Topamax and neurologist

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

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

I 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 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 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

Hello, I started taking Topamax a year and a half ago for my migraines ( I was getting them almost daily- still am). My neurologist started me out at the normal dose of 25 mg a day and kept raising it up until I was at 100mg twice a day at which point I just quit taking it because I felt like it was just making things worse. Anyway, in the beginning, I did lose my appetite and things tasted terrible... especially carbonated beverages. I lost probably 15lbs. I quit taking the topamax for about 6 months and gained about 20lbs. I just started taking it again about 2 weeks ago and my appetite has actually increased. Has anyone else experienced this? I am hungry all of the time. I did not have a problem concentrating or remembering things last time but this time I do. Funny how it effects you differently each time you take it...

I thought I had sinuses for years..got test for allergies and was founded to be allergic to nothing! Despite having at least 3 infections a year and on my 3rd nose spray, zyrtec, nyquil at night..ect..because I was contantly congested and had drainage & headaches..3-4 infections a year.. She ordered a cat scan and was told that my sinuses had spurs but was clear; my septum was severely deviated and I needed a ENT to have surgery to correct it...The ENT wanted to do major surgery which included a plastic surgeon... so I went for a second opinion to another ENT that was well known who told me I had rebound headaches..and referred me to a neurologist..my goal was to get off all the meds (nose sprays, nettie pot, antihistamines..nyquil..ect..) ..he was a dinosaur and was convinced that although I had a severe deviated septum~he didnt want to do surgery but wanted me to stop all meds I was on and to go to his neurologist that he liked *(another dinosaur) who put me on Topamax..50mg in the morning and 50 mg at night..I had panic attacks right away so he added 20 mg of klonopin at night to help with that and flexeril to help me relax...he hinted at me going to a pysch doctor which pissed me off right as if I was psychosomatic or something... and stiffled me a few times when I tried to talk to him about my drainage and congestion~he wanted to hear none of that because he already made his mind up what I had and "sinuses" didn't jive with his impression that I had migraines.

All of the sudden within days I really did have migraines..they just hit me! HARD...I had to call him and tell him I was in excruciating pain on the right side...he called in Imitrex inj. and they worked within 5 min. and my Topamax went from 100 mg total > 250 mg/day! I had at least 6 shots since and the side effects of the Topamax have profoundly changed my personality...I have no word recall..like being stoned in the 70's but worse because I have a special needs child and I need to engage her and am like a zombie! I have ALL the same sx that are mentioned but notice one that isnt noted which is my tongue is raw as well as my throat...all the way down into my stomach...I am having to take zantac for acid indigestion~it is like my insides are raw!
I am also having extreme constipation...I lost weight in the first 2 mos. where I couldn't eat nothing..but now I am eating cause it's there but it is not leaving me even when I take multiply doses of my old standby... I am drinking tons of water..at least 64 oz a day but it is not helping. My eyes are burning at times...I need my reading glasses all the time now. Some days my heart is beating out of my chest for no reason..at rest..I just feel ill like something is not right at all! I don't go nowhere & have become a hermit. My headaches are gone but I feel I am just a shell of a person and want to get off...I am slowly weaning off by doing it 25mg at a time for one week at a time....then another 25mg another week......I know I will have migraines but I will just bite the bullet and suffer through it till I am off this poison....I have some injections left..MY main goal was to be off meds and these side effects are horrible! Once I am completely off I am going to a good ENT that can do the surgery to fix my sinuses so that I can hopefully be drug free as I intended. I too wasn't told of these side effects at all. So much time & $$$$ wasted! I think if I stay on this too much longer it will truly do long term harm!

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.

Ive suffered from migraines for about 5 years and never done anything about it until i seen a neurologist and found out i had a brain cyst. (not deadly) She prescribed me to topamax for migraines and immediately i started feeling change, i was moody and had no appetite, memory loss, chest/heart pain, short breath, paranoia, angry all the time, would cry at the drop of a hat, couldent concentrate, dizziness and it felt like a cloud was over my brain, i felt nothing all the time.

