Stopped Tompamax for Migraines...weight is comig back!

WendyL525

I did a lot of research on this topic - turns out, people are actually prescribed Topamax to help with weight loss!? I didn't know that, and I have been on it for about a year....almost exactly the same time i started my diet, i started the meds. Now im down about 40 lbs..50lbs at one point. I stopped taking the med - it had terrible side efx - main being, hair loss!?!? However, once i was completely off of it- i have been putting weight back on .
I honestly do not believe it has to do with eating more or anything...i basically eat the SAME foods every meal.
I'm up 5lbs since i stopped it about a month ago. I guess im just freaking out, but has anyone else had any similar med/weight gain/loss issues!?

Thanks!
Wendy


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cressievargo

Interesting. My Mom has been on Topamax for years and keeps losing weight (too much, really) and she is most definitely NOT trying to.

HotAshMess

I was prescribed it one time for my binge eating and my migraines. One of those 2 for 1 drugs.

I should add...the fact that it cut down my migraines was frickin awesome, but I didn't lose any weight because I quit taking it shortly after I started because it made my face tingle in a weird way

MyaPapaya75

They prescribe it along with apidex for weight loss...some people have nasty side effects some don't...I take Topamax have been for a while now 100mg its a seizure/migraine med....when u do go off it you have to make sure you ween off it over a 3 week period you cant just stop taking it..

janinab75

I was prescribed Topamax 2 months ago for Migraines, 1 month after I started back on MFP. I did noticed it helped my weight loss. I adjusted the the side effects now. I am still taking it, and doing well with it. I posted a topic about it about a month ago, just asking people about their experience on it, and it really varied. Some people had terrible side effects, some people did okay. I do worry though if and when I stop taking it what would happen. I'm working hard on losing weight, so I would hate to have it come back if I ever stopped taking this drug.

ItsCasey

I think the weight gain probably has more to do with not decreasing your intake and/or increasing your calorie burn enough as you've lost weight. If you want to keep losing weight, you have to do one or the other or some combination of the two.

I'm not a doctor or a pharmacologist. It's entirely possible that the medication has some up-regulating effect on your metabolism that allowed you to eat more when you were taking it. That just means if you're not going to be taking those meds anymore, you need to make some changes to your diet and/or exercise routine to account for the difference. In the end, your weight gain is caused by eating more than you burn, not from quitting a certain medication, and you may be burning calories less efficiently now.

WendyL525

They prescribe it along with apidex for weight loss...some people have nasty side effects some don't...I take Topamax have been for a while now 100mg its a seizure/migraine med....when u do go off it you have to make sure you ween off it over a 3 week period you cant just stop taking it..

I absolutely weened myself off - I'm in the medical field and have been on and off enough meds to know better.

WendyL525

I think the weight gain probably has more to do with not decreasing your intake and/or increasing your calorie burn enough as you've lost weight. If you want to keep losing weight, you have to do one or the other or some combination of the two.

I'm not a doctor or a pharmacologist. It's entirely possible that the medication has some up-regulating effect on your metabolism that allowed you to eat more when you were taking it. That just means if you're not going to be taking those meds anymore, you need to make some changes to your diet and/or exercise routine to account for the difference. In the end, your weight gain is caused by eating more than you burn, not from quitting a certain medication, and you may be burning calories less efficiently now.

Yeah - good point, maybe it was burning the calories faster. Thats what im doing now - watching real close how many calories im taking in and working out more than i was when i was on it. It was strange, it got to a point where i wasnt trying to lose weight, but it just kept coming off, no matter what i eat (within reason). Now....forget it!!! I go out and have an appetizer (not low cal) and a margarita and im UP 2 freaking pounds the next day. WHen i was taking that stuff, i could do that and more and be down the next day. It was great LOL.
The side efx weren't too too bad for me - but i had foggy head all the time, like it would take me a minute to get my thoughts straight and focus on something that required a lot of thought process. That and the fact that i was up to 300mg a day and my hair was falling out in chunks! You can see in my pics - the hair pic in my black halter dress is when it was at its worst....i had bald spots. The pics of me now....i have hair extensions to 'fill in the blanks'. I've been off for a month and i pray my hair comes back....just not the weight.
Gonna step it up on the working out and def keep a better watch on the calories. Thanks for all the quick replies on this!
This was my very first post on here and I'm loving the feedback you guys are so quick to give

Thank you!!!!!!!!

