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Welcome to the Hemiplegic Migraine Forum

hmmm. i have to add a reply to read so, i will say hello, my name is kerry. diagnosed with HM six months ago. prior to that was diagnosed with simply complex migraine w/aura or basilar migraine. i’m currently taking verapamil which helps a great deal, 400mg B2, and 600-800mg of magnesium citrate solution. my attacks are much quieter now but still come about 9 days out of 10. i’m always seeking new information.

wow. its not that i didn’t see any posts. it’s that they’re aren’t any. ya, i know, my illness is the rarest of rare. always fun. i guess its time to go elsewhere for assistance.

Hi Kerry, Thanks for sharing your story. It looks like you were the first one to post in this particular forum, but you may hear from others (including our moderators)…..sometimes it takes an initial post to get the discussion going!

Kerry – I also found a few posts in the “Migraine Stories” forum which mention hemiplegic migraine. You can comment on the posts, or message the authors directly through Migraine.com messaging (click on their name to view their profile & send a message). Here are the stories:

http://migraine.com/migraine-stories/rarer-migraine-types/

http://migraine.com/migraine-stories/when-you-have-migraine-perseverance-will-pay-off/

http://migraine.com/migraine-stories/from-a-car-accident-to-daily-migraines-my-life-changed/

Hi Kerry,

The forum is still very new, but we’re sure glad you’re here!

Do you mind me asking… how long did you have to stumble along until you finally got the diagnosis of Hemiplegic Migraine?

Kerry,

There’s more evidence for verapamil than other medications for prevention of hemiplegic Migraine, but there are many other preventives that could be added to your regimen to try to reduce the frequency of your Migraines. There are, in fact, over 100 medications and supplements in use. For more information on prevention and a link to a listing of possible preventive medications, please see http://migraine.com/blog/migraine-management-essential-4-preventive-treatment/.

I HATE Topamax, with a fierce passion. I went to one neurologist and he put me on it on a high dose since my migraines were so severe (can’t walk or talk during a migraine attack). On this medicine I couldn’t think, soda tasted horrible and I just felt like a really stupid zombie. My legs and feet were always tingling, but in a painful way. But the worst was how it affected my thinking. So many times I’d be mid sentence and I just couldn’t say the next word. I knew it, but the journey from my brain to my mouth just wasn’t working. Finally I got him to put me on a low dose, but it was still hell. It helped with my migraines, but I’d rather deal with my migraines than that. Finally one day at work I had to go home because I was hallucinating. Went to a different neurologist and he put me on Depakote. He said they call Topamax “Dopeamax” because of what it does to people. I was on Depakote for a while. No horrible side effects. Only one I had was heartburn, that’s it. Worked really well too. Then I started getting better, thought my migraines were just going away, so I stopped taking it. (Having no insurance for half a year can make taking it pricey.) That was on Easter I stopped taking it. Now, my brain is extra sensitive to EVERYTHING. I had totally forgotten how horrible my head was before doctors started shooting me up with meds. So hopefully soon once my insurance kicks in, I can go get back on Depakote again.
But everyone reacts differently to medicines, so whatever works for you. I just would never touch Topamax again, even if you paid me.

sorry i haven’t been around lately. sometimes one just gets migraine education overload. In response to Ellen: My migraines didn’t turn truly hemiplegic until 11-09-2010. I was diagnosed w/basilar migraines from 6-1999 until last november. I wasn’t diagnosed with HM until mid-december 2010 after six weeks of every day attacks and becoming nearly suicidal. I have a long history of being treated by physicians as if I were “faking it” or had some sort of psychological disorder. There was a time when I became convinced that maybe something WAS wrong with my psychologically and went on the meds for such (Paxil and Zoloft). Needless to say, these drugs did nothing but add side effects and do nothing to remedy my problem. But, when I started seeing the visual aura I began being taken more seriously. And, as if by a miracle, migraine drugs resolved ALL of my problems. Misdiagnosis is a terrible and dangerous thing. Just as frightening as giving someone with clinical depression Imetrex.

I still have daily attacks of HM but they are quieter and quieter. I generally get slammed around the time of ovulation and, of course, as my cycle begins. Verapamil has helped a great deal. I also take B2 and Magnesium every day which also help a great deal.

I have become more “well” by educating myself than I have by visiting a physician. Physicians, in my humble opinion, are not good for much outside of prescribing drugs and making sure you haven’t had a stroke. Other than that, you’re on your own. I would recommend that anyone suffering from this intensity of migraine read Oliver Sach’s book “Migraines”. He is very well respected in the medical community and his book is a godsend.

Lastly, I went to see a doctor in Memphis, TN, at The Southern College of Optometry. They did what’s called a colorimeter test. I have a multitude of visual problems that cause me to be disoriented, create pattern glare, distorted patterns, shaking and vibrating of certain patterns and other equally disabling things. I was prescribed a precision tinted pair of lenses (I haven’t received them yet). I have high hopes that these will not only assist with my visual problems but will help to eliminate visual triggers. I’ll let you know how that goes but I would recommend that anyone good migraines & rose colored lenses. There is much published scientific study.

Also, the reason why migrainours of all types feel “ultra sensitive” to everything is because you ARE. Migraines cause neuronal hyperexcitability, that is, your nerves fire uncontrollably even OUTSIDE of a migraine. For me, this has been clinically verified by both auditory and visual evoked potentials tests (you can google that too.) So, no, you’re not crazy.

