I have been on Topamax for a little over a year. I've had most o...

hi in response to your question regarding the issue of sustained weight loss with prolonged use of topamax. From what I've discovered just by online searches and other peoples testimonies it sounds like the weight loss begins to fade eventually the longer the person is on the drug. But I have a feeling it is different for everyone. I even heard from someone who took the drug that the second time they went back on it, they didn't experience any weight loss at all. Their recommendation was to take advantage of it while I could. Hope that helps.
The whole taste perversion thing is weird though regarding Coke and beer or any soft drinks in general. I can't get enough hot banana pepper rings! and find I crave only healthy foods not cakes and candy like I used to, since beginning Topamax (25 -50 mg) only 2 weeks ago. Has anyone experienced a feeling of being cold like almost chilled to the bone suddenly? that is really weird. I don't care for the word retrieval issue or other silly things like forgetting scheduled dates and times. You have to carry a pad and pencil with you at all times. My doctor suggested this drug as a mood stabilizer as a transition from a hellish withdrawal from zoloft to celexa. The weight loss is just an added benefit. However, from what I am reading here in this particular forum I am exercising some caution with the use of this drug and don't intend to continue longer than a few months.

I, too, have had the experience of being very cold and can't seem to get warmed up. I feel cold most of the time when others are fine. I am sure you are right about the weight loss and figure I might as well get over my delusion of having found a miracle pill that would get me down to a size zero = haha.

I have been working out to try to maintain the weight loss, as it was something that I really needed. I still need to lose about 30 more pounds to be at a healthy weight...according the BMI indexes...so I guess I will have to really get on the ball and so some more calorie counting and harder workouts now.

Thank you for your reply and best wishes to you with this medication. I have not had any side effects with this that were too bad and none that would make me stop taking it. However, I realize everyone is different and suggest that you keep monitoring yourself so you know how you're progress is coming along.

Hello, I just found your question by accident and thought I would comment! I have been on Topomax for almost 3 years, and agree with most everything you have said. I too am cold a a great deal of the time and can never warm up. Weird! I have lost soo much weight is is not funny any more, and I am only on 25 mg a day. I am down to a size 2 now from a size 9 to begin with so for me it is a big deal! I do not want to lose anymore! The worse side effect I have is HIVES!! It it awful! It started about 9 months ago. I did not realize what it was and thought I was just itchy. But it has been getting worse, especially at night. When i east certain foods it is worse, but sometimes I do not eat anything and I break out into horrible hives everywhere! My face, chest, legs, arms! and then it goes away on it's own about 1 hour later, or if i can't stand it I take Benedryl! This is the most annoying part of it all for me, but considering how sick I used to get, I will take it!

I also get flu like symptoms every so often that may be associated with Topomax but they are not sure yet. It is listed as a possible side effect but who knows. Still, I will take the flu every once in a while over my migraines!

As for memory loss.. I definitly have expereicned a decline in my ability here! I am very forgetful and it only gets worse as time goes on. MY word recall is aweful too, and I find myself searching for words all the time!

I do not have the energy I used to have, but again, I have to outweigh the pros and cons. I feel overall healthier now than I did before!
I almost forgot, Soft drinks do taste funny to me, and before i ealized that it was a side effect I remember asking restaurants for my money back. lol! Now I know better!

If you have any questions about Topomax for Migraines, feel free to ask me, as I have been getting headaches for 15 years now! Good luck!

Thanks for your reply. That is funny about the soft drinks...I remember about two days after starting the med I was drinking a Coke and told my husband there was something wrong with the soda we had bought. Then, the next time I had one, I said there was something wrong with it, etc...then I got online and checked out the side effects, and there it was! No one beleived me until I showed them. But, I was really glad about this effect as it released me from a horrible addiction to CocaCola - no kidding- I drank 6 or so sodas per day or 2 or so 32 oz Cokes from McDonald's! per day for years and years....which probably explains why I needed to lose so much weight.....this has been a wonderful breakthrough for me. Best wishes to you with your meds and the side effects as well.

