Migraine

I hope that some people can get off preventives after 2 or 3 months. That hasn't been my experience. I've tried several times in the 18 years I've been on preventives and haven't been able to get beyond 6 or 8 weeks.

I'm past menopause, but I didn't have menstrual migraines.

Best of luck!

Gretchen

My neuro told me that sometimes Topamaz can re-train the brain to not have migraines as much when I first started it too. He said we might try going off of it for while abour six months after we started it. I think he decided against it though when we discovered that while it does reduce the frequency of attacks (mine are severe for frequency more then actual pain intensity) greatly, it doesn't knock them down to no more than one or two a month which was the original goal for the med. However, we decided to stay with it since it was working (without maintainence I have maybe 1 day out of 3 with no pain) to take out frequency and made them managable with OTC meds some of the time.

So, I can't say if it actually can re-train the brain. But if it is possible for the side-effects to become permanent, I suppose the benefits could be that way also.

Lauren Welcome to MyMigraineConnection. Sometimes it can take up to 3 months for your body to adjust to certain medications. So yes, the side effects may possibly go away. Be assured that topamax is not the last stop on the Migraine prevention list. There are over 100 meds out there that can be used, so if this one doesn't work try another one! This article lists all the different meds. Feel free to take this with you to your doctor:http://www.helpforheadaches.com/articles/prev-meds.htm



Do you take topamax due to your Menstrual Migraine? I haven't heard about the resetting of the brain part of topamax but I will check on that. Have you tried Frova, a triptan that aborts the Migraine attack, a few days before your period? There are some studies proving this is very helpful for some women. Here is some info on it: http://www.helpforheadaches.com/articles/FrovaMMStudy.htm

Let us know what you think of this info and we look forward to hearing more from you.

quote:

Originally posted by lauren:
Hello,

Wow! What a relief to find this forum today. I just started taking topamax about 10 days ago--I've been avoiding it for a month as i'm in school and the "doped-to-the-max" possibility has terrified me. The poor med student, i can't even imagine!!!

Anyway, I started at 25mg and I feel like I'm lost in a fog of confusion. I take it at night because I fall asleep right after taking it, and the fog doesn't usually clear until late afternoon next day. I'm supposed to increase my dosage by 25 mg/week which seems outrageous at this point considering.

i have 2 questions: do some people experience that the side effects go away after awhile (it doesn't seem so from the postings) like anti-depressants or should i just assume this is how it will be for the duration?

Also, I have menstrual migraines that don't seem nearly as debilitating (about 4-5 days each month, i'm miserable but can almost function) as the others here. My neurol. advised that i can probabably take topamax for 2-3 months and that it will "reboot" my system knocking out the migraines for some time. Has anyone ever heard of this? It seemed particular to menstrual migraines. Thank you!!!

Lauren

I drove to Chicago for my first appointment Dec 19th and they kept me inpatient until the 23rd and I flew back, as my husband had to drive back to go to work. Then my second appointment in March I flew and I go again in June and plan to fly. It is cheaper to fly all in one day rather than drive up and spend the night.

I have been having migraines since I was 10 years old, but didn't begin having them on a weekly basis until high school. I have tried many preventatives, though I know there is a long list. Relpax is the only triptan that seems to give me any relief when I take it early enough. A low dose combo of Topamax and Depakote seemed to help, but I gained weight FAST! Topamax didn't have the great weight loss effect on me as it seems to on a lot of people, but Depakote did pack on the pounds. I will find the right combo eventually I am sure.

Thank you for the warm welcome!

quote:

Originally posted by NancyHOST:
Welcome to MyMigraineConnection. What an awful thing to have gone through. Migraine disease at its best is a manageable condition, at its worst debilitating. Thank you for sharing your experience with us.

It may be of some consolation to know that some of our members travel over eight hours to get to their headache specialists. Do you already have an appointment with the Diamond Clinic? Would you let us know how you make out there. Something to keep in mind is that there are over 100 different medications to prevent Migraine attacks. For more info click here:http://www.helpforheadaches.com/articles/prev-meds.htm

We look forward to hearing more from you.

