I lost about 30 pounds over a year.  Topomax did not stop my headaches - it made my imitrex tablets work again.  I found the side effect of topomax to be AWFUL.  It negatively affected my memory, my ability to express myself and my personality.  I would go completely blank when I needed to speak in public.  I became quick tempered and generally disagreeable.  Eventually, my doctor took me off topomax and started me on depakote.  Then I gained 40 lbs in about five months.  So I would not advise getting rid of clothes.  You may need them on your way back up to a bigger size in the future.

HI, Some people do and some don't.  I lost about 25, before I stopped taking it.  I had the side effect of feeling like it was way toooo hot all the time, like 200 degrees when it was only 65 outside.  I was standing on the porch.  Was kinda scary, to I quit it, to go back on Neurontin.  Hope this helps, just eat often..

i know some people loose weight and some dont... my lawyer lost 50 lbs on it

i have been on topomax for a few years.. i think its great.... it didnt take my migraines away but they arent as often as they used to be.. i dont have any side efects from it...

my neurologist did tell me to make sure that i drink tons of water with it cause it can incrrease risk of kidney stones

I don't know if you will lose weight.  My daughter was on Topamax for a year and was up to 400 mg a day and she put weight on.  The doctor told her it was a side effect of the drug.

I guess it depends on how  much Topamax you are taking as well as what other drugs you are taking in combination.  If you are taking Lyrica with Topamax, for instance, you likely won't lose anything.

So, on to your original question.  I'm a male, 49 years old and when I got on Topamax and my doc cranked up the dosage to about 400 mg I lost about 15 lbs if I remember correctly.  I was mostly due to Topamax changing the TASTE of most of the foods I was eating.  I just didn't want to eat them any more so watch out for that.  Eating simply wasn't a pleasurable experience for me. 

I lost about 10 pounds.  I've been on and off Topamax three times, and each time it has been the same.  When I would go off, I'd gain the 10 pounds back.  My normal "off Topamax" weight seems to be 155 pounds.  My "on Topamax" weight seems to be 145 pounds, and if I'm hitting the gym while on Topamax, I can get down to 140 pounds.

I didn't see a really great change in my headaches until after I joined this group, and read a lot more about rebound headaches.  I'd always known about them, but I never took them that seriously.  Well, I finally did, and spent two very painful weeks getting off all the OTCs I was taking.  (I'd stopped taking prescription painpills a while ago.  I have fibromyalgia, and it just doesn't make sense to take prescription painkillers when you know you have a life-long chronic pain disease.)

I'd read on this board that OTCs can stop your preventative med (like Topamax) from working properly, thereby making your migraines worse.

So, I decided to give it a go.

It was REALLY uncomfortable for two weeks while my body withdrew from all the Tylenol, Aleve, Sudafed, Ibuprofen, etc., I chugged everyday when my head hurt.  But, I stayed home as much as I could, and put hot "rice packs" (made out of tube socks filled with rice) on the back of my head.  My husband and son stayed out of my way as much as possible as I was unpleasant to be around, (to say the least.)

Things got better after two weeks.  My Topamax started to WORK.  My headaches DID get much better, and for the first time I think I saw the full effects of Topamax.

I mean, the medication always made me stupid, like it does everyone, (Dopamax.)  But, I've always been able to compensate for that.  I am a writer by profession, and I've always been able to continue freelance writing, even with the Topamax side effects.  Last year I completed a HUGE project for my son's school, (Distinguished Schools, and yes, we won), even while on Topamax.  OK, freelance is putting it politely.  I did that whole huge honkin' project for free. Whatever. I got it done, and had to pull a lot of all-nighters to do it.  

The point is yes, the medication has a boatload of side effects and many people cannot tolerate it.  I can.  I've gone off it in the past because I always wanted to know if I was BETTER and did not need it anymore.  My goal has always been to get off ALL medications, even if it meant getting kind of fat again.  And, the only way I would know if I was better, was to stop taking the meds.  So far, no luck.  The migraines always came back.  But, one day, maybe, I can be fat and med-free again.