Ive never been suicidal and one day i lost it, i felt like everything out of me had been drained and it would just be such a relief to die right then. It was the worst 3 hours of my life, trying not to kill myself because i knew it was the topamax doing this. Definitely scared off it now, do not want that to happen again

I have been taking Topamax for about 6 months now. I have been on several different everyday medications for migraine prevention and Topamax has been the best one. I was first prescribed Relpax to help relieve the headaches. I eventually got to a point where I was getting migraines every day/every other day (insurance only covers 12 pills per 20 days). I was later switched to Imitrex - which is MUCH more effective (1 100mg tablet) but my insurance only covers 9 pills per 30 days (unbelievable).

Just wanted to give you guys some background on my situation. I have been through 2 MRIs and a CAT scan, visited a neurologist, done 2 sleep studies, spent 2 months on a breathing machine for possible sleep apnea causing migraines. My family doctor, my neurologist, everyone I saw was unable to determine the cause of my migraines.

THE GOOD NEWS is I was referred to an UPPER CERVICAL SPECIALIST by my old chiropractor. This may not sound believable but my headaches have decreased to about 2-3 per month since I've been treated by my new chiropractor. My old chiropractor was the type who did a complete adjustment on my spine/hips and cracked my neck both ways every time I visited. The upper cervical specialist focuses on C1-C2 vertebrae and uses calculated heat readings to determine where there is inflammation and there is no twisting/turning involved. Look up upper cervical chiropractic on google and see if these treatments will help with any of your headaches. It has helped my situation dramatically and I will continue seeing this specialist and probably come off of the topamax in the next few weeks.

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

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

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

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

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

I had what I thought was a sinus infection for three months, I was treated with various antibiotics and Prednisone. Finally a CT Scan was done and I had clear sinuses. I was having pain/tingling under my eyes, extreme tension in my cheeks, jaw, neck and shoulders. It turned out that I was having "involuntary muscle contractions" related to the medication. I had to take muscle relaxers for several days after getting off Topamax. It has been 3 months since I've been off and I am still having some tingling/discomfort under my eyes. I am seeing a neurologist soon to see if this is permanent nerve damage.

I have been on Topamax for the last year for migraines but during the same time period, started having problems with my eyes. I thought it was an infection from my contacts so I stopped wearing them plus my eye make up. I have been to 5 doctors and they all seem to think it's "Dry Eye Syndrome" and I have been having them insert plugs into my tear ducts and I am constantly putting lubricant drops in my eyes to relieve the burning and itching. It dawned on me this weekend that this All started the same time I was prescribed this medication. I have stopped the pills since Fri.

My question to all: Does Anybody have been having similar problems and will it go away or is the damage done?? Will the doctor.s admit to knowing anything?
Thank you!

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!

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!

After using Topamax for a week and two days for migraine prevention, I pretty much went blind. I went from having 20/20 vision to -6 in a matter of hours. I was diagnosed with Acute Induced Myopia, a "rare" side effect of topiate drugs. It was prehaps one of the most frightening experiences of my life. While this side effect is widely documented online and in numerous neurolical and other health journals, my neurologist failed to mention the possibility to me. From what I've learned, this is a fairly common, yet reversible side effect, and is found mostly in women ranging in age from 25-50, if topamax isn't stopped immediately, it can result in permanent glaucoma. In 2001 the World Health Organization released a warning describing this side effect and urged medical professionals to discuss it with their clients prior to taking the drug. Apparently my neurolgist missed that memo. Now, three days later my vision has returned to 20/20- much to the surprise of my new opthamologist (never needed one before). I urge everyone who takes Topamax to pay very careful attention to their vision and stop taking the drug if any decrease in vision or blurrieness occurs. I'd hate to see anyone cause themselves permanent damage.

I'm on my first month of Topamax and going to work for the first time in two weeks! Someone mentioned feeling like a box of rocks on this stuff, its true, but in my case the dosage increase might have been too abrupt. I take it for epilepsy, 100 mg. I was completely non-functional during the transition! Not only was I so tired I couldn't move, so sick I couldn't eat (I've lost a lot of weight), but I was constantly dizzy. I would often get icy to touch and pass out, mores after eating.

Cognitively, I was severely depressed, and had a constant "noise" sensation in my head which I started yelling at during odd moments. I believe I even hallucinated at one point that the room was expanding. Mostly, people thought I was stoned because I would just stare at the wall and have difficulty talking to them without slurring my words.

