Topamax-losing weight rapidly...

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  • RedneckMomma77
    RedneckMomma77 Posts: 85 Member
    I was on topamax for nearly a year for migraines. The only thing I lost on it was my hair, by the handfuls. I actually had to go have what was left cut off, because I didn't even have enough left to wear it up in a ponytail and it look like anything. When I went to have it cut my beautician wanted to know where the rest of my hair was, and I told her down the bath tub drain. Hair loss is one of the side effects, just not one that very many people have. For me, it was the side effect that broke the camel's back so to speak.
  • hilldiggity
    hilldiggity Posts: 166 Member
    glad i stumbled on to this thread. i take a host of medications for my bi polar disorder including seroquoel which supports weight gain.

    I didn't know this when the Doc put me on it and got curious when my pants stopped fitting and I was gaining all of this weight in my stomach, not all over my body as usual. As soon as learned it was the seroquoel I stopped taking it immediately. Now I'm having a hell of a time getting that weight OFF!
  • RamblinRose1962
    RamblinRose1962 Posts: 21 Member
    I was on topamax for nearly a year for migraines. The only thing I lost on it was my hair, by the handfuls. I actually had to go have what was left cut off, because I didn't even have enough left to wear it up in a ponytail and it look like anything. When I went to have it cut my beautician wanted to know where the rest of my hair was, and I told her down the bath tub drain. Hair loss is one of the side effects, just not one that very many people have. For me, it was the side effect that broke the camel's back so to speak.

    I have heard about hair loss as well. So sorry to hear that. How long ago was this and may I ask if your hair grew back "normally" when you went off the drug?
  • RamblinRose1962
    RamblinRose1962 Posts: 21 Member
    I was on Topamax for almost 5yrs, to control migraines. I will agree with everyone else that has advised of the HORRIBLE side effects. Food tasted different, numbness, STUPIDITY, loss for words. The list goes on and on. I switched doctors (because I moved) and my new doctor worked to get me off the horrible medication. I still get an occasionaly migraine, but all side effects are gone and I have my brain and taste buds back.

    My GP, who prescribed the drug, was of no help to me. I had to have a Gastro doctor point out the problem. I will be switching doctors ASAP! I am so glad to hear all side effects are gone for you! I keep worrying that they won't totally go away for me. How long after stopping the drug completely did you notice things go back to normal?
  • RamblinRose1962
    RamblinRose1962 Posts: 21 Member
    Can anyone here tell me how long it took to get this drug totally out of their system? I am still noticing some of the issues and have been off the drug for 2-3 weeks now.
  • chantalscott1
    chantalscott1 Posts: 25 Member
    When I was younger I ordered some from the internet to loose weight. Silly idea! It made me so dopey and I did loose weight but obviously I regained it all and more
  • jessicabryant5095
    jessicabryant5095 Posts: 1
    I've been taking topamax for almost 2 years now for seizures, and I had all the same side effects, the pins and needles, mood changes, everything. It was really tough on my relationship because I was always mad at him. But we stuck through it, and now I feel just fine, and I've lost about 75 pounds! I was previously on depakote, which had made me gain weight. So I thank my doctor and this drug! If you can just make it through the side effects, I think about 3 to 4 months or so, it lasted pretty long for me, and it took my about half a year to 7 months to actually start losing weight, and I wasn't even trying, I was just eating less. Not because food tastes funny, just because I'm not as hungry. Never in my life thought I'd be this thin and feeling great! ????✨
  • TheFitnessTutor
    TheFitnessTutor Posts: 356 Member
    If you're taking a pill to lose weight it's a malfunction of the body. Don't sound so excited. You only have three sources of calories. A pill that makes your body dump a third of those choices isn't good, this the common side effects. If you are bipolar, get that under control and learn how to eat to control weight and eat at a proper level of intake or else you're going to wreck what's left of your metabolism. The human genome has been programmed to fight against rapid weight loss. It hasn't forgotten over the millennium so it won't forget over the course of months or years. The question is how long are you on this medication for and what will you do to control your weight afterwards. Because I can tell you that your body will be ready to store fat ad nauseum when you come off of it.
  • TheFitnessTutor
    TheFitnessTutor Posts: 356 Member
    I've been taking topamax for almost 2 years now for seizures, and I had all the same side effects, the pins and needles, mood changes, everything. It was really tough on my relationship because I was always mad at him. But we stuck through it, and now I feel just fine, and I've lost about 75 pounds! I was previously on depakote, which had made me gain weight. So I thank my doctor and this drug! If you can just make it through the side effects, I think about 3 to 4 months or so, it lasted pretty long for me, and it took my about half a year to 7 months to actually start losing weight, and I wasn't even trying, I was just eating less. Not because food tastes funny, just because I'm not as hungry. Never in my life thought I'd be this thin and feeling great! ????✨

