Anyone have experience taking Topamax?

In My Humble Opinion
1

(to the mods) Not sure if this belongs here or in General Discussions…feel free to move it if needed.

Ok… I’ve had a weight problem for many many years, and have tried nearly everything under the sun except surgery (which I am still pretty much against). My doctor got me on the waiting list for the weight management center at a local hospital and I finally got in yesterday. Met with a very nice doctor for a long time discussing my history and habits and etc…

She’s starting things out by putting me on Topamax. I believe it’s a 4-week period to ramp up to 100mg daily. She talked about some of the possible side effects including tingling in your fingers, problems with the “man parts” operating optimally, and mental “confusion”. She said that using Topamax for weight loss is an “off-label” use - it’s not approved for that use, but is for seizures and migraines.

I did some research on the web and found that it was tested for weight-loss but withdrawn during stage 3 testing due to a number of side effects.

She said it might be particularly effective for me because it works well at stopping binge eating. That is one of my problems. Some studies discussing that usage are here,
here, and here.

I’m wondering if any dopers have experience taking Topamax, either for it’s “on-label” uses, or for weight loss. My doctor said to start taking it on the weekend in case I had side effects, and I had already scheduled a week of vacation next week, so I should have time to see what it does to me without worrying about it messing up my work.

Any information is appreciated.

2

I took Topamax for migraine prevention. I’m pretty thin already and was concerned about the weight loss thing. I did notice that some foods had an odd taste, anything carbonated, for instance, but didn’t notice any change in appetite. I also didn’t gain or lose an ounce.

Friend of mine lost about 30 lbs, though.

If ever there was a drug that is the very definition of YMMV…

3

I had a conversation about this very thing with a girlfriend yesterday. She neither lost nor gained weight while on Topamax.

4

Wow, for a second, I thought that someone who went by the name **Lips_Obsession ** was asking about tampax.
A second, and more precise, reading was in order.

5

I take topamax for seizures. It’s also approved for migraines. I’ll just tell you the side effects I experienced. Probably the most bothersome was tingling in my cheeks and hands and feet. That’s gone away now thankfully. I also experience some drowsiness, but that’s mild.

Topamax is not approved for weight loss because of the side effects it causes. I saw an initial weight loss, but I have since gained the weight back.
-Lil

6

I take Topamax for migraine prevention and it works wonders. I was part of a clinical study for migraines when I started on it. They were still studying its effect on migraine prevention.

I experienced the odd tingling in my fingers and feet when I first started on it, and the mental side effect of just not being able to recall certain words. I wouldn’t call it confusion; I would just blank out on certain words sometimes. One example: I had eaten Chicken Marsala one night at a restaurant, and was trying to remember what I’d had a few nights later while telling my mother about the meal. I just stood there saying, “I had that chicken, you know, with the mushrooms and the wine sauce, what’s it called?”
It was things like that - just trouble recalling certain words sometimes.
That and the weird tingling have both gone away now.

I lost about 15 pounds when I first started it, but I was very overweight at the time. That gave me the incentive to seriously start dieting, and I was able to shed more weight with a real diet and excercise program. I don’t know if the Topamax was helpful in getting the weight off or not.

7

I won’t say who, but there is someone on the Dope who has had excellent results using Topamax to combat compulsive overeating. Based on their testimony I brought it up with my psych doc. He said he would hesitate to prescribe it because it tends to dope you up (and not in a good SDMB way :wink: ). But if I am at the end of my rope I might press the issue, or a different doc might see it differently.

8

Hmm. The antidepressants I’m on help me not obsess about things (remembering every little negative detail), with the result that I sometimes don’t hold on to useful details as well anymore. I’ve become used to a lot of note-taking.

9

My son was perscribed Topomax for Autism related conditions. I yanked him off of it, after 2 weeks. He had a complete personality change, (not in a good way), daily nosebleeds, it did make him lose weight but he was slender to begin with, and we had to give him Melatonin to make him sleep, because the Topomax kept his brain turned “on” 24/7. After 2 weeks, he looked like a little old man from lack of sleep, weight loss, and depression.

10

I will mention that while I considered the tingling really annoying but worth it considering the Topamax was much more effective in controlling my seizures, when my sister tried it for weight loss she found them unbearable. So obviously YMMV. And I did have a little bit of the word recall issue, but that seems to have resolved itself as well.
-Lil

11

Well, be careful with topamax and be sure to ramp up to the full dose on the schedule they give you.

I take it for migraine prevention. I’m not really sure that it helps with my migraines, but I have lost an astonishing amount of weight while I’ve been on it. I have not been this thin since high school, and that was 20 years ago.

People I don’t know at work walk up to me and ask me how I did it. Frequently they don’t believe me. Often they want me to spell it.

When I was at 100 mg - nothing happened. 200 mg, ditto. (remember this is for migraines - so I was upping the dosage looking for reduction in migraines). When I got to 300, bam! I couldn’t NOT lose weight. I could (and sometimes did) eat nothing but hot fudge sundaes all day, and I lost weight. (I don’t recommend eating nothing but hot fudge sundaes). I didn’t know the weight loss was going to happen, and it freaked me out until my neurologist told me it was ok. Then she told me I was one of the lucky ones. :slight_smile:

Side effects are a big deal, and topamax clearly affects people differently. I loose words. It is a somewhat common side effect. Cognitive side effects in general are common, and you tend to hit a dose that you don’t want to go past because of the side effects. I won’t go higher than 300 - I can’t afford to be stupid at work. Initial confusion can go away, but my words have stayed gone.

