Working on an Migraine.com article about all the migraine symptoms that most people have no idea are related to migraine reminded me of the list of symptoms I made for my internist in 2008. The list of all the weird things happening in my body that seemed to have no explanation was more than a page long. My doctor had no idea what they could point to. Now I know that, except for cold sores, they were all migraine symptoms.
I’m a little uncomfortable sharing such a private list, but I think it’s important to show some of the possible varied and strange migraine symptoms, as well as how severe migraine can be. Most of them are direct migraine symptoms, but some were a result of migraine symptoms (like tingling arms, which was part of a cascade of physical reactions due to constant neck pain that ultimately resulted in pinched nerves). Certain symptoms were so normal that I didn’t even think to include them on the list, like tooth sensitivity, earaches, eye irritation, or neck pain. Others were such common migraine symptoms that I didn’t mention them. Still others I was embarrassed to reveal, like hallucinating sounds.
It’s odd to think that we can be in our bodies and still not be able to figure out what’s going on or dismiss the signals that something’s not working right. But we do it all the time. I have lived with chronic migraine for the vast majority of my life and have been writing about it for nearly 10 years. Still, it’s only been in the last year that I’ve been able to connect the last of these weird symptoms to migraine.
This list doesn’t represent all of my symptoms or even the worst I experienced, but they came shortly after the turning point when my illness went from bad to terrible, in June 2007. My symptoms continued to worsen for another 2.5 years. I lived it and still have trouble believing how incredibly sick I was. It’s no wonder people without migraine have no idea how severe this illness can be.
Symptom Summary for Kerrie Smyres, 4/7/08
- Current biggest concern
- Increases over first hour each day
- Food usually decreases for 1-2 hours
Feeling faint, lightheaded, blacking out (also chronic)
- Worsened by standing up, exercise
- Blackouts (either last less than 30 seconds or until I wake up)
- Usually mild; moderate
- Diagnosed with Meneire’s without hearing loss, 2000
Sensitivity to exertion/exercise
- Walking a half mile = feeling faint, lightheaded, exhausted
- Gentle yoga triggers pounding headache
- Bones feel heavy and tired
- Nap 3 hours/day at least 5 days/week (from 2 hours a year ago)
- Become unreasonable, irritable, exhausted
- Get lightheaded, woozy
- Often no obvious trigger; sometimes triggered by hunger, bright lights, crowds
- 15 lb. weight loss since June 2007
- Night sweats, chills, shivering
- Hands, arms tingle 3-5x/night
- Can’t get workspace bright enough when lighting was once fine (in kitchen, at desk)
- Whooshing in ears, like blood pulsing; worse during migraine
- Vision bounces/pulses always; worse during migraine
- Sudden decreased hearing & ringing in left ear; my voice echoes
- Canker sores, cold sores
- Heat intolerance
- Hand tremor
- Nasal congestion
- Constant thirst, drink 100-150 oz water/day
70 thoughts on “It’s Hard to Believe These Are Migraine Symptoms (But They Are)”
400mg/day B2 (Riboflavin), 50mg/day B6 (P5P), Magnesium. These three, after about 3-4 months, can relieve migraines. See the studies from National Institutes of Health (NIH). Hope you, and anyone reading, is/gets better.
I have read briefly over everyone’s comments about symptoms and I seem to be on the same page. However, without sounding crazy I wanted to mention that my migraine symptoms also include repetitive thoughts that I cant seem to get out of my head. When I am at the height of my migraine pain in my head specifically, I am extremely sensitive to lights, sounds, temperature etc. What seems to be disturbing to me though is I almost feel like I am hallucinating sounds and I cant seem to focus my thoughts and calm myself down. I cry and it makes the pain worse and I can feel the headache expanding to other parts of my head and even jaw. Yet, it is extremely difficult for me to refrain from crying and becoming out of control. My thoughts do not make sense and I fall into a pit of erratic and irrational thought patterns. Sometimes its a song playing over and over again or I become stuck on one specific thought or instance in my day or life. It is difficult for me to put my experiences into words. I was wondering if anyone else out there also has these symptoms in addition to the standard migraine manifestations.
Don’t forget allergies can trigger a sinus-migraine of epic proportions. Do not live in the country. I lived there half my life as a kid and am never going back, it’ way better in town here and now only get a real migraine once or twice a year, the rest of the year I’ll get many of the symptoms above but are spaced apart over the weeks/months and usually result in a medium headake, not a migraine! (usually with a droopy right eye and light sensitivity.) I’m not fooled though if things get too loud, brighter, any strong smells or I get too upset that will turn into a full-blown migraine. I’ll do anything to avoid that, the last one I had I must have spent half the night vomiting. Oh, god vomiting is bad enough but with a migraine? I wish I’d pass out!
My dad when I was younger also had migraines and he’d share him Imatrex, I miss that stuff. Two excedren and a cold can of peaches in heavy syrup does wonders nowadays. (I was desperate as a teen to feel better, the peaches helps with nausea a lot.) Well, along with a quiet dark room. With a kid? forget it. >__<
My maigrene syptoms are::
Half head pain each tim with changing position
Feel numbness in bdy parts .any idea to cure it ?