KxCoyote

I was on Topamax for migraines. But didn't stay on it long enough to see any weight difference, was only on it for a day and immediately taken off because it caused me to have a minor stroke(Happened little over a year ago) And I'm still having memory issues because of it.

eclaireya

YES! Same thing happened to me. I was on Topamax for two years and while I definitely don't credit the medicine alone for my weight loss as I made lifestyle changes that had me losing weight already- it most certainly accelerated it. I didn't feel like it helped my migraines enough to deal with all the side effects (the ringing in my ears and numbness in my fingers and toes drove me nuts!) so I went off it about 9 months ago. BAM! Hello 15 lbs. Now that too wasn't completely the medicine, I had to stop running due to injury BUT my very slow weight gain due to the injury became very quick (15 lbs in 3 months) when I went off the Topamax. The thing i noticed the most was when I was taking it, I didn't have as much of an appetite- it really worked as an appetite suppressant for me- so as soon as it was out of my system, my appetite came back and I felt hungry all the time.

The good news is that sticking with a plan has helped and for me personally, finding a way to stop snacking so much and work on my self control. I am losing, but with nowhere near the speed I did on the Topamax. However, I also don't want to be on a medication for the rest of my life, so I just had to figure it out.

As a side note- I started doing Bikram Yoga at the end of May, and I have only had one migraine since then. Normally I would have had at least 5 in that period of time. Works for me way better than Topamax and no crazy side effects!

Good luck!

WendyL525

YES! Same thing happened to me. I was on Topamax for two years and while I definitely don't credit the medicine alone for my weight loss as I made lifestyle changes that had me losing weight already- it most certainly accelerated it. I didn't feel like it helped my migraines enough to deal with all the side effects (the ringing in my ears and numbness in my fingers and toes drove me nuts!) so I went off it about 9 months ago. BAM! Hello 15 lbs. Now that too wasn't completely the medicine, I had to stop running due to injury BUT my very slow weight gain due to the injury became very quick (15 lbs in 3 months) when I went off the Topamax. The thing i noticed the most was when I was taking it, I didn't have as much of an appetite- it really worked as an appetite suppressant for me- so as soon as it was out of my system, my appetite came back and I felt hungry all the time.

The good news is that sticking with a plan has helped and for me personally, finding a way to stop snacking so much and work on my self control. I am losing, but with nowhere near the speed I did on the Topamax. However, I also don't want to be on a medication for the rest of my life, so I just had to figure it out.

As a side note- I started doing Bikram Yoga at the end of May, and I have only had one migraine since then. Normally I would have had at least 5 in that period of time. Works for me way better than Topamax and no crazy side effects!

Good luck!

OMG! SAME THING WITH ME!!!!! The numbness in my fingers and toes....was the worst!!!! My doctor didnt think it was due to the Topamax, but now that i dont have ANY of that anymore, i guess he was wrong! Esp now that i know you had the same thing happen to you.
Agreed - i was never really hungry taking that med - i could and would sometimes go all day without eating. And yes, now - appetite is back - full force. I have to stick to exactly what i was doing while i was on it and not fall back into the bad habits and routines i was in before i started the diet (and meds).
Im going to look into a yoga class in my area - of course all the ones i looked at were during the day, so i have to keep looking, but thats def. something Id be interested in too. For the mental and physical results.
Thanks for sharing - good luck with getting that 15 back off, sounds like you're right on track....it'll be gone in no time, keep at it

WendyL525

I was on Topamax for migraines. But didn't stay on it long enough to see any weight difference, was only on it for a day and immediately taken off because it caused me to have a minor stroke(Happened little over a year ago) And I'm still having memory issues because of it.

WOW - i knew there was a reason i never wanted to go on it. I am so sorry to hear that....
The memory stuff was an issue with me too - it was awful to not remember something that i should have remembered, given it was something that happened so recently.
Sorry you're going through it still....
Thanks for the reply.

ichoose2believe

I was on it for a year (migraines) but I started getting intense itching. Now that I am off the itching has stopped. I have been off about 2-3 weeks now. I noticed that it is harder to lose weight now and i have been at the same weight for a while now. We shall see.

WendyL525

Exactly!! If i was up a pound or 2, id have it off in a day. Now it takes me a week. Definitely think Topamax had a lot to do with how quick i lost this weight.

scottkjar

My physician prescribed Phentermine for appetite suppressant and then added Topamax for fat burning. I started to get headaches, and my total concentration level was down. I could no longer process complex information as well.