Best of luck to everyone here. Loves and Hugs to you all. I will try to check back in after I get my glasses and let people know how that worked out.

Best,
Kerry

sorry i haven’t been around lately. sometimes one just gets migraine education overload. In response to Ellen: My migraines didn’t turn truly hemiplegic until 11-09-2010. I was diagnosed w/basilar migraines from 6-1999 until last november. I wasn’t diagnosed with HM until mid-december 2010 after six weeks of every day attacks and becoming nearly suicidal. I have a long history of being treated by physicians as if I were “faking it” or had some sort of psychological disorder. There was a time when I became convinced that maybe something WAS wrong with my psychologically and went on the meds for such (Paxil and Zoloft). Needless to say, these drugs did nothing but add side effects and do nothing to remedy my problem. But, when I started seeing the visual aura I began being taken more seriously. And, as if by a miracle, migraine drugs resolved ALL of my problems. Misdiagnosis is a terrible and dangerous thing. Just as frightening as giving someone with clinical depression Imetrex.

I still have daily attacks of HM but they are quieter and quieter. I generally get slammed around the time of ovulation and, of course, as my cycle begins. Verapamil has helped a great deal. I also take B2 and Magnesium every day which also help a great deal.

I have become more “well” by educating myself than I have by visiting a physician. Physicians, in my humble opinion, are not good for much outside of prescribing drugs and making sure you haven’t had a stroke. Other than that, you’re on your own. I would recommend that anyone suffering from this intensity of migraine read Oliver Sach’s book “Migraines”. He is very well respected in the medical community and his book is a godsend.

Lastly, I went to see a doctor in Memphis, TN, at The Southern College of Optometry. They did what’s called a colorimeter test. I have a multitude of visual problems that cause me to be disoriented, create pattern glare, distorted patterns, shaking and vibrating of certain patterns and other equally disabling things. I was prescribed a precision tinted pair of lenses (I haven’t received them yet). I have high hopes that these will not only assist with my visual problems but will help to eliminate visual triggers. I’ll let you know how that goes but I would recommend that anyone good migraines & rose colored lenses. There is much published scientific study.

Also, the reason why migrainours of all types feel “ultra sensitive” to everything is because you ARE. Migraines cause neuronal hyperexcitability, that is, your nerves fire uncontrollably even OUTSIDE of a migraine. For me, this has been clinically verified by both auditory and visual evoked potentials tests (you can google that too.) So, no, you’re not crazy.

Best of luck to everyone here. Loves and Hugs to you all. I will try to check back in after I get my glasses and let people know how that worked out.

Best,
Kerry

We at Hemiplegic Migraine Foundation (HMF) are exploring if a nonprofit and website dedicated to serving the needs of those affected by Hemiplegic Migraine (HM) worldwide is needed. We are conducting a survey on ”How and where you get answers to HM questions.”

If you, your loved one(s), friend(s), or coworkers have HM, please go to this link http://hemiplegicmigraine.org/index.php/my-hm/surveys to complete the survey. You can also find the link under ”My HM & Community” > Surveys.

It applies to everyone who is affected by HM, i.e. the patient, caregiver, parent, friend, family member, coworker, etc.

Wishing you a HM and pain-free day,
Tonya

Hi-I am new to this forum and new at blogging-so I ask,please be patient with me.
For 2 yrs now I have had severe headaches and when they first started I thought I was having a stroke.
Went to ER where I was diagnosed with complicated migraines. Now I am 2 yrs into feeling like I am worthless and more confused by the professionals treating me.
Yesterday the neurologist told be I have Hemiplegic Migrains–what ever that is!
All I know is I am ashamed and feel stupid and that on most days I am confused, have speech difficulties and my entire left side feels weak. I even asked my Neurologist if I had mental illness.

Auntym,

You have nothing to feel stupid or ashamed of. Migraine is a genetic neurological disease. You have absolutely no reason to feel ashamed or stupid. I hope your neurologist explained that to you.

Did your neurologist tell you anything about hemiplegic Migraines? You can read about them in this article- http://migraine.com/migraine-types/hemiplegic-migraine/

Auntym,

You are not alone in your struggle. I hope realizing that there are a great many patients who get these symptoms is helpful to your self esteem. These are things over which we have no control. We can eliminate triggers, take preventive meds and change our lives, and still attacks may come. We are embarrassed and feel like less of a person, but that simply isn’t the case. Sometimes it just takes another Migraineur to understand and put a virtual arm around your shoulders…

I’m back, that migraine lasted for 10 days and I am now having problems with may job as my boss believes I am “pretending” migraines so I dont have to work, or if these are real I should be on disability! I think since I am that good at pretending I may pretend to win the lottery!! When did I stop being a productive person? Now can anyone explain to me please what I look for in a physician to help me learn to cope with these and not just tell me they don’t care what I think? This due to me stating I refuse to go to the ER each time I have a migraine — my experience with the ER has been so bad, yes I recieve pain relievers but no information and no clear communication –so I feel more confused –even had one ER doctor state he thought I may be having some form of weird allergic reaction–to what? I have other medical conditions which I understand prevents me from using alot of the “normal”Migraine medications. I have tried nortriptyline and depakote niether worked for me. I am now taking a calcium channel blocker just stated 1 week ago. I have read about keeping a journal –my doctor has not mentioned this. I am willing to learn and try anything within reason to make these things go away. I really don’t have anyone to talk to about this and what information I have found is not that good. Thanks Auntym