Sorry if this question has been answered before. I'm about to start taking Topamax for binge eating disorder, and I've heard it can cause weight loss, which would be welcome in my case. What I'm worried about is losing a ton of weight and then gaining it all back as soon as I go off the medication (which I probably will do eventually). Have any of you lost weight on Topamax and successfully kept it off after stopping the medication? Or does everyone gain back whatever they lost and then some?
Has anyone kept the weight off after discontinuing Topamax?
Question posted by hxp7 on 15 May 2017
Last updated on 7 May 2023 by SRMSRM
This question has also been asked and answered here: Does topiramate cause weight loss?
10 Answers
SRMSRM
7 May 2023
I took Topamax for 2 years and it’s taken me almost a year of being off it to have my metabolism start to kick in a bit. I gained a lot of weight since going off Topamax: way more than I ever weighed before, and it was causing health issues, but no amount of exercise seemed to help. So maybe there’s some general rule of thumb like for every year you’re on it, it takes half a year to restart your metabolism-? Or maybe around the year-mark of being off, is when ppl can expect to see positive changes? I’d love if others could share their timetables so we could piece together the bigger picture.
mvanwall
12 Nov 2022
No, in fact, I lost about 20 lbs while on topiramate and in the year following after stopping it, I regained 30. I am in my 3rd year after stopping and I can't seem to sustain any weight loss for long if I'm lucky enough to lose any. I'm tried of medical people always acting like eat less lose weight, no brainer. Well maybe you just don't have the answer, but don't make me feel bad or like I'm lying about what I'm eating when you don't have the answer and don't want to investigate it yourself. .The first year following I ate 800 calories a day because I was gaining weight so fast. ( I shoot for 800, thinking I'll misjudge and eat 1000) I easily do 10,000 steps a day except for recent foot surgery. I think there should be an independent investigation regarding the weight gain after stopping topiramate.
LDLuv
13 Aug 2022
I got off of topamax about 7 weeks ago after being on it for 6 months and losing 20 lbs. The first month was fine and I stayed the same weight.
However, in the last three weeks, I’ve gained almost 10 pounds and have had an increased, almost voracious appetite, which I’ve never had before. I don’t know what to do to keep the weight off but it’s coming back rapidly.
Minervacullen
14 June 2020
I was taking it for migraines for a few years. I stopped almost a year ago because I just couldn’t deal with the brain fog, tingling in hands and feet, and slurred speech any longer. I’ve gained 30 pounds since. I’m in a calorie deficit per my Fitbit, I do heavy weightlifting multiple times per week, and I’m a busy mom. It’s completely frustrating and I honestly wish I’d never had taken it.
rsalt26
14 June 2020
That’s so frustrating, Minerva. I sympathize with the struggle! I’ve also upped my exercise and no change in weight. Have any of you been able to get guidance from your doctor or neurologist regarding this?
Minervacullen
14 June 2020
I just keep getting told that I must be eating more than I’m burning or that I should try fasting. Very frustrating.
Minervacullen
14 June 2020
I just keep getting told that I must be eating more than I’m burning or that I should try fasting. Very frustrating.
Grace009
29 May 2020
I saw the last post about a 27 year-old who is healthy and active and gaining weight getting off Topamax. I’m having the same issue! I slowly got off of mine (29 and been on it for 5 years) and have been 5 days off of Topamax completely. I have already gained 7 pounds. I eat healthy and exercise 5-6 days a week. I’m not sure what else to do.
Has anyone noticed the weight gain stops and your able to get the weight off again?
rsalt26
6 April 2020
I'm 27 years old (F), and I was on Topamax/Topiramate for migraines for 7 years (starting at 18) and stopped this January. It was starting to make me feel generally weak and tired and I just didn't want it to be on it my whole life. I've actually had LESS migraines now that I'm off of it. But, I went from 145 pounds to 155 in three-four months.
I exercise 5x a week and eat vegetarian/Mediterranean diet and always had a consistent weight. The consistency probably an effect of the Topamax. I'm hoping the gradual gain stops because I don't know how to increase weight-loss efforts in addition to what I already do!