My maigrene syptoms are::
Half head pain each tim with changing position
Feel numbness in bdy parts
Also had 2 ct s abs and an mri which were normal. Blood work normal.
Look up dysautonomia. I have migraines and they beans chronic. I began having severe dizziness, upset stomach, lightheadedness, and my blood pressure and heartrate would fluctuate. My resting heartrate is 96 bpm with a standing and moving heartrate of often 120 beats! I ebed up in the er twice in 24 hrs. The first time they said it was anxiety. The second they said migraine vertigo. They blamed my blood pressure on the stress of it all. I went to see a cardiologist who after a week on a heart monitor and a tilt table test told me I had dysautonomia aka POTS Syndrome. Not much can be done to treat it other than taking lopressor and drinking a lot if water and increasing salt intake. Good luck! Please get checked!
Julie – my advice would be, and hear me out, to take your doctor’s advice – but also seek a second opinion. Migraines and their causes are widely varied and not well understood in many cases. Don’t fault your doctor for falling back on something they know. I had a sinus infection once that would not go away; pain and pressure but no drip. Every doctor said, “You have an upper respiratory viral infection – take these antibiotics with food twice a day” and showed me the door. After struggling for months, I was at a dentist appointment and they casually asked if I had been having sinus trouble. Turns out I had an infection in front tooth that was eating away at the bone. Easily fixed with minor surgery. The body is a vast molecular machine of phenomenal complexity, and doctors tend to go with what they know works in most cases per their knowledge in their area. It could be a combination of other drugs, your thyroidectomy combined with your fluorescent lights – honestly, no one knows and they might not ever.
The therapy may actually help no matter the cause though. Meditation, concentration, and many of the drugs can ease the anxiety and tension that can exacerbate the underlying triggers. It might not be a bad thing. It does not mean the cause is not real or that you are crazy – not by a long shot. It just means the cause is not understood, and the short-term solution may be dealing with the symptoms while a cause is explored.
And there is no need to switch doctors to get a second opinion. In my line of work, everything I do is reviewed and often people ask for my work to be inspected by a third party. I am not insulted; I am happy for the help and I accept both the validation that often comes and the corrections with equal gratitude.
If you are uncomfortable, say a friend or family member insists on a second opinion. Then just see someone else for a basic consultation. Believe me, the doctor won’t mind. If they do, you need a new one for other reasons anyway. But be prepared for the second doctor to suggest therapy as well, and understand that it may truly help. I’ve seen a guy that my neurologist suggested and I wrote him off as a new-age quack selling psychobabble to pay for his Mercedes at first, but this guy has taught me relaxation and concentration techniques that really help, to the point where I now try these methods first in lieu of drugs. I still go for the drugs as needed, but not all the time like I used to. And he helped me identify my triggers. Give that counseling a try, you may be surprised what someone unburdened by the medical mechanics alone can do.
My Neurologist just called many of my symptoms “somatic” I looked it up and it is a mental health disorder. So he thinks I’m crazy. He told me to see a counselor for all my myriad symptoms. Of course, he treated me just like the article said to treat someone with Somatic disorder. He assured me my symptoms were real and told me to see a counselor. I feel like I am being punished for keeping a very detailed migraine journal. He told me I had Intracranial Hypertension and now he says I don’t have it. Then he said my migraines were hemiplegic and now he said they aren’t. I don’t know what to think now. Meanwhile I am still having daily head pain that is moderate to severe, dizziness, blacking out, a tic that jerks my head to the left, speech disturbances that sound like I have a stutter, etc. etc…………I’m so frustrated and discouraged. This man is supposed to be the best neurologist in town and now I’m afraid to switch doctors because that’s what “somatic” people do. I just want to cry and disappear. I can’t work and have no life. I’m not crazy. This began after thyroidectomy from cancer, although I’ve had migraines since I was 11. Sorry for going on and on but I’m becoming desperate.
Rebecca – like you, I have not suffered my whole life, and I hope it helps to say that I completely understand – I am sure so many people here do as well. But with medication and early section of your triggers (which you’ve noticed that you’re getting really good at), you will be back to your old self in time – I promise. I might suggest for both piece of mind and heath reasons, that you could get one of those small carbon monoxide detectors that plug into a nearby outlet and just keep it in your bag or purse or something, and plug it in near you when you are working. If practical to do so, I found some white noise or even some music really helps when I start to notice that sound in my ears. And above all, if you were given medication to take when you get the migraine (as opposed to a daily preventative) – take it as soon as you detect a trigger. Don’t wait for the pain or other side effects.
Hi I never suffered with migraines or head aches in the past. We have recently found out we have been sitting in a room with low levels of carbon monoxide at work. I came home from work one evening slumped in a chair. The next I know I’m being took to the hospital by my partner. We went Into he hospital I went weak. The next I know I’m being blue lighted from that hospital to another for a potential stroke! Had a 4day stay being treated as a pin cushion.. to then being told I had a hemeplegic aura migraine. My triggers are now smoke,Exhaust fumes but since leaving hospital I have lost the hearing in my left ear it started to come back. But it’s faint. Been to docs he took a look said they were fine. But I’ve been struggling with sounds ever since and have since learned it is also a trigger. I’m gutted to have to experience such a thing. It’s awful and wouldn’t wish a migraine o anyone. I now have to take medication to prevent my triggers. Some days it’s good some days it’s bad!. Work have done loads of work on the building to prevent the issue. But no anxiety has got the better off me. I want to return to work but I’m feeling with my triggers it might be near on impossible. What to do I’m so low.
