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jeanmolson

Topamax and Weight Loss

I began taking Topamax for partial seizures in January, 2005. I have since lost 25 pounds (I am 5' 2" and am down to 102 lbs.). I just really have no appetite most of the time. I am wondering if others have lost weight like this on Topamax and if so, has the weight stayed off, or did you gain it back? I am 42 years old and was diagnosed with TLE in March of 2004. I took Keppra for awhile, but had breakthrough seizures and when my dosage was increased, my hair started falling out. So my neurologist switched me to Trileptal. I had terrible headaches on this med, so started the Topamax this past January. It seems to be working, though I'm a little concerned about the weight loss.

Comments

RE: Topamax and Weight Loss

Hello, how are doing?  I'm alright.  I read about your weight loss problem, and I really can't say that I have an answer for that.  I just started having seizures just 4 years ago when I was 19, and they still don't know what the problem is.  I have had the lobectomy (brain surgery)  and all other stuff, but still not much.  But, I have to ask a question about the Topomax.  You know, I feel like I have taken almost every med out there for seizures, but I still have not tried Topomax.  I too have complex partials, and I saw that it looks like the Top. may be helping you out.  That is fabulous.  I just want to know how it's going with the pill and if you yourself think it's the pill or, something else maybe.  I don't know.  Cause I am always willing to try something new if it would help with my seizures.  So, if you could just let me know a little about the pill, that would be great.  And, to add on, if it is still helping you, that is wonderful, I am happy for you.  Until then, take care and hopefully hear from you soon.  Take care,     Cheryl 

Re: RE: Topamax and Weight Loss

Hi Cheryl, I have been taking topomax for about 3 years and it takes a little getting used to but after that it's no big deal just part of your everyday. I started out on 25mg twice a day and now I'm at 400 twice a day but I usually take it right before bedtime just because. The side effects effect everyone in everyones own way it's all how you want to look at it, if your having a bad day and want to blame it on the medicine- and say it causes moodiness- then go ahead and blame the pills, or just say hey I had a bad day I'm in a mood. Some things I don't think you can get around are the tingling hands and feet but that usually goes away if you get up and do something. Hair loss but not a ton just like when you brush your hair when it's tangled. The loss for words can be a problem at first but after you get used to it no problem it's better than a loss for words because of your tongue being all chewed up. I just started having seizures about 6 years ago and have tried about every pill you can name, topomax is by far the best one yet I think. It's worth a try. the weight loss thing is not a problem you don't have much of an appatite but just as long as you eat at least one meal a day and drink something you'll be fine. like I said it's all how you look at it.

Bree 

Re: RE: Topamax and Weight Loss

I eat whatever I want and my weight does not go above 125lbs, I have lost 10lbs on topiramate. Makes you wonder what its doing to your body if it causes you to, lose weight/not be able to gain weight, have really bad body odour, acne, eye problems(pallinopsia) your hands feet,  and face tingle, memory loss, concentration problems, speech problems, hair loss....ahem.

Re: RE: Topamax and Weight Loss

Hi! I just wanted to comment on Topomax and it's side effects. I was on Topomax 400mg a day for 8 years. I took it for non-epileptic seizures. I was at a healthy weight on it with a good diet and exercise regime. I experienced the usual side effects of trouble putting things together in my head, tingling, loss of appetite and some hair loss. I went of Topomax in November of 09 and within about 4 months I gained 30lbs. I was even training with a personal trainer three times a week! I just couldn't slow down the gain. I am now seeing an internist for some other medical problems and he has said that there is rebound gain. If I had been aware of this I may have switched meds awhile back. I am really disappointed that it isn't talked about more in regards to ghe excessive weight gain.

My advice - if you are planning to go off- follow a nutrtion plan set out by a nutrisionist to avoid excessive gain :)

for those of you who have lost a lot - u will rarely continue to lose instead you will plateau and stay at a weight.

Boost helps for people who struggle with eating!

Cheers!

