Topamax and numbness

Topamax is off label for weight loss. I was put on it after gaining about 35lbs from Seroquel. It took the weight off like it was supposed to. My dose has recently been stepped down because I'm back at my normal weight of 135 (I'm 5'11").

When I first started taking Topamax diet soda and other sugary things tasted really strange, which my doctor says he's never experienced before. I also had a numbness and tingling in my face and hands for about an hour or so after taking the pill for a while.

One more thing that I noticed about this drug is that while on it my vision went from perfect to needing to be corrected by glasses. I have read a few things about vision problems associated with Topamax but I am not sure if it caused my nearsightedness or not.

Thanks for letting me share my thoughts.
M.

I've been on Topamax for almost a year. I've had auras for years which were misdiagnosed as hypoglycemia episodes, then started having grand mals after detoxing from alcohol (I'm sober now), continued to have them in sobriety (I guess I messed up my brain from alcohol). I tried Tegretol but it made me groggy. Anyway, a few months into using Topamax I stopped sweating completely and got the numbness and tingling in my extremities, which drives me crazy. I also have trouble with urination, I've been put on water pills. I live in a desert climate and during the summer had bad problems with overheating, had to drink so much water that I had trouble with water retention and my electrolytes got messed up. I had no idea that it was the Topamax--the doctors put me through multiple blood tests, I discovered it might be the medicine by doing my own research online. I'm tapering off Topamax and trying the Low Glycemic Index Treatment to see if I can be off meds and not have auras because I don't want to be on seizure meds if I can help it. The withdrawal is pretty bad--anyone else have the problems with no sweating and wicked withdrawal?

I was only on 25 mg of Topamax for two months and had to stop due to the terrible side effects of mouth numbness, taste aversion and severe dry mouth. Unfortunately, the side effects have gotten worse and persisted now for six months after going off this medication. My personal thoughts: Topamax is the worst drug on the market, has negatively impacted my life, and my neurologist could care less. These symptoms are with me 24/7 and only mildly helped by expensive mouthwash and lozenges specially formulated for dry mouth. Actually, eating certain foods makes these symptoms worse and I am afraid this is permanent, but can find no scientifically plausible evidence to explain such lingering effects. If anybody else has experienced such long-term symptoms after going off this medication, please share.

I have been taking 300mg of Topamax BID for 4 years. I also am Taking 300mg of Lamictal BID. I have had all The same side effects that have been listed. I still get some numbness and tingling in my hands, feet or legs from time to time. The weight loss eventually leveled off for me. (My Dr. said that would happen). I lost 30lbs and gained 10lbs back. the confusion and memory loss was a big deal for me, but I had finally found a great combination of meds that controlled my seizures. I found B12 shots and no caffeine really helped keep my mind clear and gave me back my "verbal capacity" (you guys know what I mean).
Overall I think it's a great drug. It defiantly changed my life for the better.
I Tried 4 others before I tried Topamax.
Nothings gong to be perfect.
Jessica, Tampa,FL

Topamax may help some people, but for me it is poison and I've tried it twice! This second time around I tried it longer and went to higher dose. I'll just list the bad side effects that I had this time, although I had some of the same the first time. By the way, I took it for migraines. The first time a couple of years ago I was on 25 mg a day. Then, this time decided to try again since migraines were so bad thought I would give it another chance. I went from 25 mg to 100 mg a day slowly increasing as directed. The side effects started occurring right after the first couple of days, numbness in my hands, jaw area. Then sometimes numbness in my feet. Started to feel bloated in my stomach, waistband on pants a little tighter, and also noticed a little fluid retention in my fingers and ankles. I would forget a word here and there, or when typing, type the wrong word. Eventually it got so bad that I would sit there and think to myself, ok I know this is the right word but should I actually say it or type it? Friends thought I was in a bad mood when I wasn't. I would get very very quiet and I didn't want to leave the house. Thank goodness my husband was understanding. We knew it was the drug. And we knew I would stop taking it! Sometimes my back and sides would ache which is unusually for me, and I drank a lot of water. I lost my appetite completely but still did not lose weight at all like others say they do, if anything I think I gained in fluid retention. The skin on my ears started to burn and itch, then the skin on my face started to itch. I felt nauseous almost every day. I also felt like I was completely encased in cement, this is about the only way I can describe it. You just do not feel like yourself at all. You have that foggy brain feeling people mention. You know you don't feel like your normal self, but you feel so lousy you almost don't care. It's a scary feeling. This was all in one month, I figured I had given it a chance but that was it. Even with the warnings about seizures I quit taking it immediately. I would rather have migraines than have all of those side effects. Also I wonder what is it doing to your other vital organs if it can have those effects? For those who do not experience any of this, I'm glad, but I have to say very surprised.