Rebecca, I’m so sorry you’re going through this. It sounds so scary and frustrating. I don’t know much about carbon monoxide poisoning, but I have struggled with anxiety about triggers. It has helped me to research them and figure out how they might be avoided. I use a charcoal face mask for odor triggers (http://amzn.to/2ldNdbX) and always carry ear plugs just in case I need them. I often don’t need either the face mask or ear plugs, but having them on hand easing my anxiety. It’s also important to know that when you find effective preventives, your triggers won’t be as much of a problem. If the preventives you are on aren’t effective enough, you can always talk to your doctor about adding more (if you’re concerned about taking medication, there are some good non-pharmaceutical preventives, like magnesium and riboflavin). Having such a sudden drastic change must be so overwhelming. Fortunately, there are many good treatment and trigger management options, though it may take some persistence to find the best combination for you.
PS. My otoneurologist confirmed it. Read Oliver Sacks’ book “migraine”. Fascinating the ways your brain during nerve spasms works.
Auditory hallucinations are not uncommon with migraine. I have had them along with a phantom sort of replay, e g : my phone will really ring and then ring more softly every ten or so minutes for the next half hour
I’mi hoping this explains what’she happening to me…but I haven’t kept tabs on when the come. I have both migraines and occipital neuralgia. I started having extremely real sleep hallucinations awhile back. Extremely vivid that I could hear and feel, but was too scared to open my eyes, until I heard what they probably were. Haven’t had them for awhile. But every once in awhile, like once every two or three months, I hear something BIG crash to the floor and in the general direction where it happened. I jump up and run to see what mess I will find. Everytime, nothing. I search the house, every single room, and nothing. It has gotten so that when I hear such a crash, half the time I don’t even get up to look until I am up later.
The big one happened this morning though. I was getting ready to go to the dr, and my parents were going to drive me. With my head pain, I rarely can drive unless my pain pills are working well at the time. I was brushing my teeth and I heard VERY distinctly the sound of my father’s laughter. Just for about 5 seconds. I thought he just got here a few minutes early and came in the house. I peeked out at the door, where I clearly heard him laughing, over the sound of my electric toothbrush. FREAKY!
I am in my late 40’s. I’ve struggled with depression badly several times (I read somewhere–maybe here too, that that makes a person more susceptible to hallucinations in conjunction with migraine)
Your post was very re-assuring to me. A couple times per year, I get a bad migraine where, after the pain subsides and I am sitting quietly, I “see” and hear afterimages of previous events throughout the day. For example, if I was talking to someone, I see their face and watch their lips move in flashes especially when I blink or close my eyes tightly, and if I relax I can hear the conversation just barely, as if it were in the next room. Loud sounds like dishes, bumps, and phones ringing replay almost randomly. I am totally calm and I know what’s happening, and there is no confusion or disorientation. But if I blink rapidly, it’s like I can replay an old conversation or re-watch a TV show scene for scene with more detail than I would think possible. It’s freaky, but after experiencing it a few times it’s no longer frightening.
I’ve spoken to my doctor who does not seem to understand my description, but confirms that migraines manifest in widely varying and unusual ways. For me, the “hallucinations” (if they can be called that) are typically a sign that the migraine is ending soon – maybe 30 minutes before I am without symptoms. I don’t like to take pain pills, but I’ve found non-narcotic treatments highly effective. I have never struggled with depression or anxiety, and I am in average shape. So I don’t think your condition is related to other problems, but I am not a medical doctor so please don’t take that as anything other than an uninformed opinion.
I’ve learned to just calmly enjoy the marvel of how much information the human brain seems capable of storing, and wait for it to pass. I am so glad I am not alone in this.
I have had Aura migraines for 32 years and they come on suddenly in fact I’ve woken up to one now , full on flashing lights in zigzag formation like a snake that twirl and spin making my vision blank in areas , what exactly triggers mine is maybe hormones or I get a bit hyper but because so far and in between now I still don’t see the warning signs till too late!! Sunglasses tend to help sometimes , worse one I had was on holiday abroad where all my vision went and I only saw through a peep hole like bit of vision , no matter how many you get they are always scary , hope you all get the best relief you can find , regards janette
I have been getting migraines, full blown, cant feel one side cant see cant think just shoot me now migraines for over 40 years. my mom and her mom and my daughter all have or had that in common. I know I was a test subject for different “cures” that never worked. what I have found to help the most is a heavy duty pain med and complete relaxation. letting all of your muscles go limp for a few minutes is hard to do. I fill up the tub and use a bath pillow to just float. When I had a migraine that lasted for three months, I had an MRI done and it showed I had too much fluid at the base of my brain and a little higher. My csf wasnt dissapating like it should. That was years ago. Long story short, I studied my migraines, and learned as much as I could from others. I am not a doctor, but I do have a very logical mind. After my bout with hydrocephalus (too much CSF) the only thing that makes sense is that migraines are caused by some kind of pressure to the brain. Be it extra fluid from PMS, allergies, something you ate, or muscle tension blocking the normal flow of fluids ( Its hard to stay relaxed when you feel a migraine starting and that adds to the problem.) That would explain why some people feel relief, just for seconds at a time, by tapping their head against the wall. The vibrations make things move around. I find myself doing that or humming. But as a migraine sufferer of about two a month the best help is to a. take a pain pill and an allergy pill. b. forget about trying to think and completely relax your entire body. close your eyes and float. the more you try and think or tense up the worse it gets. Trying to look around the aura makes it worse too. Take deep breaths and let your muscles go limp on the exhale. keep doing that. and c. make sure you are warm enough to relax. although some people like a cool cloth on their heads. I hope this helps others out there that migraine meds do nothing to help.