I almost forgot, I also had the hives symptoms, but only one time.....weird! I thought I was going to go insane.....I was lying in bed and my legs were itching so bad that I couldn't stand it. I hadn't eaten/used anything unusual, so I'm sure it was the med. I had to take my pants off and put on lotion, and finally took Benadryl. I was up for over an hour scratching. my husband thought I was just exxagerating....I really thought I was crazy too!

Also, another effect I have is being very tired.....I was already tired a lot and this has made it worse I think. BUT,. I don't have headaches 3-4 times per week like I used to and that is wonderful....so I can handle the effects for now.

You know, I never even thought about it until this moment, I had some horrible itching issues all over my body, and I chalked it up to soap, and switched to body gel (the bath & body works stuff that you put on a loofah). It's subsided a little, so I thought that it must have been the soap, but I wonder if it was the medication!? Sheesh, this stuff really HAS done a number on me!!!! But like you said, Cheryl, it has taken away my headaches, and to me, that's worth pretty much any side effect that can be thrown my way.

Hello!
I'm new to topamax and I like what it does for my pain and such. I had brain surgery in 06 and started having headaches and blacking out. Since the topamax I'm feeling better. HOWEVER I'm having stomach issues of diarrhea and rash issues, looks like hives with eczema and I don't want to tell the doctors. The month I've been on it I've lost 8lbs, and yeah I'm not going to complain about that either.
The eczema looking rash is on my wrists/arms. I use hydrocortisone to keep the redness down. Oh I don't want to get bounced around on meds! Anyone else have that!
OH I miss my pop, however I did want to break my pop drinking habits, I'm calling it the Topamax Flat pop syndrome!
J

I have quit drinking sodas altogether. I am very disappointed that topamax hasn't done more for me in the weight loss category. I have been on it for a month and a half and have only lost four lbs. I thought I would have lost more than that simply from not drinking soda anymore at all. I mean that in itself should have made me lose more weight than that by now I would imagine. Not including that I don't feel like I eat as much. I don't think I have that much weight to lose. If I wanted to get down to my high school weight which was super skinny I could lose up to 25 lbs, but at this point I would settle for losing just 15lbs. That's all I want to lose an I feel like I am not losing weight rapidly enough. As a matter of fact I gained 2lbs this week. I am very discouraged.

I wouldn't get discouraged about the weight loss - it really isn't a "weight loss" pill. I didn't lose a lot of weight at first, either...I didn't notice it until a few months into taking the med.

Also, I would commend you on not drinking the soda just because it isn't healthy anyway! Best wishes to you.

When I first went on Topamax, I had diarrhea a LOT....for several months, probably...that went away and now I don't have that problem anymore. It was quite a problem for a while, though...after I ate, I would have diarrhea almost immediately...might explain the wonderful weight loss:)

i have been on topamax for the second time for about 4 months now (had a break for pregnancy and breastfeeding) and in that time I have lost all my baby weight which I think was about 25lbs although I generally avoid scales, but can tell you that I went from a size 12 down to a 6 and I seem to still be shrinking and people telling me I look great and slimmer each time they see me which is odd as I feel like I am eating loads of sweet and fatty foods all the time. I don't want to eat large portions, it's true, but I don't hold back on the type of foods. I don't drink carbonated drinks although champagne has been spared the weird soda taste (TG!) and I do have "topamax moments' where I forget words, or dates or people's names (or mine!) but as I'm blonde nobody seems to notice much. I usually substitute some elegant cussing and this seems to gloss over it, especially in the playground amongst a group of preschool moms.. They're too tired to notice, just like me. It has worked wonders with my migraines. I've gone from 3 a week to perhaps 1 a month, controllable by Imitrex, and the 'fizzy feet' syndrome is much better than it was, as is the dumbness. I am hoping the weight loss is going to slow down now. I don't really want to be much thinner than I am now or I'll start looking scrawny. A woman of my age needs a little fat to cover the bones or it gets ugly, or at least uncomfortable for her spouse. Good luck to everyone on their quest.

