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30 Things About My Migraines

This is a reader-submitted story.

1. My diagnosis is: Acute Migraines
2. My migraine attack frequency is: Varied depending in triggers, and medication. I also suffer from cluster headaches, tension headaches. A migraine can last for up to 9 days which had been my longest. Four days the shortest. I generally have some sort of headache daily.
3. I was diagnosed in: 2014. I had a major head trauma when I was 9 whereby an object dropped on my head from an eight floor window. The object was large piece of solid wood. No puncture wound so it was all pooling and putting pressure in my brain (causing slight damage) put into an induced coma whilst they drained. And drained. Eventually I was allowed to go home and took the next 6 months to recuperate. I have barely any memories of accident or afterwards up to about a year. My memory has been damaged. I was basically told that if my skull had been a bit harder it would have caved in. So I am extremely lucky to be alive. This is where the migraines started.
4. My comorbid conditions include: Visual aura, vertigo attack, panic attack and occasional fit like episode. Eyesight problems in the eye I suffer clusters over, double sighted, short sight and eye pulling towards my ear. I now have to wear prisms in one eye glasses which I have only just been diagnosed, I’m also having sinus problems that is not an allergy.
5. I take __5__ medications each day for prevention and __1__ medications/supplements to treat an acute attack I have also had occipital blocks (didn’t work) and am now in the middle of a lidocaine IV infusion procedure. 2/3 so far the latter being 2 days ago. Had two fits during the last procedure so my pain consultant may not proceed but look at another method. I will find out start of July.
6. My first migraine attack was: Around 10 years old. Two years ago I had a migraine whereby I also had a fit. I’d never had a for until then. Very scary and since then have been unable to go back to work due to the fits and vertigo.
7. My most disabling migraine symptoms are: Vertigo, blind spots and confusion. Just being downright yucky…I hate feeling nauseous and physical sickness makes me cry because I don’t like doing it. So when sick the crying doesn’t help the migraine! I’m now medicated for the sickness/vertigo.
8. My strangest migraine symptoms are: Smell! I smell strange things and also hearing things.
9. My biggest migraine triggers are: Sunlight, stress, flashing lights (mainly emergency vehicles) vertigo.
10. I know a migraine attack is coming on when: I start seeing zig zags…or having a vertigo attack.
11. The most frustrating part about having a migraine attack is: Losing out on family life. Not being able to string a coherent sentence together. Forgetting things, having to cancel appointments or forgetting about them.
12. During a migraine attack, I worry most about: Having a fit.
13. When I think about migraine between attacks, I think: I get angry and frustrated with missing out in things, not being able to do things like dancing and seeing live music. I also get jealous of people who can go about their normal life, job etc.
14. When I tell someone I have migraine, the response is usually: That they usually go to lie down in a darkened room with a cool cloth on their forehead (those that don’t know me) Those that do usually ask if I’ve taken my tablets and can they do anything.
15. When someone tells me they have migraine, I think: I’ll usually try and give them some advice, for instance sumatriptan is available over the counter.
16. When I see commercials about migraine treatments, I think: If only it was that easy
17. My best coping tools are: My family. I also have a morbid sense of humour so that helps. I am an eternal optimist.
18. I find comfort in: My attitude to my migraines and other physical problems I have.
19. I get angry when people say: Calm down its just a headache you’ll get over it!
20. I like it when people say: I’m not sure to be honest. I have neurological problems with my back, hip and shoulder due to 3 prolapsed discs. I’m very stubborn and very often refuse help to my own detriment. So I guess when someone insists, because then I am relieved that someone has been gutsy enough to take my stubborn irritability on!
21. Something kind someone can do for me during a migraine attack is: Telling me to take my tablets as I often forget. Not ask me if I’m ok.
22. The best thing(s) a doctor has ever said to me about migraine is: it was actually a allergy nurse. First she commented in the amount of meds I had to take as I also have to take other meds for back. We had a bit of a giggle about being a pin cushion (IV’s allergy clinic) and then she went on to say how she admired my optimism and determination to get it all sorted so I could get on with my life. That have me a nice lift mentally. The funniest thing my pain doc said was ‘wake up’ in my ear really quietly as I had fallen asleep in his waiting room! He’s a fantastic doc, and I realise how lucky I am to have him taking care of my pain management.
23. The hardest thing to accept about having migraine is: How bad tempered it makes me. I was a happy go lucky laid back person. I am that person, no more. I’m snappy, argumentative, impatient and miserable. Being in constant pain, head, arm, hands, fingers, Back, hip, leg, ankle, foot. All right sided. Having to constantly rely on others.
24. Migraine has taught me: That invisible disabilities exist! My family are great!
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Sleep will do the job.
26. If I could go back to the early days of my diagnosis, I would tell myself: Not to expect miracles. There is no magic cure.
27. The people who support me most are: Family and partner. My partner has put up with a lot. He’ll work a full day ad come home and do the chores, cook dinner etc if I’m feeling unwell. He’ll make a cup of tea if he gets home and I’m in bed with out moaning about it. He lets me sleep whenever I need to. He strokes my head to make me sleep when I’m having trouble. That actually works, we think it may have been a baby/mum thing. My kids are brilliant. One of my daughters sticks to me like glue and does all the things I’m sometimes unable. She comes to all my appointments, takes notes etc. Stops me from falling over or walking into things (vertigo)
28. The thing I most wish people understood about migraine is: It’s not just the pain, it’s the other symptoms too. My preventative tablets when working will take the pain away but not the symptoms. So I’ll still have the aura, vertigo, tiredness etc. However, it’s the aftermath of a migraine whereby it can take a couple of days before the exhaustion of having a migraine has passed.
29. Migraine and Headache Awareness Month is important to me because: I think more people need to understand how migraines can pretty much render you useless.
30. One more thing I’d like to say about life with migraine is: It’s hard. It’s painful. Frustrating, disabling, and difficult for the whole household to deal with.

