Topamax and topamax

I've only been on topamax for about a month and a half and already I'm feeling some interesting side effects. In the first week of taking the medication I had such pressure behind my left eye I thought it was going to pop. It eventually went away and has not come back (thank the Lord). I also experienced some pretty nasty numbness, tingling, and uncomfortable pins and needles in my fingertips and toes/sole of my foot. The tingling in my hands usually lasted a few hours and the tingling in my feet only lasted for a couple of minutes. This tingling is never predictable.

Eventually the tingles went away and I was tingle free for a while. But in the past few days they came back. It actually coincided with my PMS. The tingles came back and with intensity about three days before my period started. I was wondering if it was common to have a side effect return or increase in intensity around your menstrual cycle? My hormones are pretty nutty and the reason I'm on topamax is to stop severe migraine auras and slight seizures that are tied to my menstrual cycle.

The feet tingles are the worst. It feels like I'm being jabbed with needles and I hate when it happens while I'm sleeping because it wakes me up and I can't fall back asleep again until they go away... they are that irritating. The hands I can deal with because I'm used to my left arm going numb when I was having the auras.

My sleep patterns have been disturbed because of topamax... I'm not too peeved about that. I still manage to get enough sleep. However there are times when I'm out with friends or having conversations and I'll know the word I want to say and I'll just bust out the wrong one. Like for example saying symphony instead of sympathy. My friends have gotten used to it and know what I'm trying to say. It cracks them up when my word salad produces sexual innuendos on accident when I really mean something else. BUT it's really messing up job interviews at the moment. I'm a bright and articulate person who is getting her BA in Anthroplogy and Archaeology, minor in History and am trying to get research assistant jobs at museums and universities. It's really hard to get a job when you are sitting there sounding like an uneducated moron high on crack.

I haven't had problems with memory, thank the Lord. Even though I've got the word salad going on (and it's strange... the word jumbles are only when I'm speaking... I'm super coherent when typing) I'm not forgetful. I was able to make it through finals week perfect, while juggling a full work load. I hope I don't start losing my memory.

I haven't lost any weight (AW SHUCKS!!!!!). I was looking forward to that one. How soon should I expect to lose weight by, if I do in fact lose weight? I'm a difficult duck when it comes to weight loss. I've been at a stable weight since I was 13. I'm an athlete so my body is my temple sort of thing. But in the past two years I've put on a little bit of unwanted weight in certain areas when I stopped hitting the weight machines :( My question is, if I haven't lost it yet... will I lose any?

I'm also classified as type II bipolar, obsessive compulsive, and anxiety disordered. I've noticed my mood has stabilized. I'm not as all over the place as I used to be. My highs could get pretty high and when they would get up there my obsessive compulsive would almost go on a little joy ride. And when I was low, I was super low and my anxiety would take the depression out for a spin. But now I feel a calmness and a zen that I never felt previously. It's not an apathy I can certainly tell you that. I feel like I am in control of my life. I thank topamax for that.

Reading all of these posts I just worry that the honeymoon period of my medication maybe over. I worry about other side effects cropping up. I think that I can deal with my tingling extremities and that I can manage my word salads. I don't want the pressure in my eye to come back. I also don't want to start exhibiting the other side effects. What is the possibility that I will start exhibiting more side effects or are you generally stuck with what initially presents in the first month or so? My doctor also does NOT intend on increase my dosage. He thinks 50mg once a day will do me just fine. Oh and one last question, anyone else experiencing the side effect increase coinciding with PMS?

Sorry for the super long post! All replies are welcome!

I have been on Topamax for about two years for migraines, and was very pleased that after the first month or two, most of the noticeable side effects (dizziness, flat-tasting soda, etc.) disappeared, and the Topamax has been very effective in cutting my migraines in half. However, I've recently begun to question whether other health problems I've been experiencing are actually Topamax side effects and I just didn't realize it.