Try taking daily vitamin C to decrease the Topamax side effect of tingling in hands, feet and face. This also helps with the bad taste from sodas. I found that the weight loss evened out after the first year.

Reply 5 months ago on August 9, 2008 by njcriddle, #5349

I have been on 200mg topamax twice daily now for 4 months. I am experiencing all of the above, pins and needles, chilled to the bone, flat sodas, not so much weight loss because I am also on seroquel for bipolar which makes you gain weight. However, the topamax is making me forget things and I am having a hard time saying what I want to say. I know what I want to say but I cannot get the words out. This is very frustrating and this is enough to think about coming off of the drug until I think about the headaches. I haven't had a bad headache now for 4 weeks. I cannot think about having a headache because my headaches last for 3-4 days and I am in bed the whole time so I guess not talking is worth it. The pins and needles aren't that bad but the diarrhea can make travelling difficult. I have never been cold before and this takes getting used to bus isn't something that I cannot live with. I haven't had hives yet but I do itch. I do not care for soda and I can do without the Beer. I am experiencing urinary tract infections and high blood sugar and not sure if this is from the topamax or the seroquel. Also, I have a horrible taste in my mouth all the time. I have to chew gum all day. This is annoying. I am sneezing and I looked this up and this is a side affect of topamax. I am beginning to wonder if you looked up anything and topamax if it would be related to topamax. This is a strong and strange drug. I don't think I have ever seen a drug that causes so many side affects and what are the side affects that have not been reported. The side affects need to be reported by those that are taking it even if they have not been associated with the drug. Hang in there. I am not quitting yet.

Topamax almost ruined my life and as nice as it was to use for weight loss i would be dead today if I had kept taking it. You don't realize how much the drug really affects you until you are off it and look back and realize how much your personality changed during use.
Please do not take this drug just because it helps you lose weight. Long term effects are not worht it.
As far as migraines I had for years and there were times I'd want to blow my brains out because of the pain but after thousands of dollars and medicine including topamax I finally admitted my diet had 95 % responsibility for my problems. Yes we don't understand why we can't eat what we want and why others can but that is just the way it is. You want to feel better eat properly.
I still crave topamax all the time but I know it's posion to me.

I have been on and off this drug for about two years. I have had all the side effects. When I am on it I start to feel like I'm not myself anymore and like I'm going in circles not getting anything done. I'm in sales and I feel like the drug takes my confidence, persistence and focus away so it's been detrimental to my job. I have social anxiety and lately, not sure if it's do to the drug, but I have been getting very flushed and nervous speaking to clients and co-workers and paranoid. I break out into splotchy hives for about 30 seconds and then it goes away.
The first 6 mos or so I was on the drug was awesome. I lost some weight, which I really didn't need to since I've been an athlete all my life... but I went from being muscular and fit to gaunt, so I enjoyed having the body-type I always pined after. Friends were jealous and pretended to be 'concerned'... life was good. But really only because of the appetite loss. I think a lot of people that take this drug for migraines really have food allergies. And since the drug makes you lose your appetite and taste for soda--which is like poison... the allergies are suppressed.
I am on it for bipolar disorder, which can also be controlled by exercise and diet, but the easier way seems to be a pill sometimes. Especially when a doctor tells you it's OK. If you want to be completely honest with yourself you should completely celan up your diet and exercise 4 times a week. I bet all your symptoms that you were taking the pill for in the first place would go away.
I think the drug may have done permanent damage after on/off for 3 years. I feel like my heart is fluttering, i feel weaker and foggy all the time. My skin is still splotchy and I feel my blood rushing. it definitely frazzles your nerves in some way. At the ripe age of 28 I feel shot.

I was on Topamax for about a year, up to 200 mg for headaches. It helped the headaches alot so I tried to ignore the itching. But the itching has gotten so bad (especially when I get hot, and I live in Texas so I am hot alot!) that I had to go off it...it has been almost 4 weeks and I still itch. Anyone know if the itching will ever go away?