Any success with Topiramate?

Starting Topiramate today (my second prescribed meds) and after a negative first prescription with negative effects I get worried. I always focus on the adverse effects and get worried. Hoping people will have positive stories with Topiramate.

There have been a lot of people on here (including myself) that have had a lot of success with Topiramate, however it is also one of the toughest drugs to tolerate. I don’t know what your doctor has recommended, but I personally recommend titrating up on it slowly. Otherwise it will probably make you feel so crappy that you will want to stop taking it.

The medication itself makes me feel like crap for about 5 days anytime I change dosages by 25mg. And I do mean like crap–pretty much like I’m stuck in a permanent migraine state (though I don’t get pain from my migraines so take that for what it is worth). When I change dosages by 25mg, the bad effects start to fade on day 5 and are gone by day 6. So I went up by 25mg every week or so. Not trying to scare you, just telling you what to expect so that you aren’t surprised.

I started feeling some positive effects around 50mg after just a few weeks, but most people don’t feel anything for a least a month. I didn’t get major symptom relief until 100mg and several months of treatment, but it has worked extremely well for me. I’d say it has eliminated 90-95% of my migraine symptoms. Unfortunately it does cause me issues with kidney stones, but I seem to have those issues mostly under control now with citrate supplements. Apparently the kidney stone issue is somewhat rare, I’m just one of the lucky ones.

So to sum up, yes it can be very successful in some people. It can also be a PITA to deal with. In general I’m pretty resistant to the negative effects of drugs and Topiramate still hit me like a load of bricks when I started up on it. You have to be patient with it at first and understand it WILL make you feel worse at first. Hopefully after you get used to it, it will start making you feel better.

Two last things–if you feel tingling in your hands or feet that is completely normal and some studies actually indicate that it might mean you are more likely to have the topiramate help you. If you feel any pressure or anything else odd in your eyes/vision that is not–that is super serious and you should call you doctor immediately. The eye thing is extremely rare, but I think it is the biggest negative side effect of topiramate. I believe it pretty much happens right away when you start taking the medication or not at all.

As always I should say I’m not a doctor so take your doctor’s opinion over mine. But this is my experience with topiramate.

I had great success with Topiramate (only just finished weaning off it 10 days ago).

I had minimal side effects for the first 50 mg (mild tingling in the hands and feet). I did struggle to get to 75 mg and it took me three attempts. The first two times I was extremely groggy but by my third attempt I didn’t notice any side effects at all.

My point of view is that if you are sick enough to require a med, it’s unlikely the side effects will be worse than you are already feeling. I always assume I’ll have little to no side effects and that the med will work its magic on me. Usually I’m right :slight_smile:

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My doctor is starting me off at 25mg the first week then 50 mg the second week and i’m staying at that. I actually just called out of work because I feel like a wave of nerves is over my body and my arms and feet are numb and tingly. Also have a tough time sleeping.Thank you for the insight. I do appreciate everyones input.

Sounds like your doc has you on a reasonable titration schedule so that is good. The tinglies in your hands and feet are completely normal and, as I said in the previous post, might actually indicate the topirmate is more likely to help you out. The wave of nerves could just you being scared about the medication–try to relax and think positively. Topiramate is one of the most effective migraine preventative medications. For those that can tolerate it, I believe it has a pretty high success rate. So just try to be patient and see if it helps you out–if you get worked up about the medication that will be counter-productive.

I think increasing by 25mg can be too much, and if you had to call out sick, it probably is for your body. I got up to 150mg and my increases were in 12.5mg doses. I split the tab in half. I’m now down to 62.5mg, in an attempt to stop the med and see how I do. I’ve been doing really well for 3 years now on topiramate.

If you are feeling really bad, I’d recommend splitting the tab and taking 12.5mg. Then only increase by this amount after you feel no side effects for at least 5-7 days. This is a powerful med, but a good one. One of the biggest mistakes people make is rushing it, feeling awful and then quitting before they give it a fair chance. Take it low and slow. Good luck!

I would just like to add a note of caution and yes, it’s great to feel positive about a drug (and that will undoubtably improve its chances of success), but topiramate does not work for everyone. I came off it a couple of weeks ago after titrating up to 100mg and giving it 3 months. I was supposed to give it 4 months and I really did try, riding out some horrible side effects. The main reason I stuck with it so long was was the positive feedback about it on this site. Unfortunately it didn’t work for me, which of course doesn’t mean it won’t work for you, but if it doesn’t then don’t in any way feel that you could have tried harder. It is a powerful drug and potentially mood and cognitive function altering. The tinglies are nothing, the worst side effect for me was that I couldn’t think straight. I couldn’t add together 3 small numbers. I couldn’t remember anything, I couldn’t express myself. Even to the extent that I couldn’t express the difficulty I was having to my doctor, so he kept me on it. It was not right for me and if you find at any point that you are not yourself any more, then bin it. I don’t wish to belittle the amazing effects it has had for some, just wanted to balance things a bit. I really hope it works for you.

Nubs, I don’t think anyone is suggesting that people stick with Topamax if it isn’t working for them. It most definitely doesn’t work for everyone. In fact, it is a very tough drug to tolerate, and for those that don’t tolerate it, the side-effects can be harsh, especially cognitively as you mentioned. Personally I never felt it hit my brain-power that hard–it definitely played some tricks with me when I was first getting used to it and I would sometimes have trouble finding words when I was trying to talk, but that faded after a while and now I don’t really notice it at all.