This year I did do something else different, too.  I take Guai for fibro, which I have for four years, but this year, I combined it with Iodoral.  Iodoral is an old remedy, (in the liquid form it is known as "Lugol's Solution."  Been around since the 1800s.)  Anyway, after a couple of months on Iodoral, (which is simply an Iodine/Potassium supplement), my body started passing worms.  Yeah, gross, I know.  So, OK, I used to travel a lot to foreign countries on business, I figured, OK, I picked up a few parasites along the way.  So, did a bit of online research and decided to take a 30-day something or other to get rid of them.  Whoa!  I was shocked at the number of oogey things that left my system.  I won't say anymore than that, as I don't want to be gross.  But, I will say that my headaches got even better after that, my constant stomach aches improved, (but, are not gone fully,) and my stomach no longer bloats so much.  (It still does bloat if I eat wheat/gluten, so I just don't eat it.)  I am going to do another "get rid of parasite" thingie in 90 days.  (You have to wait 90 days in-between, as I don't think I got them all.)  I lost another 6 pounds when I got rid of all those critters, and the gunk that came out with them.  Better out than being in my system.  Not surprised I feel better with them OUT of my system.  My skin looks better, too.  Weird to think I was carrying worms around this whole time.  Also weird how we de-worm our cats and dogs every month but not ourselves?  My husband said when he lived in the Philippines growing up de-worming humans, as well as animals was common practice, and he always wondered why it is not common practice in U.S.?  (Apparently, it used to be, that's what the "Castor Oil" that our grandparents used to take was all about.  These days folks use different stuff because castor oil has a most unpleasant taste, and may not get 'em all.)

Anyway, that's my story.  Hope I didn't gross anyone out. - Diana

Don't recall weight issues, however, I got a kidney stone from Topamax.  I am doing so poorly again and had no success with so many drugs that my doctor is talking about trying the topamax again.  This time he would work with a urologist to change the pH of my urine to (hopefully) prevent kidney stones.  I am scared to death by this but don't know what else to do.  I am not sure I can walk around worrying about another kidney stone and I am not sure if I can go on like this with migraines all the time.  Now possibly from meds + an antibiotic that put me over the edge I am having severe stomach problems too.  So many complicated health issues that is ruining my life and that of my family.  It is so hard.  And that people don't understand.  I've been in the hospital because I can't let the migraines go due to previous stroke and increased risk of stroke with prolonged migraine.  And, while there have had nurses make reference to "drug seekers".  Now am also schedule for second occiptal nerve block as first did not work.  I don't know what to do anymore.

I gained weight.

Welcome to the site. I am new to it as well.  I have taken Topamax in the past and took it for about 4 months and had to go off of it due to concentration issues.  I could not hold a thought to save my life and when you run your own bussiness and have 2 kids this does not work too well.  I did not experience any weight loss while using it, but have heard that that was one of the side effects.  I have heard it being call the "Stupermodel drug", because you get model thin and stupid.  I hope you don't experience the stupid part.  Good Luck!

I am also on topamax and have always had problem with my weight...not to much but to little. The first 3 months were hard and I didn't eat much and lost quite a bit, but it has tapered off quite a bit now and my appitite is beginning to come back slowly. The average person....average weight and height may only see a few lbs lost the first few months and then start to go back to the way they were. If you really want to lose weight in a healthy way you should eat more small meals throughout the day and exercise, unfortunately the side effects causes you to not want to eat and your metabolism with slow down to a slugs pace by the 3rd month.

I hope this helps with your question.

L Rodriguez

I have been taking topamax for over 2 years and I haven't lost any weight.  I certainly wish I would have dropped a few pounds.  I heard this was a "possible" side effect.  One thing for certain is I do not experience migraines as often as I was & if I do get one it is total managable with over the counter stuff.

I want to know the answer to this. I'm interested in controlling my migraines and also losing weight.