It's been a truly terrifying couple weeks, however I've settled pretty quickly out of the major side effects. I think thats pretty much what happens for everyone. I'm happy to have my brain back.

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

I've been on Topamax for over a year for hormonal migraines, and it's working great for the headaches. I started out at 25mg twice a day and now I'm up to 100mg twice a day. I've lost 40lb (mostly due to the drug -- but my appetite is starting to come back) and have just recently started experiencing the anxiety and tingling in the extremities. I've always felt I've had trouble concentrating and "finding the word", but I attributed it to lack of sleep because I have two small children. My most recent side effect, however, is most worrisome, which is the reason for my visit to this website. I am experiencing severe abdominal pain, almost constant, and it seems to be increasing. I had abdominal pain and diarrhea when I first started Topamax last year, but it stopped after the first month or so. I'm just wondering if maybe long term use can cause ulcers or other stomach problems. Anyone have any experience with this? I know from experience that Topamax dosages have to gradually weaned up and down, so I'm considering decreasing my dosage to see if my stomach problems will stop. I'm just in so much pain, yet my migraines have almost stopped now with 200mg a day, that I'm reluctant to change my dose.

I just started Topamax for Bi Polar. I replaced the Seroquel I was on with it. I have been having some really bad headaches before I went on it, and I am still having them. I have lost 6 pounds in a week. Can someone tell me from their experience does the headaches seem to go away with more dosage. I was on 50mg of Seroquel and with the Topamax I am only on 25mg right now.

I took Topamax about 6 years ago for migraines, and experienced no side effects. Just started it up again 3 days ago, and I feel like I am totally drugged and my head is spinning, can not drive, can barely hold a conversation, only started with 25mg, and can say that each day I feel a little better, but the only difference this time is that I am on Lexapro and my Dr. said the side effects could be worse till I get used to it..anyone else take this combination? And how long till I can function again?

I have been taking Topamax for chronic headaches migraines. I am really frustrated after trying Topamax for the second time. I tried it for about four months early in the year and here I am again trying the drug once more. I am using 100 mg both times and see no results even this time around. I have only been on it for about two months. My neurologist tells me to be patient, but it's really hard to when my life is ruined and I cannot work as a hairdresser (product fragrances and chemicals that trigger headaches). My career may be over and I am only 23. I just don't understand why I am on epilepsy medication. All of these problems have lead me into depression, which is a whole other topic. My neurologist keeps scheduling me for followups about once a month which seems pointless and extremely costly. I feel like I am getting taken advantage of money-wise. I want to stop taking my medication and try chiropractic care. I know better than to quit cold turkey... Should I just call my neurologist and cancel my appointment and ween myself off my medication???

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

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

Do not stop this drug cold turkey. I am not a fan of Topamax but I see many people posting about wanting to stop immediately. I have had a really bad experience on this drug with side effects but you cannot just stop taking it. I am currently weaning at this rate: 25mg every 5 days. From what I've read, this is pretty much the standard when weaning off topamax but you should always consult your doctor. Cold Turkey stopping can result in seizures and all kinds of adverse side effects that can make your current topamax experience look like a walk in the park.

My wife has been on Topamax for 6 months and I feel our relationship is in the gutter. Lack of affection , no sex drive and she zones me out (like a zombie). Doe anyone have the same problems with their loved ones?

My 56 year old son. Jim, is Bipolar. He was taking three medications, one of them being Topamax. The Dr. that prescribed this medication died and the new Drs. thought Jim was doing fine so they continued on with the same medication. Jim became fecal incontinent. We did numerous medical tests to see if this had any basis. None was found. Over a years period (Jim's third year using Topamax) Jim began losing his memory. This doesn't sound too horrific unless you know that Jim has 160 IQ and total recall memory. He never had to read anything more than once and he could quote verbatim almost anything from any page. Total recall of phone numbers and names, etc. At first the Drs said this was early onset of Alzheimer’s. He was being cared for by this time with a battery of Drs. Neurologists, medical, psychiatrists and doing some very extensive testing. Finally it was judged that no, Jim does not have Alzheimer’s. However he continued to quickly decline. He by now was both urinary and fecal incontinent. His speech was slurred and he was unable to bath himself. He required around the clock help. He would ask me questions like, did I go to school? Did we live as so and so town? Then he asked, is my name Jim? This was hard to hear but then he quit talking altogether, was staggering and would respond to telling him walk this way or sit here but little else. Finally the Neurologist told me he was almost certain that Jim had a rare brain disease and it was always fatal within a year. He determined that Jim was in the advanced stages and probably had 2 to 6 weeks to live. I was devastated! Jim was sitting in the office when the Dr. said this and he made no recognition that he heard or understood anything.