All I was saying is that it is pretty much guaranteed to make you feel worse before it makes you feel better, so don’t just quit it because after 4 days you feel like ****. You gave it 3 months–I think that is pretty good personally. As I said, it started helping me in 2 weeks (which is quicker than average) but I think for most people it is going to help, you would see/feel SOMETHING by 3 months. At least SOME improvement. You would have to ask everyone here, but I would guess that most of the people that have been helped by Topamax started feeling something from the medication earlier than 3 months.

As with all migraine meds, Topamax either works for you or it doesn’t. If it doesn’t, you move onto another med. All I want is for people to understand what they are getting into and know they have to ride out the initial bad wave to have any chance of it helping them. I post my info not to make people feel like they HAVE to use Topamax, but because when I first started taking it, I almost quit it because it made me feel so horrible. But people on here assured me that that was “normal” so I stuck with it, and it ended up giving me my life back. So I just want to do the same. There are obviously never any guarantees it will work for anyone else.

Topiramate is NOT guaranteed to make you feel worse before you feel better. By what measure is it ‘one of the toughest drugs to tolerate’? No-one suggests it works for everyone either.

I don’t see any purpose in catastrophising like this and making sweeping and generally negative comments. It just makes sick people even sicker with anxiety about how they might (but probably won’t) feel. The OP specifically said s/he tends to focus on adverse effects and get worried and was hoping for POSITIVE stories.

If we’re going to speak anecdotally then speaking for myself and my POSITIVE story - to recap.

Up to 50 mg I had numbness/tingling in my hands and feet. Big deal.

On trying for 75 mg the first two attempts were very difficult (I was a zombie) but on my third attempt I had no additional side effects whatsoever.

Coming off Topiramate (which I finished just two weeks ago) was fine.

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Good lord I can’t win. Make up your minds, am I pumping up Topamax as a wonder drug or demonizing it as some sort of horror?

IN GENERAL people feel worse for the first few days of taking Topamax.
IN GENERAL this fades after a few days, usually by day 5 or 6.
IN GENERAL this same effect tends to happen again anytime the user alters their Topamax dosage
How bad they feel tends to depend on how much they are altering their dosage by, so people who are having a lot of trouble can try titrating by smaller amounts (say 12.5 mg)
If you don’t have this happen to you, then awesome, you’re lucky! Everyone responds differently to every medication.
IN GENERAL if you can get used to the medication, at a migraine dosage you can take it without having many side-effects.

Topamax is one of the most effective anti-migraine medications. That doesn’t mean it works for everyone, it just means it is one of the most effective medications and is usually worth a shot even if it is tough to get going on. According to my neurologist, a lot of people give up on it early specifically because it can be rough at the start.

Take that information as you will.

I am starting this drug on Monday, I am currently on nortryptoline but I’m still getting numbness and a bouncy head from computer use and fluorescent lighting

Just wanted to say I have had some change on it. Not sure what my neurologist and I will decide when I meet with him next. I’ve been on for almost 4 months. My tingling has gotten less noticeable but still there at times. I had memory issues at first, but those seem to have gotten better. I have to agree with JamieH that whenever my dose went up I had a rough week. The reason I’m not sure what will happen is because I had two bad colds during my first two months on it. It was hard to measure improvement and what was causing the dizziness and migraines. I noticed some improvement but maybe not as much as I wanted. Recently (two-three weeks ago) I fully gave up caffeine and think that with the topiramate has made a difference closer to the one I was hoping for. Unfortunately only time will tell what will work for sure. Hoping your results are much better from the beginning!

I’m on my first day of topomax and I can definitely say my symptomss are worse, if I never knew to expect that I would probably consider coming off it, luckily I’m off work for the week so I will persist

— Begin quote from "UPGRADER"

I’m on my first day of topomax and I can definitely say my symptomss are worse, if I never knew to expect that I would probably consider coming off it, luckily I’m off work for the week so I will persist

— End quote

Good luck to you :slight_smile:

Duplicate post

3rd day on it , my symptoms have been consistently worse on this medication, head has been bouncing more, I have had ibs, insomnia and a bit of depression thrown in but I’m persisting in the hope that I will improve

— Begin quote from "UPGRADER"

3rd day on it , my symptoms have been consistently worse on this medication, head has been bouncing more, I have had ibs, insomnia and a bit of depression thrown in but I’m persisting in the hope that I will improve

— End quote

So how much time do you give a new med? I’m trialling Effexor, on day 12, no real side effect issues (I don’t guess) but how long do you give it? Right now my head is throbbing and it’s making me slightly dizzy. So freaking annoying!!!

Hi dizzybee, I’m giving it a month at most, unless things improve drastically I’ll be coming off it, the fact it’s directly affecting my symptoms could mean that it’s working,well that’s what I’m hoping anyway, Effexor was the other option for me to try if this doesn’t work,

I have heard from different sources that it can take a good six weeks for a med to fully work it’s way into your system, it’s tough going especially with work commitments etc, I hope things work out for you

I’ll put my two cents in for what it’s worth.
I’m on my second topiramate attempt. First time had terrible depression and mood swings. Threw it in after two weeks at 25mg.
The second time I did a week at 12.5mg and tolerated it a lot better. Now have finished week 2 at 25mg and had one bad day of depression. I am starting to see some benefits though and think it could work if I stick at it.

I’m also combining it with 12.5mg Amitriptyline (on day 2 of that) to manage anxiety.
I am a MAV newbie though so not sure how I will go at higher doses.

I’m not overly impressed so far. What I have noticed the most is a few days after going up to 50mg my stomach has horrible pains. I wake up about 5 in the morning and can’t fall back to sleep because of my stomach pain. along with the stomach pain and trying not to be to detailed I have done very little bowel movements and my butt area is very sore. Again not trying to be to detailed. Not sure I can stay like this. Not sure what else would cause this. Never felt this before.