Hi, I just stumbled across this site - it's great! I just stopped taking Topamax last week. I had gotten up to the 100mg dosage - no side effects, except weight loss. I though it was the "wonder drug" I had been waiting for! Then about 4 days into my 100mg dosage, I started getting severe cramping in my calf. I called my doctor since I know a side effect can be muscle cramps and also DVT - which I already had some vein issues in that leg. I was very scared thinking I had a blood clot or someting. I stopped taking the Topamax and the pain is going away. Now I am scared to even start to take it in a lower dosage. I called my doctor today to get on something else. I was not even off the Topamax for a week and I have had 2 migranes already! Back to the drawing board for me....I will try anything at this point to just get my life back where I don't get a headache every single day.
I was just curious though has anyone else had the muscle cramping from Topamax? I feel this was the only side effect I could not handle. Thanks for reading!

Hi Eileen welcome to MyMigraineConnection. We are so glad you "stumbled across this site!"

Topamax works wonders for some people, others cannot tolerate the side effects. Leg cramps can be a side effect. It only matters if YOU can't handle this side effect. With your other vein issues I would think it may be a good idea to find another preventive med.

Please don't stop taking it abruptly, you need to taper off topamax with your doctors help. Call him before you start the taper to get the correct directions from him.

Don't lose hope, there are over 100 medications used to prevent Migraine disease. Here is an article all about them:http://www.helpforheadaches.com/articles/prev-meds.htm

Please let us know how you are doing and we hope to hear more from you.

I have been on Topomax now for about 5-6 months. I started on the normal regimen, I am now on 200 mg a day. I started getting migraines when I was 12 years old and they have progressively gotten worse. I am lucky now if I can cut them back to 1-2 a month and the only medication that will kill them now is abortive meds. My side effects seem like everyone else's described, tingling in my feet, hands, face, etc. The only thing that I have experienced that no one has seemed to mention it that my eyelids twitch at least 1-2 hours a day, is this normal? It is quite annoying and bothersome. I know that so many people say that the side effects are supposed to go away but mine have not and I was wondering will these be things that will continue to be on going?
After reading the entry about the poor girl who had to drop out of school due to the problem with her concentration with Topamax I noticed that when I started the Topomax my concentration did seem off, I couldn't focus on more than one thing at a time, my memory and ability to calculate things was not functioning as well as it used to. I went in for a job interview and was required to take a series of tests that should have been cake it took me 3 times to pass them and seemed so unusual that I had such a difficult time with this. After stumbling onto this website I came to the conclusion that perhaps my medication had something to do with it. The last time I went in to take the test for my interview I read each and every question outloud to myself and everything seemed so much clearer and easier to understand. I felt as though my brain had jumbled everything up and was unable to process things clearly it was confusing and frustrating.

The other side effect that hasn't been mentioned is the propensity of Topamax to cause kidney stones. Drink water, water, water!!!

If you're having visual side effects, the dosing instructions say to call your doctor immediately. This drug can cause some permanent visual damage, so it's better to be safe than sorry with a check up.

Here's my take on the side effects, after 6 years on it. I'm the queen of no side effects with meds for the most part, and that includes the topamax. If I were to have to deal with the side effects that some of you have described, the severe cognitive issues, the nausea, the balance issues, the emotional issues and the lack of effectiveness, I'd be questioning my doctor. Now that's just me.

I do know that my doc has pulled people off the topamax for cognitive issues even though it was preventing migraines. It's one of those danged if you do and danged if you don't situations.

Personal choice...one to be made with your doctor.

My doctor has definitely said drink lots of water due to think kidney stones. My only problem, was revert back to having migraines every other day, or to having cluster headaches to the point of being medicated for a week straight to kill them or the side effects of the Topamax. I have discussed the side effects with my doc about the twitching of my eyelids and he has not felt that it is a problem. I have thought recently though that my work environment has been the cause of inducing most of my recent migraines over the past 8 months. They have been greatly reduced since I have started the Topamax.
So now it is basically choosing the lesser of 2 evils....the side effects of Topamax or the migraines.