My 11 year old has been on Topamax since Feb. At his last dr. appt he has lost 5 pounds but he has also grown a couple of inches so that probably translates into a larger weight loss. I was told by his neurologist that it would eventually taper off.

I lost some weight on Topomax, but could not tolerate the side effects. I had increased heart rates, lightheaded, shortness of breath, sweaty palms.  Very scary.

Hi!  I've lost a total of 82 lbs. over the course of 14 months and I really needed to lose the weight.  I had to work toward the loss at the beginning (say the 1st month) but after that I simply had no appetite.  

However, it has now gotten to the point that I have to really watch that don't lose any more.  I struggle to make certain that I eat enough to maintain my weight and I know that if I don't I won't be able to continue the Topamax.  

I've also had a lot of hair loss, which is either due to the Topamax or some sort of nutritional imbalance.  I'm seeking answers for that problem if anyone else is experiencing similar effects I would like to hear about it...

When I first started taking it I lost about 15 pounds.  It was gradual. But two years later, I've gained it all back and then some.

it depends on it you are on other drugs you are on. i am on topamax, lithium, luvox, abiliphy and xanax. i take imitrix when needed. i GAINED 45 lbs. so don't think of topamax as your wonder drug to loss weight. diet and exercise are always the way to go always consulting your doctor first. good luck.     dawn

Yeah, you'll lose weight because the taste of food becomes almost revolting. I lost about 20lbs. Now add to that likely depression(more weight loss) and I even had nightmares so bad that I couldn't go back to sleep, causing sleep deprivation.

I suggest you go back and talk to your doctor about the other, unpublicized side effects.

I lost (and still losing) 30 lbs in 3 months. Went from 136 lbs to 105 lbs.  Be prewarned you might stiffen up in the neck and jaw, get confused really easy and can't drink sodas or fizzy drinks .  But I eat like crazy, the trick is to eat healthy when you  do eat, to keep healthy.  My doc has me drinking poweraide and walking 20/30 min a day.  The little bit of exercise counters the stiffness that the topamax causes..... especially when they increase the dosage, its a little (some days it could be miles rather than mins) but it really helps.

I hope this helps.

I am currently on 100 mg of topamax a day and haven't lost any weight. I was hoping I would.  When I first started taking topamax, I had the side effects of nausea, so I needed to nibble on crackers (felt like morning sickness all over again).  Luckily that passed after the first couple of weeks.  So hang in there, the topamax is WAY better then the 3 - 4 migraines a week I was getting.  I hope you get the same great results. 

I think it depends on what your dose is. I lost about 20 pounds when I was on Topomax at 200 mg twice a day (the first time). I had to stop taking such a high dose though because it gave me kidney stones. After a year I went back on it and I am at 100 mg twice a day and I lost maybe 5 pounds at most. The most important thing about Topomax is to stay well hydrated. Drink lots and lots of water and try to stay away from iced tea and ice cream. That is what triggered the kidney stones in my case.

I was on Topomax for three months. During the last month I lost most of my desire for food, even coffee, which I love...

I lost over 6 pounds on Topomax and became anorexic. First time in my life, and, there was little relief for the headaches. I was tired all the time.

My brother had been on it one year, and then experienced his first kidney stone attack, and he quit Topomax altogether, as kidney stones are a side effect and he nearly passed out from the pain of it.

He is now on Namenda, an altzheimer drug. Very mild, few, if any side effects, and he finds it as effective as Topomax was.

Initially when I began Topomax 3 years ago, I lost about 12 pounds over a 3 month period. I was down to about 112 from 124. 

However as my body became used to the drug, I gained a few pounds back and am maintaining my weight at 118 pounds (normal for my height of 5'2) more than contining to loose it.

Hope this helps!

Becky

I was on Topamax for 6 months and I didnt lose Any weight, it just made me feel like crap. I had nightmares, carbonated drinks tasted horrible, I just felt like a walking zombie. 