    Is this for epilepsy? If so have you and your doctor(s) looked into ketogenic dieting?
  • jen_zz
    jen_zz Posts: 1,011 Member
    For those who immediately denigrate "alternative medicine" please just move on...

    I used to suffer from migraines, not nearly as bad as some of you seem to, nor as badly as my mother who used to take a self-injection of her migraine meds to knock her out. I forget the med, but she did wake up without the migraine. However, my psychiatrist at the time also studied TCM (Traditional Chinese Medicine). Three, count them THREE, acupuncture treatments and my headaches were gone. 10-15 years later I still get the occasional baby-migraine but, as I am now IN China... treatment is readily available.

    I started as a skeptic... now I'm a skeptic with no migraines.

    "like"
  • jen_zz
    jen_zz Posts: 1,011 Member
    It has now been 9 days and I have lost 16 pounds......this is crazy!

    Are your caloric intake the same before and after taking Topamax?
  • smmorri
    smmorri Posts: 44 Member
    Are you having any other side effects?

    Topamax does commonly cause weight loss, but it is also not prescribed for bipolar disorder. It can be, but is off label. Are you sure that is what you are taking? If you don't mind my asking, are you type 1 or 2 bipolar? A mood stabilizer like lithium or valproate in combo with an antidepressant if necessary is usually standard of care. It worries me you taking topiramate (which is a seizure drug) and already having a reaction to it. Are you seeing a psychiatrist or is your primary care provider giving you that?

    Sorry for all the questions, but I would keep an eye out for any other reactions as well as your bipolar symptoms and make sure to tell your doc. Since topiramate is off label, it has not been extensively studied in bipolar disorder.

    My friends doctor has her on an anti seizure med (not sure which one) for depression. Also research into depression and bipolar treatment for my novel has shown that it's common practice to perscribe meds for their side effects.

    As a matter of fact, Topamax / Topiramate, is an anti seizure medication, that is commonly prescribed for other uses (off-label). I'm on topamax, and I have done a LOT of research on it. You can simply google the information, or ask your doctor.
  • sturrsturr
    sturrsturr Posts: 3
    I am also on Topamax. So far I have tried pretty much every diet out there and none of them were successful. I started out on 25 MG four months ago but didn't see any results. Despite my psychiatrist telling me otherwise, I read that it takes a higher dose to lose weight and raised it to 75 then 100 MG in April.

    I guess I've been quite lucky so far. The only side effects I've gotten were tingly hands and some weakness but nowhere as bad as what everyone describes. Oh yeah, and my mouth felt really sore for a few days last month but it went away.

    The weight loss has been quite slow but steady. I dropped 13 lbs, which was very much needed, and seem to fit into my shirts a lot better. My body is carrying around less weight. I still need to lose about 30 more lbs. Also, I consulted a specialist in my area and they said they usually put patients ON Topamax while exercising and following a strict diet plan. So if MDs are doing it then that must mean something, right?