I have THIS. Exactly this. Ive just been diagnosed by a neurologist and have all of those symptoms.
You say it has lasted 10 years. is this a normal duration?
If this is the beginning of 10 years, I am unsure what to do!…
Liz, please don’t worry, migraine is very treatable once you have a diagnosis. A very small portion of people are resistant to treatment, but they are in the tiny minority–I just happen to be one of them. Best wishes for quick relief. You are almost certain to find it.
Around 1995 I was at relatives when a visitor lit a cigarette. I’ve always been allergic and some brands are worse, I’ll cough, eyes will water and my throat sometimes nearly shuts off and I become hoarse which is what happened. Normally when I get away the symptoms leave but this time they didn’t. My head began to pound and I experience my 1st migraine. In the morning my face was swollen and I couldn’t open my eyes, soaked with cold towels and finally I could see. My head was still pounding with terrible pressure. When I ate my stomach was get very hard and the pressure would increase, never been so miserable. This only affects the left side of my head, when really bad my top left teeth throb like there is something stuck in them but there isn’t and my sinus area feels like there are bubbles popping. I’ve been to many doctors over the years but none know what is wrong or how to treat me so I suffer every day all day! The left base of my skull is very tender and sometimes I have sharp shooting pains on the left back of my head. Just recently the base of my skull on the right side is hurting. The pressure increases with strange things and I have had to change my whole life. I can’t have anything around my waist that pulls in so have to wear elastic waist pants that are too large so they won’t put on any pressure, even if my shoes are tied too tight the pressure will start to throb. Setting in any type of vehicle that the bottom seat angles back putting pressure on my lower spine will really increase the pressure and cause my teeth to throb. Even something so minor as a stretch bracelet will cause and increase or a necklace or the elastic on a cuff and the list goes on and on. I rarely have what I would call a headache but am finding that “headache” covers a lot of circumstances. Of course I’ve tried many medications and have found I have a sensitivity to many but nothing has eased the pressure. I do have fibromyalgia and have wondered if it could be the culprit. I’ve wanted to be hooked up to wires on my head to see if anything shows up but that type of test has never been mentioned. I know my personality has changed and life doesn’t seem worth living most of the time since the pressure never stops. Every second I fight to keep an half way good attitude and open mind that some day some one can help me. Thank You for listening.
hi I glad I am not the only person suffering with this kind of migraine ,I have burst a energy a couple days before .my hearing is gone and unable to see out for 1 to 2 minutes .my husband is not always understanding .this happen to me in a busy store he yelling at me for walking into people. he assumed I was walking into people but I really was having a migraine aura with my hearing was gone and I was unable to see for 1 -2 minutes it takes 2-3 days to get over these even with medication
Mouth sore ;Earache;tooth sensitivity oily skin been have migraine for the past week what’s the remedy
I have all those system, especially the thirst and fatigue and unable to exercise. The thirst is bad. Run for ice all day. There are different migrane. I have cluster migranes, so many different things can trigger them, to a smell. Nausea from smells, hypersense of smell to. I think people I know think I am crazy. They don’t believe these are symptoms of migrane. They don’t understand. I had to leave the house the other day cause of the smell of banana bread. I am on two different meds to control the migranes and symptoms. Its hell
Yes. I have not used it, but I have heard that medical marijuana can relieve the pain.
I mean after the flower has done with the high
But the pain do come back after the flower has felt u
If your lil girl cant take meds get her. A medical card for thc it will take the pain the struggle in this cases i get them bad been having tjem for 3 days. Now almsot 4 days.i smoked weed just a lil a nuff to get in the blood streams And it went away just want to help u dont have to but it will be no more pain
I don’t know if this forum allows links, but here is the link to the National Institute of Health webpage regarding chiari. As I read the symptoms, I would definitely get it ruled out.
If the link does not appear once I submit, here it is to copy: ninds.nih.gov/disorders/chiari/detail_chiari.hrm
Here is another thought. Chiari malformation is where the brain slips down into the spinal cord. The symptoms are very similar to Meniere’s and Migraine Associated Vertigo. But there are a lot more symptoms besides. It can be a pretty multi-faceted and difficult issue. Look it up and ask the neuro about it as well. I had a number of MRIs of my head for different reasons and NO ONE caught the Chiari. My brother is a retired radiologist and he caught it. The neuro said I was a very lucky person because I also had a malformation that accommodated it and kept it from slipping too far. DEFINITELY TAKE THE MRI TO SUPER NEURO, along with other test results etc. Don’t assume that others have sent them. Also – you can play it two ways: include all of the doctor notes so super neuro can move quickly past stuff already done. Or you can choose not give notes and respond as super asks questions and offers dx’s. What I found early on was that ENTs would put me through expensive tests and then just concur with previous doctors without hearing me when I said that the symptoms were different and/or looking for other reasons for the symptoms like migraine associated vertigo.