The first is intermittent stomach troubles that have been ongoing for the last year. Starting last January, I started experiencing diarrhea, stomach pain, and other persistent gastrointestinal problems, and through online research, I decided that it was probably either a spastic colon or Irritable Bowel Syndrome. I lost 15-20 lbs. in the spring and summer, but the problems would always recede before I took them to my doctor, then resurface just long enough to irritate me before disappearing again. It never occurred to me until recently that these could be Topamax side effects.

The other possible side effect that I assumed was an unrelated problem is interruptions to my sleep pattern. I have been experiencing some occasional bouts of sleep paralysis, and which researching this, read that in normal sleep patterns, one is supposed to enter REM sleep (when dreaming occurs) after about 90 minutes. I frequently enter into dream sleep in as short as a 20-30 minute nap, which does not seem to be normal. Again, researching this, the only two explanations that came up were narcolepsy, which I obviously do not have, and that my normal sleep patterns are being interrupted "by medication." So I'm back to wondering if it's the Topamax. Has anyone experienced similar sleep symptoms?

I recently increased my dosage from 25 mg to 50 mg and noticed my hair has been falling out. I just feel tired all the time. I thought I was going crazy until I read this site! I will talk to my doctor very soon. I did not think there would be problems with a "low" dose.

i was put on topamax for migraines back in aug 07.

well, i stopped it like 5 months ago. (2june 08) i still feel "out of it" like i'm here but im not. headaches came back but i would rather deal with them than all these side effects. i got severe panic attacks and nervousness, MAJOR HAIR LOSS, AGORAPHOBIA (FEAR OF LEAVING MY HOUSE CUZ IM SCARED TO HAVE ANOTHER PANIC ATTACK), i constantly feel dispatched from my family (i have 3 boys and a husband) every day i feel sick or tired, or both. which led me to stop the meds. (25mg am and 25-50mg pm) i weaned off over like 2 weeks (on my own cuz the neuro told me not to stop it and its all in my head.

i had to quit my job cuz of the panic attacks that just happen for no reason.

i still feel all the side effects even though i have been off topamax. hair loss, panic attacks, depression, "high" feeling all the time, cant hold a normal conversation. i have changed soooo dramatically from when i first went to the neuro and started this HORRIBLE DRUG. poor concentration, i don't feel like i want to be involved in anything- i just wanna lay on the couch with an ice pack on my head. i don't know what to do. my neuro doesn't know i stopped the drug and i was so mad at him for putting me on it that i didn't go to my last appt. now i have to wait until January to see him.

I am a 21 year old female and have been on Topamax since October of 2006. I am up to taking 250mgs a day having a constant headache and getting a migraine about every week. I have had such a range of side effects and symptoms that I can't tell the difference nor know where to begin. The most recent is muscle spasms in my eye lid and leg that won't go away. I have spasms infrequently all over, but these have been pretty constant. I also tire very easily though I always get 8 hours of sleep a night. Though those are not always 8 full hours of sleep, because I do have boughts of insomnia. I have also dealt with the intestinal problems to the point of thinking that I had appendicitis. I have had multiple trips to the hospital for abdominal pain and severe migraines. I have had the vision problems - blurred, dizziness, vertigo, and the weird one were my eyes jerk back and forth. I rarely have all at once and they have come and gone throughout the 2 years, but they have come back

I think the most mysterious one of all are the lypomahs - these little painful nodules under the skin that just appeared. They are mostly on my abdomen, but have found them on my chest as well. Any one else heard of this?

Nov 5 2008
I have been taking topamax since april of 2008, about 6 months now. Just recently I was increased from 50mg to 75mg for my migraines. I have short term memory loss, nausea, no appetite at all, shortness of breath, trouble sleeping, and all of a sudden terrible anxiety and panic attacks which started out of no where. I feel like my heart is beating out of my chest and I am going to die. It is horrible I cant stand it. I went to the ER and got the standard tests and they said my heart was fine and to follow up with my regular Doctor. No matter what I do I cant calm my self down it is just aweful. I am not sure I can live with these side effects, its too muc

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 recently started taking topamax for migraines. After increasing my dose to 75 mg twice a day, I am almost migraine free. However, my hair is extremely oily and having to wash it with a clarifying shampoo twice a day. Nothing else has changed other than my this medication so I am assuming it is a side effect of the Topamax. Has anybody else experienced this?