Re: RE: Topamax and Weight Loss

Topamax was a blessing for my severe migraines.  I did experience loss of concentration and the tingling.  I recently went off the meds due to change in insurance but the migraines have become severe again.  I was reading all the negative things people were saying and trying to decide whether or not to go back on this med.  It was nice to hear something positive, because my thought at this point is ~ foggy concentration I can possibly still work with on my new job but a debilating migraine makes me unable to function.  Thanks for the positive attitude.

RE: RE: Topamax and Weight Loss

Hi Cheryl,I did have a couple of break through seizures (simple partials) with the Topamax while I was working up to my current dosage, but now things are going well (except for the weight loss, which I guess isn't all that bad : -)I did have other side effects, like tingling in my hands and feet, and sometimes in my lips - how weird is that! (which I wrote about in another post). It was the worst for the first couple of months I was on the Topamax, and each time I would increase the dosage.This med also has some cognitive effects. I sometimes can't find the right word to say, I have trouble multi-tasking, and I my memory isn't so good. Hope this info helps.

Topamax and Weight Loss

I know what you mean Jeanmo! I too am taking Topamax. I am now on 300 mg 2 x a day. I struggle with finding the right words or even typing! Just spelling lately seems to be hard for me, b/c of the concentration issues while on Topamax. I have lost almost 30 lbs. as well. I am 5' 7" and now weigh 121. I used to be about 140-151. I have a 5 year old. It has been a bit strange for my friends and family to watch. They are critical and and think that I am some self-conscious person, starving myself!!! When I try to explain that it's the topamax taking my apatite away, that almost everything put in front of me makes me nauseated before I even touch it, they just say "yea sure."
I hate that those who have never lived with seizers or had to take Topamax really don't understand. I would take back the 30+ pounds any day, any time! If it meant I could live seizer free!

Re: Topamax and Weight Loss

I loved Topamax because of the weight loss issues but aside from that let me tell you what I hate about it and how it has ruined my life :

  1. Memory loss to the point that I was fired because I forgot everyone's names and could not remember my managers name
  2. Total Brain Fog
  3. My Cognative Ability was zero - so ask me to add 2 and 2 together and get the correct answer was hit and miss
  4. My family hated me because of my mood swings
  5. I hated myself because of my mood swings and the depression to the extent that I was suicidal and was seriously considering suicide
  6. I have forgotten how to spell since taken this drug

I am now trying to come off it and go onto Keppra but I understand that coming off these medications is a slow process so right now I am on 3 drugs and have to remain on tompax for goodness knows how long.  I hate, hate this drug.  I should be banned.

Re: Topamax and Weight Loss

I just started Topamax 25mgs every night. Iwas scared to start the med. What dosage do the side effects start? Might sound weird I have noticed  that carbonated beverages taste flat. I am a Rn who works 12 hr shifts. He wants me to increase to 50mgs in a few weeks. he does not want me to take it during the day. Is everyone taking this med at night. Pls any info will be helpful

Re: Topamax and Weight Loss

I took Topomax for about 3 years. I had been taking Depakote just before the Topomax. I had gained about 90 pounds and weighed 270. Then I started taking the Topomax and lost those 90 pounds. So I went through about 5 years of Depakote and 3 years of Topomax and finally came back to my original weight of 180 or 190. It's been about 10 years since I stopped taking Topomax so I have gained about 20 pounds back. Mostly from eating poorly and from age. By the way, the Topomax gave me kidney stones. Make sure you drink lots of water - especially if you work out.

Rob

Re: Topamax and Weight Loss

I take this med at night as well. At first soda's were flat, but that went away after a few months. My side effects aren't very severe. I don't mind taking Topamax at all. It keeps my headaches away and my weight where I want it to be. I take 100 mg. I've been taking it for 3 years. So far everything has been fine. My memory might not be that great, but nothing too terrible.

Re: RE: Topamax and Weight Loss

HI i am brooke and let me tell you, you do not wanna take topamax, it may feel all great at first, but you lose perfusive ammount of weight and lose all of your energy, and because of losing so much weight you can't sleep at all. SO good luck and i suggest you take depakote because it is the best on i taken, but be careful of weight gain on depakote it sucks but its the healthiest, well i at least think so.
peace out and good luck with your meds
brooke

RE: Topamax and Weight Loss

Hi,I was on Topamax for awhile.  It had the same affect on me.  I lost weight.  It is an appetite suppressant as well.  That's why alot of people who take it lose weight.  I had to get off of it due to other side effects like effecting my cognitive thinking and speech and it wasn't controlling my seizures that well.  Hope this helps.

