Topamax and hands and feet

I have been on Topamax since Jan of 08 for complex partial seizures. I was very pleased with it at first but started having
some more unpleasant symptoms. My hair recently started falling out about two months ago in massive handfuls! I was
and am very upset about it. I did have the tingling in the hands and feet when I first started taking it and I don't drink sodas
at all which I did all the time before. I did not lose weight at first but did a couple of months ago when I got very ill with a GI
problem. I actually lost about 20 lbs in about a month. This is when my hair started falling out. I have had a lot of labs
drawn and my TSH was undetectable but my thyroid levels (T3 and T4 are normal) and my antibodies are normal as well so,
there is no telling what is going on?? I just want off of this medication before I am bald!!

I started right out 3 years ago on 100 mgs. and within a couple weeks migraines were virtually gone! I thought it was a miracle! Only slight side affects for a couple years and only an occasional migraine but not a three day long one. So, I figure, small price to pay for all that relief, right? Now, for the last 6 months or so I'm falling apart! My memory is just gone! Sometimes I'm afraid to leave my house because I'm afraid I'll forget my way back home! I can hardly concentrate long enough to put a meal together and it just took me 4 tries to remember how to spell concentrate! Thank Goodness for spellcheck! I've lost 42 lbs. that I can ill afford to lose and I now I have started to have these anxiety things that I've never had before. I feel scared and nervous and no idea why. I was on a couple of drugs for allergies, a couple for arthritis and a vitamin. I dropped everything except the Topamax and the DR. put me on a 1/2 mg. Zanax twice daily for anxiety which seems to do nothing except make me sleepy. Now it seems all these side affects have just bloomed and I have this constant ache over my right eye which isn't a migraine but never goes away. I'm afraid to just stop the topamax because of what I've read about suddenly stopping. Doctors are no help, they won't even admit there is a problem. They just wanted to check my thyroid.It was fine.

I have been on Topamax for 2 months and it has been horrible. I started at 25mg at bedtime and worked up to 50mg at night and 25 in the morning. I wish I never took it at all. I have had numerous migraines with the medication except now my tongue goes numb every time. I can't remember anything and I am in a fog all the time. I had to take a trip to the emergency room for tachycardia that occurs every time I stand. It goes up from normal to 166bpm. The cardiologist insists the Topamax is causing orhtostatic hypotension. I stopped all of the Topamax on Monday and it is now Saturday and I still feel horrible. Migraines are horrible but being stuck on your couch all the time because your hr increases sharply and you feel like you are going to pass out is worse. My hands and feet tingle all the time. I feel out of breath and I have always been very active. I now feel anxious all the time (never like this before). I feel like I am not myself and I am going crazy. I do not trust myself because I do not feel like myself. Has anyone else had these symptoms? Do they eventually go away? The cardiologist can't guarantee that they will ever go away.

My psychiatrist started me on Topamax 2 yrs ago for depression from being 75 lbs overweight. Started at 25 mg/day up to 50/day for 2 yrs. Lost 70 lbs and kept off with only minor side effects. Also took 150/day Wellbutrin during this time. (For being kind of a neat freak and washing my hands a lot.- didn't affect my social or work life much) Have slowly started gaining the weight back (+12 lbs). Seem to have built up an immune to the 50/day dosage over the 2 yrs. So he added 25 in the am in addition to the 50 I've been taking in the evening. (1 mo. ago) Having some strange reactions. My memory seems to be taking a real hit. I am a CPA (passed these exams 15 yrs ago) and now I'm studying for the Cert.'d Internal Auditor exams. I am having a great deal of trouble trying to memorize for these 12 hour long tests! I feel fatigued every day. My blurred vision (that requires reading glasses) has gone crazy. I can't read the song book at church at all. And I'm only 47!. I've had acne like bumps all around my nose and face. How could such a slight increase cause so much change? Also sometimes my heart feels like it is going to beat out of my chest. And I'm losing patience w/my 13 yr old son who's pushing my buttons to see how much he can get away with. He seems to sense that I'm not at my best. But if I go off this Topamax and gain back my 70 plds I know I will plunge into a DEEP depression. Has any one talked to their doctor about the possibility of these side effects going away after time? My tingling hands and feet did and my slight hair loss did. And my weight loss is trying to go away but I don't want that. I'm majorly concerned about the memory loss and blurred vision eventually going away. DALIAL

Hi I've been on topamax for 4 years . Had all the side effects...weight loss,tingling in hands and feet,no memory and speech problems! I was taking 600mgs a day! I take it for epilepsy! I was on the highest dose. my doc then weened me from top. to zonegran 600mgs. It's very similar to topamax. For me it is not helping me as much as the topamax. I think it's a great drug!!!! I did not loose hair, no constipation, no rapid heartbeat for me! I am going back on it . Yes sometimes I would get in a hostel mood and can't spell shit , but for me it's all GOOD !