Don’t forget too that the reason more women than men have migraine is because of hormones. It is also why women have increased symptoms when young and again in menopause (a big factor in increased activity for me). My otoneurologist says that this should quiet down after menopause.
I am sorry to hear about your various issues – I understand just not feeling well at all from the chronic effects of many illnesses, including Type I IDDM.
I had migraine headaches for a few years as a young woman with the visual auras and all. In bed, with terrific pain, throwing up. That was an easy dx, classic.
All was well until 2001, when I began the vertigo and was told by multiple ENTs that it was Meniere’s. I did not have headaches with the vertigo. I basically stopped eating everything but fruit, vegetables and beans (Macrobiotic) which, along with deep tissue massage on neck and upper back, knocked out the vertigo. Looking back, I think that I removed migraine triggers by limiting my diet.
A year after I went into remission, I had very fast spinning for short periods (30 seconds). It happens that it was a week after they took me off of Enalapril, an angiotensin to treat high blood pressure. Angiotensins are known to mask migraine symptoms. It was a very good “super otoneurologist” who dx’d MAV (migraines associated vertigo) and put me on Lamotrigine (Lamictal), an anti-seizure med. I just had my first vertigo attack in ten years since I went on the Lamotrigine last week, along with a headache at the same time. But then I accidentally OD’d on caffeine. You can ask your doctor about angiotensins and whether or not one is interacting in some way with your migraine symptoms. And you can ask about Lamotrigine.
I have recently learned that Benadryl can help with migraine pain. They gave it to me when in the hospital for a migraine attack.
If you want to understand migraine, get the book by the same name written by Oliver Saks. I don’t know if you remember the movie “Awakenings”, but he was the doctor involved in that very interesting incident. In the book, he says – very basically and in my words – a migraine is a large misfiring of nerves – sort of a seizure of nerves (again my words) and can happen in other area of the body as well, like the stomach. Perhaps this is part of your various symptoms.
When I had the vertigo, I had no headaches. When I had headaches, I had no vertigo. (Unti last week.) But both are so upsetting to my system that I throw up intensely with both.
I think that diagnosing migraine is based solely on patient input – symptoms – there are no definitive tests. I could be wrong. One thing your doctor is going to want to do is rule out all physical reasons for your symptoms, doing tests like MRI’s, MRA’s (looks at vessels) to rule out aneurysms and clots and blockages, maybe CAT scans (I go for one tomorrow to rule out abnormalities in my ear structure before they assess more advanced assistive hearing devices).
Don’t forget too that there are different types of migraine. Mine are basilar which means the triptans are counter indicated – could cause additional damage – which is why you need a super neurologist.
I just learned recently that migraine can cause permanent hearing loss. Not many doctors know about it, but it is on the National Institute of Health (.gov) website. You might take that to for appointment, if it is a concern for you. Looking back, if I had gone to a neurologist in 2001, instead of ENTs, I might have my hearing today.
If I think of anything else, I will share. I wish you luck and blessings. You are on a journey.
I don’t know where you are in Kentucky (yes?), but if you can get to Columbus, OH, there is an amazing oto (ear) neurologist at OSUMedical Center in Gahanna (suburb) by name of John Oas who deals with various reasons for vertigo, including migraine. Great doctor, very thorough. Was a NASA scientist and thinks of everything a puzzle to be solved. Very knowledgeable. Very detailed and methodical.
Ask anything any time and I will try to help as I can.
I am a type 1 diabetic for 25 years. I have a long list of mystery symptoms that triggered suddenly in the fall of 2010, twice the length of the presented list with basically all your symptoms too, and confusing enough that no doctor at my local clinic could put it down to any one thing. I finally saw a neurologist who was furious I hadn’t had a spinal tap and referred me to KU Med, an equivalent to Mayo, and to another neurologist. He did suggest migraine plus general inflammation and encouraged me to continue with an allergy test. I’m familiar with the other things the clinic drs thought I had–I’ve been tested for everything from Lupus to MS, Hashimoto’s to Lyme and other insect borne illnesses, I’ve had enzymes and basic blood chemistry done. I have not had an x-ray of my back or any MRIs done lower than my head.
How was your migraine diagnosed, and what medications did you try? I keep having bad reactions to the suggested pain relievers(tramadol gave me serotonin syndrome and toradol made me drunk). My GP at least considers me a chronic pain patient. I would love comments from anyone who can offer me insight–I don’t see the super-neuro till late June. Thank you!
Suzanne, I’m sorry you’re going through this. It must be so frustrating. I was diagnosed with migraine before most of the other symptoms came on, but I had the primary migraine symptoms used for diagnosis. Here’s some information on diagnosis: https://migraine.com/migraine-diagnosis/, including a list of hallmark symptoms. If you do have migraine, a doctor will likely prescribe a type of drug called a triptan (it will probably Imitrex or sumatriptan). Triptans are migraine abortives and can seem magical to some people. Another option might be Midrin, which is an old drug that gives quite a few people relief. Best of luck finding relief.