Hi all...I've been taking 25mg. of Topamax at night for 5 days now. Unlike most of you I have not experienced the tingling in the extremities or the weird taste in the mouth or even much tiredness at all other than what has happened as a result of my weird side effect. I was prescribed Topamax by my neurologist for my migraines. I've had them since I was 12 years old. I'm 49 years old. The got worse during peri-menopause which is kinda normal given the hormonal fluctuations, but was told by my neurologist that they would very likely subside significantly when I became menopausal. Well folks, I've been menopausal for 5 years and for the past 2 years my migraines have been the most horrific of my life. I have approx. 15 to 18 migraine days a month, some of the headaches lasting 3 bloody days. So it comes to this...Topamax. In the past I have suffered some pretty rare side effects from some very benign medications so I guess I shouldn't really be surprised that this is happening to me now. The first night I took it I slept like a baby. The second night I was slightly 'hyper' but managed to get to sleep. But for the past 3 nights it's been hell. When I lie down in bed, my body feels as though there are electric currents shooting through it and coming out my right leg. I have to move my right leg or go completely bonkers. Fortunately my daughter is away at university and so I can sleep in her room. So I lie there...on my left side...with my right leg hanging over the side of the bed swinging and swinging and swinging as hard as I can just so that I don't scream. It's awful. Last night was the worst. I saw dawn this morning. I just got off the phone with my pharmacist and he told me that I had described a classic case of RLS - Restless Leg Syndrome. And guess what? Topamax is used to trest RLS!! For bleep's sake! So nice people I am suffering a completely opposite side effect to the one that seems to be the most common one...tiredness. Has anyone else heard of this? Experienced this? It seems to all focus down to my right hip and leg. I have to move it vigourously or go nuts. I am so tired today but that's because I got like 3 hours sleep. I fell asleep from sheer exhaustion after my husband left for work at 7:30am.
A side note...I also take 75mg of Effexor for panic disorder and my neurologist told me that this is a very good mix of meds for migraine prevention. My top dosage for the Topamax will be 75mg taken at night.
I'd really appreciate any feedback on my side effect. Thanks in advance.

D.

I've been on Topamax for 3 years for migraine and it works most of the time. I am currently having a hard time with the usual side effects of memory loss, hair loss, word recall problems, coldness, depression, no sex drive, and am developing a cough. BUT I had a side effect that has not been mentioned when I first started taking it (25 mg in am and pm -- I'm now on 50mg in am and pm).
For about 2 weeks, I would get in my car to go to work and miss my turns because they would cognitively come up too soon (this is after 15 years of going to work the same way everyday). I had to be extremely conscious of my surroundings when I drove or I'd miss all my normal turns. I got lost in my own neighborhood once going home. At work, I'd get up from my desk to go to a co-worker's desk and arrive there amazing fast to my mind. I was experiencing time/space/distance distortion. It became fascinating to me, but it passed.

This is my second time to use Topamax and I am having a different side affect now. I am getting very hot and breaking out in cold chills at the same time. The top of my head was so hot yesterday I had to wet it before I came to work. Has anyone been having problems like this? It says decreased sweating but mine is the opposite.I have the increased body temp. I thinkl.

I just got off topamax after being on 800 mg/day for over a year. Unlike most of you, I used it to treat seizures. Because of the side effects (slurred speech, bad memory, and NO sex drive) my doctor to switched me to Lamictal.

After just one week, my sex drive is back to normal, my memory is better, and I'm more confident in my speech.