    However, I do wonder what happens when I stop taking the medicine. Obviously I expect some of the weight to come back.
  • nishbaybe92
    nishbaybe92 Posts: 18 Member
    I was prescribed topamax for seizures and I lost 20 lbs within about a 4 month period...i was also relatively active over this time. normally the weight comes right back if you stop taking it though, so you have to be careful about that...just started up on it again for migraines. lost 2 lbs in 3 days...
  • nishbaybe92
    nishbaybe92 Posts: 18 Member
    Also, for those who were losing hair, did you ask your doctor to lower your dose? At one point I actually had my NAILS peeling off (no it didnt hurt or anything) from it...my doctor had bumped my dosage up to about 250mg which was way way way too high....this drug has a lot of really WACKY side affects....honestly I do not recommend it for people who are young and probably wouldnt recommend it for long term use...but if people need a serious change in their lives and have little option then I can see why some (myself included) might be willing to take some of that risk. In hindsight i started on mine when I was 14...I wound up being about 90 lbs and extremely malnourished at one point...to the point my mom was screaming at me accusing me of being anorexic (i wasnt). but I was too young to know better about trying to keep my diet balanced. I wish you all the best and whatever you all decide, I wish you all success on your weight and health journies!
  • Loveisaiah
    Loveisaiah Posts: 51
    I just started topomax too! I know you posted this awhile ago but do you still like it? Did it just decrease you appetite?
  • Sieden76
    Sieden76 Posts: 127 Member
    Topamax has now been able to be prescribed off label for weight loss because it does cause weight loss for most people. That wasn't the original intention but more of a "bug" or defect when they created the medication.

    It can also cause you to have "the stupids" when you are at the wrong dose even if that dose is only off by 25 mg so watch out for that. I have personal experience with this medication. I would forget common words and one time even got lost when driving home from work. My doctor increased my dose by 25 mg and the symptoms went away.
  • laele75
    laele75 Posts: 283 Member
    Yeah, I lost weight on Stupomax too. Because I kept forgetting to eat. I also think it had to do with the amount of brain matter I was losing. Seriously, unless it really works for you, Topamax is not worth the side effects.
  • MommaChocoLatte
    MommaChocoLatte Posts: 389 Member
    I am currently taking Topamax for my seizures. I have lost weight on it but not terribly rapidly. I did (do) have the stupidity side effect each time I have to increase my dosage, I am actually going thru that right now as my neuro just increased my dosage a few days ago but it hasnt been too bad this time around but it only lasts a few wks and my appetite has not decreased too much this time either. I am currently taking 150 mg twice a day. It has also helped with my depression and migraines.
  • LoriLou67
    LoriLou67 Posts: 173 Member
    Speaking from personal experience....my GP prescribed this for me about 5 weeks ago. I do get migraines about 6x a year, but she was hoping for the weight loss side effect.

    I did take it, but stopped 3 days ago. I did experience tingling and the fishing for words issue. But more alarming was the lack of interest in food, and then it seemed to move to lack of interest in things in general. Extreme fatigue, funky hot flashes throughout the day. I did not taper off it, and probably should have, as Monday I was a bit of an emotional basket case.

    I just want folks to be aware of the side effects, and to be mindful of them as time goes on, particularly if it has been prescribed to you for migraine treatment or something other than seizure control. Mine showed up over the course of the 5 weeks. I did continue to monitor my diet (even though I was not interested in eating) and continued with my exercise, though that was a struggle as well.