Suzanne. I left some posts re migraines and possibility of Chiari Malformation on the headache forum but did not put them under your post so I don’t know if you were notified of the posts. I think you should at least rule out Chiari so I am putting this here so you will hopefully receive an email notice and will look at my posts. I wish you the best in all of this.
I have found over fifteen years that deafness and hearing and oto(ear)neurology issues are not clear cut and you can experience ALL sorts of sounds, noises, aural hallucinations, fullness, pressure and so on. And each of us describes things differently – fullness vs. pressure. I have had tinnitus that sounds like static, literally like aliens trying to communicate with bleeps at different frequencies, and tinnitus so loud it was like a jet engine and I staggered to the other side subconsciously to get away from it. One thing that is a little weird is aural hallucinations which sometimes display as a repeat of a recent sound, like minutes sometimes hours after your phone really rings, you can still hear it ring faintly. When that happened, my phone was in my purse and I kept thinking that it was ringing but more softly because it was in my purse. After the fourth time I checked it, I realized what was happening and stopped. I called the doctor who explained it. Now, I just realize “yup, there’s a new symptom”.
Oh wow!! Someone else who has decreased hearing and tinnitus with echoing voice!!!! Do your ear also feel full when that happens?? Ive just been diagnosed vestibular migraines
Danni, it feels a little stopped up, but not full. I’m glad you have a diagnosis to work with. Best of luck finding relief.
My sister is diagnosed with migrane but no medicine seem to work for her and the pain most of the time is unbearable what shd we do
Kira, here are some random thoughts. Make sure she has seen a neurologist, not just a family doc. There are different types of migraine that preclude using certain medicines – you need a neurologist to figure that out – I have basilar (lower back of the head) and cannot take meds like Imitrex. I am assuming they ruled out other issues like a tumor. There are different types of medicine – the ones you take just after the migraine starts which I believe Imitrex is one, and the ones you take routinely to prevent migraines such as Topamax and Lamictal (lamotrigine) both of which are anti-seizure meds.
When I get a headache, they have given me a cocktail of Reglan (which helps move food through your system but also helps somehow with migraine, heavy duty Tylenol or NSAID and promethizine because I can’t keep food down (will really make you drowsy – do not drive). I also take Tizanadine which is muscle relaxant because I really tense up with these and there is an overall tense muscle component down my neck into my shoulders. I experience it first, then the headache.
Try a very restrictive diet and add items back in one by one to see what foods trigger headaches. Also, there are non-food triggers like the weather. Many migraineurs keep logs to look for coincidences. It takes time for the diet to work because you have to get triggers out of your system, and the routine preventive drugs need to build up to a therapeutic level. There are natural migraine supplements, but I have never tried any of them. My massage therapist (deep tissue – going after problems – NOT relaxation massage) works with other clients who go to him for migraine.
During a headache it actually does help to lightly bang my head against a wall. Sometimes the way I hold my head during a headache can help. Holding my head in my hands can help, as well as massaging my scalp. A dark room with no noise is a must.
Your sister will probably need to do many things simultaneously. I hope she can get some help.
it took me 20 years to realize oranges were triggering my migraines….
P.S. The main reason I posted my story is to tell you that if you or anyone you know has been dx’d with Meniere’s – don’t accept it at face value and don’t wait. See if the doctor will agree to a trial course of an anti-seizure med like lamotrigine or topamax used to treat migraine, especially if you have a history of migraine (I had excruciating, full aura, vomiting migraines as a teen) or you are at a time of life with fluctuating hormones particularly menopause. I lost virtually all of my hearing in my right ear and part of the hearing in my left ear due to so many and such violent vertigo attacks from 2001 until 2006 when I was put on the lamotrigine. I wonder if I would still have my hearing if I had been put on this medication that would have eased the migraine attacks earlier.
Hi, I just saw same Dr. I’ve been having hyperacusis since specific incident at work. (Someone yelled into speakerphone-my mic while I was wearing headset and hearing aids. ) 5 days of hell. Felt like concussion more than migraine. (Or stroke as some have said here) don’t have history of migraine (in my opinion) but now dx of migraine is added to my list. I thought migraine sufferers had them over years, and frequent…not just one time incident. Educated myself abt hyperacusis…migraine dx come out of left field for me…
In 2001, I was dx’d with Meniere’s with all of the classic symptoms. I have had remissions and periods of extreme daylong vertigo and nausea attacks (every third day in 2005). During a remission in 2006, I began having very violent vertigo that lasted about one minute – very different from before. An otoneurologist picked up on it and put me on Lamictal (lamotrigine), an anti-seizure med used off label to treat migraine. I have not had one attack of any kind in the 10 years since. A recent comprehensive vestibular test (rotating chair etc.) confirmed I do not have Meniere’s because there has been no degradation to my vestibular system. Looking back, I had been taken off Enalapril (an ACE inhibitor/blood pressure) the week prior to the beginning of the mini-spins; ACE inhibitors are known to mask migraine. I also had put myself into remission once via macrobiotic diet which now I believe eliminated migraine triggers. I had visual disturbances the eye doctor could not explain, vertigo attacks from strobe lighting like bright sun strobing through trees while driving, visual and auditory hallucinations… but I did not have headaches. But… here’s the surprise. I did not know until now that migraine can actually cause permanent hearing loss, tinnitus (buzzing), hyperacusis and virtually all of the same symptoms of Meniere’s. Let me reiterate – migraine can cause permanent hearing loss. Who knew? It was migraine all along. If you or someone you know has been dx’d with Meniere’s which is a throwaway (we can’t find anything else) dx and you have been told to “live with it”, run to a good otoneurologist (mine is John Oas at the Ohio State University Medical Center in Columbus /Gahanna suburb/ in Ohio) and do your research. Also menieres.org had a big MAV (migraine associated vertigo) forum group who helped each other immensely when I hung out there. I wish you all well.