I started talking to friends about this and one of them said call her friend a paralegal nurse practioner. I did and she asked me "Why is Jim taking Topamax"? My answer I consider rather stupid now but then it was the truth, I answered "because the Dr. prescribed it". She said, titrate him off Topamax and then call me. I went to his Dr. at the time and the Dr. was most reluctant to take Jim off this medication. He accused me of "playing Dr" and was most insulting. I persisted and said if he wouldn't I would change Drs. Later I understand he took Jim off much too fast and we did have really serious side affects. We halved his dosage every two days and in 6 days he was off Topamax. Jim went into a catatonic state for several hours at a time about four times. There was about 4 days and nights that neither of us got any sleep. He had repetitive thoughts that nearly drove him crazy (His words). The sixth day Jim started talking but then would go into these catatonic states for hours. When he came out of them he would talk and explain some things, then he would quit talking again and he later explained the thoughts were going so fast in his head this was the only way he could preserve his sanity was to just "blank out".
After about two weeks of this intense illness and no help from his Dr. and Jim refused to go into the hospital, in his talking moments he said they would just fill him with sedative drugs and he wanted to get as clear as possible from these. To make a very long story short this was one year ago, three Doctors ago and Jim was relieved from his repetitive thoughts by Fluvoxamine, but that spiked him into a manic phase and eventually he went into the hospital. He is on a complete new regime of meds now but we always research any new med BEFORE taking it. It will never be just "because the Dr. prescribed it" again. By the way, Jim was taking lithium at the time Topamax was originally prescribed and gaining a lot of weight. His original RX was for weight control~! It didn't work but it nearly killed him. I called the paralegal back to thank her but she had left the law firm and no one can locate her. Our Guardian Angel????

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.

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've been on Topamax (for seizures) for almost 2 years now, gradually increasing my dosage from 150 mg/day to 400 mg/day when I learned that 150mg is a migraine sufferer's dosage and not a Epilepsy dosage. I mention that because at 150mg, the side effects were present, but tolerable. I had the tingling fingers, eye twitching that was only behind my right eye (seems everyone only has it behind their right eye...why is that?), I can't find the right words in conversation, memory loss , constant sleepiness, backaches, depression, etc. At 400mg, I was an emotional wreck...I could not handle my emotions anymore. I would cry hysterically when talking for no reason, I couldn't concentrate on my work as an analyst, I had to read and re-read instructions in order to understand them, and sometimes read them out loud....and this is the kicker...sometimes when I'm buying something and at the check-out, it'll take forever to do something as simple to count out change. I have given the wrong change to cashiers a few times and then told them something to cover up my embarrassment like "Oh, I thought I gave you a quarter!", when in all actuality, I thought I gave them the correct change.
I feel like a moron pretty much all of the time. I used to pride myself on my intelligence and speaking ability but on Topamax, that is seriously diminished.
I don't know if this is related, but because of my inability to concentrate, I lost my job in Nov. '06. I thought I lost my insurance too, so I made the decision to stop my seizure meds, thinking that I was "cured". Well, I had another seizure in Jan '07 and am back on Topamax...depressed, twitching eye, the whole gamut. But you know what? The entire month of January, before my seizure...before Topamax...was the happiest I've been in sooo long. It's not worth losing a few pounds for.

Been on 200mg. tpamax about 6 weeks. Problem swelling of the legs and tingling in toes they sometimes turn blue. Is this a side affect of topamax or something else. Doctors have no clue what the problem is any suggestions on what to do.

