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Help! Terrible Migraines! Topomax Contains Gluten!

IndigoRose

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IndigoRose Newbie
IndigoRose
Posted

I am being tested for Celiac's disease. My doctor is pretty sure this is what has been making me ill for the past few years. I have been suffering from very severe migraine headaches, I have been taking Topomax 300mg for the past 6 years. I just read that it contained gluten!

I have been having daily headaches, at least once or twice a week they wake me up from sleep, sometimes they come on so fast if I am driving I have to pull over and call for someone to come get me. I have been hospitalized several times.

I have tried numerous other meds and have had terrible side effects from them. I see a neurologist but he has not been much help, what do you suggest?

I would appreciate any help you could offer. I can't imagine not taking Topomax, but I feel so aweful I don't want to put anything with gluten in my body!

HELP! I am ready to give up!

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tarnalberry Community Regular
tarnalberry
Posted

Per the Open Original Shared Link list, last updated 12/07 (and per my call to the company over a year ago), Topomax is gluten free. Where did you find out otherwise - in something that was other than a CYA statement? (I'm also on it as a migraine prophylaxis.)

darlindeb25 Collaborator
darlindeb25
Posted

I take Topamax and to the best of my knowledge, it is gluten free. There is no generic for Topamax, so my info must be correct, simply meaning there is only one manufacture of it so far. Where did you get info that say different? I have not had any side effects to it, other than not feeling hungry. It has helped my headaches. I take 125mg daily.

I never do NOT have a headache, it's always there, somedays it's not as bad, somedays even the people at work know it's a day to talk softly around me. I never let it stop me from my life, I never use a headache as an excuse for anything, and yes, they are very debilitating. The Topamax has helped, my headaches have calmed. They have not gone away, I have not had a day yet, after 6 months on Topamax without a headache yet, but I am looking forward to that day. We are slowly increasing the dose, because it does seem to be working. I truly do believe you received false information about it containing gluten. I react very strongly to gluten, I was just glutened a few weeks ago by another med--I am positive there is no gluten in Topamax.

Can you provide us with the source that told you it contains gluten so we can research further? Maybe it's time your doctor tries something different for your migraines, 600 mgs seems like a very high dose, especially if you are still suffering migraines!

ravenwoodglass Mentor
ravenwoodglass
Posted

Have you tried the diet yet? I suffered horrible migraines for years, even when I didn't have the headache I had the auras, I have not had one since I went gluten free..... except when I am glutened. This was one of the first issues to resolve for me, I hope the same follows for you.

sixtytwo Apprentice
sixtytwo
Posted

Just be careful of Topomax, it can have some bad side effects, I have been warned by a doctor friend. I still am on a 50 mg. dose daily which is keeping headaches away most all the time and if I do get one, an Imitrex makes it go away totally, thank Heaven. Topomax was originally designed as medicine for epilepsy and apparently the same thing that helps the people with that, also helps us migraine sufferers. It says right in the description now, that it is also prescribed for migraines. One of the bad side effects is forgetfulness, so if you are on a large dose of Topomax, you should beware of that. Good luck to you...........Barbara

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    • AlwaysLearning
      Gluten related ??

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      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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    • AlwaysLearning
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