Re: RE: Topamax and Weight Loss

you are heck of write, i went on it last year and it sucked so bad! once i started losing weight i thought it was all fun and great, but then i just hated it and every thing about it
peace out and good luck with your meds
brooke

Re: Re: RE: Topamax and Weight Loss

Can I ask what dosage you were on? When you lost so much weight- I am taking it for migrains- Starting with 25mg at night and then an increase every 3 days until I hit 100 mg. So far no issues. This is only day 5 for me, any idea why they have me taking it at night? that was one thing I wanted to ask my DO

Steph

Re: RE: Topamax and Weight Loss

I just got it and am going to take it at bedtime. It is suggested you take it at night because of the tiredness side effect. You will be asleep anyway.

RE: Topamax and Weight Loss

Hi, I have been on Depakote since 1996, and I have put on 55 pounds. Two months ago, I talked my doctor into letting me try Topomax to see if I could shed all of these unwanted pounds. Unfortunately it did not control my seizures, so I had to go back on Depakote. A lot of the other anti-seizure meds will cause you to gain weight also. I would definitely talk to your doctor about your weight loss, but don't get alarmed, most people do lose weight while taking Topomax. Take Care, Maddy

Re: RE: Topamax and Weight Loss

hi, i take depakote and i gained nearly 50 pounds and tried topamax (i lost weight and every thing on it, but the other side effects were to much for me), do you have any sugggestions on how losing weight while on depakote, please tell me if you know
peace out and good luck with your meds
brooke

Re: RE: Topamax and Weight Loss

hi, i took depakote for about 16 yrs. it was a horrid drug for me. i gained about 90 lbs. while taking it thru the yrs. one morning i woke up outta bed and said to myself "ive had it" im tired of being overweight from this drug. i joined weight watchers online and lost all the weight. they have a really good support group there too.

 

good luck!

Re: Re: RE: Topamax and Weight Loss

what sort of side effects? I had mainly extreme weight loss, paranoia, addictive behavior, bi polar and then suicide attempts. I had no sign or symptom of seizure activity or headache. currently I refuse to take anything.

Re: Re: RE: Topamax and Weight Loss

what sort of side effects? I had mainly extreme weight loss, paranoia, addictive behavior, bi polar and then suicide attempts. I had no sign or symptom of seizure activity or headache. currently I refuse to take anything.

RE: Topamax and Weight Loss

Actually, I was thinking of asking my neurologist to switch me from Tegretol *to* Topamax for that very reason!  I was just recently diagnosed with TLE - for the past 4 years I have been on Effexor and Prozac for depression and supposed panic attacks.  It turns out the "panic attacks" were really partial seizures as I was having deja vu with an overwhelming sense of fear.  Many say that Effexor and Prozac make it very difficult to lose weight or pack on the weight - whatever the case, I'm now quite overweight and have had a heck of a time trying to get it off.  I'm hoping by weaning myself off the Prozac (the doctors took me completely off the Effexor), I will be better able to attack my weight problems and that Topamax may work for me as it has for others.  (I Googled 'Topamax and weight' and found that for some it causes weight loss and for others it doesn't.)

RE: Topamax and Weight Loss

Hello...my son has been on Topomax and Carbatrol for about two years. He' s 18now. During that time he has lost a good 40 pounds . I would say he is  at thenormal weight now for his size. It is very obvioius that he eats smaller portionsand a little less junkfood.  I would tend to assume that the meds had a lot to dowith this despite that he eats healthier meals because he doesn't get very muchexercise. Best Wishes.     