I dont know if it has anything to do with Topamax but i think i may be doing some weird stuff in my sleep or not sleeping as much as i think i am. i would call it cat napping. other than that, the first 2 months were horrible. i had the numbness in the hands and feet and i could never find what i wanted to say and i would stutter and feel like a dope. the doctor told me to wait it out for awhile and sure enough, the worst of the side effects went away. I still have problems finding things to say and im a bit more spacier but my seizures and my headaches and everything that was wrong is gone. Overall. its all good. I would just like to know what the heck im doing in my sleep and if its ever happened to anyone else. Maybe i should call my doctor. hah.

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?

I've been on Topamax since Sept 2007 and the only side effects I have had were at the beginning were the tingling in the hands and feet when I was brining my dosage up. Soda tastes awful but I no longer drink it and that is a godsend after being a heavy drinker of it for years. I do find there are time when I can't find the right word to say, or I forget what I was doing, but I deal with it. I have lost 20 pounds since being on the medication. After being on it for 6 months the tingling is gone, I usually counteracted it by drinking plenty of water in the morning, that got rid of it. The drug has taken away the migraines, and regular headaches I have suffered from for years. It has also stabilized my moods and taken away my anxiety issues. I'm 36 and have never felt better. Topamax is definitely not for everyone. For those that are suffering, please do contact your doctors and try to get off the medication.

2 yrs ago I was diagnosed with peripheral neuropathy. I have been on Topamax since, because of the severe pain it causes. I have never experienced weight loss and I was on up to 400mg a night. I am now on 200mg a night. My tastes are fine and my drinking sodas were never like metal. But for the fatigue of the disease I also take Provigil in the morning. I have noticed my eyes have changed. Never gave it a thought to be Topamax. Plus I just got new glasses again 3 months ago and am seeing a change in my sight again. Also there is a noise in my ears,not ringing,but sounds like crickets. Never had that before. I was on 2 other meds but I took myself off of them because I really don't like taking so many. The others had worse side effects. Until they find a cure for this disease it looks like I'm stuck with Topamax. This is one pain I will not and can not live with.

I have been taking this for about two weeks and have just ramped up to 50 mg. I had a closed head injury last November and have been suffering from balance, headache and memory issues since. Doctor put me on Topamax for headaches and I have had the eye checks after experiencing eye pain but I was fine. Have had slight tingling in my feet and my right eye has been red off and on since starting. My right eye has also been constantly hard to focus.

I have read over and over that the side effects usually go away after about 8 weeks, so I'll see how it does till then. I'm still waiting to see if it helps my headaches, it hasn't yet.

It seems to have made my balance issues worse, and I am constantly dizzy now, although in Topamax's defense, I have been having more dizziness since my injury.

The spinny thingies that used to be there when I close my eyes are gone now, at least they have been since I started at 50 mg.

I'd say the most disconcerting issue I'm having is a feeling of being doped up and becoming more afraid of doing things, like driving a car.

This is my third time on Topamax...and I am weaning myself off again...The first time I loved it! I don't drink pop so I could care less about the taste issues. I suffered some tingling so I took Magnesium for that, some fatigue, low blood pressure, etc. But, due to a rapid weight loss (I was already small) and low blood pressure my doctors took me off. Then when I put some weight back on and the severe migraines persisted, I was put back on. Then, lots of tingling, dry eyes, fatigue, NO weight loss (apparently it only works the first time for loss) and weird vision disturbances and feeling dopey and not being able to talk, teach to type. So, I stopped again. Well, I can't live with the headaches, so on again. Well, it's been over 2 and a half years total now and I am just now beginning to see the real effects of this nasty medicine. I have been "sick" for over a year and no doc (10 total) can figure out what's wrong!!!! I have been researching a lot and come to the conclusion that it very well may be long-term use Topamax effects...45 lb. weight GAIN in a year and a half, constant nausea, severe fatigue, skin rashes, female infections non-stop, dry skin, lips and hair, dental issues, muscle and joint pain, pins and needles in feet, eye twitching, constant cold hands and feet, metallic smell to hands, body odor,insomnia the list goes on and on...Some of these I just noticed when my neuro (who thinks Topamax is the only cure!) upped my dosage again due to daily headaches and I started researching. I am currently weaning off of 150 mg. (100 at night and 50 in the am). I have been on up to 250 mg before. Although it used to help my headaches, the side effects are just too much to bare.

