getting off Topamax

Can anybody share their experiences with getting off this drug? What does it do to you when coming off of it? Like...does the tingling go away right away, does it get worse, will I still feel crazy, or more crazy or less... will I start liking Coke again.... thanks!

I am not sure if there is any info on their site about weaning but there is a site called The Topamax Trip with tons of experiences... it wasn't too helpful to me because the forum has long since been abandoned by current posters, however the moderator still comes on... but maybe if you do some digging you could find some experiences in there relating to weaning itself.

Their site is focused on the drug topamax only, and anything to do with it.

I don't remember much from my short trial of Topamax except the panic attacks and the dumb as rocks feeling, but I do know that Coke tastes wonderful again, and I have no residual tingling. I don't think it took me very long, but I didn't end up on that high of a dosage before my neuro and I decided a quick taper off would be a good plan.

Thanks! I really miss my Coke! Ha!

And, I figure that crap is not working! I am up to 150 mg a day and I am still getting migraines daily! So, what's the point?!

I understand, I'm drinking one right now to help the Maxalt/Neurotin/Aleve combo kick in a little quicker. Ughh, paint fumes=migraine, but the living room trim HAD to get done.

Be VERY careful with your taper down/off Topamax, if you quit cold turkey you can have seizures, even if you're not epileptic. I talked to my neuro, and she and I made a taper plan, and she put me on an anti-seizure med for the taper. Take care!

Hi! How long have you been on the 150 mg? Topamax is one of those preventatives that takes 2-3 months to trial after you titrate up. Lots of doctors don't tell you that or take you off of it too soon. If you have been on it that long or just can't tolerate the symotoms, please contact your doctor so they know you will be titrating down, and can give you a schedule. Then, take that schedule and extend it out by at least double! Its not the worst med for getting off of (those are narcotics, anti depressants, benzos, etc), but it can make you feel worse if you do it too quickly. Some of the side effects can take awhile to wear off. If you've had any hair loss, that takes the longest to recover, 3-4 months due to the hair cycle. The other side effects went away about a week after I stopped it completely I think (and faded while I dropped the dose). The cognitive side effects were ther worst for me. If you go off it cold turkey or drop too fast, yes you could definitely get some bad withdrawal symptoms. Or even worse, it can cause seizures (even in those not taking it for those). Not something to mess with. Best wishes.

I have a question for you... just out of curiosity since you're on it as well, don't mean to hijack your thread

I take my Topa at night around 10 pm and if if it is about that time or late I get a slight tired/dizzy feeling. Do you experience that? like a mini withdrawal?

BabySeal-I have a more general answer to your question. Yes, some meds are very sensitive to when you take them, and just a couple hours late and you can go into mini withdrawal. Cymbalta was one I got this on really bad. I would start to feel really funny and get brain zaps (a lovely side effect unique withdrawal from that med). Didn't notice it with Topamax, but everyone is different. Best wishes.

Hi, when I tried to get off Topamax I noticed an increase in headaches/migraines. I told my dr the same thing you did "Im taking 100mg a day and im still getting migraines/headaches, what's the point?!" so I started weaning myself off and just like she said I would I noticed an increase in severity of pain with migraines and headaches ("You think it isnt helping but it is"). I figured better to feel kinda ditzy and a lil crazy than suffer more than I needed to. So Im back on the topamax...sigh...no bueno. But everyone is different and unfortunately Im learning there is no easy or right way to "fix" migraines. Take care and good luck :-)

Thanks for the replies. I weaned myself back off it. And I'm staying off it. I noticed no increase in migraines off of it and no decrease on it. I just felt like total crap on it all the time, dizzy, stumbling around like a drunk, weak, fatigued, moody, even felt crazy at times. Definitely not worth it for me. : (

Well, it has been about three days with no Topamax. The migraines are still here, still the same, pretty bad, actually, but I believe that is due to the crazy weather here--snow one day, then warm, then thunderstorms--gotta love Indiana! Anyway, the other symptoms, dizziness and tingling limbs are still present but not nearly as bad. I am still having trouble sleeping. But Coke is starting to taste good again...
We shall see...

Are you back to being smart again? I loved that feeling!!! (I'm on it again, so I'm a moron.) And I loved the Pepsi too! Sorry you are feeling like crap, but glad you're enjoying the Coke!

Hey guys,
I didn't get any withdrawal symptoms after coming off Topamax and actually (it did work for me but I was doing post grad study and it made me too dumb) even when I was off it the migraines stayed away for about 4 months. They're back now and I'm thinking of going back on it. Coming off it was a worry because I thought I would stay dumb lol, but I bounced back within a week. Is that true for everyone?

living- I would say that I got my brain back after about a week, it was just impossible to pass A&P without the ability to memorize muscle groups. I don't know about going back on it, there's not enough love or money in the world...I put it on my medication allergy list, with my doctor's blessing.

Tomorrow will be the first day of no Topamax at all! Finally! The migraines are the same now as they were when I was taking 200mg of the stuff a day, but, at least, I have some of my brain function back and I don't feel like I'm going to pass out every time I stand up!! The tingling is still there but not nearly as bad! I will NEVER EVER go back on this drug!

Glad to hear you are doing OK after the taper!

I recently stopped taking Topomax in November. I was on 100mg per day and it was doing nothing for my migraines. The only thing it was doing was giving me kidney stones. I've had a couple because of the Topo, which is a very common side effect. One in July 2010 had to be removed surgically/blasted. My last one was in November 2011 and the next day I started weaning off. I haven't had a stone since.