RE: RE: Topamax and Weight Loss

When our neurologists put my daughter on topamax she said you have to watch very carefully for weight loss as this is the greatest side effect of this meds.  One of my friends was on it and didn't realize how much she wasn't eating and almost dehydrated.  Lack of appetite is one of the most common side effects of this med.  Watch carefully as you may not be aware of how much weight the person is losing.  My daughter is 18 and has been on this for 2 years along with lamictal.  She was still having lots of break through seizures so we added Tranzene and it has made a world of difference and we have been lowering her topamax.  Tranzene is an anxiety med that also works well for seizures.  She has been on this for 2 weeks and hasn't even had an aura of a seizure.  Yipee!!! 

RE: Topamax and Weight Loss

I was on tomamax 4 years ago.  I was on it for grand mal seizures. I went from 125 to 69 pounds, My parents took me off the medication because they new something wasn't right. my nuero wanted to keep me on it.  It caused more then just weight loss, I was like a zombie, i didn't want to do anything, worst it caused more seizures. I changed nueros and the new at UCSF called it dopamax.  Best of luck with it

Re: Topamax and Weight Loss

Hi there.

I just read your question about weight loss while taking Topamax. I took Topamax for about nearly 2 years and at first they were the best medication I had ever taken. I was free from seizures for nearly 1 year. The most time in my life! Then suddenly I was going through some very bad problems in all areas of my life which suddenly all the upset made me very ill and my seizures returned. When they returned back, they also brought very bad side effects with my medication which was then Topamax. One of the very bad side effects I then had with Topamax was continually losing weight and loss of appetite. It made me lose nearly 2 1/2 stone in weight. My GP then put me on Keppra in place of Topamax. So now I am still taking Keppra with Tegretol which gives me very bad headaches and makes me sleepy especially lately for some reason. I want to go off Keppra now. Can anyone help me with their experience of taking Keppra?

Re: Topamax and Weight Loss

Hi Pinkan-I have seizures and severe migraines along with depression and anxiety.  I have been on Keppra for over a year and it does have a tendancy to make me sleepy so I take it at night b4 I go to bed.  I am supposed to take 1500mg twice a day but instead I take it all at one time b4 bed.  I just started topamax a month ago and the only side effects I have had are loss of appetite leading to weight loss and tingling in my arms and legs at times.  BUT it has seriously cut down on the intensity of my migraines so it's worth it to me.  The keppra gave no side effects other than fatigue but I suppose it afects everyone different.  Hope I was able to help...good luck!!

Re: Re: Topamax and Weight Loss

Hi I am Juli, I have generalize seizures and petti mal seizures have since I was born. I have been on many different medications. I am 49 years old now and just now having my seizure under control/ Befor October I was on Depekote, dilantine and tranzene I am now on topamax and Depekote. I have some minor side effects but nothing compared to what I had gone through before . No more grand mal seizure. I can live with the petti mal now and then. Mostly during my period. I have a good doctor who watches me closely now. I have lost only 18 lbs. He notices my blood count is low and he checks it and makes me take extra vitamins and such. I suggest as I did if your doctor is not doing the right thing. They don't know what we go through , people have no idea what it like to have to live the life of a seizure. I found another doctor and he is great.

Best of Luck to all
Juli

Re: Topamax and Weight Loss

This happened to me as well I started to take topamax for a misdiagnosed movement disorder. I lost twenty five pounds I started to get high anxiety I never once had a head ache or siezure but I changed my personality completely. I didn't see it since I was so impressed with not having any disabling movements or headaches. I then was diagnosed with bi polar manic depression when I stopped taking topamax it all stopped and I was more level. Currently I do not take anything I can manage my disorder all on my own strict diet and activity.

topamax dosage

I have just been diagnosed with seizures through an eeg the mild ones that you stare in space . I had an accident a couple of years ago and since then I have been diagnosed with seizures , Mood disorder, anxiety and I have bad memory loss and poor concentration. I have read allot of comments posted about topamax and some of there side effects. Im scared to death to take it. I took one 50mg pill like 2 months ago and it made me feel like I was drunk and on speed. I felt like bugs where crawling in my hair , my mouth and whole body was tingling I did not like it at all. I know i need to take this medication for the siezures. My whole family is on me to do so. My doctor prescribed me 50mg at bedtime for 1 week and 50mg in morning and 50 @ night the 2nd week. I feel like 50mg is a little much for me. I only weigh 120lbs and I feel with the experience i had with it last time that it is to big of a dose. My doctor will not give me 25mg , so my question to anyone out there that may know, Can I Break the 50mg pill in half ? I am also worried about the hair loss and other mental problems that I have if it will make me worse? I need some answers please help me. redlynn underscore seventy two at yahoo

Re: topamax dosage

No, The manufacturer recommends that the tablet not be broken in half due to the extremely bitter taste.