I am taking Topomax for migraines. I always start everything at a really LOW dose since I have a lot of probs with side effects. Started at 15 mg and went right away to 30mg (15mg twice daily) the second week because I was dying from headaches. The other antidepressants prescribed for constant daily headache prevention all of a sudden weren't working. I didn't want to take my abortive med for migraines every day (Amerge) so I was curious if Topomax might help my daily headache pain. Possibly my daily headaches had become migraines... so hard to tell one from the other anymore. I teach exercise for a living and so much of my headache pain is exercise induced. I found that while on topomax, all of a sudden 2 Advil would take away a headache I would get after exercising which never happened before. I would take two Advil before doing some of my hardest exercise to prevent a headache and for the most part that worked too... and that never worked before. I had tried all kinds of NSAID's before and after exercise at the advice of my neurologist to no avail. I did have one diffuse headache yesterday that might have been a true migraine and I took Amerge because Advil didn't help. I have been on the 30 mg two week now. But, now the downside. Since on the 30mg I feel like my chest is heavy a lot of time when I do water exercise... I am exhausted a lot doing my usual routines... I feel edgy, can't sleep well at night. I HAVE to have a two hour nap after teaching in the morning or I can't function mentally or physically. I sleep well for that nap time. Seems like I have thermoregulation problems. I teach water exercise and if the water is a little cold it bothers me and it never used to. Then in the pool awhile I feel hot. Same when I sleep.. I need a lot of covers, then I throw them off. Then they are on again. No I am not menopausal yet. My brain is hazy on topomax as well. I take bellydance lessons and sometimes I realize I can't remember what my teacher just told me. Now people reading this, don't think that just because this happens to me, it will happen to you. I know people who LOVE topomax with zero side effects. They don't tend to write in to posting boards. Also, sometimes side effects go away. Be patient if you want to give topomax a shot. I am thinking I am going to go back to 15 mg again... and see how I tolerate that. Because I teach exercise, the hardest thing is to feel the heaviness in the chest and the lack of ambition. This is not me. It is great not to have the headache pain, but I don't know if this is the drug for me. I was excited about the "losing weight " side effect , and I could see how skinny people who lose their appetite easily might be affected, but it takes a lot to stop me from eating LOL darn! I did read in another chat some poor chap had sinisitis for months and took TONS of antibiotics before finding out Topomax gives sinisitis type side effects in a small amount of people. So if you get sinisitis, don't take antibiotics before checking out if topomax is the culprit.

My heart goes out to every person out there trying to find the magic bullet for their headache, siezures, whatever... ADVICE.. .start with SMALL doses... you may be able to get used to side effects if you work up slowly in ALL drugs. In many drugs that didn't come in small doses, I took out 3/4 of what was inside just to get a mini dose. Ask your doc if you can mix one capsule or one pounded up tab of your med with juice and store it in the referigerator. You can drink say 1/8 cup a day of the juice to get 1/8 of a capsule. It is a lot easier than chopping up a tab into eighths. Also ask your doc about childrens doses that come in liquids with droppers. Topomax makes taking smaller doses easy with the sprinkles.. you are encouraged to open the capsule and sprinkle as little as you want on food. Good luck all. L.

Myhusband has been on this mdeication for 4 weeks now,, He suffers from epilepsy and was on dilantin for almost 2 years. Unfortunately he wasnt able to maintain the correct level for the dilantin to be effective and is now being weaned off of it and onto the Topamax..Myself and my whole family have noticed a significant change in his personality and moodiness, he is always tired and seems to be more depressed then before.. After some of his comments today that he has said to be and reading the postings on here, I will be contacting his neurologist on Tuesday (like I'll be able to get in touch with him on xmas,, NOT) and get him off this and onto something else.. As far as the weight loss, I haven't noticed any difference, he has commented about the tingling in his fingers.

