Hi. I am so glad I ran across this site. I am a migraine sufferer since I was a teenager (i'm now 34). I've been on cafergot (nearly killed me, literally) and maxalt. The maxalts help when I get migraine, but i'm still getting almost 10migrains a month and my insurance will only cover 6 maxalts a month. At $23 a pill it's getting a little expensive to buy the extra maxalts, so my doctor wants to try me on topomax. I just started it 4 days ago. I've read all the info and posts on it. The only thing that concerns me is the kidney stones, since I have a history of having them as does my family. I've been hospitalized twice for stones. But I can increase my water in-take and be careful about my carbonated drinks and milk products which is what was causing my stones. Here is my question.....

After reading all of the posts, I did not see this addressed....Unless I missed it. Have any of you had your tastes change once you were on topomax? I am a mello yello, mountain dew lover. I have to limit them due to stones, but I occasionally savor one with a pizza or movie. This week i've tried to drink four different kinds of softdrinks (mello yello in a can, mountain dew from a fountain machine and coke and sprite from 2litres) none of them tasted right and I threw them away. They tasted flat at first, and then when I swallowed they burned my throat!! How weird is that? Has anyone dealt with any taste changes and if so, is this a predecessor to more serious side affects?

Thanks,
michelle

I definitely had a taste perversion, too. Also, it left a bitter taste all day in my mouth. Now that I am completely off the topamax I do not have that taste anymore.
Marionalma

I have been on topamax for one year and I have to say it has helped a lot. I was taking 8 advils a day for my headaches everyday. Now I get maybe once every 3 months. The side effects are rough. When I started it I was 126 lbs. Now I weigh 94 lbs. I can't drink soda because it taste like metal. In the beginning I started at 25mg for 4 weeks I had the tingling and numbness, I was always tired and depressed, muscle spasms in my hands and memory forget that I couldn't remember anything. I then went to 50mg and got tingling in my hands and feet still couldn't eat anything whenever I would even think about food I would feel nausous. I was at 50mg for 6 weeks then went to 75mg I was on that for 2 days and went back to 50mg because I couldn't take the side effects. I had tingling in my neck that it felt like my throat was closing. I waited 2 more weeks then went back to 75mg and was ok still had usual side effects. Then 100mg was able to eat but not a lot still had tingling and numbness usually in the morning my eye would twitch. Then up to 125mg after 4 weeks no side effects. Then 150mg still no side effects but able to eat. Was at 150mg for about 2 months. I saw my Dr. And he couldn't believe how much weight I lost that he wants me off it as well as everyone else. They say I look sick because I got so thin. I asked him if topamax can make your hair fall out and he told me it is because I am malnutrioned. I had to ween off it 150mg down to 125mg for 2 weeks then 100mg for 2 weeks then 75mg for 2 weeks, 50mg for 2 weeks, now I am at 25 mg for the next 1 1/2 weeks. After that I have to take it every other day for 2 weeks.

I do find that as I come off it that whatever side effect I had at that mg in the beginning I am having now. I haven't had the tingling in awhile or the depression or not being able to eat but now I do again. Has this happened to anyone else???? Also now when I do eat I have major stomach pains. And I am soooo thirsty all the time. Just as I drink something 2 minutes later I feel like I haven't had anything to drink in months.

If you can handle the side effects I have to say topamax has worked wonders for my headaches but now I have to deal with the fact that I can't eat.

Hi annaleelobes and anyone reading,
i have been on topomax for a tad over one year now. After 12 years of horrible migraine/cluster (call 'em what you like) headaches, I was extremely hopeful. Nothing worked for me before this: the triptans did nothing except cause cardiac issues, pain killers took the edge off just so that I could fake making it to drive kids to and fro and semi-function,though always in pain, any of the others did not work. Topomax was offered and I accepted. As I sit here typing this, I feel as though I am nearly dead, not just mentally but physically as well. I had to titrate up to 200mg a day for the med. To help and with that...Eat? I was not big at the start and I am now a skeleton. The thing is, i, like the rest of you who are here, was so happy at life with a 20-30 day period of no headaches that I failed to see me. People would run into me and their mouths would fly open and the words "you are soooooo thin..." and I didn't see it. True that a size 0 was falling off of me and I no longer looked at recipes or knew what to buy for food, eat? I caution all of you to be careful . My family failed to hear me, failed to see me. I am very afraid of what I have lost. Mentally it has been weird, but that you can regain. It is the physical that you need to be very aware of. My heart does not seem to be beating normally. Things took so long because of the mental haze! I am afraid I have lost too much. Oh, I also lost friendships because of the strange things that I apparently said on this stuff..Boy that helped me isolate and fade into the sunset! I haven't a clue what to do at this point. I only know that I have to get off this heavy duty drug. Can't live with my headaches, can't live with topomax. There has to be something else. Just has to be. This in one heavy duty anti-seizure medication. Whole brain. Think about that one. Hard to think when you are in the haze of the moment.
I would love to hear back from other longtime users..Topomax that is. Also, forgot to mention hair..What hair! Loosing that too. Just like the digital camera, and the....Careful when you first start because you manage to lose things. Forgive any spelling errors. Topomax will steal your ability to spell and then to care whether it is right or not. Sorry, I do not mean to sound so doom and gloom but this is one serious drug and you need to really be watched by someone other than yourself. I did not have that other person.
The best to all

