Anyone on, or have experience with, Topomax?

[Kit]

Me neurologist put me on this today.  I used to be on Elavil but hated it and didn't think it was all that effective anyway.  

[TrickyBob]

I took it for awhile. Soda tasted like crap (positive), I lost weight (positive), I forgot words, I was foggy headed, my balance went to shit, my memory sucked, and then I got kidney stones - twice, despite drinking mass amounts of water.

I'd never do it again, ever.

[alzi]

I took it for migraines and had no side effects. I loved it.

[Kit]

al dente, no specific questions, was just curious about people's experiences.

[Kit]

Oct 28, 2013 12:28:43 GMT -5 TrickyBob said:

I took it for awhile. Soda tasted like crap (positive), I lost weight (positive), I forgot words, I was foggy headed, my balance went to shit, my memory sucked, and then I got kidney stones - twice, despite drinking mass amounts of water.

I'd never do it again, ever.

Oh no!!!  This worries me.  But I wonder if it is any worse than what I'm on right now, the Elavil.  

Grrrr

[CloudBee]

I was on it for a while, but was then switched to Relpax.

Topamax made me really tired, and just feel "funny".

I have no side effects at all with Relpax. I think they're kind of similar?

Maxalt also worked REALLY well for me, but that stuff knocked me out so bad I couldn't take it at work.

[savan]

I took it for about a year for migraines. It worked in the beginning. I went months without a migraine. My main symptom was tingly hands. Eventually my migraines came back with a vengeance so I weaned off. I found coming off of it was the worst part. I ended up in the ER because I was sure something was horribly wrong in my head. They said it was just withdrawal symptoms, even though I was weaning appropriately.

[mrs.jacinthe]

I've been on it twice, both times for recurrent migraines.

First time I took the name-brand (and paid OOP, which was $$$$) and had no problems or serious side-effects, except a LOT of weight loss, which wasn't necessarily a bad thing. Second time, I took the generic and had all the side-effects that TrickyBob mentioned, plus some (random nausea, nothing tasted right, and I was ANGRY a lot.)

In the event that a doctor prescribes it for me again, I'll ask for the name-brand ONLY.

[Kit]

Well. The weight loss sounds like a bonus. LOL

[TrickyBob]

Oct 28, 2013 12:31:51 GMT -5 savan said:

I took it for about a year for migraines. It worked in the beginning. I went months without a migraine. My main symptom was tingly hands. Eventually my migraines came back with a vengeance so I weaned off. I found coming off of it was the worst part. I ended up in the ER because I was sure something was horribly wrong in my head. They said it was just withdrawal symptoms, even though I was weaning appropriately.

I forgot about the tingles. Feet, hands, etc. 

It did work on my migraines but ultimately, I would rather deal with a vomit inducing migraine than to deal with all the side effects. 

[Norticprincess]

I don't miss Topamaxland. It is worse than chemo brain for forgetting/being foggy.

[duff]

I took it a few years ago for migraines. The only side effect I had was the tingling hands and feet. I kept waiting for the weight loss but it never came. Maxalt was a godsend for the pain, but like PP said, it knocked me out and I couldn't take it at work.

[starbuck]

Interesting. I talked about this with my neuro. She has me on the generic Amerge which is supposed to be the bees knees for the migraines I have.

[papie]

I took it several years ago.  I don't remember much, but I don't think I had any terrible side effects.  Unlike Elavil, which I hated so much.  

[catinthehat]

I took it for a few months and I had issues with thinking clearly and speaking without sounding like an idiot. It was the strangest experience and I had to stop taking it. I did experience weight loss which was amazing. But the mental fog was horrible.

[bcv513]

I took it for almost ten years. I didn't have the weight loss side effect, unfortunately. No other side effects either. I came off because we're planning on TTC. My doc says it can cause birth defects.

[Kit]

All of these negative side effects are scaring me! Though, I would be on a low-ish dose, 50 mg, so maybe some of the more horrible side effects won't happen. Guess we'll see, eh?

[foundmylazybum]

I've been on it for 7 years and it changed my life for the better.

Tingling hands is a result of a potassium deficiency and if you take a potassium supplement it goes away.

I'm on a high dosage and sometimes have brief moments of word finding issues.

That said, I got a masters degree while taking it, have a successful job that requires memory and presentation skills, it reduced my migraines by 85%, and overall gave me back tons of control over my life. It also increases effectiveness of abortives ( relpax) and decreases migraine severity.


It's been a total game changer for me.