I'm 20 years old and take Topamax for migraines. It works miracles as far as reducing the number of migraines i get. I went from 4 to 5 debilitating migraines every week- to maybe 1 or none. I'm supposed to be taking 75 mg a day but sometimes i only take 50 b/c the lack of concentration holds me back from doing every day things. Instead of feeling awake during the day, i feel like i'm walking through a dream. The dizziness is bad too. Sometimes when i go to stand up i get so dizzy i will actually fall into a wall or all the way to the ground. The scariest thing is when i'm driving and forget that i'm supposed to be driving. It only happens for maybe 30 seconds at a time but it's sort of like falling asleep with your eyes open and very scary --and very dangerous. At first i had all the numbness and tingling and weight loss as well but TRUST ME, that is NOT what you will care about. The worst side effects are d/t to memory loss, lack of concentration and dizziness.

Try a very low dose of this drug at first and continue with that for a while-maybe even months to see if it helps. I think anything over 50 mg seems to produce side effects that are too dangerous and not worth it!

I have been on Topamax for 2 1/2 years at 250mg for migraines and have decided to get off because of side effects. I have had all mentioned: mood swings, dehydration, not sweating,tingling, dizziness, loss for words, short term memory loss,numbness, fatigue, GI problems, anorexic weight loss,rage... And this all began from the starting 25mg dose!
The migraines decreased from 24 a month to 12, at best down to 6 or 7, but I seemed to hit a plateau then back to 15.
I saw three different doctors and all wanted to simply increase the Topamax or add another med (Depakote, beta blocker, etc.)
Finally, I found that a problem with my neck may be causing the headaches and treating that has reduced them enough for me to try and get off the Topamax. I still rely on the Relpax to get me through the bad days, but I'm hoping I can get free of the Topamax for good!
I just encourage anyone thinking of starting Topamax to investigate all possible migraine causes before starting!! Topamax doesn't cure the migraine, it only blocks the pain! And the side effects are not worth it if you can find another way to alleviate the problem!

I posted this on Mar 15th regarding my experience with Topamax...

I took Topamax for only 4 days. I ended up in the ER on Feb 22nd because I felt like I was going to pass out, getting dizzy, couldn't concentrate or think, numbness, rapid heart beat, shortness of breath and this was intensified by anxiety from all this stuff going on. I stopped taking it immediately. I have had episodes of these same side effects since then. I had these side effects last week and missed 3.5 days of work. I have been doing pretty good this week but today I had to leave work because the same side effects came back. I had to have someone come pick me up form the side of the interstate half way on my way home because it got so intense I could not drive. My doctors have done blood work and I am waiting for the results.

Since then, here is an updated on my side effects and what has been found by my doctors. I really hope this helps someone since this was very devastating for me. It got so bad I had to go on Medical Leave from work due to the side effects.

I had 10 tests run on my blood and tests and pictures done on my heart and everything checked out to be normal. Apparently since this medicine messes with the chemicals in your brain, it also has the capability of turning on anxiety, depression, panic attacks, etc. My primary care doctor, my neurologist, my cardiologist and a stated licensed counselor/therapist all have diagnosed me with anxiety leading up to panic attacks. Basically what I was told by my counselor was that my level of anxiety in my brain was turned on so high, it didn't know to come back down after I stopped the medicine. Now anything can set it off and it's quickly escalates into a panic attack without control. I was so bad that I was having anxiety/panic attacks about merging into traffic, going to work, going through the drive thru at McDonald's, going to WalMart and just anything in general. I started a medicine that controls anxiety and I have been on it for a week. Although I still get anxiety, I am able to control it and it's not escalating into the panic attacks. The best thing is with this type of medicine is that it can take "a couple of weeks" before it's built up into my system, so this should take care of it. I was advised with some counseling to learn how to control my anxiety and some medicine, this can be taken care of. I just have to allow my brain to get the levels of anxiety back down to normal levels and then I can eventually stop taking the medicine.

