Migraines | MyEpilepsyTeam

Connect with others who understand.

sign up Log in
Resources
About MyEpilepsyTeam
Powered By
Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
Migraines
A MyEpilepsyTeam Member asked a question 💭

I have been waking up with horrible migraines like 5 out of the 7 days a week. I take Lamictal and Topamax. I know Topamax is supposed to help with headaches so that's weird. My Dr. had me do a study to make sure I wasn't have seizures in my sleep and I'm not. Does anyone else have this issue?

posted April 18, 2016 (edited)
•
View reactions
A MyEpilepsyTeam Member

OH, WOW! I'm just gonna give it to ya as straight as I can! PLEASE, find something else for your migraines! PLEASE! I KNOW the topamax is helping. It helped mine. But, it is also MY THEORY, that it led to an increase in my seizure activity. As I sit here today January 3, 2023 I have been on Topamax/ Topiramate now for some 18 years. when I started out Topamax was a brand new drug! I went from having several migraines a month to 0! I also lost several pounds! YES! I was quite fluffy at the time. 🙂 I wasn't having seizures as of yet though. That was July 01,2007. I just passed out. I couldn't remember my husband afterwards. 🙃 anyways, seizure activity has progressed to TC/GM all the while Topamax has been my main drug. I've tried lots of them but I tolerated Topamax well. To make a very long story shortened... I now have nerve damage in my hands, and I was just told by my eye doctor that I need to see an opthamologist. The pressure behind my eyes is a high. TOPAMAX is known to cause glaucoma in some of its patients.
You know how when you hear a commercial about a drug and then the announcer does that really fast pitch about the known side effects? Yeah, that's what I'm experiencing. It could be because I've been on the drug for almost 20 years. I don't know. What I do know is that what I'm experiencing is real. My hands hurt, they burn. No, it's not carpal tunnel syndrome. I just had the test done at the beginning of last month. I want to make sure we all know about the long term effects of the medications we're ingesting. It's an oxymoron I know, because they do help us. But, I now say at what cost. The use of my hands... if my eye doctor wasn't as thorough as she was, my vision.
I've studied Topamax/topiramate lately like I'm preparing for an exam! I can't just stop taking the stuff. It could kill me if I did. I see my Neurologist next week. We will take me off of Topamax! In all honesty, it's scary for me. Topamax along with Xcopri and Vimpat is doing SO WELL for me fight now! I don't want to have another seizure! I don't want another migraine! But, I'm tired of the pain in my hands and I will not lose my sight! Not when it's something that I have control over. The drugs I ingest.
So, sorry/not sorry about the rant. I only want you to be extremely careful. Please! Anyone who reads this, who glances at it. We have to pay attention to what WE are putting into OUR BODIES.

posted January 3, 2023
A MyEpilepsyTeam Member

I also have sleep apnea .

posted March 1
A MyEpilepsyTeam Member

I ever time I take a nap & go to sleep at night.

posted March 1
A MyEpilepsyTeam Member

I think the last time I had a migraine was what five years ago maybe longer.

posted February 28
A MyEpilepsyTeam Member

My longest migraine lasted two weeks one time. I couldn't get rid of it & it hurt like hell. But I haven't had one in a very very very very long time right now.

posted February 28

Related content

View All
Is It Normal To Have A Presistent Headache Even If I Took Painkillers?
A MyEpilepsyTeam Member asked a question 💭
Sleep Only Seizures.
A MyEpilepsyTeam Member asked a question 💭
Chronic Migraines
A MyEpilepsyTeam Member asked a question 💭
Continue with Facebook
Continue with Google
Your privacy is our priority. By continuing, you accept our Terms of use and Privacy policy.
Already a Member? Log in