MHAMgiveawayReader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

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Migraine & Headache Bloggers’ 30 Things

Bloggers who have shared their 30 Things About Life With Migraine on their own blogs:

Fellow Migraine.com writers who have shared their 30 things:

Did I miss someone? Please leave a comment with the URL and I’ll add it to the list! (These are links to responses posted on other websites. If you’ve submitted your response on The Daily Headache, you can find it here.)

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30 Things About Melanie’s Life with Migraine

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine
2. My migraine attack frequency is: with preventives: 4 times a month; without preventives: constant
3. I was diagnosed in: ??? Good question. I think I diagnosed myself in my early 20’s.
4. My co-morbid conditions include: Anxiety, Depression, Reynaud’s Syndrome, Motion Sickness
5. I take __8__ different medications/supplements each day for prevention and up to _4_ medications/supplements to treat an acute attack
6. My first migraine attack was: around age 5.
7. My most disabling migraine symptoms are: nausea, vomiting, dizziness, inability to concentrate
8. My strangest migraine symptoms are: temporary deafness, word salad
9. My biggest migraine triggers are: hormone imbalance, heat, wine, beer, sweet desserts
10. I know a migraine attack is coming on when: I start to get sinus and ear congestion on one side
11. The most frustrating part about having a migraine attack is: having to lay still so I don’t feel worse and not being able to do much ’cause I can’t think straight
12. During a migraine attack, I worry most about: Am I going to vomit?
13. When I think about migraine between attacks, I think: Please don’t come back!
14. When I tell someone I have migraine, the response is usually: Pretty compassionate
15. When someone tells me they have migraine, I think: Oh you poor sod; I am so sorry!
16. When I see commercials about migraine treatments, I think: If only!
17. My best coping tools are: Laying still; taking my meds early enough
18. I find comfort in: Hot baths
19. I get angry when people say: Most headaches are due to dehydration; have you tried drinking more water?
20. I like it when people say: Why don’t you lay down? I’ll take care of it.
21. Something kind someone can do for me during a migraine attack is: Cook dinner
22. The best thing(s) a doctor has ever said to me about migraine is: I was just the cheerleader; you figured this out yourself!
23. The hardest thing to accept about having migraine is: There is no cure.
24. Migraine has taught me: Compassion for others and how to forgive myself
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I am not my body
26. If I could go back to the early days of my diagnosis, I would tell myself: You have to advocate for yourself; no one else will do it.
27. The people who support me most are: my daughter, my therapist
28. The thing I most wish people understood about migraine is: It’s a full-body neurological attack with a range of symptoms that can last several days and are completely debilitating
29. Migraine and Headache Awareness Month is important to me because: We need more awareness, better treatments and more doctors to train as migraine specialists!
30. One more thing I’d like to say about life with migraine is: Life would be better without it.