I started Topamax a month ago. My neurologist told me to start out taking 50mg in the morning and evening. I am a nurse and have read that this med needs to be started out on small doses and slowly increase every few days. When I questioned him about it, I was told that I should be fine. Although I did not follow his directions and start out small and increase it every 3 days. After about a week I was on the full dose of 100mg daily. All carbonated drinks tasted flat, I was having a funny taste in my mouth, and I was sleeping more. Within the past week, I have been having numbness in my hands and feet to the point that my hands go completely numb. The tighter I tried to grip something, the worse it got. I also am having severe dizziness. I am unable to stand and walk without feeling like I'm going to get sick and fall. Forget trying to drive. I work 45 mins away and have no other option on getting to work. During the time that I have started to have the dizziness, I have also noticed a drop in my blood pressure. I do not even have to be standing or moving to have the vertigo start, I can be laying down. When I called the Dr, I was told to abruptly stop the med. No weaning. Everything I can pretty much deal with but, my main concern is the severe vertigo (dizziness) and low blood pressure. Is anyone else having this issue?

hi started my topamax 25 mg at bedtime i take it for migranes been top for 3 weeks now i have noticed side effects however iam taking other meds and im having trouble distinguishing which side effect goes with what lol ..e.g.. paxil for anxiety , panic attacks and HYDROCHLOROTHIAZIDE for borderline blood pressure , i have experienced the tingling in the hands and the feet ..lack of appt,i wouldn't say my desire for sex is gone but im experiencing vaginal dryness and itching and numbness as well as problems climaxing sorry tmi lol ... thought it was a yeast infection but its kinda different? any girls ever exp that before while on top? im getting scared now reading the post about loss of hair im already very thin and have little hair as it is any help or suggestions would be great thx ...

I take 200mg a day (100mg in the morning and 100mg at night) for seizures. It has been my miracle drug. Granted the side effects were awful. But I did my research before starting it again. I had taken it previously for migraines and couldn't tolerate it. If you take the appropriate vitamins while taking it you can help to alleviate a lot of the side effects that you may have. Topomax can absorb some critical vitamins out of your body which causes some of the side effects. The vitamins that I take are: a high dosage of a Super B Complex (tingling, numbness, fatigue, speech). L-Carnitine (memory loss), Biotin (hair and skin). There is another website with postings similar to this which is where I discovered other patients taking Topomax that had discovered using the vitamins helped. Once I got on a good regimen of vitamins it made a big difference. I still experienced and am experiencing weight loss (but I just had a baby) so I am not really upset about that. LOL Anyways, I hope that information helps someone out there. It sure did help me. If I can find the research link that had the vitamin listing that it depreciates I will post it.

I took Topamax for only 4 days. I ended up in the ER on Feb 22nd because I felt like I was going to pass out, getting dizzy, couldn't concentrate or think, numbness, rapid heart beat, shortness of breath and this was intensified by anxiety from all this stuff going on. I stopped taking it immediately. I have had episodes of these same side effects since then. I had these side effects last week and missed 3.5 days of work. I have been doing pretty good this week but today I had to leave work because the same side effects came back. I had to have someone come pick me up form the side of the interstate half way on my way home because it got so intense I could not drive. My doctors have done blood work and I am waiting for the results.