Axert is also a wonderful medication to stop the migraine in its tracks as the triptans didn’t do much for me
I’ve dealt with crippling migraines for years and have been hospitalized multiple times. Tonight is the first time I experienced the echo though. I have botox treatments every 3 months which keep away the migraines for 2 and a half months COMPLETELY. It’s not recommended for most children but it definitely works for adults
I have almost every one of these symptoms!! I have been seeing dr after dr with no answers. How did your Drs figure out these symptoms were from migraines?
I recently experienced my first migraine last year. I had much vertigo and nausea before I knew I even had the migraine. My question is, is there anything you can take to make the symptoms go away before the migraine get worse? Is there a certain diet you should have when you feel a migraine coming along? This was an excellent article that gave many examples. Thanks!
There’s something about being able to relate to someone else that makes me feel slightly better. I developed chronic migraines two years ago after an accident. Before that, I was a relatively healthy young person (under the age of 30).
Anywho, here are some of my weird migraine symptoms:
The artery in my neck hurts which results in a sore throat after
Full body spasm…it’s like when you get a chill, but only way more frequent and not caused by a chill
Shadows in my peripheral
Get cold easily
And then I have the classic auras, pulsing headache, light sensitivity, mental foginess, congested feeling, etc.
how do you treat this.. The echoing in my ears while talking or with sudden noise is driving me nuts. I do have quite a few of the symptoms and also sub clinical hyperthyroidism
I have almost all those odd visual and aural disturbances and to be honest they are the part that I define as being really “migraine”. The pain itself isn’t as bad as all the disturbing neurological symptoms which always make me wonder if I’m having a stroke…!
By the way I have found that thats a good way to explain the difference between migraines and regular headaches to people who’ve never had one : tell them that it feels like a stroke! Or explain that migraine is a neurological misfire in your brain that is similar to an LSD trip (researchers say so anyway) except, it’s a bad trip where you constantly fear your brain is damaged or dying!
“That no one has ever died from a migraine is little comfort to someone in the throes of one” – that’s a quote from a book I read about it. SO TRUE! Except unfortunately people do die of illnesses with similar symptoms all the time, and there’s the rub. We can never really be certain that this time, it’s not something serious.
Kerri I think I have you the impression that my daughter is still you and I’m sorry for the confusion. She is 28 , so if you have any advice for her please let me know. Thanks.
Susan, many of the same ideas apply. A headache specialist (here’s a list of them https://www.ucns.org/globals/axon/assets/10300.pdf) is her best bet, especially because she’s allergic to some medications. General neurologists get little training in headache medicine. A specialist can help her find medications that both work and aren’t harmful. If she’s allergic to triptans, the medications I mentioned above are still options. Painkillers can actually make the problem worse, so finding a doctor who will prescribe migraine-specific meds is a good idea. Finding a good acute treatment (during a migraine attack) is important, but if she has them frequently, a preventive (daily meds to reduce the frequency of migraine attacks) is very important. Ideally, a preventive will keep her from needing acute meds as often. I hope this helps.
Have you looked into doing genetic testing through 23andme? There are a ton of genetic mutations that play a role in ones health. For instance many have a MTHFR (yes that’s not a typo) gene mutation. This mutation makes it difficult to process folic acid and one must supplement with folate or folinic acid.
It’s a quick and easy test that you can do from home and mail in. My husband did it and is now seeing a functional medicine doctor to sort through the results. She currently has him on a elimination diet, envymes and probiotics. The thought is that there is a brain gut connection. A functional medicine doctor tries to find the cause of ones symptoms and not just mask them. Hopefully my husband will get some good results by seeing her. I just wanted to pass that along incase you have not heard of 23andme or functional medicine.
Pam, I’ve had genetic testing done. While I do appear to have the MTHFR mutation, even a small dose of the supplement triggered a pretty severe depression.
I would love to hear what your husband’s doctor finds out and what ultimately helps him. There is absolutely no doubt that the gut-brain connection is at play for me, but finding out what it is has proven elusive. I’m doing a couple tests soon that I hope will shed some light on the issue.
Oh, and the doctor I saw for functional medicine was an absolutely disaster. I may try someone else, but I’m skittish after that terrible experience.
