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

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  • zombiesalad
    zombiesalad Posts: 123 Member
    I've been on a few different anti convulsant medications, including Topamax. I think it was Topamax that made my weight drop down to 108 very, very quickly. I had to stop taking it because I was at the point of gasping for air during any physical exertion. Couldn't even do house chores.

    I'm on Zonegran now and it works quite well for me. It does make my weight drop if my other meds are lower, but they seem to balance each other out.
  • miranda_mom
    miranda_mom Posts: 873 Member
    I was on Topomax for migraines and lost weight as well, although for me it really suppressed appetite so I was eating more when i went off. (I had to go off due to trying to get pregnant). My neurologist told me I would gain weight when I went off so to not even stress about it. I was able to get back on track soon. Good luck!
  • WendyL525
    WendyL525 Posts: 14 Member
    I was on Topomax for migraines and lost weight as well, although for me it really suppressed appetite so I was eating more when i went off. (I had to go off due to trying to get pregnant). My neurologist told me I would gain weight when I went off so to not even stress about it. I was able to get back on track soon. Good luck!

    I went off for the exact reason :) Thanks for saying the part abut your doctor telling you that you may gain, cuz i had no idea and panicked since ive been losing steadily for a year, then all of a sudden, 5lbs went on real quick and i didnt really do anything different. I think im good tho - im saying at the 5lb mark....and REALLY keeping myself in check now, knowing that it was the Topamax that kinda kept the weight from coming back on.


    Thanks for the response :)
  • WendyL525
    WendyL525 Posts: 14 Member
    Thank you all for all the responses! It makes me feel so much better to know I'm not alone and that so many of you are going/have gone through similar issues with this.

    Thank you all for the support!!

    Wendy

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  • WendyL525
    WendyL525 Posts: 14 Member
    . 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!

    That's great!!!! So happy to hear that you have started regrowth!!!! Honestly, one of the most depressing things....watching my hair fall out and get thinner and thinner....ugh!!!
    I started taking prenatal vitamins, along with a Biotin supplement i got from Whole Foods. I definitely can tell its getting longer in the back, but its hard to tell entirely whats going on because I have the extensions in there right now.
    Thank you for sharing!! :)

    xo
  • talaysia3
    talaysia3 Posts: 84 Member
    I was prescriped Topomax along with Adipex for weight loss. I did lose weight very fast with it, but I eventually stopped taking it because of the side effects I had. I became a zombie. I was only able to sleep 3 hours a day if that. I was forgetting everything, and I still do, I had a hard time concentrating, and had numbness in my toes. Since going off of it, I've only gained about 5 of the 30 lbs lost.
  • dreamer12151
    dreamer12151 Posts: 1,031 Member
    Wow! reading through this thread made me realize I must be a lucky girl!

    I, too, an a migrainuer, and have been taking Topomax for years. I'm up to 200 mg per day now (have my yearly app w/neuro tomorrow, we'll see if that stays the same or changes...) and other than keeping my migraines at bay, the only side effects I had with it were the tingly hands and sodas tasting flat at the very beginning. They both went away though.

    Can't say that any weight loss of my ease in quitting smoking was due to the medication. I think quitting smoking was because I just decided I didn't wanna do it anymore. The weight loss was because I'm working damn hard at it!
  • d2footballJRC
    d2footballJRC Posts: 2,684 Member
    Topiramax is a migraine medicine that they recently mixed with phentermine for a weight loss drug that starts with a Qy.
  • sharonfoustmills
    sharonfoustmills Posts: 519 Member
    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

    it is not recommended or anyone with any kind of eating disorder because it increases the obsessive natures that come with those
  • AynzL
    AynzL Posts: 40
    I didn't read through all the posts but wanted to share that my best friend suffered through this as well. When she and her husband started trying to get pregnant I mentioned that she might want to talk to her doctor about the medications she was on for her migraines. She decided to go off of them and she struggled mentally with the weight gain. She did eventually get off of them by gradually decreasing her dosage. Good luck!
  • WendyL525
    WendyL525 Posts: 14 Member
    I was prescriped Topomax along with Adipex for weight loss. I did lose weight very fast with it, but I eventually stopped taking it because of the side effects I had. I became a zombie. I was only able to sleep 3 hours a day if that. I was forgetting everything, and I still do, I had a hard time concentrating, and had numbness in my toes. Since going off of it, I've only gained about 5 of the 30 lbs lost.