From my experience it depends on the amount you take.  Serveral years ago I took 400 a day and lost 35 pounds (weight I had gained from other meds I had since stopped)...BUT the problem was I couldn't eat -nothing looked good although I was very hungry.  I also had severly abnormal thinking.  I did not realize it was the meds at first-I thought my symptoms were due to my Mom being diagnoised with severe dementia and I was unable to deal with it.  As soon as I decreased to 100 day my psych. symptoms stopped-it took a while to regain my desire to eat.  Of course, you or anyone else may not have any of these symtoms.  I will tell you as I lost weight the feeling of the not needing food became painful and I couldn't sleep because I was so hungry-obviously I was taking much more med than I needed but only you and your doctor can decide that.  Although I had initial problems, Topamax has been the best thing for my migraines.  Only you and your doctor know what is best for you.

I have been on Topamax for two years now and found that i have gained weight over those two years. I havent changed my eating habits from before i eat healthy and excerise all so i dont get a migraine. I sure do love my topamax once i got though all the side effects.

I am on it and those feeling of not wanting to eat will go away.  I lost about 10 pounds and that was all.

how soon will i start losing weight and how much do you normally lose

I have been on Topamax for 10 weeks I have lost 45 lbs and I have no other side effects. I do not get the migraines anymore, but if I forget a dose I will get other symptoms of the migraines.  I love the Topamax and wish they had put me on it years ago when my migraines first started instead of making me go thru all the pain and issues and worries that I was having a stroke when I got to the point of having complicated migraines!!

I've been on Topamax for 5 months now and lost a total of 23lbs. The side effects seem to be outweighing the benefits though.  It doesn't say it on the bottle but I seem to be losing hair more than usual when i brush it.  I looked it up and I'm not the only person this happens to.  I also now have a kidney stone.  My doctor says it's from the tea I drink but I highly doubt that since kidney stones is a side effect.  My electrolytes are also really unbalanced now so i have to have my blood work and urine tested every few months now.  Headaches are getting a little better but is it worth it?  Not too sure. 

Teri Robert, Health Guide

3/11/12 3:11pm

Lauren,

 

-:¦:-•:*'""*:•.-:¦:-•*Welcome to HealthCentral!*•-:¦:-•:*'""*:•.-:¦:-

 

Hair loss IS a potential side effect of Topamax, as is a higher risk of developing kidney stones. With your doctor saying the kidney stones are from tea, you might want to consider consulting a new doctor. We have quite a bit of information on Toapmax - Topamax Information Page.

 

In case it will help, here's the information about Topamax and kidney stones from the Topapax prescribing information:

 

Kidney Stones
A total of 32/2,086 (1.5%) of adults exposed to topiramate during its adjunctive epilepsy therapy development reported the occurrence of kidney stones, an incidence about 2-4 times greater than expected in a similar, untreated population. In the double-blind monotherapy epilepsy study, a total of 4/319 (1.3%) of adults exposed to topiramate reported the occurrence of kidney stones. As in the general population, the incidence of stone formation among topiramate treated patients was higher in men. Kidney stones have also been reported in pediatric patients.
An explanation for the association of TOPAMAX® and kidney stones may lie in the fact that topiramate is a carbonic anhydrase inhibitor. Carbonic anhydrase inhibitors, e.g., acetazolamide or dichlorphenamide, promote stone formation by reducing urinary citrate excretion and by increasing urinary pH. The concomitant use of TOPAMAX® with other carbonic anhydrase inhibitors or potentially in patients on a ketogenic diet may create a physiological environment that increases the risk of kidney stone formation, and should therefore be avoided.
Increased fluid intake increases the urinary output, lowering the concentration of substances involved in stone formation. Hydration is recommended to reduce new stone formation.

 

Prescription bottles are labeled only with the most common and potentially harmful potential side effects. Do you still have the information page that came with your prescription? There should have been information on it about the issue with kidney stones. You might want to start keeping all of those information sheets in a notebook or folder in case you need to refer back to them.

 

Welcome again,

Teri