Hope this helps

 

Re: topamax dosage

I have been taking Topamax with one year   for a
about two years. The weight loss factor is normal. But I would advise
you to eat healthy , and to maintain a very good exercise program. I
didn't know that it would happen, I was not aware that once I was taken
off of Topamax that I would gain 90 pounds because of it. Topamax
literally is a fat burner due to some of the compounds that are inside
of the medication.

Re: Topamax and Weight Loss

From what I've read here, Topomax doesn't sound like a drug I want to try. I was taking Dilantin, and the side effects were so bad, I hardly ever ate anything. I was recently switched to Lamictal, and have, when I can stay awake, eat a regular meal. Dilantin looked like, and the side effects were like, the Blue and Clear caffiene pills some of idiots used to take in school to stay awake to study. At least on Lamictal, I can eat, not that my diet is any better, at least I eat. 

Re: Topamax and Weight Loss

it is so nice to be able to come here and read all of your stories and know that i am not the only one. I have been on topamax since 11/04 and at first i lost 25 lbs. I am 5'6'' and got down to 105. Now I am always in between 113 and 117. I take 400 mg a day right now because I am having so many auras, but I will tell you this, every time I feel an aura I take half a xanax and it goes COMPLETELY away. I have been having seizures for over 15 years and a doctor never told me that it was an aunt of mine. Back to the topamax, the side effects were so bad at first, but they do get better. Now I can't do anything though, I can't drink alchohol, a lot of caffeine, stay up late. If I do I feel  an aura the next day. But I also have migranes and rarely have a migraine thanks to the topamax. 

Re: Topamax and Weight Loss

I have been taking Topamax (with one year and a half break ) for a about two years. The weight loss factor is normal. But I would advise you to eat healty, and to maintain a very good exercise program. I didn't know that it would happen, I was not aware that once I was taken off of Topamax that I would gain 90 pounds because of it. Topamax literally is a fat burner due to some of the compounds that are inside of the medication. I love the medication because it helps with my bipolar disorder but also because I have migraines like crazy. But, for you I would really suggest you do what I do and find a really good grounds place where you can get a good exercise program so you wont gain that 90 pounds like I did when I got off of the medication

 

 

 

Brandy.

 

 

Re: Topamax and Weight Loss

hi, jeanmo, my name is jennifer. i've been on topamax for about 3 months and my dosage is 50 mg in the a.m. and 75 mg in the p.m. i take it for my simple partials and migraines. it has done wonders for both of my problems. although, my neurologist hasn't regulated my medication yet so i may be increasing the dosage if my seizures and migraines return. the weight loss hasn't been all that bad. i think i have maybe lost 7-8 lbs. i do have tingling in my feet every now and then but it's not at all bothersome. my hair has never fallen out. my face sometimes tingles but it is never constant or unbearable. i do sometimes struggle with my words but i hold a full time job as a billing coordinator for an oil, gas and chemical company and i am a mother of three children who are constantly on the move. i'm not sure what the future holds and i know that medication is different for everyone but i know that topamax has been a life saver for me. just be positive and talk to your doctor at the first sign of concern. i hope this helps you.

Re: Topamax and Weight Loss

It was first marketed as a diet pill (as told by my doctor), but women weren't losing enough weight on it. When I took it for 15 days, I lost 12 lbs. I advise everyone I know not to touch Topamax. I personally believe it does more harm than good.

 I felt like a zombia trapped inside my body. I couldn't feel emotion. I couldn't eat. I wasn't happy. I didn't want to leave my bed, much less go to work and function as a normal person.

 

I am now on Keppra, and I LOVE it!! 

