How many lost weight on Topomax?

Discussion in 'Fibromyalgia Main Forum' started by lil_angel1198, Mar 16, 2007.

  1. lil_angel1198

    lil_angel1198 New Member

    My doctor is starting me on it for migraines and also to lose weight. I just wondered how much weight I could expect to lose and how fast?

    I am way overweight and really need to drop as much as I can, hopefully rather quickly....

  2. StephieBee

    StephieBee New Member

    Ive lost weight and I havent even tried to.

    I was on it years ago when it was first approved for migraines and I lost around 10 lbs. then but had to go off of it because i got new insurance that wouldnt cover it.

    This time around ive been on it for about 2 months and Ive lost 15 lbs. but I also have the lap band so Im probably losing faster anyways. The first time I didnt have it tho.

    [This Message was Edited on 03/16/2007]
  3. lil_angel1198

    lil_angel1198 New Member

    Thanks so much for letting me know...I hope it will work for me too.
  4. munch1958

    munch1958 Member

    I took it for almost 3 months. My food tasted awful but I still didn't lose weight. If you want to kick coffee or soda Topamax is the way to do it. Everything tasted lousy. When I got the stupids and started sleeping 18 out of 24 hours I quit taking it. There were no changes in my migraines.
  5. med, a positive, & welcome "side effect"....but, always keep in mind, that it IS a side effect of a medication, just as any others are..

    I was I believe- around 146 when I was put on this med yrs ago, for a terrible facial nerve condition, (TN)...

    Very gradual weight loss occurred first, in about 15-16 did a major increase in my agitation, hair loss, increased liver & pancreas enzymes, WORSE headaches, which I have daily, but they became more painful...I had BURNING FEET gradually onset, also, and numb hands, face, etc.. the pain in my feet literally drove me waxed & waned at first, so of course, drs did nothing about it, and when it became daily- still, nothing. I think they assumed it was FMS/MS related..

    Then* very very suddenly, about 16 months into being on Topamax, I completely, 100% lost my appetite..and i mean if food was even MENTIONED, or I smelled it..I became so nauseated, I was completely incapacitated..for HOURS sometimes. I would burst into tears when my husband would try to get me to eat anything, because I JUST COULDN'T EVEN CONSIDER IT!

    I was forcing* myself to eat, about twice a week. 4 saltine crackers, on say tuesday...then by saturday or sunday, one rice cake- and it would take ALL DAY to eat the entire rice cake.

    I was losing hair by the clumps practically, dx'd with 'male pattern baldness' told thyroid med COULD help, etc..

    When I dropped from 127 lbs to 113 lbs within 10 wks or so, of having had 2 extremely distressing, and for my family, scary bouts of total 'drug-induced anorexia' basically..

    I started seeing a new doctor, for pain management...she had seen me just months before as, she's also an anesthesiologist..

    Her first discussion with me, was not of my pain...but, my sickly, sunken in, malnourished appearance..right down to how unhealthy my hair looked, and how thin i'd gotten, etc.

    Protein shakes- nope. I could not even think of them..

    She was going to prescribe a prescription appetite stimulant, but, in writing out 6 rx's, she forgot THAT ONE.. I stayed at best, 123lbs..that was usually due to a steroid taper..then i'd slide back down to 116-117...

    Anyways, there's soo much more to this, but, suffice it to say...I weaned myself off the Topamax, when I'd read about others & hair loss, anger, aggressive behavior, loss of appetite(tooootallyy different than 'weight loss' mind you, THIS was HEL*. A whole new suffering.)

    After quitting, I quickly gained 12+ lbs, VERY QUICKLY..then went right onto a 30day taper of steroids again- UGHHH!! gained even more. I was again up to 148 lbs..

    Then I dropped to 138, and now, since surgery a little over 2 wks ago, I'm down to 129,

    The most important things are--I do seem less aggressive, (no more steroid tapers, also, though), I still lose a LOT of hair, and there are many other auto-immune, medication, radiation(possibly) causes...thyroid, PCOS, Endometriosis, etc etc etc

    But, my feet have not single day, since off the Topamax..I'm sooo sad to think back to how miserable I was, day after day, and how morbid my daily thoughts were, from the horrendous burning, and numb/tingly hands constantly, etc.. and that I'd never known it was that d**ned Topamax..and suffered sooo much longer than necessary...