Topamax makes things taste yucky!! things like soda, beer, etc. And I've typed a whole report before or listed something on ebay and only looked back later and called myself a STUPIDAS# because of all the misspelled words- should of used spell check- which if you take Topamax make sure your spellcheck is on! Don't know why but the med will slurr your speech and brain. I do still get the occasional migraines while taking it so I'll stop it, plus tired of the spelling probs I have while on it. But my doc says I should be persistent with it, just like everything else out there... there's always a price to pay! Other than that, no side effects like stomach pain or weight loss like I've heard in others. Oh but it will make you tired..especially at first..very tired!

I was started on Topamax late 2007 after a week long migraine that did not respond to my usual migraine medication, Relpax 40mg and Xanax 1mg and I needed the second dose 2 hours later. I was given samples of Topamax 25 mg with a schedule to slowly increase the dose. The first 3 days I noticed an improvement in my migraine. By the 4th day, I started coughing. As I increased the dosage of Topamax, my coughing got worse and more frequently. I had to return to the doctor a week later for the cough. I thought I had been exposed to bronchitis because I had worked in the church nursery.
However, the doctor heard a wheeze with my cough and stated I had asthma. This came as quite a surprise because I have never had any lung problems or asthma problems and I am 52 years old. I was referred to a pulmonologist who put me on 2 inhalers (one steroid, one rescue inhaler, nebulizer treatments, chest x-ray, Oxygen to be used a night.
I was still having severe coughing spells every time I moved or tried to talk. I would have to run to the bathroom every time I started to cough because the coughing was so violent that I experienced severe urinary incontinence every time I coughed. I checked the internet and with my pharmacist, both stated that developing a cough was very common with Topamax. After learning this, I slowly reduced the Topamax until I could stop using it. As I was reducing the Topamax, my cough started to decrease. When I mentioned to my doctor about my problems with Topamax, he stated that Topamax did not have any respiratory side effects. I had a brochure from his office for Topamax that stated Topamax should be used with caution with people with lung or asthma problems.
I am now taking 800mg of Magnesium, CoEnzyme 100mg, and Vitamin B 2 100mg twice a day as a preventative. These supplements were prescribed by my neurologist. Since starting these supplements, my number of migraines has decreased.
Kay/redpoppies

i have been on this for 5 weeks topamax and am now very depressed and anxious and having suicidal thoughts and bad upset belly and am now coming of it does anybody think that this is the cause

I was on topamax for about 2 years. I took it for frequent migraines caused by my sinus's. I had all the normal side affects but got used to it after awhile. The only one i didn't get used to was the hair loss. During this time I started allergy injections and now i'm up to my maintenance level. So i decided to ween myself slowly off the topamax. I have been off for about 2 months now and I have been fine on the headache side, but i have started to get other symptoms (i think withdrawal symptoms). They have progressively gotten higher in number as the days go by. First my hair loss has not stopped. I gained about 10-15lbs, I am edgy and climbing the walls all day. I have a really hard time relaxing. I recently developed horrible insomnia, and about a week ago i started having digestive problems including water retention, bloating, gas, irregular bowl movements, and acid reflux. And I've recently had bouts of tightness in my chest and throat which make it difficult to breath (lasts about an hour). I didn't have any of these symptoms while i was on the topamax (except the hair loss), nor did I have them before it.
I am seeing an endocrinologist in a few weeks to make sure nothing on that front is causing any of this, but i really feel it's from taking and going off the topamax. If you can find other ways to deal with your migraines, DO!

I have been on Topamax for about a month now and going to give it a couple more to see if it is the med for me. I use it for migraines. I usually get at least 6 migraines a month - this month I got 4 and only one was really bad. I am very disappointed that beer no longer tastes good and am hoping that if this med does work to reduce or stop my migraines that my taste sense for at least beer will return. Also, I had an odd experience last night - I had 1 1/2 Mai Tai's last night - both of my arms went totally numb/tingly - not just my hands and not just a little tingly - totally scary numb/tingly to the point of considering an ER visit but I assumed the alcohol in the drink just exacerbated the side effect. I may become a non drinker if this med actually works. Guess you have to take the good with the bad! The cognitive stuff---that only lasted the first couple weeks thanks goodness for me. Not giving up yet!