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 was prescribed Topamax with Wellbutrin in combination by a Psychiatrist to aid with an eating disorder. He told me how this was an "off-label" use of the drug and warned me about side effects like the tingling hands and feet, but assured me that drinking plenty of water and making sure that I get enough Potassium in my diet would be enough. He never once mentioned anything about my eyes.
When I picked up the medication, the Pharmacist went over the information and asked if I had questions. He did not once say anything about my eyes, vision, or glaucoma.
I started with 25mg on Dec 18, 2007 and went up to 50mg on Jan 9th, 2008. On Jan 26th, anytime I would stand up from a sitting position, I would get an intense pressure in my head, ears, and a very forceful pressure behind my eyes, and also rainbow circles popping up in my vision when I moved my eyes around. If I stood still and waited anywhere from 30seconds to 2minutes, the pressure would go away and I could function just fine until the next time I sat for more than 10-15minutes.
I called my Psychiatrist and he recommended that I drink more fluids and take a multi-vitamin. No mention of glaucoma.
The next day (yesterday), the same "head rush" was happening only it lasted longer and felt like a mini-migraine. I started looking online and WOW, there is info everywhere about the side effects.
I did not take the Topamax last night and this afternoon I have an appointment to see my eye doctor. I will also be looking for a new Psychiatrist. The way doctors are bribed to push meds is frightening.
The drug combo he prescribed really did help the way he said it would, but I would never have risked my eyesight!!!!!

I'm a 26 year old female and I've been on Topamax since March 2007. It has completely gotten rid of the debilitating headaches I experienced 3-6 times a week. It also got rid of my anxiety. I got my life back, my antidepressant kicked in at the same time. I experienced all the usual side-effects, tingling hands and feet, forgetting words, memory problems, loss of appetite, but was COMPLETELY pain-free. I still am. However, I never remember anything now, forget whether or not I did something, paid my bills, etc, lose things constantly, and I have lost about 20 lbs. Not good. I look anorexic. I have bones sticking out. Eating is hard. I forget to eat and drink all day and food is just unappealing. I feel fuzzy and stupid and slow. Not sharp like I used to be. It has killed my confidence and self-esteem. But I was wondering if any women out there got yeast infections while they were on Topamax. I've had one monthly since I started it, and my doc said it's a rare side effect. Oh yeah, I've had mild hair loss and mild to moderate acne now. This drug, it is such a 50-50. Living with chronic pain, those headaches were awful. But doubting yourself is awful too. Anyone have similar experiences?

I've been having breathing issues since last Sunday (so for one week now) and ended up in the emergency room yesterday because I was hyperventilating so bad at work, I nearly fainted. My lips, hands and feet were tingling. On the way to the hospital my hands, feet and lips became numb. Then my muscles started to cramp and I lost the feeling in my hands (at this point, I was struggling to hold it together and not cry, so I was having some anxiety as well). At the hospital, I had my lungs x-rayed, blood work, urine tested, and an ekg---all normal. They gave me some Ativan and said it was probably anxiety. I still couldn't breathe. I was anxious because I haven't been able to breathe properly for a week and no one has an answer for me! When I talk, I get winded. If I have to move around and talk at the same time, I am gasping for air. If you read the information sheet on Topamax, it can cause something called "metabolic acidosis" which can be quite dangerous. My blood work came back normal. You can have the pH of your blood tested to see if this is the case. If your pH is too low, then the you may be experiencing this. Read your Topamax literature. For me, I decided to take myself down to 50 mg from 75mg anyway, just to be on the safe side and hopefully, I'll here from my headache doctor tomorrow and will follow up with my internist on my own. It's very scary. Please be careful. Good luck to everyone. Oh, yes, and if I forget that I wrote this, it's the Topamax! :)

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!!!!!