I started taking 25 mg of Topamax in March 2006, slight reduction in migranes. July 1 neurologist increased meds to decrease migranes weekly to max of 100 mg, 2 weeks later and until this day, my problems have been horrendous. It has taken me 6 weeks to realize that they are due to the topamax. Extreme pain in lower left side, bladder infection like symptoms without an infection; walking around in a stupor; feel flu like, unable to think clearly; naseau; can not get out of bed; missed a week of work because I felt so unwell. I am slowly going off the topamax, although the urologist states "there is no correlation between your pain and the meds"; and it took two calls to the neurologist before anyone would listen to my plight. How long will it take to get this poison out of my system. I would rather have migranes every day than feel like I have been changed into an entirely different person emotionally and so unwell physically that nothing else matters. I was working two high pressure jobs, ready to complete another degree, and functioning a completely normal pleasant life with my family and friends. Topamax has taken care of diminishing all of this for me. My credibility in a position where I must think clearly and responsibility in my family where I am depended upon for much are sorely effected by this horrid medication. I believe it is very interesting that the side effects for migrane patients vs. those who take it for epilepsy and seizure are as different as night and day -- but it's the same medication. Kind of like me pre and post Topamax medication!!!!!

I'm on 50 mgs of Topamax, and it's really fuckin" me up man. Listen to this crrraaaazzzzzy ass story. My Mom took me to MCV (Virginia's State funded Hospital) on Monday, August 28th to pick up my seizure medicine and she dropped me off in front of the Gateway building and told me to go in and wait for her while she went and parked the car. No big deal. Nothing I couldn't handle. I've done this before I started the Topamax. Yeah, right........Well, I went in and sat down for a minute then got up (before she got there), crossed the street over to the pharmacy and got my meds. Crazy thing too was I got on the elevator and went up to the 3rd floor, thinking that I was supposed to meet mom up there. After I started walking down the hall I finally realized I was supposed to have waited for mom in the Gateway building before got my meds. So I got back on the elevator and went back down to the pharmacy and back over to the Gateway building and found her. I thought she was gonna be mad, but she wasn't. Anyway, on the way out of the Gateway building I almost walked out in front of a moving ambulance.
I am like a walking zombie. I have been on Lamictal (anti-epileptic) but the Neurologist is slowly building me up on the Topamax, another anti-epileptic, so that I can quit the Lamictal altogether cuz she's worried about a rash I have developed. Lamictal is known to cause life threatening rashes. She doesn't want me to quit the Lamictal until the Topamax is completely at 200mgs in my system for fear I would have a seizure. So for the time being I will be a zombie without an appetite. I barely eat anything. I'm always thirsty though. And driving.......HA! Forget that! I don't even WANT to try it. I might kill myself or someone else and/or end up lost somewhere. Wouldn't that be a bitch!
I'm willing to see this thing through though. I'm tough and think I can handle it.

I have had trouble breathing with Topamax. I have been on the med twice. The first time, my doctor suspected that the mix of Allegra D and the Topamax caused an allergic reaction, the feeling of someone sitting on my chest and a breathing difficulty. So, she told me to stop both of them cold turkey. I did. The side effects went away, I felt better after 3 days. My migraines came back so I went to see a neurologist who wanted to try the Topamax again. I agreed to try it. I feel that familiar breathing problem, but not as bad. This time around, I think it is triggering asthma attacks which I have never had before. Someone was cutting the grass next door and when I breathed it in, I couldn't breathe. I had to shut the windows quickly and I coughed until I caught my breath. There was a natural gas smell in my apartment bldg. last week, I was in the hall for 4 mins. and had to leave quickly because it took my breath away. It took me 20 mins. to stop coughing. When I smell nail polish or the remover, etc. now, I can't breathe. I left the house yesterday and was panting while driving. I can't walk on my new treadmill without breathing hard. That never used to happen. Other side effects include pain behind my eye when I go out in the sun, my lips burn every time I go out in the sun, so do my ears, tingling in my thumbs and feet that can be painful, allergic to my cats now (breaking out in hives), and just not quick with the mind like I used to be. I know I shouldn't be driving. I've only been taking it for 6 weeks.

I have been on dilantin for 20 years for seizure disorder called cortical dysplasia. Didn't even know I had it until 2004 when I had a grand mal seizure that lasted too long and different tests were run by my neurologist. It was suggested at that time that I switch from dilantin to something else due to taking it "too" long but all I knew is that it kept me seizure free and I was unwilling at that time to change. Well now here I am in 2006 with the side effects of the dilantin taking the chance of switching meds. Have been put on topamax, have been taking it for about a month. Very difficult transition for me, expecially when the dilantin was stopped all together. A lot of it was "in my head" I believe as I knew the dilantin did work and was not so sure about the other but I have struggled with feeling "hung over" in the mornings, confused, off balance, slow in answering questions, and anxious regarding these symptoms. My Dr. assures me I will adjust as my dosage is increased. Just when I get used to one I have to go up so it is very stressful times for me at the present but at this point I'm willing to ride it out. I have a MRI and a 24 hr. ambulatory EEG scheduled within the next 2 weeks so we shall see the results from that, but in response to side effects.......yep.....at least for me...but some are mind created