I had all of the above side effects when I was on this crap. Topamax is highly dangerous. I now have developed Narcolepsy, have problems with my joints, my memory has trouble here and there for simple things. I am only 29, and haven't taken this stuff for about 4 yrs. I have permanent problems now that I have to live with for the rest of my life. I didn't have a choice in the matter. I was ordered by the court to take a psychological evaluation. They asked some questions and determined that I was Bi polar. Topamax was the drug they put me on, and look where I'm at now. I also have Migraines, which I had way before this poison, and my advice to everyone is that this stuff is dangerous, don't take it!

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.

In August I started taking Topamax and every week i am to up the dosage now I am taking 50mg in the morning and and 50 mg at night because my headaches was so bad that I had to quit my job because I couldn't serve food and vomit at the same time. Now that my headaches have gone from everyday to about every other day I have noticed the indigestion. Because I had because sick so long the doctor suggested I had a reflux and it would correct itself.I started looking at all the medication I was on and the list from the pharmacy never indicated indigestion on as a side effect for Topamax.My appetite is non.Weight lost about 20 lbs but I could afford that and then some. I try not to use the upstairs of my home if no one is there because of the dizziness.And simple chores around the house go undone.I have bounce $130 in bank fees this month and can't figure out how and gave the finances over to my husband to keep up with and I am a math major in college this semester.This is how bad things have gotten some simple words i can't recall how to spell . I have to use the dictionary. It's bad.

I am almost 41, and have had migraine headaches most of my life which I could manage with 800mg of Naproxen Sodium, or a Norgesic Forte, and when Imitrex came out, I could just administer that. Six months ago, my headaches got so frequent that I had to start taking my Relpax (similar to Imitrex) and/or Fioricet more than 2X per week. According to my neurologist, this is a no no, as both of those meds can couse rebound headaches. He started me on Topamax, 50mg per day. It did nothing. He bumped it to a 100, nothing. Now I'm a 200 mgs, I am still have a migraine in left temple as I write this. I have the tingling, the daytime sleepiness, but my mind is fine, and my appetite is just swell (regretfully). What the hell am I going to do now? Ask him to bump me up to 400 mg? Now I have these headaches every "F"ing day, and I can't take anything. I just have to suffer.

Topamax is NOT working!!!!!

Initially, numbness and tingling in extremities which subsided, but memory loss and loss for words is very uncomfortable, and my neurologist suggested caffeine every AM to compensate, which helps some, but not enough. Difficulty reaching orgasm has become very frustrating as a side effect, but is better than the horrible headaches every day. What a choice!!1

I have been on topomax for nearly a year and have many of the same problems you guys have but a new one has popped up on me that scared the shit outta me and no one can seem to figure out what is causing it.
During sex just before orgasm my brain felt like it was going to explode!!
All I could do was hold my head in my hands and roll on the bed. this pain lasted for almost 8 hours. the next day i felt fine and went motorcycle riding and while racing my buddy and while passing him(More Excitement) It hit again and it was all I could do to stay on the bike. Went to the hospital and they did cat scans mri ,mra tests and have found nothing wrong w/my head .So my ? is could this be coming from my topomax??

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 !

Hello All,
I"m a 50 year old Mother and Grandma who takes Topamax as a Mood Stabilizer for Bipolar Disorder. I took it about 5 years ago and about 6 months after I started taking it I was struck down with debilitating diarrhea, nausea, loss of appetite, extreme weight loss ( 26 pounds in one month ). No one knew what was wrong with me. My psychiatrist actually upped my Topamax dose because I was becoming depressed and having severe mood swings. I was sick for 8 months. I saw a new psychiatrist and he stopped the Topamax because it just was too over medicating at that time and started a different mood stabilizer.