Hi All, I am a 37 year old mother of 4, with a history of severe Hemiplegic migraines (up to 14 a month). I've been on Verapamil and Topamax for 7-8 months with a gradual increase of the Topamax to 150 mg a day. Before I start writing this I have to preface it with two things: First, Before Topamax I was one of those women my friends refer to as a "Supermom", I home school my kids and used to love it, we normally have a lot of fun and I have a successful, happy marriage. Second, on Topamax, I went from 14 migraines a month to 0. It didn't happen over night, they went away as we ramped up the dosage, but for the last few months I have had no migraines, I can feel it occasionally when my head is fighting one off, but nothing an Advil won't stop, and for those of us who've lived with trying to care for kids while having migraines (especially Hemiplegic) you may understand why I initially put up with the following: I started out with the tingling in my hands and feet (that went away in a couple of months), word finding difficulties (which never really went away, I just learned to accept it),occasional blurred vision which never lasts very long but which has been an issue the entire time I've been on the med, and weight loss ...I am 5'4" and was only 118 lbs to start with, and have nearly "disappeared" into a size 0 and 105 lbs, and it doesn't matter how much I eat, I've been trying 3 meals, snacks, cookies, candy, you name it, I can't gain weight. I was never nauseous, no diarrhea, I just don't get hungry... I had to start wearing a watch at one point to remind myself to feed the kids, because if they didn't ask, they weren't getting lunch until 2:00 because I wasn't getting hungry! Soda does taste like metal (fortunately I don't drink it normally anyway), and you do get loopy with one glass of anything alcoholic.
Then to add to the lovely appearance of skin and bones, my hair is falling out. Before Topamax I worked out regularly, I am even on commercials for my gym (recorded a year ago), since Topamax, I was so tired, depressed, and so afraid of losing weight that I stopped working out. Now a woman who has always made it a goal to set a good example for my daughters that a fit body is the goal, not a thin body, has her mother in law telling her that she looks "bulimic"! In August I noticed I was crying a lot, then I thought well, maybe it's the Topamax, so I started drinking more water and it went away... so I've been very careful to drink A LOT of water and only decaf tea while on this med, but apparently that wasn't enough, because a few weeks ago my husband pointed out that I stopped showering every day. I have been crying at the drop of a hat for a couple of months again, and I have never been someone to cry in public, I have even started crying in front of my daughters friends' mothers and near tears in front of her teacher over the littlest things... then last weekend I found myself with four hours to myself in my house for the first time in months and I was thinking about how I might be able to use it for unspeakable things like running away, or worse... if those aren't signs of a pretty severe depression I don't know what are, fortunately I recognized them and put them together with the memory problems, etc. As for the memory loss, there have been problems with that for months as well, my daughter has been telling me I "have a bad rememberer" , This weekend everything culminated and other people were recognizing the memory issues that I had been keeping private until now (including my husband). Before that, I would be in the kitchen cooking and forget what I was doing, I went to drive to a party this weekend and forgot where I was going, so I called a friends husband and he had to tell me four times where to go before I could retain it (at first he thought I was joking) and then I still couldn't remember the name of the place, only the # and street, I haven't been able to remember routes to places I used to drive... I'll find myself sitting at a light not sure where to go, and making mistakes with our money because I forgot whether I did or didn't pay a bill (something I've never done, we have always had excellent credit). On Topamax I went from feeling like an attractive, successful, good mom,with a happy family... to constantly stressed, even by things I had previously enjoyed doing, and a completely depressed failure... but I had no migraines. I have now been weaning off the Topamax for a few days. I was playing phone tag with my neurologist... so due to the urgency of the problem I took myself down to 100 mg a day. I have since spoken with my neurologist and I am going off of it completely... by the way don't ever discontinue this med without ramping off of it, doing so can cause a seizure. I am unbelievably grateful that I put 2 and 2 together the weekend I had time to myself and got lost going to the party and I already feel more awake, less tearful and depressed... I know that things will be ok anyway. I hope that anyone reading this who is having memory or emotional issues on Topamax and just brushing them aside (because they don't want to risk going back to the migraines or whatever), will get off this med. Please realize that this med could have cost me, my kids and my husband a lot more than my migraines ever will. I have never experienced depression before Topamax, and I can't say that I'm completely back to myself yet, but I hope that when I am off this med I will find normal again, and I pray it will be without migraines, but I know that I wouldn't wish these past few months that I've put myself and my family through on anyone. Now, I need to go take a shower :) , then I'm going to my neurologist to pick up some 25 mg samples to continue ramping off! Good luck to you all!

I've been on Topomax for about 3-4 months now. I've had memory loss, slurred speech, decreased concentration (I have to re-read something several times to understand it) tingling in the hands and feet, depression, increased anger, loss of appetite, weight loss. I'm now at the point where I have a rash on my leg, severe nausea, and abnormal bleeding. I going to follow up with my neuro and PCP to see what's going on so we'll see. My migraines have decreased from 3-4 a week to maybe 1 a week, so it has been worth it so far so I can function for work and for my kids as a single mother. I've suffered from migraines for about 10 years and can't take the pain no more!!! If anyone has experienced the nausea, rashes or bleeding please reply.

I have had migraines for 4 years almost on a daily basis and nothing has worked. Finally started Topamax, the first week iI felt like i had a stroke, my speech was slurred, I couldn't concentrate, I was exhausted couldn't make complete sentences, numbness in hands and feet and every thing tastes bad., I had been on 4 pills a days to start so decreased to one-i believe it it 50 mg. worked well then headaches began again after 2 weeks, so increased to 2 then again in a few weks to 3 now i have had only 3 migraines in 3 months. Still have the numbness and taste aversion but I have never felt better as far as migraines. My new problem is I am having a lot of digestive issues including cramping and constant acidy, bubbly,gassy, bloating feeling and no gas x, pepto or anything works??? Is this a side effect or something unrelated??