MHAMgiveawayReader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

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30 Questions

This is a reader-submitted story.

1. My diagnosis is: I have been diagnosed with migraine with aura, chronic migraine, and just recently cluster headaches.
2. My migraine attack frequency is: It use to be daily but is now about 2 times per week [depends] but without any treatment i use to get over 10+ migraines per month and at least 8 cluster headaches per month at the moment it seems cluster headaches are in remission
3. I was diagnosed in: My ‘formal’ diagnoses was in 1982 and the cluster headache in 2014
4. My comorbid conditions include: I have several comorbid conditions I have fibromyaliga, restless leg syndrome and depression I also suffer with chronic pain due to an accident in 2000 Light sensitivity that never seems to go away and I cant stand loud noises
5. I take a mixture of pain meds that help with the attacks I have 1 tablet I take each morning to stop the cluster headache [seems to work so far] I have an abortive system to take to try and stop the migraine from starting
6. My first migraine attack was: When I was 4 years old I can’t remember but i do remember them in early childhood i use to hold my head and scream i know now that would have only made them worse My mother was told i was only seeking attention Yet i do remember them so well even when so young all my mother could do was give me disprin as I got older they got worse and i missed so much school
7. My most disabling migraine symptoms are: Light sensitivity, and the Throbbing in my head I also cannot think and I lose sight in my right eye I try to keep going in the early stages but when the pain really sets in i go to my dark room and close out the world sometimes for days at a time
8. My strangest migraine symptoms are: Pins and needles in my face and my head feels so heavy i often need a neck brace as I feel i cannot hold it up I cant think nor speak simple instructions are impossible to understand
9. My biggest migraine triggers are: Lack of sleep, sweet sickly smells and loud constant noises
10. I know a migraine attack is coming on when: I get very moody and cry at the drop of a hat
11. The most frustrating part about having a migraine attack is: No body believes me and It’s hard to wait for the right time to take abortive medicine when I know what’s coming. Too soon and it won’t work at all Too late and it won’t work either. And is it a migraine or a cluster not knowing which makes it hard to now what meds to take
12. During a migraine attack, I worry most about: What needs to be done, being so useless to anyone including myself
13. When I think about migraine between attacks, I think: When is the next one going to start how much can i get done between attacks to try and get ahead [doesn’t work but i try]
14. When I tell someone I have migraine, the response is usually:“Yeah, I get those, too,” It’s makes me so angry because most of the time the person has no idea They say oh try this or that and it works for me but Ive been there tried that doesn’t work for me
15. When someone tells me they have migraine, I think: Really i asked a few simple questions and realize they don’t have a clue what a migraine really is But if they actually have migraine attacks i listen with interest to what they have to say
16. When I see commercials about migraine treatments, I think: You make it seem so simple to manage….. no wonder people think migraine is just another headache I switch channels its such dribble
17. My best coping tools are: Just giving up and going to bed with my heat packs ice packs and meds
18. I find comfort in: My bed My backup plan and my pre-pack bag of comfort items
19. I get angry when people say: its just another headache Your lazy you just enjoy staying in bed and scoffing off the government No I hate having to stay in bed I hate not being able to wake up refreshed each day Not wondering if ‘this’ is the day another will start I hate not being able to function like everyone seems to be able to do and I hate having to constantly having to cancel my plans
20. I like it when people say: It’s ok I’m there for you… [but they do live to far away to really be of help] but its a comfort to know someone really cares about you and doesn’t pity you and is willing to really listen and drive such a long way to be with you
21. Something kind someone can do for me during a migraine attack is: Leave me alone and let me recover but be there anyway {I realize that sounds confusing]
22. The best thing(s) a doctor has ever said to me about migraine is: They have not said anything to help me deal with this
23. The hardest thing to accept about having migraine is: How debilitating it is and the stigma that is attached to it There is no cure and Ill never know when another attack will start but i know it will sometime soon
24. Migraine has taught me: i am stronger than i think I must slow down I must take things easy and don’t fill my plate to full with to many things that need doing how I must pace myself
25. The quotation, motto, mantra, or scripture that gets me through an attack is: This to will pass
26. If I could go back to the early days of my diagnosis, I would tell myself: Don’t just accept one doc’s diagnosis keep trying till you get the correct diagnosis and treatment which is hard in a rural town and the city is a long way away
27. The people who support me most are: Myself only……. I lost all my friends when migraine became chronic My friends now live in my computer
28. The thing I most wish people understood about migraine is: it is a real disease It has no cure Its lifelong I’m not someone who is on the pension cause I want to be i want to be normal without pain day in day out without the side effects and yes it can take me a couple of days to get over an attack then usually another starts its a cycle i cant get off
29. Migraine and Headache Awareness Month is important to me because: Finally people can see its real As some one else said For most of my life I’ve felt the stigma of migraine. I felt alone and misunderstood, as though somehow I brought this misery on myself. I don’t want one more person to ever feel that way again. I cant say it any better than that
30. One more thing I’d like to say about life with migraine is: Find the right treatment After 50 years of having migraine and not finding any treatment for almost 40 of those years I say get the right treatment find the right doctor who really believes in you and wants to help you Its hard in a rural town I dread having to travel for treatment but if it needs to be so be it