I didn't put 2 and 2 together. I just was happy that the diarrhea and nausea for the most part was gone. I still have nausea frequently but that is from a totally different cause.

In December we discussed that the new mood stabilizer was no longer working so we went back on the Topamax. In April the diarrhea and nausea this time accompanied by vomiting started. I was ready when it started tho even tho I didn't know the cause. I got hooked up with a GI doctor, started probiotics immediately, started eating organic yogurt with as many live active cultures in it as i could find. I would only eat plain boiled rice, boiled macaroni, toast, ripened organic bananas and drink lots of fluid. No gatorade but pedialyte because gatorade has citric acid in it which can be irritating. Pedialyte doesn't. I also drank decaf ice tea with small amounts of sugar.

Now today I read that Topamax can give you diarrhea and if you have a history of diarrhea tell your doctor. Great, just great. Trade my mental health for my physical health but having diarrhea at the most unopertune times does affect my mental health. What am I going to do?

I refuse to take a weight positive mood stabilizer and that is all I'm left with. Like Lithium, Depakote. they will make me as big as a cow. I'd rather have diarrhea to tell you the truth. I don't think I'm gonna tell him.

Missyk10atx

I was wondering if topomax causes high blood pressure? Also I'm on 350 mg a day plus 1600 mg of tegretol a day . I was wondering if any one was on such a high dose?

I am a 39 year old man with peripheral neuropathy and migraines. When I was diagnosed 3 years ago, the pain in my right leg was horrible and headaches daily. My Dr. put me on Topamax and I was so happy, it seemed to help but one night( about three weeks into it) I went to bed and awoke in the morning legally blind. Topamax was stopped that day but it took 4 months ( and changing the prescription in my glasses 3 times) for my vision to return to 20/20. The doctors tell me I was lucky as some people have perminate lens damage from the optical pressure change.
My doctor said I could not take any thing in that class of medications as it would probably have the same effect on me. So he decided to put me on Cymbalta for the neuropathy. He said it was being tested as a possible use for neuropathy but had not been proven. It works great for the pain and oddly my migraines have gone down to about two a month.

I was given topamax and I dont have seizures or anything. I have PTSD, Depression, and Panic Disorder. I was all over the map, having violent episode, and no memory of it (which was dissociation). They put me on this while i was in the hospital, and I became so non-functional it wasn't funny. I have a degree, grad school, and am 1/2 way through a masters, so I am normally well spoken rationale and well thought out. I was having trouble finding simple words. The effects came on immediately. My memory and cognitive abilities have been permanently affected. I was on for a year live in a outside a small city, and have no real option for other doctors. Not to mention..I found out that this drug has a high rate of users getting depression and in particular at risk for suicide. That was what happened with me...prior to taking it..Then they put me on it?

Trouble seeing, cognitive abilities, memory, depression (was already depressed, and suicidal, but I think it was counterproductive to the anti-depressants)

Is their any action against this drug?

I started Topamax in November of 2007 the usual 25mg and worked my way up to 150mg. I have always had pretty thick hair and now have hair loss in the widows peak and top part of my hair. Needless to say I am devastated. I have cut myself down to 50mg in the am and 50 mg in the pm. My Neurologist states that she has not heard of hair loss but even this web site and the drug company states that it can cause hair loss. I have with the help of a very good massage therapist determined that my migraines are cervical so I am seeking a second opinion and taking myself off this drug. Not worth the hair loss if I don't need to be on this drug.

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've been taking Topamax now for about 6 weeks, and my headaches are still just as bad as ever, except now I have headaches with the thrill of numb fingers, confusion, weight loss, memory loss, an absolute horrid taste in my mouth, and now the latest.... my hands feel dirty all the time. Has anyone experienced this?? I just feel like my hands are dirty. I wash them, and a half hour later, it almost feels like there's a film on them, and I have to wash them again. Almost ocd-ish. So 6 weeks in.... Anyone have any advise on how much longer I should give this topamax before I give up on it & try something else? My doc said it should have worked by now if it was gonna - but I have read on here, that it sometimes can take months...? I just don't know if I can take these side effects, AND the headaches for much longer without going NUTS! {grin}
Any advise?