    I only quit, due to like I'd mentioned, reading other peoples* stories about Topamax..not drug co. inserts, or websites..

    I was put on Lyrica at the pain clinic, that also lead to confusion, it would help my appetite, at times, and it would at first* dull the pain in my feet...but, I was also started on MSContin, MSIR, etc along with those..they did wear off, and I had terrible problems on the 300mgs of I quit it also, and was terrified the pain in my feet, the numbness, etc would come never ever has like it was on Topamax, (also called "dopamax, and "stupamax" by users who had severe cognitive side effects. I had that just mildly in the beginning, but, I already have terrible cognitive trouble.)

    Also, I want to say, that, IN MY OPINION...a doctor who prescribes it FOR weight loss...needs his license(among other things) YANKED!

    There are many areas on this internet, that will tell you, it was studied as a diet drug, and that the trials were promptly halted, due to the reports of aggressive behavior from the women in the study.

    Also, anyone on this med, should have already been told this, but especially if you OR a family member have a history of kidney stones, you need to be very careful, and drink lots of water...the risk, of course, is increased at each dose..

    I wish all of you luck on the med, hope it helps, and I hope you do not get ill side effects...just be aware of SOME of the things that CAN be caused by it, and are NOT mentioned at all.

    I was warned about kidney stones, and food or carbonated drinks, "they will taste like crap to you" was my neurologists words. that was it. and that the max dose for migraines, and trigeminal neuralgia, really, are no more than 600mgs, (the most severe migraine cases), and in seizure patients, not over 800mgs, and if it does not work, or fully work, then it's time to try combination therapy, or stop it & try something else..

    Good luck all, be careful, as always, with any meds/supplements..

  6. StephieBee

    StephieBee New Member

    Im not sure if my metabolism got faster...but i can say that my appetite did decrease significantly.

    Yes, I did get the textbook change of taste with the carbonated beverages (I cannot stand them anymore), but I really didnt drink them to begin with. I also lost taste for other foods in general but not too many. No big deal to me.

    Like I said, I have the lap band so I am losing weight anyways...but I was on Topamax before I got it and lost weight before. But with the band I find that Im losing faster since ive started the Topamax. So I would have reason to beleive that it does something weird like speed up your metabolism. Ive even noticed that I dont crave carbs as much. Not sure if this really has anything to do with the topamax though..maybe?!

    [This Message was Edited on 03/16/2007]
  7. froggyfog

    froggyfog New Member

    Thanks for your honest reply on Topomax.

    I am going to have my husband monitor my behavior for crankiness/aggressiness(sp).

    I'm currently taking 25mg two times a day for a week then I wil be on 100 mg a day (50mg in the am and 50 mg in the pm) so maybe I'll be OK.

    I have weaned myself off cokes about 3 weeks ago but took a drink of one today and I couldn't stand it...I thought it was because I had weaned myself off, but I bet it is because of the med...because I had a bad burning taste.

    I am about 60 lbs overweight so it will not hurt me to lose some weight. I have gain all this weight ever since I got this stupid disease.

    Thanks for letting me know all this info. I'm going to make sure I drink lots more water...definitely don't want kidney stones.

    Thanks again LilAngel for asking this question!

  8. tonakay

    tonakay New Member

    I took 100mg of it from April thru December of last year. It did help my migraines and I did lose weight which I didn't need to do. I weaned myself off of it in December because my hair was falling out like crazy all the time I was on it and it was just getting worse! My hair is thin to begin with so I decided enough was enough.

    Good luck to all,
  9. lil_angel1198

    lil_angel1198 New Member

    I have Hypothyroid, Tachycardia, FM. I'm on several medicines for all of that, so he said I am limited on what he can give me for headaches and help lose weight.