    I did not ask for this, my GP is puzzled by me and thought this the answer. It was not.
  • cathymcgarrity
    cathymcgarrity Posts: 1
    What dosage are you taking?
  • LoriLou67
    LoriLou67 Posts: 173 Member
    Is that to me? I cannot remember what it was. Another physician I have seen recently just shook her head, and said it is an awfully powerful medication to be used for off-label reasons.
  • liquidleaves
    liquidleaves Posts: 22
    Wow reading all these posts are really scary. My neuro just prescribed me this drug at 25 mg. I told her I wasn't into taking pills, but I have complex migraine problems so she said this would help. Now after reading this I am terrified of even taking it. The script is still sitting at the pharmacy. Now I don't know what to do...
  • Shaunapie32
    Shaunapie32 Posts: 1
    Well I was prescribed Topamax on Monday and today I took my first pill.. :/ I read all of the things everyone had to say with there experience and I'm terrified to say the least. :embarassed: I'm on a 100 mg (50mg twice a day) so I'm really going to pay attention to my body for ANY reaction I may have. As soon as I see something or feel something I don't like I'm taking Thumper back to my doctor or I'll find a way to dispose of them properly.
  • BrittaniNSt
    BrittaniNSt Posts: 9
    I was taking topamax for migraines. It didn't get rid of my headaches, or any weight. I stopped taking it after a few months. I had a strange side effect where I couldn't taste the carbonation in soda. It was the weirdest thing!! Everything tasted like cold flat soda.
  • BrittaniNSt
    BrittaniNSt Posts: 9
    I started taking a beta blocker a couple months ago. I still get the occasional migraine, but nothing like before. Have you tried those before? (propranolol is the one that I am on)
  • sunshine5512
    sunshine5512 Posts: 39 Member
    I have been on 100mg of Topamax for several years now. At least 4. In the very beginning, I had all the symptoms mentioned. Tingling, dizzy, forgetfulness. I kept on it because it was helping my migraines. I did loose weight, about 20 lbs and have successfully kept that weight off. I came off of it once because I had terrible pressure behind my eyes that I could only attribute to the drug. I quit cold turkey and I dont remember having any real bad side effects. About 4 months off of it, I decided to give it another try and got back up to 100mg. I have been on it again for a couple years straight and I just took myself off of it again about 1 1/2 -2 weeks ago. I again was having horrible pressure, and extremely dry mouth (and dry in other areas too!) My eyes feel like they are going to pop any minute still. I keep thinking that I am having sinus headaches but they are not going away. I have had almost a slight blur in my right eye when I look up but Im not sure if that is caused by the side effects. I am not nor have I ever been real anxious, but lately I find it difficult to talk to people or look them in the eye. Thats strange for me because I talk to everyone.
    I dont want to be taking a drug every day and I wish I never got back on these pills. I just want to feel normal again.
  • jayrudq
    jayrudq Posts: 475 Member
    Topomax is frequently prescribed by psychiatrists for a host of reasons - including weight loss Many of the psychotropic medications folks have to use cause rapid weight gain and metabolic resistance. Sadly folks gain lots of weight rapidly and many I know have even developed type II diabetes.

    I think the risk profile for side effects is very individual and it sounds as if you have migraines, you wouldn't want to take this medication. Many find it tolerable and effective.
  • appygirl84
    appygirl84 Posts: 105 Member
    I wouldn't say common practice. It's always a risk prescribing something for offlabel use. I don't do it. I also do not work in psychiatry, so perhaps it is more common there. If the OP is under the care of a psychiatrist, then fine. I would be worried about a primary care provider attempting to treat something like bipolar disorder especially with using off label meds.

    I know palliative medicine has more leeway with using off label meds, so perhaps psych does too, if that is what your research suggests. Personally, I'm not willing to take the risk.

    I think it is fairly common to use anti sezuire drugs for bipolar disorder.
  • Alliwan
    Alliwan Posts: 1,245 Member
    I wouldn't say common practice. It's always a risk prescribing something for offlabel use. I don't do it. I also do not work in psychiatry, so perhaps it is more common there. If the OP is under the care of a psychiatrist, then fine. I would be worried about a primary care provider attempting to treat something like bipolar disorder especially with using off label meds.

    I know palliative medicine has more leeway with using off label meds, so perhaps psych does too, if that is what your research suggests. Personally, I'm not willing to take the risk.

    They put me on lamictal for bipolar disorder... I guess anti-seizure drugs are popular when medicating people that other treatments haven't worked for.

    anti-seizure drugs are popular when medicating people for bipolar period. Lithium is extremely damaging to you kidneys and depakote can cause massive weight gain, like 10-15lbs a week. So triliptal, lamictal, tegrotol, and topomax are all used in bipolar, quite well most of the time. Bipolars rarely take only one med, some take geodon or seroquel or rispiridal or trazadone for sleep or other issues they might have, all of those are often prescribed off label for bipolar symptoms.

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