I have been taking Topamax, 25 mg. for one week. Today was the first day I took 2. My doctor prescribed it for migraines, which I was having several times a month. The past few times I thought I was having a heart attack! I read about the side effects before I began the medicine so I have been waiting on everything to begin. So far the only thing I have noticed is I have a weird sensation in my mouth and sometimes in my throat. The only way I can describe it is if I have been breathing something caustic, such as smog or smoke, or a lot of dust. One thing I am going to try is a mouthwash called Biotene or Biotene. It is for dry mouth. Maybe it will help. Has anyone else experienced this and/or tried Biotene?
I read with interest what everyone has written. I drink soda all day and will be integrating more water because of one of the posts. So far though, my cokes taste the same. Is it only Dr. Pepper that tastes differently? I have also been getting winded easily and thought it was just me. The one side effect I am READY for is the weight loss. I gained 20 pounds in a year after I quit smoking. Anything to help with that is welcome.
So far though I have not had any migraines and I always have one with PMS. No increased anxiety but I have been on Zoloft for several years for depression. Maybe the Zoloft will offset the Topamax in that respect. I can be somewhat scatterbrained at times and as an assistant principal, I have to stay focused all day. Now that it is summer I will be able to relax a bit and it's ok if I am more absent minded than usual. Except that I have to work on a research project. But hey, does anyone really read that stuff??
Thanks everyone for sharing and I will check back in if anything changes. I am curious to see how things will go.

I only started Topamax three days ago (25 mgs, but it will be increased to 100 mgs over an eight week period to help me adjust), and I've already experienced the loss of appetite, crazy mood swings, insomnia, eye aches, and head aches. I haven't had a migraine, though, so that's nice, I guess.

I began reading all of the blogs about Topamax and was surprised. I have been taking Topamax as a mood stabilizer since February 2007 at 200 mg at bed time (I probably sleep off the fatigue). The only side effect I am concerned about is the weight loss. Short term memory is not an issue. As a matter of fact, I am attend college and am managing a 3.85 gpa. I wish all of you the best of luck and hope you find something that works for you.

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.

headaches,nausea,fatigue,irritability,blurred vision,terrible loss of memory,inability to eat,depression,diarrhea

After taking Topamax for six months, I found my self different person.... I started feeling this way just in the first few weeks after I started the medication, but the simptoms incleased with the time....Anxiety, nervousness, panick attacks, negative thinking and depression....crying, making up problems from nothing, hair loss also....I decided to stop it, slowly and without any concequences I thought I am out of it....But just a couple weeks I stop it is I noticed some red spots on my skin on the lower legs, soon they became more and stronger..... Two months later I was in abnormal stress that I am going to be sick from a terrible desease... Read so much on Internet.... I can explain how terrible I felt and even though I did blood tests (everything was in normal range!!) and spoke with so many doctors, nobody could tell me what exactly is wron with me. One Dermatologist named the skin problem as Progressive Pigmentary purpura and gave me a cream for that. Thanks a lot for that because the spots started desapearing, but it may come again.... nobody knows for sure.... I think this is another side effect of Topamax, that nobody had before..... Please tell me if somebody else had the same situation... I will feel much more relieved....

I began Topamax in August after 6 months of ongoing severe migraines. They stopped immediately. My DR had warned me of weight loss but I thought who cares? I weighed 130 at the time. I have had a fatigue problem for years so I really can't attribute that to Topamax. I did become very sick (exhaustion-couldn't get out of bed) after Christmas and had my DR take my ANA which was 1280 (high). I have also experienced hair loss but I did not find that on the "side effects". I called the hot line to see if there were other reports of affected the ANA count and they had no data on this. Has anyone else had this experience? Meanwhile, it is 8 months later, I am down to 96 lbs and worried, have lost all fat & muscle - no migraines!

