetheart, that lately has been all of our marriage and I am sure it is tiresome to be my partner)
I did go completely off of caffeine for a little over three weeks and they got worse everyday during that time. So no caffeine is a trigger.
Oh well, it could always be worse. I often try to act as if I am relatively normal, which I can pull off unless my thinking processes are kaput.
Lastly, I now think of Migraine as a syndrome/disease that is ever evolving with different symptoms. And it doesn’t ever go all the way away. There is something “wrong” with us that can’t be ignored, darn it!
Good luck to all of us!
Raven, your input is spot on. My migraines are sometimes hard to detect because there isn’t always pain in my head. Some of the time it’s an internal, vague head pressure with icky malaise- I can feel a bit shaky and weary– like a dishrag. Ear ringing off and on. Noises are too shrill and extra loud– this often comes first. Thinking can become comical– I call the first part “squirrel brain”– later it feels more as if I’d had a concussion, or at least what I think one might feel like. Just out of it. My neck gets very stiff and sore, and I’m not sure if it’s part of the migraine or not, but oftentimes I’ll have spells of chills and belly ache but never a fever. None of this sounds too terrible… but when you string it together for several days, then have days splashes of feeling just fine and it cycles over and over…its most frustrating. I keep plowing as best I can. Sounds like you do too.
I have been suffering with all these symtoms and i am very scared. I need help.
It is nice to read about other people that have the same condition and symptoms (not coming from a GP/Doctor).
I was diagnosed with Daily Chronic Headache nearly 4 years ago. I have headaches all day, every day but the intencity rises and falls during the day (I prey for a day to wake up without one). I have been on so many different types of medications and found that they made no difference to the frequency or severity. I have stopped taking all the prescribed medication as i am trying for a baby. It has been absolute hell. I have been off the medication for 3 months and continued to deal with the headaches. This last week my headaches have really intensified to the point that i don’t recall feeling like this. I am waking up with incredibly bloodshot eyes, blurred vision and a stiff neck along with the general symptoms. Generally my headaches only effect one side of my face and when it is very intence my face drops and becomes numb on the side it affects. At the moment the deep pain is one sided but i can feel it over both eyes, nose and cheeks (just below the eye). I am also getting shooting pains in my face and down my back. They last for seconds. When the pain shoots down my back, a short second after if feels like cold fluid is running down.
I used to suffer with headaches as a child but only occassionally. My life has changed so much since they became daily. The pain seems to drain my energy by the end of the day. I am normally in bed by 8pm.
On occassions I think about my headaches and can’t help but think that after years and years of having this kind of pain that it must take its toll on the brain. As intence as my headaches are, if im still having them in 25 years time it must damage the brain in some way, even if it slight.
Alternative medications that i have been told to try are bottox and a spinal steriod injection.
I would appreciate any comments.
I know this is an old post so I don’t know if you’ll read this, but one thing you said really hit me. I also have the misery of CDH, cluster, migraine, whatever. And sometimes when I’m laying here with severe head pain, I also can’t help but wonder if I’m getting brain damage. It is nice ti find this blog to know there’s others out there with the same thoughts.
Very rational thoughts, I think,but haven’t seen it written before.
I pray we all get well or at least find a dr who believes us and cares. Mine retired 🙁
Candy, while there’s evidence of white lesions on the brains of some people with migraine, there is no evidence of long-term damage from migraine. The research is ongoing, but is promising so far. With constant migraine attacks, I really felt like I was losing my intelligence and feared it was permanent. Now that I have some migraine relief, I feel like my mind is back to what it used to be, except during a migraine attack.
Thanx for all your support. The neurologist who took the place of mine who retired just wants me to go away, I think. I recently called for an appt with an actual HA specialist/neurologist about 150 mi away. He has a waiting list of 4-5 mo, but I’m glad to get on it.
You’re welcome, Candy. My fingers are crossed for you.
Hi there Claudia,
I’ve never heard anyone else describe their migraines the same as I would describe mine. Have you had any success with treatment?
Cluster Headaches. You can have Cluster headaches and Migraines concurrently.
“Generally my headaches only effect one side of my face and when it is very intence my face drops and becomes numb on the side it affects.”
I suspect that you have both Cluster Headaches and Migraines. Cluster Headaches happen cyclically. People have multiple attacks and certain times of the year. It’s listed as being one of the most painful conditions a human being can experience; many people commit suicide. There are a few videos on youtube where you can watch someone experience a cluster headache. It’s hard to watch, but very enlightening. If you have both migraine and cluster headaches they can bleed into one another and it is hard to tell what’s going on. One of the hallmarks of the cluster headache is the drooping of the eyelid and numbness on one side of the face (the side with the intense throbbing pain).