Taking Topamax for 2 years started out at 25 mgs 3 times a day for a mood stabalizer (bi-polar). Had tingling in hands and feet sometimes in face. Lost waight, pop tasts nasty, sleepy, short term memory loss, slurred speach. Now I take 100mg at bed time have no symptoms except I still am able to controll my eating (had a problem with over eating) no more road rage but I still felf a little depressed and did cry so I was not to stable until Citalopram 10mg at bedtime and Adderall XL 10mg in the morning was added. Now I finally feel like a totaly normal person. No more anxiety, mood swings, crying, paranoia,or any other weird stuff. I feel pretty good. Rarely I get pins and needles in my hands or feet or I forget where I put something.

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!!!

Chest pains, fatigue, mood swings, pins and needles feelings in hands and feet, nausea, depression, terrible terrible medication.....do not take this medicine.. I actutally sent a letter to the FDA telling them to re-evaluate this medication.

I have been taking topamax for 2 weeks and started having dizziness to the point of not being able to stand up. Has anyone else had this?

Hi Everyone,
I have been taking Topamax 25 mg for 1 week. I can't stand it. Today I am to up my dosage to 50 mg.I am not sure if I want to do that. The side effects suck.. I think I would rather just deal with my migraines, at least I know how to do that since I have had them for over 25 years. I have tried everything and nothing has worked so the Dr. and I thought we would give this a try.
I am trying to keep my place of employment happy with trying to cut down on the migraines but nothing works.
Most days I just want to give up.
Hopefully we will be able to figure something out.

I can't stand the pickhands and feet, the stumbling like I am drunk( and I dont' drink) nothing tastes right anymore, I have the shakes and I ache.
And all it does is makes me sleepy and like I am in another world.
I went to work today and made it half an hour before I came home because I stumbled and almost fell over. And when the boss talked to me it was like I wasn't there. So I came home. I don't know but I don't like it at all.

I've only been on Topamax for 3 weeks, and I am already wanting to get off of it. My doctor DID NOT tell me about all of the side effects, he told me the most common was the tingling in the hands and feet, which is so painful for me. I have lost the taste for carbonated beverages, which I only realized for myself by looking on a website that was caused by the medicine. My advice to anyone is to get a second opinion before going on this medicine. Now I have to wait until my doctor says its ok to stop taking it.

I have been on Topamax for approximately six weeks - 100 miligrams for migraine. I have to say that so far my side effects have been minimal and my results have been quite good. I am experiencing some parasthesia in my hands and feet - but it is transitory and mildly annoying at worst. I have found that a lot of foods don't taste very good - and I really only like highly flavorful things like fruits and vegetables. I don't enjoy anything fatty, starchy or sugary. I'd like to be able to complain about that - but let's get real - that's probably a good thing. I've lost about 20 pounds since I started on the Topamax, 20 pounds that I can easily afford to lose. I also find that I am quite thirsty. I was experiencing some tiredness, but by switching to dosing only at bedtime, I have minimized that side-effect. My appetite has diminshed a great deal. I am not noticing cognitive side effects. I have had two migraines since I started on the Topamax (I was having approxmitately 15-20 days a month of severe migraines before), but I was able to take 1/2 dose of Relpax, and the migraine was gone within a half an hour. Typically I woiuld have to take a whole dose, repeat the dose in 2 hours and still have a headache, and repeat for 3-5 days, so I am seeing a big difference in the incidence of my headaches. All-in-all I am feeling quite hopeful that the Topamax, for me, will be an excellent overall solution for something that has been quite debilitating.

my side effects : - Tingling hands and feet which are going away now, memory problems, word finding difficulties, speech problems, visual hallucinations. Mine ball of light flashing, red/orange colour lasting seconds, then also a white out line of doors or bjects or my body. ( even neurologist's are not aware of these visual problems and because they don't fit into the normal visual aura pattern they may think you are made. The drug company need to put out a visual hallucinatinatinations as a noted side effect. I'm taking Topamax 50mg twice a day for migraine for the last for months. It is only just now controling the migraine. I have lost 12lbs in weight.

I have been taking Topamax for approx. 16 months. I began with 25 mg at bedtime and have just a week ago worked up to 100 mg at bedtime. My Dr. was good to prepare me for some of the side effects so that I wouldn't freak out and want to discontinue the medication. I was having about 3-5 migraines a week. It was scary how much Imitrex/Phenergan I was taking just to be able to get through a day only to face another headache. When my Dr. offered me Topamax for "migraine prevention" and told me of possible side effects, he also told me that if I would work through them it would be worth it. He was right! I had tingling in my hands and feet at first that only lasted a few days. I had subtle hair loss after about 2 wks. The most noticable side effect that I've had has been how it has affected my concentration and memory. For the first month or two, I had a very hard time getting out the words I was trying to think of in a conversation and I would forget to do ordinary things. This has gotten back to normal!!!! I encourage you to hold on! The side effects aren't as bad as the headaches - at least not for me! My Dr. also told me that it was VERY important to drink LOTS OF WATER! I even noticed that when I would wake up in the morning and feel the tingling in my hands and feet - if I would drink a glass of water the tingling would get better. The higher the dosage of medicine the more the water; especially in hotter weather. I think my body doesn't sweat as much as it used to unless I drink plenty of WATER!
Just hang on - if you can - and know that you can decrease your dosage and take it easy until your body completely adjusts to that dosage and stay there a while (months) then increase a little more until you get to the goal dosage. That's what my Dr. and I have done. It has worked!!!!!!!!!!