I've been taking Topamax for a couple of months now to help with my lifelong (I'm 47) migraines. I had been taking at least 10 Axerts each month, using Amyltriptyline about twice a month, and had completed one lifetime's supply of Aleve (my belly revolted so it's only Tylenol for me from now on). I'm on 100mg and have very mild tingling, which I tell myself is a message that I don't have a migraine (hooray!). For me, this is a wonder drug - it nearly completely prevents my suffering. The problem is that I have absolutely raging diarrhea. I've spent weeks on the BRATTY diet & using probiotics to no avail so I've begun dropping my dosage to 75 mg to see if that helps. I would do nearly anything to continue taking Topamax.

Interestingly, I had more fuzzy brain problems taking excess Axert & Amiylriptyline than I do now on Topamax. I feel much less like I have ADD now. Amazing how differently meds affect different people.

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 have been on Topamax for 4 months and so far the migraines I have suffered for 40 years are gone. Great Some side effects like can't stand carbonated drinks. Reaction time is a little slower. I stress out a little more then I used to. I get really tired at the end of the day. I used to be a night owl but now love my sleep. Question to you all. Any one had problems with their teeth? Such as pain, fillings falling out? Let me know.

I have been on Topamax for several years now for crippling migraines. I now take 125 mg at bedtime. I once tried to take myself off of it but, the headaches came back worse than ever So... I went back on. some say that it works because migraines are like a type of seizure. I sure don't know but I'll do anything not to have them like I used to. Recently at night my arms and legs get numb; sometimes one side sometimes both sometimes all I feel is my trunk. It is really scary, but more scary for me is the headaches with the intense nausea that accompanies them. You just can't function. Lately I also feel very tired too! Every one tells me it is just stress from work and "perimenopause" (just what I need more hormonal fluctuation to cause headaches) I really wonder if all this increased fatigue could also be the Topamax ... I mean I could easily sleep 11 hours per night if you let me! Has this happened to anyone? Did perimenopause complicate your treatment?

My 6 year old daughter is taking topamax. Since the time she been taking it she has forgotten who she was and everyone around her, she went for an excellent student to not be able to do simple things like reading writing and math. She does even seem like the same child. She is very emotional and I just want my little girl back.

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 just started taking Topamax due to having headaches everyday. I have been experiencing tingling, zoning out, confusion and body odor. I noticed some of these on others posts, but am I the only one that is having a body odor problem?? Not only that but I am itching under my arms to the point that I am almost scratching them raw! Its terrible! I am not sweating, so I thought maybe that is why I am itching so bad, but I don't understand the body odor part!! I have never had a problem with this before! I really never even HAD to wear deodorant, I do, but I didn't have to... & yes, I do bathe everyday! =-]

Been taking Topamax 300 mg a day for the past 4 year. I also take 450 mg of Wellbutrin. This is to help with migraine. Although my total count of Zomig pills I took last year was 120 pills and some of those I broke in half so I wouldn't have to use a whole pill for a migraine. So that mean, with the Topamax and Wellbutrin combined, I still had at least 123 migraine this past year. Three months of migraines. That's insane. I can't stop the "Dopamax" because my doctor says it would be really bad with it. I have terrible memory loss, forgetfulness, and loss of words that is embarrassing. The nurses did not inform me of the side effects when I first started taking it and I thought I was going crazy. I started looking up ADHD on the computer thinking I had developed it as an adult. I was made at the nurse when she asked me how I was doing remembering things and and if I was stumbling for word......I wanted to slap her off her stool.........at that point it was NOT funny.

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.

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.

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've been on this garbage for about 2 months and today will be my last day. Just a bad feeling deep within my body since I've been on it. It's really hard to explain, along with all the other SE's, the terrible soda taste, tingles in feet and hands...I find, for me, stay away from ALL forms of alcohol and no headaches...forget this med!