I talked to the physician and he said that there are sometimes cognitive side effects from Topamax, so he had me stop taking it. I took neither pill for a week to let them out of my system, and the headaches went away and my cognition is better.

Now he had me restart the Phentermine alone, and I find some of the headaches are back, but I have not yet seen the concentration problems. I think the headaches are because Phentermine affects my sleep, but it sure does suppress my appetite.

So I have no doubt about the cognitive effects some of you describe.

tj1376

I was on and off this drug for years for my migraines. It did help with my hunger a little, but not enough that i lost weight, I just didn't eat as much. Once I stopped taking it I would find I was hungry all the time.

It will make your nose tingle if the dosage is high enough. Its a minor side effect that i didn't mind. What I DID mind was the memory loss and the fact that taking it while using birth control negates the birth control. Ladies if your taking both, talk to your doctor!!!

abble_pie

I just started taking topomax on last Thursday for bipolar disorder, I'm interested to read everyone's experiences with this medication.

CaeliGirl11

I went on it a little over a year ago and lost weight...maybe about 15 lbs without adjusting much of anything with my diet but that stopped about 2-3 months after I started taking it. I had side effects and I was expecting them because I did my research and my Dr. did tell me about them. tingling fingers and toes, memory issues, word finding issues. etc. However, since I've been at my dose of 150mg/day for a little over 8 months the side effects have lessened (hardly ever have issues with tingling (only if I miss a dose cause I was traveling or something), hair loss has slowed WAY down and word finding issues are...well...haha...I just get used to that part) But its so worth it to have a drug that works on my migraines cause before I was getting about 2-3 a week and now I get about 1 every 6-8 weeks!! AMAZING! The only reason I see myself having to come off this drug is when I plan to have another child. That's it...
But I don't think its been helping me lose any weight now....and I think if I went off of it I'd just have to keep watching what I ate...5lbs is so minimal in the grand scheme of things that it could just be water weight...I'd see if you keep seeing a trend up or make some minor adjustments now and see if it goes back down.

Oh yeah...and it made all of the diet colas taste just NASTY...which was a shame on my part cause I used to love Coke Zero...but I've just gotten used to clear sodas...and water...which I guess is better for me anyways;)

random_user75

I was on Topomax for about eight months for epilepsy about 12 years ago. It definitely suppressed my appetite, but it seemed like I lost weight faster than just due to reduced calorie intake. (i.e., I was a lazy bum with no serious exercise routine.) Anywho, I was at a "healthy" weight according to my BMI but not through conscious healthy lifestyle changes; I could enjoy it (yay, skinny!) but couldn't really be proud of it at the same time (yay, better living through chemicals and no personal responsibility!). Fortunately, I went off it because it made me dumb as a bucket of hair. I gave it the highly clinical term "spaghetti brain"--so weird my neurologist thought I was having a new (to me) type of seizure; I wasn't; it just wasn't the drug for me. I switched to Lamictal, got my appetite back, packed the pounds back on and then some, and chubbily grumped for a decade. I think the Lamictal helped some with the weight gain, but it was my overly ample appetite, an appreciation for fine food and drink, and laziness that really did the trick. Lather, rinse, repeat.

About 100 pounds later, I'm switching to Keppra, and I'm experiencing a suppressed appetite again but not to the same degree (caveat: atypical side effect). This time, it motivated me to change my lifestyle because I want some of the credit. I'm greedy like that. I track my calories to make sure I get enough (never thought that'd be a problem) and exercise 5 times/week or more, mostly cardio. Weight training is the next hurdle.

Long story short (too late): drug-assisted weight changes will not stick with you without lifestyle changes. They might serve as a good kick in the butt (as the Keppra switch did for me—50lbs+ lost since March), but it's the lifestyle changes not the drugs that will get you there and keep you there in the end. Or so I’m told, since I’m not exactly at that maintenance part, yet.

Best of luck.

SarahBeth0625

Years ago, I was on Topamax and I do remember losing a small amount of weight as a side effect. I was also on 100mg of Imitrex to be taken at onset of headache. I went off all meds in 2006 to TTC and my migraines disappeared... (turns out it was the hormonal BC that was causing my migraines for all those years). Seven years later and I'm still headache free and down weight thanks to tandem nursing, diet, and exercise. I would say just find a new normal and I'm sure the weight will come back off. FTR, I was 137 lbs in my college years and now at 33, I am maintaining 126 lbs. I go to the gym 6 days a week and give the most credit to strength training for visual results. I am the same weight now as I was a year ago (again, thanks to the nursing) but now I am actually toned.