Curious to hear others' experiences.
jenlrogers99
31 March 2020
I have struggled with bulimic tendencies for 20 years. I was on TM for 3 years from 2015 to 2018. I am 5'6" and initially went from 136 to 130 in 3 weeks. It felt good to not obsess about how many calories I was eating every day. I felt normal for once - like I could easily manage myself.
I went off of it because I was afraid of the side effects I learnt of later. I don't think the FDA fully knows how it works, and it's caused me to permanently have issues spelling. I kind of spell some words backwards now. It's odd. Anyway, since stopping three months ago, I went from 136 to 145. Yes, I have been over eating because I hate my job, BUT I know that my metabolism has slowed being off the drug. TM quickens your metabolism. I am kind of freaking out now that I am heavier, but I don't know if I will go back on it. Am I going to be on it forever then?
I also wonder about its affect on skin. I feel wrinklier now, but I have also been very stressed.
Feel free to write back.
Msshoregirl
7 Jan 2019
It worked great for a while. Eventually it stops working so I went off it to get rid of the side effects, brain fog, tingling in my feet and arms. I gained weight back like gangbusters. I had the lap band 10 yrs ago and now it is not it is not even there. That is why I started Topamax/vyvanse combo
hxp7
7 Jan 2019
If you don't mind my asking, when you say it stopped working do you mean you stopped losing weight or it stopped curbing cravings/hunger? Did you gain weight back while you were still taking it? Also, did you stop both the Topamax and Vyvanse at the same time?
hilarytx
2 Nov 2018
I took Topamax for 15 years. I got off it one year ago. I took it for migraines. Since I stopped taking it I have steadily gained 25 pounds over the last year. When I stopped taking it, I was 5'6" and 125 pounds. I am now 150 pounds. Before taking Topamax I probably weighed about 135 or so. I have never weighed this much in my life. I had to buy an entire new wardrobe because none of my clothes fit. Everything I have read says that you will gain weight after stopping it, but then you will go back to your normal weight after 2 to 3 months. This was not my experience at all. I did lose quite a bit of weight in the beginning. I remember i got down to about 118 pounds. But that slowly increased to about 125 over the years, which I kept pretty stable. It was very difficult tapering off. I experienced difficulty sleeping, hunger, moodiness, constipation, and at times I felt like I was going crazy. I had a lot of anxiety and several panic attacks.
Luckily, after one year, those symptoms have subsided. But I can't lose any of this weight and it is extremely frustrating. I hope your experience is better than mine has been.
hxp7
2 Nov 2018
Hi Hilary—I’m so sorry to hear that. Believe me, I know how tough it is to go up and down in weight. I realize it’s a little hypocritical to talk about body acceptance while griping about weight anxieties, but I can honestly recommend trying to accept your body as it is now as a first step. You don’t even have to “love” it, we all know how hard that is when you don’t even recognize yourself. But simply starting with trying to accept where you’re at rather than fight it can make a world of difference in your mental and physical health—and it doesn’t mean giving up on wanting to change things; in fact, once you accept your circumstances, they become easier to change. That might be too New Age-y for you; I’m honestly still struggling with it, but it’s better than feeling stuck waiting to lose weight before you can get back to living your life.
I posted a longer reply to SoulfulENFP about my current situation so rather than repost it here I’ll just refer you if you feel like reading. As far as what they say about returning to your “normal weight,” my issue is that I don’t even know what that is. The weight I was at when I started these meds was the highest I’ve been in a while, definitely higher than my usual “set point,” and anyway I’m trying to slowly lower my set point by normalizing my eating habits after years of yo-yo dieting. So I have no idea what’s going to happen to my body when I stop taking this medication (and the others I’m on), especially if I stay on it for a while. I could reasonably lose a significant amount of weight over time since I’m still in the overweight range. My eating habits are radically different than they were when I started the medications, not because of the appetite loss but because of quitting the diet/binge cycle, so I won’t be “returning to my old lifestyle,” but I know my metabolism will slow down and my appetite will increase when I stop the Topamax. And now that I eat intuitively, I’m not going to be starting any new diets to try to counteract whatever cravings or weight gain come on. I want to relax and enjoy my life and health now that I’m repairing my relationship with food and (way more slowly) my body, but I’m just afraid of the day I go off the meds and wait to see whether I gain back 15 pounds or 60.