I am currently finishing my third week on topamax, I am only up to 75mg a day. I do not sleep right at night, due to tingling from the medication and other Multiple Sclerosis complications. I return to my MS Neurologist next friday and we will again discuss my M.S. and Migrains. The Tingling for me is from head to toe and it is driving me nuts. At least now I know that it is the topamax and not my M.S. causing the tingling. So life does goes on.

Paula

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.

I've been on topamax for about a year now. I suddenly got migraines everyday for 2 1/2 months straight (no joke), without ever having one before, until I got on topamax. I increased up to 175mg which i'm on now. I still get migraines, but maybe 2-3 times a week, you may think that's not an improvement, but nothing else worked. Side effects- the tingling did go away permanently after a few months, I did lose about 20lbs (that actually didn't bother me!) but the main side effect is the vision problems I'm having which I will discuss with my neurologist when I see him tomorrow. Best of luck to you all.

I have been on Topamax for a few months now. I can't remember exactly how long because, to be quite honest, I have the memory of a gnat since starting this medication. My neurologist prescribed this medication for me after I was finally put on medication for grand mals seizures. I had been having them sporadically since 1999. I also suffer from migraines and he said it would help with that, my weight and my depression. It sounded like a wonder drug until my dosage kept increasing up to the 300 mgs. he needed me to reach.

I became a lethargic, depressed and very detached, angry lump to describe myself best. I have had a difficult time doing housework and everyday activities like playing with my children. My depression was first improving but it took a turn for the worse and I have found myself feeling suicidal at times. I have suffered breast pain so severe I had to have a breast ultrasound done. Nobody ever told me that breast pain could be a side effect in women. My menstrual cycle has also been unpredictable as well since starting this medicine. I called my neurologist's office in inquire about this and they were unaware about this side effect.

My mental clarity is totally gone. My memory is so bad I have missed doctor's appointments for myself and my children. I have to write things down everywhere and have my kids remind me of things instead of the other way around. I find myself trying to form a sentence at times and it comes out like gibberish.

I stay on the medicine because my five kids were witnesses to my last seizure and it scared my oldest three so much they remember it as if it were yesterday. I made them a promise it would never happen again. The last medicine I tried left me with bruises all over my body and unable to get out of bed. If left with having to choose between the two medicines I have to pick Topamax. I can't be a guinea pig anymore. My kids need me to keep my promise and I have vowed to do so. If you could see what I deal with every night when I put my daughter to bed you would understand. She says she is afraid to leave me to go to asleep because she is afraid I will have another seizure. Being on this medicine is the reassurance I offer her to prove that everything will be okay.

I spent years on SSRI's trying to fight anxiety and depression and I suffered horrible side effects so I am at the point that I am willing to settle. Currently my dosage has been cut down to 250 mg. and my rage is pretty much gone. I am still depressed and somewhat lethargic. The good news is that I did lose 30 lbs. since starting Topamax. Unfortunately, Topamax doesn't do much for me in the way of migraine relief. Since my seizures are sporadic I honestly don't know if it is even controlling those either. I am keeping my fingers crossed.

My heart goes out to all of you taking this medication. I know how you feel right now. If you are lucky enough to get off of it and are able to find something else less stressful on your body then that is great. If you are in my situation and you feel as if this is as good as it gets, well, at least you know you are not alone. I know now that there are alot of us out there. I am not sure how much consolation that really is but it is something I suppose.

I've been taking Topamax for diabetic neuropathy for about 3 months now. I just went up to 200mg. I still have the pain of the neuropathy in my feet plus now I have the tingly feeling in my hands which I didn't have before and now I feel jittery all the time, I have the bad taste when I drink cola, I feel anxious all the time, sometimes I can't find the right words....but the neurologist says as the dose increases things are going to get better.....hmmm.....ok..... I'll keep in touch.....