    I am (according to the charts) about 80-90 lbs over weight so I can definitely afford to lose a lot. I am hoping I will lose quite a bit...even 30 or 40 lbs would be wonderful. At this point, I will lose whatever I can.

    My son was on Topomax for a couple years because he is bipolar. It helped him a lot, and now he's been off all his meds for a year. He's doing great.
    I do know it's very expensive so I'm not sure how we'll afford it, but I am going to try!! I just can't stand to be so heavy any longer.
  10. StephieBee

    StephieBee New Member

    you dont have any insurance at all??

    I only have insurance thru medicare and they cover everything but $5 of it.
  11. lil_angel1198

    lil_angel1198 New Member

    prepay plan. We have to pay for the meds, then they reimburse us 80% of the cost.
  12. You, as well as everyone, are very welcome, wow! I'm *always* amazed at the length of my posts every single I look back at them...but,

    I took that much time, to put in so much detail of MY story, because, I only want the best, and certainly, absolutely, would not ever want, even **worsening** symptoms & health problems, for anyone here

    ...and we all know, how it feels to be told little to nothing, about the medication we've been put on, only to gradually develop issues, leaving US to try and figure out:

    Is it the disease? My med? A combination of meds? A reaction, new allergy??? Something I ate? An OTC med I took with my reg meds....Am I just progressing??? Do I, or do I NOT call the doctor (fear of being treated like some jerk anyways, if u do, normally...and usually not told the truth- most of the time, the doctors themselves* don't KNOW THE TRUTH!)

    I would absolutely never, ever want anyone to go through what I've been through (and others too), on some meds.. as I'd said, I absolutely went through hell! and became SOOO angry, (ROAD RAGE, STORE RAGE, STAFF at any* office, store, etc rage...other shoppers, drivers, staring teenagers!! (walked with a quad cane) I just absolutely SNAPPED all the time... I felt SOOO alone, and absolutely-bottomless-pit-hopelessness..with the severity of the burning feet.. and for 2 yrs! I came gradually, and small areas that flared up, 'randomly', and then 'sometimes', and the 'a lot' then 'almost always' and THEN 24/7.

    The tingling/numb hands, caused me to burn myself many times, also my feet, in the tub, many many times.. I cannot* tell you, the 'home remedies' I went through, for my feet, to try to stop the pain... truly, truly hopelessness & isolation....bordering insanity.

    And it's sad to say, it's not even close to the first time i've been in that ugly place (mentally, caused by physical issues...)

    I'm thankful, I just saw my neuro 3 months ago, and after telling him the burning feet, numb hands, numb patches, or entire facial numbness (yet, still nerve pain! go figure), etc left when topamax went bye-bye... then also telling him- which I forgot to mention... that

    One night, months ago, out of desperation- as I'm only taking EIGHT mgs, of Gabitril, the same da**ed dose I STARTED ON (well, week 2!)...I tried 100mgs of Topamax...


    I never in my life experienced such.. numbness, heaviness, tingling, anxiety, pain...etc ALL AT ONCE from below the knees, down... and also went numb from my FOREARMS to fingertips, and I was sooooo tired...but, absolutely UNABLE to lay in bed, due to the pain, irritation, burning, heaviness, etc... (READ THIS! ROSIE O'!)

    My neuro finally, definitely agreed, I can never take that again..

    I would want everyone here, who is on the med, just to KNOW, the odd, NOT LISTED things, that COULD happen to you, while on it..

    Also ***if u are unfamiliar with anticonvulsant medications*** please read- almost all will advise you that it is best to just not drink grapefruit juice, some say before or after taking med for cpl hrs..

    STEPHIEBEE--Please, if you haven't, just scan through my first post...on how I'd said there are many websites out, or were, when I started Topamax, about how it HAD held trials, to see if it might be sold/used off label as a weight loss drug, but, all trials were stopped, due to side effects, I know one, was aggressive behavior..but, there were others as well (I'd imagine, like most anti-convulsants, any "therapeutic dose' is usually what dose is enough, or more than enough, to start raising liver enzymes, changing personality, effect appetite, sleeping, etc. *sigh*..