Hi annaleelobes and anyone reading,
i have been on topomax for a tad over one year now. After 12 years of horrible migraine/cluster (call 'em what you like) headaches, I was extremely hopeful. Nothing worked for me before this: the triptans did nothing except cause cardiac issues, pain killers took the edge off just so that I could fake making it to drive kids to and fro and semi-function,though always in pain, any of the others did not work. Topomax was offered and I accepted. As I sit here typing this, I feel as though I am nearly dead, not just mentally but physically as well. I had to titrate up to 200mg a day for the med. To help and with that...Eat? I was not big at the start and I am now a skeleton. The thing is, i, like the rest of you who are here, was so happy at life with a 20-30 day period of no headaches that I failed to see me. People would run into me and their mouths would fly open and the words "you are soooooo thin..." and I didn't see it. True that a size 0 was falling off of me and I no longer looked at recipes or knew what to buy for food, eat? I caution all of you to be careful . My family failed to hear me, failed to see me. I am very afraid of what I have lost. Mentally it has been weird, but that you can regain. It is the physical that you need to be very aware of. My heart does not seem to be beating normally. Things took so long because of the mental haze! I am afraid I have lost too much. Oh, I also lost friendships because of the strange things that I apparently said on this stuff..Boy that helped me isolate and fade into the sunset! I haven't a clue what to do at this point. I only know that I have to get off this heavy duty drug. Can't live with my headaches, can't live with topomax. There has to be something else. Just has to be. This in one heavy duty anti-seizure medication. Whole brain. Think about that one. Hard to think when you are in the haze of the moment.
I would love to hear back from other longtime users..Topomax that is. Also, forgot to mention hair..What hair! Loosing that too. Just like the digital camera, and the....Careful when you first start because you manage to lose things. Forgive any spelling errors. Topomax will steal your ability to spell and then to care whether it is right or not. Sorry, I do not mean to sound so doom and gloom but this is one serious drug and you need to really be watched by someone other than yourself. I did not have that other person.
The best to all

Hi annaleelobes and anyone reading,
i have been on topomax for a tad over one year now. After 12 years of horrible migraine/cluster (call 'em what you like) headaches, I was extremely hopeful. Nothing worked for me before this: the triptans did nothing except cause cardiac issues, pain killers took the edge off just so that I could fake making it to drive kids to and fro and semi-function,though always in pain, any of the others did not work. Topomax was offered and I accepted. As I sit here typing this, I feel as though I am nearly dead, not just mentally but physically as well. I had to titrate up to 200mg a day for the med. To help and with that...Eat? I was not big at the start and I am now a skeleton. The thing is, i, like the rest of you who are here, was so happy at life with a 20-30 day period of no headaches that I failed to see me. People would run into me and their mouths would fly open and the words "you are soooooo thin..." and I didn't see it. True that a size 0 was falling off of me and I no longer looked at recipes or knew what to buy for food, eat? I caution all of you to be careful . My family failed to hear me, failed to see me. I am very afraid of what I have lost. Mentally it has been weird, but that you can regain. It is the physical that you need to be very aware of. My heart does not seem to be beating normally. Things took so long because of the mental haze! I am afraid I have lost too much. Oh, I also lost friendships because of the strange things that I apparently said on this stuff..Boy that helped me isolate and fade into the sunset! I haven't a clue what to do at this point. I only know that I have to get off this heavy duty drug. Can't live with my headaches, can't live with topomax. There has to be something else. Just has to be. This in one heavy duty anti-seizure medication. Whole brain. Think about that one. Hard to think when you are in the haze of the moment.
I would love to hear back from other longtime users..Topomax that is. Also, forgot to mention hair..What hair! Loosing that too. Just like the digital camera, and the....Careful when you first start because you manage to lose things. Forgive any spelling errors. Topomax will steal your ability to spell and then to care whether it is right or not. Sorry, I do not mean to sound so doom and gloom but this is one serious drug and you need to really be watched by someone other than yourself. I did not have that other person.