I was doing just fine taking 50 mg of Topamax but I was still having minor headaches. My doctor said to go to a neurologist because there may be a tumor to worry about. He doubled my morning dosage and added an evening dosage so now I am taking 200 mg. a day. I started the insanity on Friday. By Monday i went grocery shopping and couldn't remember what I was shopping for. Thank God i brought my husband with me...when I could remember that he was with me. And then when I remembered to ask him what we came for I needed to remember where it was. Upon returning home I offered to help my 7 year old grand daughter with her spelling homework. Do you how embarrassing it is to not remember how to spell first grade spelling words? Tuesday was Mardi Gras and we went to the movies so I was saved any further mind questions. Then along comes Wednesday and I returned to work. Well, I tried to get to work. I got lost. Here I was at Walgreen's trying to figure out what I was doing out at 6:00 in the morning. What day was it? The looks on other's faces when you ask them these question is not something funny. So, I get back in my car and aim in the direction I hope is work. Luckily, I remember where I habitually stop for breakfast. My memory comes back again and I make it to work. I am on time and all is well. Now, the day begins.

I haven't had a period since December. Here it is February. And no, I am NOT pregnant. I can't concentrate. I ate 2 chicken nuggets for lunch and am full (now that is a healthy lunch, huh?). I was addicted to Dr. Pepper and now can't even stand the smell of it. I can't walk and chew gum at the same time. I found a note that I wrote sometime yesterday that really scares me because I don't remember writing it. It says, " Headache @ 1:55 no known trigger jut sudden movement to pick up papers from bin over desk. Nausea as well. Need to go to sleep forever." Good feeling to have? Depression is kicking in.

I just called my doctor and he says decrease the medication down to 100 mg. Ummmm...How about I decrease it down to 0 mg and I take a Imitrex or 2 and a hot bath with a nap when I get home and live to see my grandchildren grow old! I think living with a migraine or 50 is far better than what I have been feeling this past week.

If anyone can tell me that it gets better in less than 2 weeks I will stay with it but 1 more week of this and I will be a patient in a mental hospital. I can't even play Nintendo with my grandson...NOW THAT IS DEPRESSING!

I had been dealing with numbness in my hands and feet for about a month (I've been on Topamax for maybe 2 months now, maybe 1.5 months...) and I am happy to deal with that. Anything is better than the migraines that I had, and anything is better than waiting for the next migraine to start.

But for the past few days, I have been dealing with a total shortness of breath. It's like I can't catch my breath, in a way... or, as my mom put it, can't really get a "fulfilling" breath. I am constantly yawning, but that's how I am getting to that deep breath, although it takes me 3 or 4 tries to get there. It's frustrating, and SCARY!

I called the Topamax number today, and the nurse said that the side effects should only last 3 months total, but 1.5 more months of this?! I can barely imagine 1.5 more hours!!!!!

I have only been on Topamax for a couple of weeks now and it seems I've had every side effect known to man. It is not a boring drug. I've had all the ones you hear about--the fuzzy tingling/numbness in my feet and fingers, stomach cramps/nausea/disinterest in food that comes and goes, and sleeplessness. Sometimes I get this bizarre, creeping sensation that a hair is on this one part of my nose and I can't get it off, a bad weighted, heavy, weak feeling that comes over me about an hour or two after I take the pill, some dizzy moments and even some balance issues. I've had insane cotton mouth since taking the pill and just the last several days my eyes have been so dry it feels like tiny shop vacs are attached to my eye balls. I'm relieved this is maybe a common symptom because I had not read that one and I'm overly paranoid about my eyes because my doctor scared me to death talking about all of the potential rare side effects, such as glaucoma. I have no idea how to know whether what I am feeling is an early symptom of glaucoma versus dry eyes but I believe it is simply dry eyes. It seems logical is you have cotton mouth you'd have dry eyes. Does anyone know how common this is and does anyone have a great drop?

I was put on Topamax around thanksgiving time 07 for Bipolar disorder. Over a week my dose was raised to 100mg/day. Immediately I began experiencing muscle cramps in my Legs that were intermittent. It wasn't too severe so I decided to give it time. Also, I was an inpatient at a Psych facility when I was put on Topamax and was also placed on a few other things at the same time. Recently, the pains in the legs have become severe and I have been getting pains in my arms as well. In addition to this I have been getting tingling in my face and hands and numbness in my throat. It has been difficult to breathe at time, especially if I really relax, then I suddenly realize that I am not breathing at times. My eyes feel like they are going to pop out of there sockets. I tried talking to my Psychiatrist and was told to go to the ER. At the ER I was told to goto my Psychiatrist. No one will listen to me!!! Finally yesterday I decided to take myself off of the Topamax. It's hard to tell if things are any better yet and I imagine it will take time. I have noticed what I believe to be improvements though. I guess the moral of this story is sometimes you have to use your own brain and do what you know is right for you.