    I do wish you the best, on it, though.. and, just really monitor symptoms, especially as you stay on it, or the dosage increases..the articles, I mentioned, about weight loss trials, I thought, just might interest you, help you gain more info, as it's been yrs since I read them... and just something I wanted to mention for some of you.

    (((((Hugs to all))))

    & best wishes..

  13. that's the whole reason I'd mentioned the websites I've seen on the net, about Topamax having been tried, for a period, as a weight loss drug, the company wanted to be able to actually promote it as that, to doctors, as another off label use.. As I stated, the entire trials were stopped, due to side effects.. but..

    I thought maybe since there is some curiosity as to whether or not it may change metabolism, I figure, maybe checking "Topamax, weight loss" or something of that nature, "weight loss trials" etc.. might give some perspective or answers as to how it actually did cause the weight loss in some people..

    I didn't mean for it to sound like a huge "HEY WARNING, PAY ATTENTION" type of thing, I just remembered reading article after article on it, actually, because a cousin of mine, with severe, uncontrolled seizures...was on Topamax, before *I* was put on it.. and was of course, on 800mgs, plus other medications, and at the time, being treated for Parkinson's disease, which he was just told this yr, he does not have (they'd said, when he was 28- "we'll know in about 5 yrs" as they just could not rule it out, even as rare as it is at 28 for that disease--Michael J Fox.. a great example though..)

    Anyways, I'd read then, because I was concerned.. he is extremely thin, and, when he came here to visit, he'd lost over 35 lbs... it was horrible.. and then, he'd had explosive anger episodes, toward his wife, who- left him, for a period of time.. (of course..I DID take into consideration- 1. his other medications, 2. his illnesses, 3. the fact that he & my uncle are the MAJOR believers, even now, I think... that there IS no 'illness' other than a weak mind... and 4. also that his seizures themselves, could often cause aggressive behavior & hatefulness..though, usually before/after one, but, he's over 3hrs away, so I have no idea how terribly frequent they are on him.

    Anyways, after he'd gotten extremely irrationally, angry at his own dad...for no real reason, & scared everyone, I researched the med & side effects vigorously...and again, once I was put on it, and found out my dosage (highest was 300mgs)...

    Rambling on here...that's my thing, it's what I do.. anyhow, I just thought maybe if those articles etc are still around somewhere, you or others curious, might be able to find out if it does affect metabolism, or something in the brain that shuts off, or really slows/decreases appetite, etc.. IF you were truly interested in the mechanism, etc, lol- or just bored, :)

    Again, good luck to you all, I hope it helps headaches, weight problems, or anything else you might need it for, and will PRAY that you do NOT suffer some of the strange, ill effects of the drug..

    Like I said, my appetite loss was so bad, a doctor kind of hurt my feelings, by ordering 10 labs..on the sheet, he simply put "ANOREXIA"...i was thinking, the lab will see that, all my doctors, insurance company, etc.!!! I wasn't *deliberately* 'anorexic' as I said, I was in HELL, i called it, *DRUG-INDUCED anorexia!* appetite loss would have sufficed for the lab order, I would think.

    Anyhow, to all of you on it, also, MAKE SURE, that your doctor checks your blood levels/liver enzymes, etc on the med. Mine did a decent job, of staying on that..for a while, (my fault, tooo sick to even be driven to his office, for a LONGGG time..) and by the time other drs ordered bloodwork, due to the severity of my not being able to eat (I felt full, 24/7 for weeks.. and as I said..if food was MENTIONED, or smelled* I would get sooo sick, I would gag, even vomit stomach acid up...) my liver enzymes were 'elevated' and pancreas enzymes were "high"- yet no one even batted an eye.. (and those numbers, and that info, would have been VERY important to my gastro)..

    Anyways. I hope that you all achieve pain relief, desired* weight loss, but NOT the severe* terrible, nauseating reaction I had developed over time, because, that truly was, extremely depressing, debilitating, & left me bedridden (I still am, 90% of the time) but, I was so dehydrated, and nauseated so much of the time...definitely not* the way I'd want to lose weight. I had done the same thing, only in 6wks of effexor, 24+ lbs.. stayed on it another 6, against my will, literally, then finally able to wean off, and, I've been on heart med ever since, for palpitations, and tachycardia! UGH!