I am a 62 yr old lady that was started on Topamax a little more than 2 yrs ago for migraines that were getting worse as I was aging. After the first "weaning on" period I have been taking 100mg a day at bedtime for the entire time. Initially, I had a lot of tingling in my hands and feet, but it subsided somewhat and never seemed like a big deal. The Topamax brought my migraines to a grinding halt. However, more recently I've noticed quite a number of new increasing symptoms that are bothersome and scary. Difficulty concentrating, a certain amount of confusion, and some eye pain that sometimes feels like pressure and my vision is blurry. My balance does not seem quite normal. I'm not really dizzy, but I have "missed" a step too many times lately. My mind functions do not seem all together "there". Normal functions like spelling, counting change, answering questions, like my address and phone number, aren't always easy especially if I'm under pressure or get upset. Backaches and joint pains are present, but since I have Degenerative Disc Disease it is hard to distinguish the source of the pain. The problem is I cannot determine if this is from the medication or if I am experiencing another kind problem. ? Most medications have side effects; however, if the benefits out weigh the (negative) side effects, it is worth it.

hi my daughter has been on topamax for 3 weeks she has had a back ache ever since she began her dosage which started at 25mg per day and increased to 100mg by week 3.
she suffers bipolar and so far have noticed a great improvement but no weight loss,plenty of tingreling in her hands and feet and also her lips.
does anyone have any aches and pains in their back?

Im only 16, and ive been on topamax for about 6 months. Im on it because i have epilepsy, and because of my headaches. Just recently in December i got put on 100mg and ive been noticing alot of hair loss. I also get alot of tingling in my hands and feet, sometime in other places. Sometimes it is really painful. Yesterday, i was wondering if hair loss was a side effect of Topamax so i decided to look it up on the internet and i found this website, and i read what everyone else had to say, and now im kind of scared to see if any thing else happens. I haven't had anything like Soda Pop tasting bad but yeah.

<3 Sarah :)

I was on Topamax for 3 weeks, and only got up to 75mg/day before insisting to be taken off it. I felt drunk all the time, couldn't concentrate or find the right words, my hands and feet were numb and tingly all the time, I had awful heartburn/belching for almost 3 weeks straight, I couldn't sleep, and was very nauseous all the time. I may have stuck it out a bit longer, but I had 5 migraines in 12 days, which was an increase in frequency compared to before taking the Topamax, so I didn't feel this drug was working for me. Today was my first drug-free day, and my head is so clear, it is just great! My feet are still tingly though, so I'm hoping that will go away soon...

My Dr. Prescribed Topamax for anxiety. I've tried all the other anxiety meds and nothing seemed to work. This one worked great for the anxiety. But the side effects are getting to me. I can take the tingling hands and feet. That actually happened it seemed non stop at first, but went away after about three months. The main problem I've had is the weight loss. I was at a good weight to begin with, 5'6" 130lbs. but after four months I'm down to 105lbs. I can't gain any weight no matter how hard I try because I'm constantly Nauseous. When I do get my appetite, I can only eat a quarter of what I used to before I get nauseous again. I also have found myself at a loss of words A LOT!!!!!! So, tomorrow I'm going to see if there's something else my Dr. can think of for me to try.

My Dr. Prescribed Topamax for anxiety. I've tried all the other anxiety meds and nothing seemed to work. This one worked great for the anxiety. But the side effects are getting to me. I can take the tingling hands and feet. That actually happened it seemed non stop at first, but went away after about three months. The main problem I've had is the weight loss. I was at a good weight to begin with, 5'6" 130lbs. but after four months I'm down to 105lbs. I can't gain any weight no matter how hard I try because I'm constantly Nauseous. When I do get my appetite, I can only eat a quarter of what I used to before I get nauseous again. I also have found myself at a loss of words A LOT!!!!!! So, tomorrow I'm going to see if there's something else my Dr. can think of for me to try. I was on Effexor which was good for anxiety, but the sexual side affects were terrible.... Gosh, what do I have to go through for a good love life??? lol

Just started, and reading all these post, eeeeekkkkkkkk. I have mig everyday, and just want help. Is there any one with a good experince on topamaz? I mean really? SHouldnt there be people that it help's?