Hi ChelsChoice

There are other choices besides Topamax if you feel it is not the best med for you. In fact there are over 100 different med to prevent Migraine. Some docs get stuck in the tompamax circle forgetting that other meds do work. HERE

This info may help you at your office. It is about office lightingHere

Well, I don't know if I'm experiencing Topamax side effects or an accurate diagnosis of fibromyalgia.

I have joint/muscle pains that existed before I started taking Topamax (50mg twice/day) for headaches, and a rheumatologist recently diagnosed my pains as fibromyalgia. It seems correct, but the pains have gotten so much worse over the last two months, since starting Topamax, that I'm just not sure if it's coincidental or if Topamax could be causing it.

Very frustrating. Especially since the Topamax is incredibly effective against my headaches!

Hmmmmmmmmm. Please don't think you're limited to those two choices. That's simply not the case. Not at all. I was desperate for help a few years ago. Major, keep-me-in-bed-all-day an average of five days a week. Tried Topamax for 9 months. Simply couldn't stand the cognitive side effects.

Finally, I fired my doctor and got to an actual Migraine specialist. Now, I sometimes get up to 3 months Migraine-free, and NOT because of Topamax or any other med that gave me side effects. There are over 100 medications that can be used for Migraine prevention. Since Topamax does reduce your Migraines and clusters, it makes sense that maybe another drug in that class could be a good choice for you. I've been taking Zonegran with no side effects.

PLEASE realize that you DO have options.

quote:

Originally posted by ChelsChoice:
My doctor has definitely said drink lots of water due to think kidney stones. My only problem, was revert back to having migraines every other day, or to having cluster headaches to the point of being medicated for a week straight to kill them or the side effects of the Topamax. I have discussed the side effects with my doc about the twitching of my eyelids and he has not felt that it is a problem. I have thought recently though that my work environment has been the cause of inducing most of my recent migraines over the past 8 months. They have been greatly reduced since I have started the Topamax.
So now it is basically choosing the lesser of 2 evils....the side effects of Topamax or the migraines.

I really do not know how to find a migraine specialist, but I would like to talk with one. All we have in my small town is neurologists, and so little are available, or the stress of starting over again with a new doc is somewhat nerve racking. And I can not afford to go somewhere else constantly to figure this out. I will talk with my doc about other options. Thank you very much!

Chel,

I do understand both the issue of starting over and affording to go elsewhere. Even at my worst, my Migraine specialist only asked me to have an appointment with him every three months. When they start you on a preventive, you need to take it for three months to know if it's going to work for you. The one time I had a bad reaction to one, all I had to do was call the clinic, and they called in a prescription for something different. You can find a directory of specialists HERE.

quote:

Originally posted by ChelsChoice:
I really do not know how to find a migraine specialist, but I would like to talk with one. All we have in my small town is neurologists, and so little are available, or the stress of starting over again with a new doc is somewhat nerve racking. And I can not afford to go somewhere else constantly to figure this out. I will talk with my doc about other options. Thank you very much!

Hello! I am new here, did a search and stumbled onto your community. I am into my second month of taking Topomax and have not noticed any 'bad' side effects. I've had some tingling, but that has decreased some. I've noticed some of you have taken potassium supplements, may have to look into that! The cognitive side effects, I've noticed, but I had that before so I can't decide if I'm noticing it because I know it is a possible side effect or what is happening there. I do notice some dry mouth, even though I do try to drink plenty of water. So far I seem to be tolerating it well. Oh, I'm on 100mg a day, 50mg in the AM, 50mg in the PM. That is all she has prescribed for me at this point. No migraines since I've been on it, then again, been have always been the type to come and go...I can go months with no headaches then go months with a headaches almost every day.