MHAMgiveawayReader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

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My Many Years of Migraines

This is a reader-submitted story.

1. My diagnosis is:chronic migraine
2. My migraine attack frequency is: 2-3 times monthly
3. I was diagnosed in: 1974
4. My comorbid conditions include: spinal stenosis, autoimmune disorders
5. I take_zonimide_ medications/supplements each day for prevention and frova, phenergan medications/supplements to treat an acute attack
6. My first migraine attack was: 1970
7. My most disabling migraine symptoms are: blindness, vomiting, excruciating pain
8. My strangest migraine symptoms are: face numbness
9. My biggest migraine triggers are: alcohol, chocolate, strong smells
10. I know a migraine attack is coming on when: I have an aura or ocular migraine
11. The most frustrating part about having a migraine attack is: the severe pain and nausea
12. During a migraine attack, I worry most about: Dying! Each and every time I worry about having a stroke. My Mother had migraines and died from a stroke.
13. When I think about migraine between attacks, I think: How bad is the next one going to be? Do I have enough meds for next time?
14. When I tell someone I have migraine, the response is usually: “oh, I do too” or my brother etc does. Sadly,I don’t always believe them because of their non-chalant attitude about it. I’m not saying you should wallow in self pity or seek sympathy, but if you truly have migraines it’s a serious medical issue.
15. When someone tells me they have migraine, I think: God Bless You
16. When I see commercials about migraine treatments, I think: I always listen in case there is a new treatment available. But if it’s for an over the counter product advertising as a migraine treatment I get annoyed.
17. My best coping tools are: air conditioning, my bed and sunglasses
18. I find comfort in: knowing that my family is understanding and supportive of me when I have a migraine
19. I get angry when people say: you need a take a couple of Excedrin and it will go away
20. I like it when people say: I understand and what can I do to help you get through this migraine
21. Something kind someone can do for me during a migraine attack is: Leave me alone unless I ask for help and not make any demands on me until I can function again
22. The best thing(s) a doctor has ever said to me about migraine is: You aren’t a hypochondriac or crazy, your pain is real and I want to help you find something that works!
23. The hardest thing to accept about having migraine is: Sometimes I can’t do what I want to do when I want to do it
24. Migraine has taught me: To tolerate pain and not sweat the small stuff, enjoy my pain free days to the fullest and not give in to the migraine unless I absolutely can not function.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: and this too shall pass!
26. If I could go back to the early days of my diagnosis, I would tell myself: go to the neurologist I now see!
27. The people who support me most are: my husband and co workers
28. The thing I most wish people understood about migraine is:it is a debilitating, horrible pain. It effects every part of my body. When I have a bad one my hair, inside my ears and teeth hurt. Talking is an effort and it hurts. Your perfume can trigger a migraine that might last 3 days, so be considerate. Don’t say things like “you STILL have a headache?” Trust me, if I could get rid of it I would. Most of all offer your support, but not your home remedies…I’ve tried them all, thanks anyway.
29. Migraine and Headache Awareness Month is important to me because: it educates more people about migraine
30. One more thing I’d like to say about life with migraine is: keep fighting and looking for answers. Everyone is different, what works for me might not work for someone else. Never give in to the idea that the headaches are never going to get better. After many, many years of almost daily migraines, I finally have mine under control enough that I’m able to make plans without fear of having one.

MHAMgiveawayReader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.