One thing they they may not tell you, but women especially should know, is that if you are at a dose of 200 mg or higher, it will interfere with hormonal birth control methods (pill, depo, patch, …) and you will no longer be using effective birth control. It also causes bad birth defects. Yay for my IUD.

So I feel that I’ve had a good experience taking it, but I’m not taking it for the weight loss. Of course, I love the weight loss.

Oh - and the weight loss stopped. I hit a certain weight in May and now I gain and loose the same 5 pounds. I think that if I want to loose more, I have to do it the regular way. So Between January and May I had magic weight-loss metabolism, and now I have magic maintenance metabolism. My neurologist explained to me how and why it was working, but I’m not going to reiterate that here. I’m not a doc, and that seems like giving medical advice.

It is expensive. Even with great insurance, my co-pay is over $80. And then there is the wardrobe thing. Buying all new clothes has been a pain in the butt. It’s really not as fun as you might think it could be. The only thing from my old wardrobe that fits is socks. Even my old shoes are too big. So expensive in many ways.

I’ve revealed a lot of personal stuff here, so I hope it helps.

12

I have been taking topamax for weight loss for a long time. About a year ago, I began taking 300 mg. I have no side effects that I am aware of other than the loss of appetite.

I used to be obsessed with food and eating. I lost 150 pounds after a gastric bypass, but began to regain a little. My doctor put me on topamax. I couldn’t believe the change in the way I relate to food! Sometimes I forget to eat until after dark or even late at night. Then I will realize I have eaten anything all day. I keep “power bars” around for the sake of getting some nutrition.

I lost what I had regained and have held my weight down within reason successfully.

I am not always clear in my thinking and I do get sleepy. But I take a lot of other medications and I was that way before I took topamax.

Also, I am beyond my child-bearing years.

I hope this is helpful.

13

I took it for about a month for migraines, after the titration period, I was up to 200 mg twice daily. I don’t know if it actually helped with the migraines, but I quickly titrated myself right back down off of it when I could not handle the fact that my thought processes had slowed to a complete halt. I was losing my train of thought 2 seconds into it.

I too had the tingly extremities feeling; mostly in my toes, fingertips, and lips.
I didn’t notice any significant weight loss either, but I also wasn’t on it for very often. I just got to the point where I couldn’t think straight and I would open my mouth to speak and halfway through the story I couldn’t remember what I was saying. Very creepy.
As everyone’s said before, YMMV. And considering the drug is prescribed for so many off-label uses, (weight loss, compulsive disorders, smoking cessation, migraines, etc.) there’s such a wide berth for side effects. Good luck though.
-foxy

14

Thank you to everyone who has shared their experiences. I appreciate it. It seems as if most of your experiences were similar to ones I had read about elsewhere. I am not concerned about the tingling as I already have that due to my type II diabetes. I am more concerned about the mental effects, and hope I do not encounter them. I will update here on my experience as time passes.

15

I know I’m a little late here, Lips, but here’s my $.02:

About a year ago I was put on Topamax to offset the agitation I was experiencing with Wellbutrin. I didn’t have tinglies, but I:

– dropped 10 lbs. within a month. This was a rather pleasant side effect. However, as time went on, I completely lost my appetite. Thank gods I’m not skinny to begin with.

– had very weird-bordering-on-hallucinogenic (sp?} dreams. Dreams so vivid that I’d wake up and swear that something bright and shimmering was staring at me from the window. My husband said I quite restless – always squirming, kicking, tossing/turning. Once I practically clobbered his face. I had – and still have – no memory of it.

– Brain Fog. It felt my skull was stuffed with cotton most of the time. Somebody would ask me a question and it took a few minutes for the mental process to kick in before I could answer. I had to reread things 3-4 times minimum before I could interpret it. Most of the time I’d walk around with a half-dopey look. Pleasant at first because it felt like I was living something I was dreaming, but it grew old rather quickly.

In sum, I was taken off both the Wellbutrin and the Topamax because of my reactions to both. Haven’t been on anything since.

16

Tried it for a couple of weeks for ADD-related problems. Mostly no noticeable effect. Then I began concentrating intensely on everything. My head was abuzz. I was so touchy and distractible I couldn’t stand to hear two people talking at once. I stopped it quickly after that.

17

No personal expierence, but my wife (who took it for eating disorders) stopped taking it. She said there was a reason they call it Dopamax.

18

A relative of mine was prescribed Topamax for migraines. She found the side effects (i.e. mental confusion) intolerable and stopped taking it.

19

Just an update. I’ve finished the 1st week (25 mg) and no effects that I noticed, good or bad. I’m up to 50 mg today so we’ll see if that changes anything.

20

Ok…if anyone’s still interested…another update. I’m now up to the 100mg daily that my doctor initially wanted to achieve. At my last appointment she suggested we might go to 125mg, but that wasn’t definite. The first three weeks weren’t too productive. I only lost 2 lbs and that wasn’t much. I was eating fast food for just about every meal, and candy or cookies several times a week. Since I saw the doctor the last time and moved from 75mg to 100mg things have vastly improved. (That was 9 days ago now) Since then I haven’t had any candy or cookies, nor any sugared soda or other kind of beverage. I agreed with the doctor to eliminate fast food from my evening meal, and I have been successful with that so far as well. I have also down-sized my breakfast and lunch meals. I would say I am seeing good effects now from the topamax. So far, I have not had any bad side effects. Perhaps once or twice I’ve had trouble coming up with a word, but I’m not sure I could attribute that to the meds… I’ll keep the progress reports coming. I visit the doctor again on the 20th and expect to have much more weight progress this time.