KxCoyote

Yes, at first I lost a lot of my memory, for instance I was in the last few months of my senior year, big play coming up, had all my lines memorized.
Lost. Everything. All my lines were forgotten, couldn't remember my class schedule, or what rooms my classes were in, or my teachers. It was scary, and because the doctors couldn't 'Prove' I had a true stroke, they couldn't do anything for the school. I ended up failing my Drama class because I couldn't do the play(Final exam), and nearly failed my senior year( WHich was already a year late due to a big move)

For now, and probably the rest of my life, my short term memory is fried. I have issues making new memories. I often go room to room and forget what I did, I have to be careful with meds because I'll forget I've taken them, It's horrid. Be real careful with meds you take, and always do research first. Don't always trust your doctor. Please, learn from my bad experience.

healthyKYgirl

Sometimes, it can take a while for your body to adjust to a change or reduction in medication. It could be storing water or changing metabolism or any number of things.

A large percentage (20%-25%) of calories (base metabolism) burned each day is by the brain. Since this definitely impacts the brain and changes brain chemistry, your body/brain could be adjusting still. I would stick with what you are doing for another month and see if the weight gain plateaus and then adjust from there. I don't know how long it takes for brain chemistry to return to normal after weening off this type of medication; I think it could take several months even though you may not visibly notice the changes after a few weeks.

RunionX4

I was on Topamax for about a month and couldn't handle the side effects. They should not be scripting that out for weight loss. That is a serious drug.

But I can see where being on a drug like that for a while and it causing some weight loss can cause you to gain some of it back when you get off the drug. I have no answer for you other than keep working at it. Hopefully you will find a good answer. Best thing would be to talk to your doctor about it.

Good Luck.

madworld1

Sure have. But, I took Zonegran. Same type of medicine. It's called the "thin and stupid" drug or something like that. I know why too. I was dumber than a box of rocks on it & pencil thin. I stopped taking it when I started college. I need to be able to think to pass my classes. Zonegran would have resulted in disastrous grades.

I've put on at least 10 pounds since I stopped taking it. It decreased my appetite and cravings for carbs/cokes. I am slowly regaining control.

Adw7677

I was on it for Migraines - MIRACLE DRUG, I must say. For the first month (until I adjusted to the side effects), I noticed a sharp decrease in my appetite. I had to close my eyes and hold my breath and just force myself to eat. Never amounted to any weight loss though.

I've been off of it for about a month or two. Exercise (and avoiding caffeine) has helped tremendously with the migraines (and relieved the high blood pressure and depression). I haven't noticed any change at all in anything - which is weird since I didn't even taper down, I just ran out of pills.

I don't think Topamax does anything to affect your metabolism, but rather has the effect on your appetitie. You might be eating just enough extra that you don't notice it - even drinking 1 sugary soda everyday will add up. You could stop into any pharmacy near you and speak to the pharmacist. A good pharmacist will be willing to look up the drug and see how it would actually affect your weight after you stop talking it. Best to try a Mom&Pop type of pharmacy rather than the chain pharmacies, as the chains run on a skeleton crew to increase profits.

Even if you do gain some weight, you should go back to "normal" after everything wears off. It's better NOT to have all the manmade crap in your system.

Good luck!

allaboutthecake

. That and the fact that i was up to 300mg a day and my hair was falling out in chunks! You can see in my pics - the hair pic in my black halter dress is when it was at its worst....i had bald spots. The pics of me now....i have hair extensions to 'fill in the blanks'. I've been off for a month and i pray my hair comes back....just not the weight.

For your hair: I take GNC Skin/Hair/Nails Formula for Women vitamins. But honestly what is working waaay better for my hairless head? Nioxin: Nioxin Shampoo, Nioxin Conditioner, and Nioxin Scalp Treatment. If you have viable hair follicles, this stuff is very effective. I have little tiny baby hairs coming in,whoohoo!

sharonfoustmills

FDA has not approved topamax for weight loss, but it is a side effect for most who take it, that's true. Topamax can make eating disorders worsen, so it is not good for those who binge eat to take it nor for anorexic patients.

