I was wondering if anyone has had migraines post GBS?
March 31, 2008 at 9:25 pm
My 11 y/o with cidp has headaches several times a week. He is learning to deal with them, however some neccesitate that he takes the day off of school. The headaches he gets during monthly ivig infusions are a whole other animal. Thankfully you do not have these with gbs as they are only infusion related.
I enquired about imitrex, but the peds neuro is not excited about giving it to a young child. i do know several adults (with out gbs) who do take imitrex and have great relief. Good luck to you and feel better.
Dawn Kevies mom
AnonymousApril 5, 2008 at 10:01 am
[FONT=Comic Sans MS][SIZE=3]My late wife Debra use to get horrible migraines, they were so bad I had to cover the windows to block out the light. Her Dr tried her on various migraine meds, she was finally prescribed Topamax. It is used as a migraine prevention med, a little while after going on it she very seldom ever got one. You might consider consulting your Dr on this.[/SIZE][/FONT]
AnonymousApril 5, 2008 at 12:20 pm
I had horrible headache problems during the acute phase of my GBS and have continued to have them ever since. Sometimes they reach migraine status (complete with nausea, vomiting, light/noise sensitivity, and visual aura), and other times they are just really bad headaches.
I have Axert to take when I see a visual aura, as that means a migraine is about to pop up soon. Otherwise, I take Tylenol or Percoset, depending on how bad the headache is.
Since I started taking Toprol, a beta-blocker, for an unrelated problem, though, I have not had an single migraine. Just the non-migraine headaches. I asked my cardiologist about it, and he said that some doctors prescribe beta-blockers just to prevent/reduce migraines, so it’s no accident that it’s helped me in that regard.
I know that tricyclic antidepressants and some anti-epileptic medications are supposed to reduce migraine frequency in some people, much like my beta-blocker does. I have tried both without the level of success that the Toprol has given me.
I agree that you should ask your neurologist about trying some of these preventative meds. It takes a little trial and error until you find one that works for your migraines, but once you hit upon the right one, it can make a big difference in your quality of life.
My migraines were really debilitating at one point because they were so frequent and so intense. I would have tried anything! Now that I’m on a successful medication, I can handle what I have left.
AnonymousApril 5, 2008 at 4:02 pm
I, too, have migraines and have tried the beta-blockers with some success. Now that I am on Gabapentin (which is also used to treat migraines) I haven’t been having them. The other day I got caught up in something and missed two of my day time doses of the Gabapentin and the next a.m. I had a migraine from heck. I was down for the whole day! Imitrex can be good for some people but it causes arythmias for me so I need to avoid it as well as anything with cafergot in it. I often just resort to OTC drugs such as Tylenol with Codeine or Excedrin for Migraines. The Excedrin works the best for me.
AnonymousApril 7, 2008 at 3:48 pm
I can’t hardly say the word… for fear I will get one. I have apparently had “silent migraines” for many years before GBS with only the aura. But now I get the aura and the clamp on my head pain feeling. My neuro thought it might be hormone related, but that hasn’t changed anything. Light appears to be a trigger for me in some way and the only thing I can do is get in a dark and quiet room for about 12 hours.
I have been under some unusual stress lately and have experienced the visual arua so bad it would re-start every 30 minutes. Haven’t been to a doc in a while to tell them that. I take Imitrex but I don’t think it does any good.
Good luck on your investigation and what works for you!
AnonymousApril 7, 2008 at 10:41 pm
Have you heard of “visual migraines”? They are aura type only and never result in an actual migraine. They can hit you several times a day and last 20-30 minutes. The aura may seem like everything in your line of vision is shattering or spinning in a spiral. If you type in “Visual Migraines” you should get some info on these. I get them and there is really nothing you can do for them except wait it out. I get mine when I am really stressed and my shoulders and neck muscles are tight.
Bright lights set both types of migraines off. I especially have trouble in winter on those bright sunny days when the light bounces off the snow. Flourescent lights that flutter, camera flashes, etc. can all put me on the road to a migraine. Certain foods also can increase them. (Red wine, any colored alcohol, aged cheese, fresh bread, cured meats.)
Hope you find something there that can help you understand what’s going on.
Best of luck….
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