    I feel ya - same symptoms here, but did help with my migraines. Im only up 3lbs and ive been off for a month. I put on 5 right off the bat, but im REALLY watching every bite i take and being super cautious now that i know its easy to put back on, much easier than if i were still on the Topamax.
    Thanks for the response!
  • RCottonRPh
    RCottonRPh Posts: 148
    I am a pharmacist. A side effect of Topamax is that it decreases appetite. Thus, the resulting weight loss many see. In addition to being used as an anti-epileptic and migraine medicine, it is also now a component of the new weight loss drug, Qsymia, where it is combined with phentermine. Because of all the side effects involved with Topamax, I would only ever advise using it for seizures or migraines. For weight loss, it is too risky and there are safer options for weight loss like eating less and moving more!
  • LaurenBrown1771
    LaurenBrown1771 Posts: 1 Member
    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.

    what dose did you start at? I am supposed to start this medicine on thursday. Was taking depakote for migraines and was rapidly gaining weight so my GP prescribed me topamax.
  • sljohnson1207
    sljohnson1207 Posts: 818 Member
    Topamax was prescribed off label to me for nerve pain. The side effects were unbearable, and esp. scary because I was unaware of them. However, my family, colleagues, friends, and even a nurse practitioner all noted and commented to me about how slow my motor movements were, and how I was slurring my speech. They said it was like I was very drunk. I felt very tired on it, and would fall asleep randomly like I had narcolepsy. It's interesting to note that I've also been prescribed other meds in the same class for pain and they all had the same side effects on me, especially Trileptal. That one was the worst side effect wise for me, and the dr. that prescribed it said I should mark it as an allergy, the side effects were so remarkable.

    Be careful with these drugs. They are potent.
  • jasmine_noel
    jasmine_noel Posts: 62 Member
    I'm very surprised your doc didn't know about the numbness/tingling associated with Topamax. Drinking more water helps a ton with that, but I would have quit like you with the hair loss. I took Topamax plus a stimulant briefly for weight loss, but couldn't handle the side effects.

    Anyway, it's not changing your metabolism or making you burn more calories, it simply decreases appetite for most people. If you're 'watching every bite' there's something else at play here - no magic with the med keeping 3-5 lbs off.
  • thescoobydance
    thescoobydance Posts: 1
    I took topamax for 1.5 years. I did gain some weight when I went off it (about 5 lbs), but it stopped after that. I did NOT increase the amount I ate either.
  • pander101
    pander101 Posts: 677 Member
    I am on topamax for seizures and the adjustment was a rough one. I'm on 200mg a day. But the drug does not affect metabolism. It's reduces appetite and in some cases just eliminates it. It also can change the way users taste food, finding them less palatable. Also, in some cases has been known to work on the addictive centers of the brain fighting urges to eat food.

    I started this medication in March. I had seizures when I was younger and we thought I grew out of them. The just stopped for 16 years so due to my previous history this is a medication I'll have for life, which I'm fine with. There are worst ones. This one has had great success in controlling seizures and it is allowing me to continuing on with my normal life without interruption.

    My experience so far is I am currently struggling to eat anything. About a month and ago I was eating more to my usual habits but not hungry. Just eating because I knew I had to. Now I have no appetite at all. The foods I love I find pretty gross, any cravings I have last for a second and they're gone. I don't want food at all. I'm still overweight, but losing a bit too fast now. But it's just weird. I'm not struggling not to eat like I have in the past. I'm struggling to get adequate nutrition instead.

    As for other side effects. In middle of sentences there are random words that I just can't remember. Like I'll just stop in mid sentence. That would go away if I stop the medication. It's just mildly annoying. I haven't had issues with hair loss. But I forget things quite a bit, another side effect. The tingling is really annoying but fish oil has helped a lot with that. Also, the fact the the meds effect oral birth control. I had to get an IUD.
  • JamieMommy1985
    JamieMommy1985 Posts: 92 Member
    Same story I am on topamax for migraines (was told to take 2 pills a day before bed) and at the same time started dieting. Im down 35 lbs. in a little over a year and stopped taking it for a short period of time because of the extreme hair loss and forgetfulness. Anyways, as soon as I stopped taking it the weight started coming back along with the migraines. I started taking 1 pill a day before bed and the hair loss is very minimal now, and so are the migraines. Maybe ask your dr. to lower your dose if your migraines have come back because of it.
  • nxd10
    nxd10 Posts: 4,570 Member
    Yes, it's one of the reasons that people tend to stick with Topamax. My son's severe migraines are being treated with an antihistimine, which causes weight GAIN because it makes you hungry. He's only 16, but has to really watch it.