I took it for migraines for a year or so, and it began to make me obsess about things it seemed. At any rate, if you don't need it for the migraines anymore, then look for better alternatives to control appetite like high fiber/ high protein meals.

mama2redhead

I was on topamax for migraines for a year or two, at a fairly high dose. I intentionally lost weight during that time, and kept it off for several months using weight watchers. I gained 10 or 12 # in a month after stopping the med. I think my weight leveled off there, but it is hard to be sure, because soon after I got pregnant (which was the reason I stopped the med).

The only side effects for me was that soda tasted flat and it changed the taste of my favorite beer, so that I didn't really care for it anymore.

This was all about 2 years ago now.

Bearbrat

YES! Same thing happened to me. I was on Topamax for two years and while I definitely don't credit the medicine alone for my weight loss as I made lifestyle changes that had me losing weight already- it most certainly accelerated it. I didn't feel like it helped my migraines enough to deal with all the side effects (the ringing in my ears and numbness in my fingers and toes drove me nuts!) so I went off it about 9 months ago. BAM! Hello 15 lbs. Now that too wasn't completely the medicine, I had to stop running due to injury BUT my very slow weight gain due to the injury became very quick (15 lbs in 3 months) when I went off the Topamax. The thing i noticed the most was when I was taking it, I didn't have as much of an appetite- it really worked as an appetite suppressant for me- so as soon as it was out of my system, my appetite came back and I felt hungry all the time.

The good news is that sticking with a plan has helped and for me personally, finding a way to stop snacking so much and work on my self control. I am losing, but with nowhere near the speed I did on the Topamax. However, I also don't want to be on a medication for the rest of my life, so I just had to figure it out.

As a side note- I started doing Bikram Yoga at the end of May, and I have only had one migraine since then. Normally I would have had at least 5 in that period of time. Works for me way better than Topamax and no crazy side effects!

Good luck!

OMG! SAME THING WITH ME!!!!! The numbness in my fingers and toes....was the worst!!!! My doctor didnt think it was due to the Topamax, but now that i dont have ANY of that anymore, i guess he was wrong! Esp now that i know you had the same thing happen to you.
Agreed - i was never really hungry taking that med - i could and would sometimes go all day without eating. And yes, now - appetite is back - full force. I have to stick to exactly what i was doing while i was on it and not fall back into the bad habits and routines i was in before i started the diet (and meds).
Im going to look into a yoga class in my area - of course all the ones i looked at were during the day, so i have to keep looking, but thats def. something Id be interested in too. For the mental and physical results.
Thanks for sharing - good luck with getting that 15 back off, sounds like you're right on track....it'll be gone in no time, keep at it

It makes my fingers and toes tingle, too. It is listed as one of the side effects, strange your doctor didn't think that was the cause. I'll deal with it because, for me, the benefits far out weigh the feeling I've been sitting on my hands for hours lol. As far as the weight loss, my first neuro who put me on it did say that it's been known to cause weight loss. In my case, like others....I can go all day and not feel hungry and my food tastes strange. The only other side effect is the feel of flightiness, if that makes sense. I feel like I'm going from one thing to the next without really finishing anything. That drives me nuts.

bpmichael

I was in a medical drug study a couple of years ago and it was the clinical trial of Topamax and Phentermine. It has been approved now for about 1 year under the name of QSYMIA. You may have seen ads on MFP

Unfortunately I was unable to stay in the study. I did not feel well and was very forgetful. My blood pressure also went up (probably due to the Phentermine). Topamax has also been nicknamed dopamax due to the side effects on the brain. I don't take any meds so it may have hit me harder than most but I couldn't tolerate the side effects. I did hear many people in the study were quickly losing 70 to 80 pounds (less than 6 months)

ravenstar25

Topomax absolutely has weight loss as a side effect for some people, it is a well known side effect. It is not known how or why this side effect occurs, but Topomax is now being used in combination with some other medications as a weight loss drug for this reason. It also can have, for some people, other very undesirable side effects. I take it for migraines and am lucky not to have the undesirable side effects - I am fond of saying it saved my life! However it has not, for me, made losing weight one bit easier. I wish it had. Therefore I can see how stopping it can have a slight rebound effect on your weight. You'll have to really tighten up your program, I suspect - but if it was having a very negative effect on your health, I wouldn't go back on it just to keep the pounds off.