Wow. I have just stumbled on this blog and am blown away to find other people who suffer from headaches. I'm 47 and have spent my whole life making exuses for my migraines and hiding out, feeling bad for missing family events, ruining outings with nausea and puking, followed by guilt and appologizies and making up for lost fun. I'm the only one in my family who has them and my husband has spent years pretty much thinking they are self inflicted. They have been getting worse in the last few years and especially bad in the last couple months. I have abused every over the counter med and my stomache and have now found topomax.
I am on day four and experiencing the loopines. I am comforted by some postings that report this should diminish. But even so, this is a better world than the migraine one, so far. I just got an amazing chiropractor, as well, and hope I don't have to stay on the topomax for long. But my md says at least nine months. I'm wondering why some people have been on it for longer than a year. Is it because it's still a new drug and they didnt know the long term affects? And what if you're only on it for six months? What then? I think I need to find a better md that will answer my questions. I'm already getting some facial numbness. Oy.
Anyway, I feel better already, just knowing there are loads of people with my affliction out there. Don't get me wrong, I wish you didn't have it! Really- i'm so sorry you have to suffer... But it's comforting to know i'm not on the planet alone.
Hope you have a great day.

My last dose of topamax was sunday. I see a change from being on it to not. I am getting the headaches again. I had to lower the doses as I was comming off of it and now I have had a headache everyday. I am taking aleve for it but life was better on topamax. They only bad thing is now I weigh 91 pounds and I am 27 years old. Not good. My doctor doesn't want me to go on it because of the weight lose so he wants to try a new medicine.

I went to my doctor, told him about getting off topomax.
He wasn't happy I made this decision by myself, but told me to try 1200mg of b12 per day. He said they have some studies to confirm that this might help.

I'm on b12 and cellfood (dietary supplement with oxygen (?)) for less then a month now, I had to take 1 imitrex per migraine twice and this was enough to get rid of the pain.

This is vast improvement from going to er every 5-7 days...

I just started taking topamax. And I just found this forum. I had no idea there were so many people like me out there. I ,like some of you have had migraines forever. I think I was about 14 or 15 and am now 60 . In the early years doctors would pat me on the head and send me home with nothing but "get a new pillow". I think I was in my late 30's when a doctor finally began to help me. But until imatrix came on the market I was in the er like it was my second home. It was awful. Now lately the headache's have been coming more often again like 5 and 6 times a week so that's why the topamax. I'm in the first 42 days. I'm having some of the side affects like the taste change and the appetite thing I seem to be hungry all the time. But not really gaining or losing weight. I read that you should up your water intake so I have. Any way I am tired but push myself to do the things I need to do or want to do. I walk 2miles every day and 2 times a week I do aerobics with some friends at the club house. The other morning I started to lay down on my bed about 10:00 in the morningfor a nap and told myself no way! I'm hoping the side affects go away. I plan to check back here to see how thing are going for some of the rest of you.

I have tried every med I could and have been told to try some unbelievable surgeries for 15 years of tension/migraine headaches. A neurologist prescribed topomax without any bloodwork (we should all have it first). Initially, I felt that I had a new lease on life. Very few headaches and they were very tolerable. But some other symptoms starting creeping in. Anxiety, forgetfulness, extreme fatigue, loss of motivation ( I too can spend a day watching tv and I am normally a going concern). Do not take any other meds with this stuff - cough medicine, muscle relaxants etc. My doctor did not mention this little detail and I had a very strong psychological reaction. When I told the neurologist my concerns of my mental state he felt it may be residual headaches, and upped the dose to 200 mg. My mental condition has worsened. I have had two severe colds in two months (respiratory infections is a side effect). Yesterday, I ran a red light - that is how stupid this drug had made me. Some psychiatrists have nicknamed this drug "stupimax". I had to go off this med while writing exams as I failed one while taking it - I knew the answers but just couldn't get hold of them. If you think that sounds bizzare you should experience it. Each day my mental state becomes increasingly questionable or I feels I have less control over it. It seems I have to chose between uncontrollable pain or uncontrollable mind and emtions. I am going to reduce my dose and go back to migraines or i'm afraid I will lose my mind to this drug. Some of the other psychological effects were more severe but too embarassing to detail on this site. It appears to effect each of us differently and is prescribed without due caution for our health. Please read the list of side effects and watch your own behaviour.
Next I am going to try botox - it has been found effective for those of us that experience headaches related to muscle tension.

First, I forgot to mention how thankful I am to have found this forum. I wan't sure if I was losing my mind as my doctor and neurologist did not relate my mental condition to the drug. Fortunately, I found this site and with so many others experiencing the same psycho effects, and I have during my 6 months while taking topomax, I think the drug is the culprit. Next, my blanket statement about needing bloodwork is an over reaction. Those of us on other drugs, or with compromised grastro-intestinal tracts (as topomax seems to be rather tough on it), low bicarbonate levels ( I don't have a clue what mine is) should have our blood levels tested according to the totpmax data sheet and I know I have not had any blood work done.
Thanks for all the amazing info and saving my sanity.

yep - I had the same symptomology after topomax. Took me 8 months to put back on normal weight. Had two attacks of kidney stones and all kinds of crazy crap. Topomax is an awful drug.