SoulfulENFP
7 Sep 2017
I used to rep this drug so I will try to give you what I feel is my most honest feedback. I also strongly believe in this drug because I have taken it off and on for years because it is the only drug that gives me any hope and reducing my migraines. (Haven't tried Botox yet :) ) I will say most of the generics don't even compare to the brand but sadly I can't afford my beloved brand anymore. Whatever you decide, listen to me here and go to an independent small pharmacy b/c though it sounds crazy, they will be the place that saves you on topiramate. They might not have the $4 scrips to get you through the door but you'll find topiramate for less than $20 instead of $100!!! Or even $300 generic which a national drugstore chain wanted (shame on them!!)
Ok... so to finally answer your question... (I warn you all in advance I am an ENFP... lol... :)... I am not a Dr so this is not medical advice & Do not take as such but I could see how topiramate could help someone off- label as an added aid in their efforts to re- establish a healthy lifestyle and gain their life back... what I mean by that is ... Topamax isn't going to keep the weight off of you after you stop taking it... or at least that's been my experience... but I am fortunate enough to have a healthy BMI to begin with and I eat pretty healthy and I come off Topamax sometimes because I can get into an unhealthy BMI situation if I don't. I have lost down to 102lbs at 5'7 even eating cheeseburgers and the like in my early 30s so I guess it's everyone's metabolism..I don't think I would have that to worry about now because I drink too many sodas... and am far too stressed... The REAL Topamax made every soda taste like crap. I recall having to do Dr lunches and craving tea or water... it's a beautiful thing to crave water. I WISH I could find a generic that made ALL soda repulsive.
It will take away your appetite so you'll need to remind yourself to eat. It makes me really tired so I have to find motivation to work out and anything else. There are some side effects that may not be worth it to you... they aren't always worth it to me but I just can't handle the headaches.
The key is listening to your Dr with the titration and then working with your therapist to build your plan of attack with cognitive therapy and a nutritionist and whatever so you WIN over your eating disorder and you realize you'll never need Topamax again... that YOU are PERFECT and BEAUTIFUL just as you are. I wish you well on your journey whatever you decide. Keep us posted. Much love and light.
hxp7
2 Nov 2018
Hi, thank you so much for your reply. Sorry for not responding when you posted; I haven’t been checking this account. So it’s likely you won’t see this but better late than never. I’ve been taking the topiramate (generic) along with Wellbutrin + naltrexone since I posted (all generics). Since I have a history of weight yo-yoing I was wary of going on medicines that were pretty much guaranteed to make my weight go down because I know how easy it is for weight to come back on when you lose it in an unsustainable way. But it was the right decision for me at the time, and the medcines have really helped me get my health back on track. I’ve been recovering from my eating disorder from years of work and after enrolling in a particularly helpful program, so while the drugs certainly dull my appetite, I don’t believe they are a cure for the psychological and physical causes of binge eating disorder by any means.
I definitely continued to binge after I started them and only really started changing my habits through counseling and intuitive eating.
All that said—as expected, I’ve lost weight over the past year, partly through normalizing my eating habits and partly, I’m sure, because of the drugs. Lately I’ve become worried because my appetite has really gone down to the point where I am under eating. Part of my recovery has been getting in touch with my body’s internal hunger cues, but I’m concerned that the medications have given me a warped sense of what those are. At the same time, I feel that they are still serving me and there is no logical reason to force myself to stop taking something that is improving my life, especially at this delicate early stage of my recovery, just because I’m worried about the potential consequences if and when I stop taking them.
I know that the changes I’m going through are greater than the medications alone, and if I stop taking them I won’t lose everything I’ve learned and revert back to bingeing and restricting because of the hormonal changes withdrawal will likely bring on. But I’m afraid that whatever weight I lose while taking this medication, no matter how sustainably I try to lose it (i.e. without dieting or adopting any changes I don’t plan to maintain) or how healthy my lifestyle is without the medicines, I will as a rule gain back and then some.
Related topics
topamax, bulimia, weight loss (obesity/overweight), binge eating disorder, weight, disorder
Further information
- Topamax uses and safety info
- Topamax prescribing info & package insert (for Health Professionals)
- Side effects of Topamax (detailed)
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