 

Re: Topamax and Weight Loss

My experience with Topamax has been both positive and negative.  Initially, I was on 100 mg for 18 months.  It controlled my symptoms, but I felt sluggish and stupid.  I couldn't think or respond quickly (compared to myself in pre-Topamax days) and was always at a loss for the right word.  My hair also started falling out.  I did lose weight...about 20 lbs, which was a good thing.

With my doctor on board, I slowly withdrew from Topamax.   We were hoping that since the radiation had shrunk my tumor a little, maybe I wouldn't have seizures anymore.  It took about a month to withdrawal.  It was so nice to have my mind back!  My hair stopped falling out too. But talk about the rebound appetite...I gained the 20 lbs back plus another 5.  Wasn't prepared for that!

After about 5 weeks without Topamax the seizures started again.  I went back on it, but this time, my doctor advised titrating up much more slowly.  As it turned out, 50 mg seems to be working fine for me.  My mind is clear, and the seizures are under control.  So far, no unusual hair loss either.  I still feel sluggish, but nothing like it was on 100mg.  No weight loss, but no gain either.  I'd rather be off the stuff altogether, but I can live with 50mg if it means no seizures.

Re: Topamax and Weight Loss

I don't prefer Topamax for weightloss as I think it is very bad and terribly dangerous to take it for weight loss. Then,
all the chemicals that for example calm an electrically excited brain
will go to work on your normally functioning brain.Better go for natural diet learn more from http://knuckleheadsfitness.com/

Re: Topamax and Weight Loss

I was diagnosed with Complex Partial Seizure Disorder a little over 1 year ago. I was started on 50 mg Topamax twice a day. I was glad to start loosing weight since I have over 100 lbs to lose! The negative side was the numbness and tingling in my feet, the sense of going crazy and the word-finding difficulty. Probably the worst problem was the ringing in my ears. I had to retire from nursing on disability. After the second seizure my dose was increased to 100 mg. I was worried the ringing would get louder with the dose increase, but it didn't. I've not had a problem with hair loss. Even though I rarely feel hungry I still have to eat. I have fatigue problems already because of Myasthenia Gravis and Fibromyalgia. I thought all my hard work at dieting was finally paying off and was a little disappointed to find out it was the Topamax that was causing the weight loss.
At your height, your weight is about right, but you wouldn't want to lose anymore. You can always drink your calories with juice or milkshakes if you don't feel like a full meal. I keep salads and sliced turkey handy. Breakfast is usually a glass of chocolate milk with my morning pills and vitamins; mid-morning is either yogurt or cereal; lunch is a sandwich or salad, maybe soup; supper is normally a full meal since I have to cook for my family.
You may have to make yourself eat so you don't lose too much. Try to eat more calorie dense foods like milkshakes. Make your own eggnog. Talk to a nutritionist at your local hospital or look online. Don't go overboard or you'll look like me in six months! :) My weight loss has been slower. I've lost only 35 lbs and part of that was before starting the Topamax. I'm not very active which is another problem. Considering what I've read others have had to say about various seizure meds, I'll take the Topamax over the rest. It's taken a year, but I've finally adjusted - well, pretty much. Having epilepsy is not easy.

Re: Topamax and Weight Loss

I have been prescribed Topamax for Depression/Bi Polar. I had been reading up on the side effects, and I found a comment somewhere on the internet that said taking a Folic acid suppliment, and also Vitamin C could help with some of the side effects. I hope it is okay to link from here (http://www.medications.com/effect/tag/tingling%20hands%20and%20feet) The comment made on June 19th is the one that refers to Vitamin C. I've already started drinking lots of OJ.

 

**edit: On further research I'm finding several different things that people are suggesting. Either way it looks like a suppliment for potasium and/or vitamin C, can help with some of the side effects. 

Re: Topamax and Weight Loss

HI, I was on Topomax for about 10yrs, just started taking Keppra about 6months ago.  I had lost a good 20 pounds which put at around 100lbs, I am 27, 5'8".  I looked and felt awful, had no want for food to be near me.  I began to dislike my favorite foods because i constantly had to force myself to eat.  I should've never been put on it to begin with because i'm so skinny in the first place.  If it becomes a problem you might wanna think about talking to your doctor about another option of meds.  Good luck and stay safe :)