    Migraines suck.

    Sounds like you'll have to recalculate and find a new normal. It's great you caught it early before you gained too much back.
  • Junenh
    Junenh Posts: 2 Member
    I was prescribed topamax several years ago for migraines, and my MD at the time also hoped it would help with my weight, but the truth is that I was only on it for less than a month due to the side effects.
    I would forget what I was going to say in the middle of a sentence. My friends and family were amused, but I hated it.
    I got lost in the car on the way to work on one occasion (I had done that commute for years), and decision making became impossible. The last week I took the med, it took me four hours to buy groceries and 20 minutes of that was standing in front of the florist part of the grocery store trying to decide "if* to buy flowers and if so *which* flowers to buy. The next day I called my doctor, told her I *would* be going off it, so she could tell me how to wean off it.
    I know that this is a little off topic because I can't speak to the weight issue part of it, but no one should run to the doctor hoping this med will help them lose weight
  • lwmessick
    lwmessick Posts: 1
    I guess with Topamax I've had to take the good with the bad. I started it about 3 years ago after trying numerous blood pressure medicines, anti-depressants, etc that didn't work for my migraines. I've gone now from 10-12 migraine days each month to 1-2 every 6 to 8 weeks (if that much). While I've been on Topamax I've lost fairly significant weight for my size (5'2") I went from 128 pounds to 111 (which some say is too much, repeatedly!). It has held steady for the past year or so but I have to make sure I EAT to keep it there. That's a nice problem to have and it's definitely wonderful having fewer migraines. My biggest problem with the Topamax has been kidney stones....every 2-3 months but maybe urologist is working that out now with a potassium citrate supplement. If not I guess I will determine which is worse...giving up the Topamax and possibly gaining some of the weight back or no more kidney stones.
  • Megan101792
    Megan101792 Posts: 3,194 Member
    I was on topamax for my migraines until the horrible bloody noses and horrible hair falling out occurred when I was in my teens. Like literally, patches of my hair fell out and 20 bloody noses a day. Only stopped taking it because my parents made me. It was a wonder drug for my migraines but not my headaches. Botox helps now. Sorry, a whole little spew on my past issues.
    The issue at hand, yes, it is common. Topamax acts like an appetite suppressant when you take it while treating other conditions. If you are worried about the weight coming back on, as it seems like you are, Adipex-I, costs about 20 dollars a month and is a legal appetite suppressant. Talk with your doctor about it. My doctor approved me to be on it, but I am still considered to be in the 'obese' range for my BMI.
    Apidex can cause headaches so that is the caution. i risk that when I take it, but the botox and my injections work well with me.
  • cpitchford131
    cpitchford131 Posts: 1 Member
    I have migraines. I started taking Topomax 10 years ago. The first dosage made me totally lose my brain and at the time I was a journalist. Not being able to find the words was awful. He lowered my dosage and I did ok. I lost a ton of weight and it was awesome. As time went on I found that I had occasional bouts of depression, would cry for no reason, became less social. Those things were not serious enough to make me want to quit. The topomax (plus occasional imitrex) really helped my migraines. Then, 4 years ago I started losing my hair. Handfuls! I could not figure out what the problem was. I went to my GP, a gynecologist, a dermatologist and an endocrinologist. Every one of them had my medical history. None of them could find a problem. Finally, I did not fix my hair or wear makeup when I visited my GP and complained abt my hair loss AGAIN. Up until that point he hthought I looked "ok." With my hair thin and "unpoofed" he looked at me, looked at my record and finally made the connection that Topomax was causing my hair loss. I had to wean off it. 6 months later my hair is recovering. But eating the same way I always have and go to the gym as I have for several years,I have gained 15 pounds.
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