I have been taking Topamax (25mg twice a day) for about 2 years now and it has greatly improved the frequency and intensity of my migraines. (I used to have a minimum of 4 migraines per week, and though medications such as Immitrex and Zomig often work, it's still hard to function properly when you have so many headaches. The Topamax has brought that number down to about 1 per week.) The side effects are not too bad, but I am freezing all the time and very tired - complete lack of energy. I almost feel like my head is in a cotton ball, like everything is just slightly fuzzy and I'm a bit disconnected. I wouldn't call it feeling stupid though... I am still able to do my job well; perhaps a slight lack of concentration. Some dizziness, but nothing serious. I have recently started experiencing weight gain, rather than weight loss (not sure if this is related to the Topamax). When I first started taking the medication, I also had that horrible numbness in the tips of my fingers, but that went away.
I wouldn't want to give up Topamax now, because I just can't go back to having that kind of pain and vomiting 4 to 5 times per week.
Good luck to everyone!

I have been on Topamax for two years had most of the side effects I am used to them. The only thing is I am freezing all the time . Anyone have this?? I am cold all the time!!! I also experiance, in the summer, the no sweating thing, that makes me dizzy in the sun, I have to stay under an umbrella at the beach etc. I never had to do this , I was always a sun worshiper and could take it.

I started taking Topamax 2 days ago and I have already noticed side effects..such as the flat soda...numbness in my arms and face at night...BUT the worst part are the morbid thoughts at night ( I take only 25 mg at night) I have the most bizarre dreams and I wake up feeling like I havent slept for days. I am taking it due to severe migraines which result in seizures. I am horrified after reading some of the posts here. I am wondering if anyone started out with any of these side effects and then as their body became accustomed to the medication did they pass?

I have been a migraine sufferer for over 13 years and have run the gammut of medications to prevent and deal with them. My mother took Topamax a couple of years ago with disastrous results. I didn't realize, but I guess she was so loopy and forgetful that it was enough to cause my grandmother and stepfather to perfom an "intervention" to get her off of it. So, here I am a couple years later starting it myself, wondering if the side effects are worth the trade off. I'll be honest and say that I love Coke. I mean, loved. Carbonated drinks of all ethnicities taste like slimy metal now. How disappointing. And considering that if I went a day without drinking a Coke, I would get a wicked migraine, I've resorted to putting Crystal Light Energy (Wild Strawberry) in my water to give me the needed caffeine.

I've also noted tingling in my face, kinda like numbness. Nothing that is earth-shattering, but noticeable. I get dizzy a lot. I've also lost about 5 lbs since starting the medicine. And today, I could not find the word "prescription" in my mental warehouse. Not a difficult word on a normal day. I've only been on Topamax for a week though. I'm going to give it a good month to see if the side effects dissipate. But if I get any stupider, I'm going to have to go another route.

I too had chest pains!! That is something that they do no tell you.

This medication definitely needs to be re-evaluated by the FDA, to determine what damage it may do to your heart.

I was already seeing a psychiatrist for Panic disorder so I had valium at home. However, I still ended up in the ER for my chest pains after getting no call back from my dr for two weeks telling her that I was having all of the other side effects ( except the hair loss), tingling in the hands and feet, fatigue, moodiness, different tastes of things, especially colas.

Nevertheless, I was diagnosed at the ER with having a panic attack....DUHHHH, how could I possibly be having a panic attack when I had taken about 2 1/2 10 mg valium to try to get my chest to stop hurting. I explained to the ER dr. that I had started taking the topamax 3 weeks prior...There absolutely needs to be better education of this drug and its terrible side effects!!!