I weaned off as the doctor instructed. He started weaning me down somewhat because I had such cognitive problems. I got in the car and half way through my trip, I couldn't remember where I was supposed to be heading. If I hadn't have had my grocery list next to me, I probably wouldn't ever have remembered.

About a month after that, I got a kidney stone and was weaned off the rest of the way.

I can't remember exactly, but I think the tingling and nasty tinny taste in my mouth went away pretty quickly. Yep, you will love Coke again soon. LOL The only soda I could drink when I took that was 7-Up. That was probably a good thing. I hardly ever drank soda then because I don't care of 7-up all that much.

Oh my goodness. Are you guys serious? Topamax is the reason I have become so dumb? I thought perhaps these constant migraines have killed off brain cells or something. I have always been such a good speller, and lately I all of a sudden forget how to spell everything. It's driving me CRAZY. So many times I feel like I have a problem putting sentences together or remembering things, and cannot remember words or names all the time. I take Ambien to sleep (because that hampster on the wheel never stops when I lay down) and have always attributed the memory loss to that, do any of you have a problem sleeping? Is memory loss also a side effect of this drug?

Another thing...hair loss...TOPAMAX? I just about fell out of my chair when I saw that in one of the previous posts. I checked out the side effects sheet on one of my refills a while back and I couldn't find anything about it. I have been losing so much hair the last couple of years and I have very thin/fine hair to begin with.

I can't wait to tell my daughter this, she thinks I have completely gone off my rocker and is really worried about my hair loss.

Yes, it will most certainly make you dumb. Dopamax is a good name for it! I am really glad to be done with it, though, I am still experiencing a lot of the side effects since I haven't been off of it for very long. I am getting migraines daily, but I was getting migraines daily with the Topamax, too. At least now I have my mind back! Hair loss I did not experience personally, but I have heard of Topamax causing that, too! I would definitely talk to your doc about getting off of it!

Michelle

I have been taking Topamax for over 3 years. Last June I was increased to 200 Mg daily. And then a miracle happened in July, my migraines stopped!!!! I have been tapering off the drug at the rate of 1/2 pill per month. Presently I'm taking 1/2 pill for about 3 more weeks and then nomore.
After reading what you all have written about the drug, I didn't realize that panic attacks was a symptom. I'm not panicing as much anymore! I lost a little hair. I'm hungry all of the time (not a good thing).
I pray that migraines never come back because I don't want to resume Topamax again. But, I was in so much pain that was why I took it.

I'm not sure if anyone is still reading this thread but here goes...

I started taking Topamax for epilepsy about 6 years ago (I was 14 at the time), and I only found out a couple of years ago that it can cause memory and thinking problems... I was so angry. No wonder my grades started slipping in the middle of junior high! I kept telling my idiot neurologist I didn't like the side effects but he was too scared to take me off of it. Eventually they added Lamictal to my dosage of Topamax, so I have been taking 225 mg of Topa (a lower dose than before, if you can believe it) and 300 Lamictal.

I just started going to another neurologist who let me wean off the Topamax with my reports of the side effects and the fact that I haven't had a seizure in 4 yrs. I will soon be taking no Topamax and 600mg of Lamictal a day. Thank God! I believe the Topamax caused me a lot of social anxiety during highschool and the start of college because of the speech and memory problems, like not remembering what someone said to you 5 min ago, or that they already told you their name...

Anyway, I should get onto the topic of migraines. I had a lot of headaches as a kid. Sometimes I would even stay home from school because of them. I always thought I grew out of them, but now that I am getting off of the Topamax I have been getting horrible headaches and neck aches almost every day. I'm not sure if they're just tension headaches because I just started my 3rd year of college and I grind my teeth a lot.. Or that it turns out that I have had a migraine problem and Topamax was helping all along.

All I know is, even if these headaches don't stop, I will never go back on the Topamax. I refuse to be dumb as rocks anymore! I want to remember all the things I learn (I hope I don't have to RE-learn everything.. lol that would suck)... Not stutter while I try to remember and then bring it up like an hour later. I hope I'm not the only one with these experiences... Otherwise that means it's really just me hahaha.

chelle8178 wrote:Can anybody share their experiences with getting off this drug? What does it do to you when coming off of it? Like...does the tingling go away right away, does it get worse, will I still feel crazy, or more crazy or less... will I start liking Coke again.... thanks!

Hi fellow migraine sufferer: I was taking 300 mg of topamax for about 13 years. After, all that time..I'm not even sure that it helped cut down my migraines. I could not stand the dizzy feeling that I would always have. ..any way, I made the decision to remove myself & after speaking with my Dr. she agreed. It took around 2 months to taper off the med. I don't feel dizzy any longer but, I still have migraines well over 15 days a month.

To any of you who had anxiety/social anxiety while on Topomax, did any of you have problems still having it after quitting the medication? I am having a real tough time with some of the side effects lingering after quitting. Anxiety being a major one.

I quit topamax in March, and it took until May to stop having panic attacks, but I'm not sure how much of that was the test anxiety that the stupidity left me with. I wasn't sure if I was going to earn a passing grade in Anatomy until I was preparing for the final, but by then the panic about the tests had become habit. I still take an anti-anxiety med for major tests (like my board exams), and flights (which I had always used meds for, even before).