    So, best of luck, best wishes,

  14. froggyfog

    froggyfog New Member

    How long have you been on the med?

    I have been on mine for about 4 days now, the only bothersome side effect I have noticed is dizziness which I am wondering if it will go away. I am going to call the doctor on Monday to ask him about it.

    I have noticed a difference in taste but nothing too bad. Cola's taste bad but I had been weaning myself off of them anyway since they are not good for me.

    Do you have any side effects?

    I've been alittle more tired but don't know if it is related to the medicine or not.

    I hope it helps your headaches as well as your weight goals. Get in touch with me so we can compare notes.

    Your Friend

  15. becc

    becc New Member

    Hi Laura,

    Just a quick note to (hopefully) ease your mind a bit. A diagnosis of anorexia simply means loss of appetite. If your doctor had written 'anorexia nervosa', it would have been referring to the psychiatric condition.

    Hopefully any other doctors, the insurance company etc would have recognised his diagnosis of 'anorexia' for what it really is - although anorexia nervosa is as maligned and poorly understood as ME & FM so I suppose it's hard to say...

  16. StephieBee

    StephieBee New Member

    Thank you for the concern but I just wanted to make it clear that at no point was Topamax ever given to me for weight loss. I was aware of this side effect, but it was not part of the treatment.

    The weight loss I talk about has only been a side effect that I experience as a result of my taking Topamax as migraine prevention. I have tried many other drugs with no success, but Topamax works great. I dont choose it purposly because of its weight loss or anything like that...nor do I up my dosages.

    I really do appreciate your concern and i thank you for warning us.

  17. no suprise for me, my wording isn't always ? right?

    That's exactly what I wanted to make clear that I wasn't insinuating, lil_angel, is the one who said *her* doc did prescribe it for migraines, "and also to lose weight" and said she just wondered how much weight she could expect to lose, and how fast..

    and like I said, It was my understanding, that some on this post were just curious if it somehow adjusted/affected metabolism, etc...

    was the reason I'd mentioned that there are sites, that talk about its trials as a diet drug, and that there might be information there, just for the curious, as to how it does indeed cause weight loss/appetite suppression or loss. Also, possibly, could help some know how much weight, or how fast they may lose weight, as well as, of course, learning on sites that have peoples own posts/messages, possibly finding out any side effects that may not be mentioned, or even known by doctors..

    I also didn't mean to sound as if I'd said any of YOU increased your med dosage, I meant, in time, should your DOCTOR need to or choose to increase the dosage, to help control migraines, neuropathy, seizures, bi-polar, etc, whatever else it may be needed or prescribed for..

    So, I hope that's all clear, and of course I didn't think anyone *requested* the med, to their doctor, especially for weight loss.. I know none of us would take something, totally off label, for weight loss... Heck, there are prescriptions FOR weight loss, etc.. so, I would never think that either.. I know everyone here's MAIN treatment, is either nerve pain, seizures, bipolar disorder, or Migraines.

    Have a great day,


  18. StephieBee

    StephieBee New Member

    Im sorry...Its probably that its just so late and Im trying to read so many words with this fibro brain of mine!

    I never took anything you said to offense whatsoever...I just want you to know that...nor did I mean anything I said to be "as a matter of fact" like.

    No worries...just a misunderstanding.
    Dont you love FibroFog!
  19. lil_angel1198

    lil_angel1198 New Member

    I haven't actually started taking it yet. I just got the prescription Friday, and don't currently have the money to go pick it up yet.

    But my son was on it for his Bipolar, and it helped him tremendously. So much, that he is off all medications now and handling his BP very well on his own.

    Laura, thanks for your warnings. Now I will know what to look for as far as side effects go. My son didn't experience anything bad when he was on it, and he did start losing weight, which he really needed to do.
    But, now I know what to watch for. So, it's good that you posted what happened to you.

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