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UPDATED: Tue, 12/13/2005 - 3:51pm
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jeanmo...
Topamax and Weight Loss
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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.
By jeanmo... at Fri, 04/01/2005 - 6:46pm | 7264 views | 36 comments
Topic: Medication Issues
Recent Comments on this Discussion
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.
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!!
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.
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.
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.
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.
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
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.
No, The manufacturer recommends that the tablet not be broken in half due to the extremely bitter taste.
Hope this helps
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.
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!!
Hello...my son has been on Topomax and Carbatrol for about two years. He' s 18
now. During that time he has lost a good 40 pounds . I would say he is at the
normal weight now for his size. It is very obvioius that he eats smaller portions
and a little less junkfood. I would tend to assume that the meds had a lot to do
with this despite that he eats healthier meals because he doesn't get very much
exercise. Best Wishes.
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!!!
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
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.
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.
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.
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.
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!
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 :
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.
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
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.
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
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
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.