I too was given topamax for my seizures and migraines. First side effect was the pins and needles in my hands and feet. Then the real horror started. I lost weight because I couldn't remember to eat. Then I couldn't remember anything-I would walk into a room and not remember how to leave. After about year of mental erasure, my family begged me to get off it. My doctor kept saying it was stress-his standard response.It's been two years now and there has been some improvement but no where near what I was before I started.I take no meds now, I still have seizures but they are easier to recover from than the meds!!

I am on topomax for bulimia. it has been amazing considering the fact that i have no appetite and diahhrea all the timeand my menstrual cycle is off. also, i have the tingling sensation in my hands and feet, which hasn't gone away in a month-isn't horrible, though. i wake up in the middle of the night and very early in the morning. (never had sleeping problems like this before). also, very thirsty all the time, dry mouth, but can't seem to drink enough fluids. however, this has medication seems to help my eating disorder like nothing else. i'm going to half my dosage and see if this continues to work. although the side effects are there, until i'm comfortable enough to do this on my own and not binge, this medication has been a a life saver for me! it's worth it b/c of the appetite suppressant issue. i have no urge to use symptoms at all.

I passed a kidney stone about 1 month ago & was told that I have another in each kidney. Have been on 200 mg Topamax/day for 3 years. Also they found a gall stone 2.5 cm when they did CT scan at ER. Just had it removed. They had to do a larger cut at the navel so they could get it out, it was so big. I've also been on Lexapro 20 mg/day.
My husband keeps telling me my back pain is a convenience pain and all in my head. I think between a gall stone that large and kidney stones I can rest assured the pain was not all in my head. Dr. put me on topamax for weight loss.
I feel that Drs. don't care, they are much too busy, you have to educate yourself. I passed a kidney stone 4 yrs ago so this Dr should have know not to put me on it.

Reading all of your your sx's was both heart-breaking and eye-opening. I have been on Topamax for 4 months--just moved up to 100 mgs in the hopes that the migraines would be defeated once and for all. So far, besides a week-long doozy that I think was actually a horrible manifestation of the stomach flu, the headaches have reduced themselves to about two times a month rather than averaging about every day. An improvement. Never-the-less, I still wrestle with the choice of the depression that has followed me like a black cloud since I began this therapy, and also the rage that can blow up out of nowhere, or the headaches. Quite a choice. I often wonder how my children will remember me. I'm not normally a moody, angry person, but since starting Topamax, you wouldn't know it! Not surprisingly, my doctor simply offers me an array of more prescriptions to add to the cocktail. I've had about enough. I too get the tingles in my hands and feet--especially if I've been sitting with my feet elevated--like in an easy chair. I'm getting good at ignoring it, though. It's actually quite painful! My face quit tingling after the first month. Words can still elude me at embarassing moments. So frustrating! I lack all ambition, and I must literally force myself to do anything--housework, exercise, take care of my children! Guilt, guilt, guilt! I'm so glad that so many of you mentioned that! I've been beating myself up about that particularly, wondering what in the heck was wrong with me! I could sleep all the time! I've lost about 8 pounds, and my appetite is satisfied very easily. Carbonated beverages don't taste horrible, exactly, they just don't taste good. So I've more or less quit drinking them. No loss. We spend less that way! As I read all the entries, one thing is very clear to me. We have got to be less passive in the hands of our doctors. No one knows too much about this drug. There are alternative forms of medicine that are being more actively explored by reputable practitioners. I am starting to research it more myself. I don't want to live out the rest of my days so...sad. And angry! Good luck to all of you.

On 200mg twice a day morning and evening about a year now for neuropothy(sorry about spelling). Hands and feet. Used neurontin for about 8 years and put on weight. topomax initially took off about 30 lbs. I weight 300 male. Anything carbonated tastes bad, beer soda etc. I prefer water, lemonade, tea, coffee. Now neurontin's patent is about to run out and the makers have come up withtheir subsitute which is Lyrica. Your dr will be suggesting you try this one. It works basically the same as neurontin, maybe just more potent so you take less and they have a new patent. Probably add the lbs too. It affects my sex life in that cannot seem toget to an orgasam as easily so I avoid it. Many drugs for my condition have this affect since they affect seratonin in the brain and thus have a bad affect on sex life of men who still want to be sexually active. Sorry to be so frank. Actually, the topomax does not help all that much with the pain I experience but I do not want to be too quick to switch drugs. Lyrica is still not available through insurance companies in this country although I here they are working on it.

I've been on Topamax for quite a while now, 400mg now. Learned some tricks for side effects. for tingling hands and feet, add a supplement of Zinc (50 mg) to your daily pill box. I swear by this. It will help with the tingling.