I have been on 100 mg of topamax twice a day now for over three years. Most of the early side effects have worn off like soda tasting bad and the memory loss. I never had any hair loss. Also the weight loss has stopped and I did gain it back which really stinks. Anyway, the reason I was looking, was that in the last several weeks, I have been suffering horrible body aches and joint pain. My hands and knees hurt very badly. I am 39 years old and hate to think that arthritis has set in so quickly. And I know that I can't have the flu with no other symptoms and so often. Does anyone else have these symptoms? Also I wonder why these could have started after so many years of taking it.I have tried to wean myself off in the past and the migrains came back full force.

I have been on Topamax for almost 2 years. I have been on 150mg since July 2006 when my migraines started changing and getting worse. I started having tingling/numbness under my right eye (also where my migraines are concentrated). I also started having fuzzyness around objects. I describe it as someone putting a water droplet in the middle of my right eye. I was wondering if anyone else has had this? My doctor is sending me to an opthomologist for "ocular migraines". The 150mg helped until around Dec. '06 and the migraines and eye issues came back. I am wondering if some of my problems are the Topamax?

I have been on Topamax for 1 1/2 yrs. I woke w/migraines daily! I am now migraine free, except sometimes when it rains?? I am so torn......The Topamax has made me "Stupid", my feet tingle, no sex drive,(husband NOT happy!!) totally unorganized, I feel sad for no reason, vision a little blurry. But hey, I lost 10lbs & I am not in PAIN!!!!! I am now NUMB??I take 100mg./day. 2 am & 2 pm. Should I cut back??Anyone try anything else that works?? Which is the lesser of the 2 evils.......Pain or Numbness????

My husband has been taking Topomax for a year along with Wellbutrin and Lamictal for Bipolar 2. He also has the often tingling, he describes it as crawling bees, on his feet, numbness in his hands. He bruises very easily now, and the worst symptom is the chronic muscle bursitis and joint aches. We were'nt sure at first, but after every test in the book came back negative, and realizing the pain started when the drug was started, he is finally off of the drug and the pain...unfortunately, the mental symptoms may soon reoccur. Has anyone else dealt with this?

I've been on Topamax for almost a year and a half now. I'm up to 300mg a day. My worst side effects are extreme tiredness, aches and pains, memory loss, poor concentration, tingling, and numbness in my face. I take it for migraine prevention, only it doesn't prevent them, it just keeps them from happening so often. I'd hate to see what would happen if I came off of it now. Depression is an issue too. I take Zoloft for that. Just hang in there and try to stay healthy. Shel

feeling you have tons of cash to spend on everyone...doc told me to becareful ..of being too gracious...lol feeling of numbness of adults behavior but love being around my grand children. really dislike my husband even more now. but something stops me from being unkind like i used to be.. am having suicidal thoughts now.

After reading these horrific side effects, I am not alone. I have only began taking topamax 25 mgs once a day and then I am suppose to increase it to 200 mgs. in a month which I am not sure I am ready to do that. I take it for migranes, I have had tingling in my feet and numbness in my hands, sleeplessness and loss of appetite. But I feel that I am getting better even though I am suppose to increase he dose next week, I am not so sure what I am going to do yet. Any siggestions?? I am going to call the doctor but then again it is not really his call , it is mine, do I want to live with the headaches? or can i stand the side effects until my body gets use to the medication?

I am amazed reading these side effects. they sound just like me. I have been on Topamax for years. I started out on 25 mg and now I am taking 200mg daily. I have had migraines for 14 yrs.

I have had most of the side effects, i have lost weight, in fact I cannot to this day put on weight! I am 5'3 and only weigh 105 lbs. I have experienced the numbness in my hand, but it was only in my right hand. In fact it use to cause such bad tremors I could not write at times. I had to eventually get a check card, because I would be in public at times and not be able to write out a check. I would never know when it was going to hit.

I have also had memory loss and confusion. I have had to quit my job and I am tired all the time.

I have also had blurred vision, and now I am having problems driving at night.

i was on topamax for migraines. I took it for 8 months . I had alot of side effects .Loss of taste tingling. numbness, sleepy all day long.crazy dreams depression. That is just a few and to top it off I lost my appetite and only lost 7 pounds. Thanks, Shellbug NC

Loss of taste; numbness of end of tongue; orthostatic hypotension. Taking the drug for TMJ pain in upper and lower teeth.