That is the only problem with prescription meds, for example .Topomax, they help some with the headaches but you lose your hair, lose your appetite, and all other problems. I still like immitrex for my migranes with promethazine with a dark room and sleep for a few hours because without the promethazine I get nauseated but I got nauseated before I started taking the immitrex when I had the migranes so I did not really feel any side effects with the immetrex as long as I took it at onset of the migraine but it is getting so scarry to take anypresription meds anymore for example, look at vioxx, I tried it briefly but I am so sensitive to meds like that that I cannot even take ibuprofen. I live with pain 24/7 and about the only thing that truly helps take the edge off is morphine and methadone and valium and a few others but I cannot afford all of them plus I realize that I must accept part of my pain and try not to walk around like a zombie. I have tried topomax but mostly everyone that I have talked to have had problems so I quit them.
All the best, maybe one of these days they will find a real medication for us that will not cause us problems.

My last post was june 25th. I am almost done with my second month on tomomax. So far the only side affect I have is a slight tingling of my one foot once in the evening. I haven't had any drastic weight loss. Would have liked that one. I did get real tired at first but worked my way through it. I have had to take imitrex 3 times in the last 2 months but that is way less than every other day so I am happy about that. So far I am happy with how this is working out. I have lived with migraine pain forever and it is wonderful not to have it all the time. I'll check back and tell you how it is going .

Well I thought I would let ya'll know my experience with this medication. I have found it to be my "godsend" medicine. I have had migraines since I was 11 and they were striking me almost everyday, causing me to miss work, among many other thing in my life. I tried many other medications and failed them all, so my doctor decided to try this one on for size. We got up to 100mg (50 at bedtime and 50 in the morning) and I have had all the side effects. The tingling in the hands and fingers where they feel like they are going to go numb, the "stupid feeling" where you have trouble finding words, decreased sweating, increase body temp, decrease in appetite (i lost 40 lbs.) and to top it all off guys, I have a history of kidney stones! Guess what? 3 months after starting this med I got an attack. Now I am having tests done to see the coorelation between the two as I have always had a high rate of stone disease. I will be on a couple of other meds to counteract the stone disease, and hopefully they won't interact with the topamax, because though I had all the side effects, they eventually went away for me. I still get a little of the numbness once in a while, but the rest went away...No more stupid feeling, or lack of sweat. I still have a loss of appetite, but I just make up for that with high calorie meals. I feel it was worth it as I am almost completely without headaches now and have been since starting it. Seeing the light of day through the dark I was used to. :d

i am doing a person with migraines who was on topopax then went off and now has been put back on, im in that stupid stage and dont the depressed stage I dont know how long ill last on it, here is my question, I am doing a little survey for myself anda friend who is a nuurse...I read about people who lose alot of weight on this med...It seems most have naturally dark hard,,i am a natural blonde and I have never lost one pound on this med,...Believe me I could lose alot does anyone know the answer to why this is...Thanks

I've been on this medication since june. 100mg a day and doing well so far. All the side affects have gone away. Except once in awhile I still get a tingling in my feet. But the feeling has gone away. One thing that has happen to me and I was wondering if it happen to any on else. I now to have nose bleeds. My blood pressure is ok because that's the first thing I checked. I suppose it could be just an allergy because of the time of the year september but I was just wondering if topomax could be the cause? Any one have any thoughts. Otherwise my headaches are almost gone. And what I do get go away way with acetaminophen.

Jenn -- I urge you to seek another opinion and ask about topomax. As with any drug, there are side effects different to every individual, but under a doctor's care, you should be fine. You can discontinue taking it if you have problems but topomax is quickly becoming the medication of choice for migraine relief. It bothers me that your doctor isn't open to it for you, unless you have other medical conditions you don't mention. Blood work every year keeps check on liver levels and appetite changes are rare. I suffered for more than 30 years with severe migraines. I tried everything, and I mean everything but nothing helped me. Since taking the topomax, I have been headache free for six years. Not just migraine free -- headache free. I don't even get the little headaches anymore. It is a pill I have to take every day for the rest of my life, but I don't even think about (or worry about) getting a migraine anymore. Special events aren't ruined because i'm in bed with an icepack on my eyes. Sick days aren't used up because I can't see straight from the pain. Topomax totally changed my life. Good luck to you.

The only problem I have had with topamax is that it decreased my sex drive a little. So I cut it back a little. I am not exactly sure if it works the same way on women as it does on men, but if so, keep an eye out.