[milosh]

I loved it when I was on it. I only had side effects when first starting and stopping taking it. It made my birth control pill ineffective though. I'm back on Envil, but would like to go back someday.

[foundmylazybum]

Topomax is a preventative. A few people seem to have come off topomax and are either not using a preventative and just using an abortive ( replax, amerge,maxalt) or they are using abortives as preventatives... Which is highly linked with increased migraines due to rebounding.

[kate1482]

I hope the topamax works for you! That was the next step for me on my neurologists list for me to try. I've been on verapamil for the past 3 years and it absolutely has been life changing. Preventatives is absolutely the way to go! I've taken maybe 1-2 frovas in the past 2 years down from 4-5 abortive drugs a month.

[Kit]

I'm slightly concerned that it could "potentially" render the birth control pill ineffective. 

[snakeoiltanker]

Oct 28, 2013 12:57:55 GMT -5 Kit said:

All of these negative side effects are scaring me! Though, I would be on a low-ish dose, 50 mg, so maybe some of the more horrible side effects won't happen. Guess we'll see, eh?

My dose is 50 mg and my symptoms are very mild. I take it in the evening and I do feel a little foggy at night but by morning it's gone. Iv known two people who were on 600mg of Topomax, it was a completely different story for them. The side effects were extreme they could barely hold a conversation without forgetting their train of thought completely.
I take it for anxiety and ocular seizures, and I love it. The low dose is effective, and the side effects are minimal. Good luck.

[flufferkitty]

I took it and it made carbonated beverages taste awful. I also had the tingly hands and feet and the foggy memory. I had trouble finding my words, although I have been off of it for a long time and still have that problem. Now I am calling it "baby brain". I felt like it did an ok job of controlling the migraines. Unfortunately, I did not lose weight on it.

[starbuck]

Oct 28, 2013 13:11:20 GMT -5 foundmylazybum said:

Topomax is a preventative. A few people seem to have come off topomax and are either not using a preventative and just using an abortive ( replax, amerge,maxalt) or they are using abortives as preventatives... Which is highly linked with increased migraines due to rebounding.

My Amerge is just as needed. My migraines aren't too frequent these days so I have no need for a preventative. The only I was warned about was serotonin syndrome, which is a slightly increased risk for me as I'm also on Lexapro.

[Deleted]

I had a really crazy and uncommon side effect. It cut off the circulation to my toes so my toes started hurting and turning purple.

[Kit]

I will probably die if my McDonald's diet cokes start tasting funny.

Sent from my SPH-L720 using proboards

[savan]

Oct 28, 2013 13:11:20 GMT -5 foundmylazybum said:

Topomax is a preventative. A few people seem to have come off topomax and are either not using a preventative and just using an abortive ( replax, amerge,maxalt) or they are using abortives as preventatives... Which is highly linked with increased migraines due to rebounding.

I no longer need a preventative because pregnancy cured my migraines.  I had my last one at the end of the 1st trimester with DS, over 7 years ago.

[brit1017]

I was on Topamax for 5 years. It was a life-saver at the time. I was having severe migraines daily and was barely functional (I'm allergic to all the triptans, so my only choice for pain relief once I got one was to take drugs that knocked me out). Topamax decreased them to 1-2 migraines per month that I could control with high dose ibuprofen. I did have some mental fogginess, but like a previous poster, got my master's during that time and passed oral exams. I did lose about 20 lbs.
I ended up stopping cold turkey b/c I got pregnant, but did not experience side effects b/c of it. Six years later, I am considering going back on due to a steady increase in the number and severity of my migraines.

Sent from my HTC6435LVW using proboards

[swarley]

I saw this yesterday and wanted to comment but didn't get a chance to. I wanted to let you know about my experience.

I took Elavil from the age of 6 to 22. My doctor then wanted to try me on Topamax. Topamax made me absolutley crazy. I couldn't concentrate, I couldn't sleep and I was basically a raging bitch. It was the first time in my life that I ever felt drugged. I was on it for about 1 or 2 months when I tried Lamictal. Lamictal was a little better but I would still wake up panicked in the middle of the night and could not get back to sleep. After six months of that, I got back on Elavil. I took Elavil for around 5 more years when I decided to start trying to wean myself off about two years ago because we started trying for a baby earlier this year.

For the last two years, before I got pregnant, I got Botox injections to help with my migraines and they have helped tremendously. I went from 2-4 migraines per week to 1-2 every 10-14 days. If you have had trouble finding relief, it may be something to ask your doctor about. I have BCBS insurance and they injections are covered at 100%. If you want more information on that, please let me know. Good luck!