WebMD says –
“Cluster headache commonly awakens you in the middle of the night with intense pain in or around one eye on one side of your head.The pain of a cluster headache is often described as sharp, penetrating or burning. People with this condition say that the pain feels like a hot poker being stuck in the eye or that the eye is being pushed out of its socket.”
While folks experiencing a migraine tend to want to lie down and not move, people experiencing a cluster headache appear agitated and restless. They usually can’t lie down or stay still because it worsens the pain.
I have found physicians to be reluctant to diagnose cluster headache because the majority of people effected are aging, male, pack-a-day smokers. Also, in my experience, I know more about the science of migraines than all of the migraine specialists I have gone to. The truth is, migraine is a very poorly understood, relatively prevalent neurological condition which effects the body systemically. Physicians are human body technicians, just the way car mechanics are vehicle technicians. If a part is obviously broken or needs to be replaced, they can tell you, and for the right price, fix the issue. Migraine isn’t a piece of the brain they can see on an MRI and remove or replace. They don’t actually know all of the systems affected by the migraine conditions. After so many years so many years of having chronic migraine/chronic daily headache, and being on these forums and talking to other people who have these issues, I’m convinced that depending on your genetics (and the influence of epigenetics) your will likely experience your own constellation of unique symptoms, and listing all of these out for your MD usually leads to them thinking that you are being melodramatic or are insane.
I would love to meet an MD with chronic migraine or CDH. Oh wait, there aren’t any… the condition is so disabling that you could never make it through medical school, residency and specialization training with it. I’m not saying that Doctors & other medical professionals don’t want to help you, but we have to be realistic and accept that they can’t understand what we are experiencing. They wouldn’t be where they are today, if they understood.
This site reafirms for me all the symptoms I so regularly experience from classic migraines especailly the auras that disort my vision to such a degree that I am unable to see at all and sometimes it seems to take hours before I’m able to see again. I usually wake daily with a headache that disapates by about 11 am but my eyes remain bloodshot most of the time no matter how I’m feeling. I keep thinking that it’s probably Dry eye sydrome since I have allergies. As for the after affects from migraines I am always left with an feeling of total exhaustion almost as though I’ve ran all day. I do not take migraine preventatives because I have mild mitrivalve regurgitation.
This is an informative post; not that I wish you had migraine/CDH, but it feels good to find someone else who understands this from a personal situation as well as intellectually. I’ve had many of the listed symptoms and not always in the designated phase, just like you. For example: extremely, extremely heightened sensitivity of smell – sometimes precedes a migraine and is the signal to me that a headache is coming, sometimes occurs simultaneous with the headache. It’s good to remind ourselves that the organizational schemes presented in official literature are the result of attempts to make sense of the broad range of effects that migraine has on its sufferers. The categories weren’t ordained by God – they are a conceptual scheme, useful when it works for you, but when your experience is outside the scheme, it just reflects the limitations of it (or any conceptual scheme).
Does anyone else feel as though their whole body is collapsing in on them. The only way I can describe it. Also I get a heaving stomach although I don’t really feel sick but have pains. And blurred vision, excruitiating headaches and very sensitive to noise and cold
Yes Rita! My entire body, head to toe, feels like it’s about to crumble in. I have all over pain, but different from anxiety or nerve damage. Complete muscle tension, but still different. My head and face will feel like I have a sinus infection and I will smell metal. Hard to breathe. Eyes heavy and barely open. Sensitive to light and sound and ears even feel like maybe cotton in them. Sensitive to hot or cold. Nauseous. Throat feels tight. Joints ache. Just all over. I started mine after a wreck a year ago. I’m treated with daily prevention medicine and have onset medication. I also have medication for seizure activity. I have a mild headache daily and just try to stop the migraines before are too bad, but with being a mother and the medicine knocking me out it’s hard to be able to have any relief. Any helpful treatments or preventions?
yes! I lose the ability to regulate body temp. if I get to warm, wham! vomit city. but then I immediately go to the opposite spectrum & I’m suddenly freezing & shaking like I’m outside in the tundra.
YES! Same here. Exactly what you all describe, feels like my body wants to implode, my eyes have a mild nystagmus during and I can’t focus them without it making it worse. My entire body hurts, especially joints and if I make them very stiff to orovide deep pressure it helps , but only while I am tensing up. I feel like my spinal cord is throbbing, my intestines are vibrating and I feel like electrical impulses in my brain. ALL my muscles become tight. Very cold hands/feet, but it feels best to stay cold rather than cover with blankets. Sometimes if I take NyQuil and fall asleep it helps. When the episode clears, I have no energy and my muscles are exhausted.