This was a new one for me. I have been on Topamax for about 10 weeks, and I'm taking 50 mg in the morning, and50 mg before bed. I get the usual side effects, tingling in hands and feet and soda tastes bad, I don't have ANY problems sleeping, but I have no energy. Anyway, today I was working out, I did about 15 minutes at a real easy pace on the elliptical trainer and I felt really sluggish, so I tried to run on the treadmill. I ran 1 mile at a 12 minute pace (which for me is a challenge) and I was so HOT I had to stop. I was burning up, but oddly, I was NOT SWEATING--at ALL. My skin was hot to the touch and bright red. I was probably very close to heat stroke. Make sure if you are on this medication, especially if you exercise, that you drink plenty of water. This has never happened before and I work out regularly, but it really scared the heck out of me.

I've been taking Topamax for a couple months now and am up to 200mg per day for both my Trigeminal Neuralgia (right sided facial nerve pain) and migraines that I was having 2-3 times a day. I now only have migraines 2-3 times a week which is so much better and my trigeminal neuralgia is under control, no pain as long as I take the medicine. I have frequent tingling of my hands and feet, I feel drowsy alot, but there are some times where I go one to three whole days when I can't sleep at all and I feel like a zombie and I'll even try taking tylenol PM to try to sleep but still can't. That is such a horrible feeling. When I finally do get some sleep, I'll sleep for like a whole day and night and then I am so relieved and back to normal. I used to love diet pop but now it just tastes totally bitter, so I pretty much just drink water which is good. I've lost about 8 pounds of weight and hope to lose more, sounds like others of you out there have lost some weight on this drug. Thats a good thing right? Like some of you out there, I also have that tip of the tongue thing where you know what you want to say but you can't say the words some times, and that is very frustrating. But on a positive note, I have friends that don't take anything and it happens to them too! I have had lasix surgery on my eyes and since being on Topamax, I have had to get some glasses and contact lenses for my eyes which is quite a frustration for me. I don't absolutely have to wear them, but things are just too blurry now if I don't wear them especially when I drive. Overall though, I am happy with the fact that my migraines are so much less frequent and I feel like I have a much better quality of life than before. I hope as time goes on my sleep patterns will even out, I have a feeling that they will. Good luck to all of you out there! ;-)

muscle weakness-dry mouth-hands and feet tingle-fatigue. Have been on Topamax for over 1 year and sx have subsided, mostly. Definitly memory problem involved here. Dr dc'd med because of extreem muscle spasms around lower rib cage area. We'll see...

I have tingling of course of hands and feet. I take it for bi-polar disorder. Every time my dose is increased i freak out as if i am tripping out or as if i am in a dream watching myself. I start to get very paraniod and cannot leave my house but of course i have to so i live in insanity until my body gets used to the new dose. if i forget or mess up and not take it for 2-3 days, i have to go through that process again. I am in between if this medication is worth it or not. It seems to make me more moody although I am taking it to control my moods but at the same time , it seems to help, i don't know i can't seem to keep a thought enough to know. I have lost weight and for that i am happy. I also get the shakes and high anxiety if around alot of people. I think these extreme side affects go away in time but I find with topamax that if I skip doses the effects are pretty extreme so I set a timer to make sure this does not happen.

I have have been taking topamax for about a year and i have had the tingling hands and feet. the facial tick around my eye I have that also. none of that bothers me, what does is the fact that I have a significant amount of hair loss. I used to have really thick hair and my hair has became very thin (no bald spots thank god). anyone else had hair loss or have any suggestions on how to fix it. I would appreciate any input.

I have been taking Topamax for one week now @50 mg a day. I am supposed to increase 25 mg every week until I am at 200 mg a day. This is being taken for migraines. I am now having tingling in my hands and feet and trouble falling asleep. Also one leg is starting to twitching when I try to fall sleep or just sit so I am afraid to increase my dose. I am calling my Dr. tomorrow but I have a feeling he will tell me to just "wait it out".
Can anyone tell me if it gets better after awhile or worse?

I have experience lack of concentration, weight gain, lack of motivation, inability to want to focus on my tasks at work...tingling in my hands and feet, twitching under the eye (tends to drive my co-workers crazy... they ask me if it hurts

I've had many side effects since starting Topamax, including extreme tiredness, tingles in my hands and feet, not being able to think clearly or remember things. Sleeping for 14 hours a day each time I bumped up my dose. Blessedly I have lost 13 lbs so far. The main issue I'm having and the question I have for you all is that I have this issue with a facial spasm or vibration that has been happening for about the past week or two since I've been on about 300mg. It feels like my face is actually moving but then I think I'm imagining it. If I touch my face very lightly with my hands however, I can actually feel my muscles twitching under my eyes, on my chin, above my brow. It's a very strange thing. Have anyone else ever had this happen???

Thanks in advance.
Whtdove