Have you been checked for POTS? http://blog.crowdmed.com/pots-the-most-common-medical-condition-you-never-heard-of/
Barbie, yes and I don’t have it, though I know a lot of people with chronic migraine who do.
i have all of those symptoms at some point in my migraines. I didn’t really the auditory hallucinations were connected to migraine. I am forever hearing someone call my name and most often no one is. Thanks again for sharing. I too have had migraines for most of my life (learned to say my head hurt by age 2) and am so glad to know there are others out there and that I’m not alone.
Kristina, you’re definitely not alone. I’m sorry you’re in this, too, but am glad we have such a great community for support.
In reply to Ann’s post above it seems that some migrainers can eat some histamine containing foods for a while and then must back off to let the body get rid of the excess histamine so it does not mean we have to be off it forever. I have been eating salad dressing recently with balsamic viniger but decided to back off for a week or two before the headaches come on. I guess the trick is to discipline yourself to back off. It’s easy to just keep consuming the h containing foods.
Kerrie I hope you have never had migraine with aura. I had one a few weeks ago and it was trauma, sheer trauma. I would not wish this on my worst enemy.. Don’t even want to go into what happened.
Julia, I’m sorry your aura was so bad. Whether or not I have aura is uncertain, but if I do, it’s very subtle. I’m sorry that wasn’t the case for you.
Sorry to hear about your symptoms.
Please post about misalignment of the body as a possible cause of migraine. I find that as my body becomes more aligned my headaches are lessened. somewhat I have scoliosis of the spine probably from sitting for 40 years in the half lotus posture during meditation. Everything is now leaning to the left and I think it causes headache. Maybe that’s why some people who are in car accidents end up with migraine; misalignment of the spine and bones of the head? Hope you are feeling better these days.
Julia, thanks for your sympathy. Fortunately, most of them have lifted as I’ve been feeling better. There’s really no solid research about misalignment of the spine as a migraine trigger. The best I can say is to see a chiropractor if you’re comfortable with it. Some people find chiropractic to be an effective treatment.
I identify with a lot of those symptoms, even when I don’t have overt head pain. Or, I have very very mild background head pressure but my eyes are red “looks like you’ve been crying”, or my ear feels pressure/mild pain, and am almost always congested…
Sounds like your earlier description of histamine effects, doesn’t it?
Thanks for posting all of this.
Also, a month or so back, you gave me very detailed reply on doing elimination diets (broccoli seemed to be causing me headaches), and I continued to have so many headaches that I just took a long hiatus from the computer. I think my biggest migraine trigger is a previous recent migraine. Anyway, I never thanked you, and I felt bad about it. So thank you, here.
(Don’t know if you see follow comments on old writings you post, so didn’t know if you’d see it if I posted it below your reply).
I have not religiously adhered to the low histamine diet because I feel it so restricting…you know, when you do adhere, a week goes by and you feel a lot better, so you (I mean I) get cocky and eat something higher in histamine, which begets more choices higher in histamine, and then the headache cycle starts again. Anyway, your above list of symptoms motivates me to really knuckle down and do this.
No worries, Ann. I’m glad you’re doing a little better. The low-histamine diet _is_ very restrictive at first. The longer you’re on it, the easier it is to find good things to eat on the diet and to branch out a little bit. I find that if I adhere to it pretty strictly, I can eat treats occasionally. I wish you the best of luck getting this sorted out.
Hello, I have some of the same systems as you do, but my poor daughter Nicole has all of them. She has been suffering with migraines since the age of 13. Nicole is allergic to all of the migraine medicines and it affects her breathing. She goes to a neurologist but nothing seems to help, all they do is give her pain meds and she can’t take them the rest of her life and she didn’t want to. Thanks for listening. Susan Kennedy
Susan, have you taken your daughter to see a headache specialist? Some general neurologists understand migraine well, but others know very little about it. Here’s a list of children’s headache specialists: http://www.migraineresearchfoundation.org/childrendsdoclist.html. I’m guessing you mean she’s allergic to triptans. Midrin, Migranal, and DHE are also used for acute migraine treatment and may not share the triptan ingredients that are problematic for your daughter. I’m not sure how often they’re prescribed for kids, though. There are also preventive migraine medications that she could take daily to prevent migraine attacks from happening in the first place. Again, what she takes depends on her allergies and needs, but there are some good options available.
You probably know all this, but here’s an overview article I wrote on kids and migraine: http://migraine.com/blog/children-migraine-11-things-parents-need-to-know/. Also, the American Migraine Foundation has recently published some helpful information on migraine in kids: http://www.americanmigrainefoundation.org/about-migraine/headache-in-kids/.
I wish you and your daughter all the best.
I know it’s a little late and I hope that by now your daughter is feeling much better, but her story reminded me of my own, so I wanted to share the solution I found. My migraines came on one day when I was 14 and became a nearly daily thing. I tried many drugs recommended by a neurologist. But it wasn’t until I started birth control that my symptoms magically went away. I had to take my birth control continuously (not get a period) to prevent migraines during the “hormone-free” week. No one linked my migraines to hormones at first because they happened all month long, but for whatever reason the stability that birth control could give my hormones was a magic fix. It’s been 8 years since, and I never had another migraine until last month when my insurance stopped paying for my type of birth control (non-generic Yaz).
She should try oxygen it worked for me as well as feverfew…Mine were so severe if I had a gun I would have shot myself