Topamax symptoms and conditions

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.

My wife had 2 shots in Nov and Dec of 2007 and has all of the side effects listed here. She has seen 3 neurologist, 1 hematologist, 1 pain management doctor, and has an appointment with a Rheumatologist. No medical treatments seems to help (Cymbalta, Lyrica, Topamax, fentanyl for pain) the symptoms continue to get worse. Has anyone found anything to be helpful?

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.

Hello . . . why do we continue to take medications that cause us such physical and mental anguish . . . we hope for a life . . . I am one of those who takes a cocktail containing . . . Lithium, Lamictal, Cymbalta, Sequel, Topamax and other medications for high blood pressure, low thyroid and osteoporosis . . . down four medications . . . because I have a good doctor . . . it is impossible to distinguish which one or the synergism of the medications . . . which do what . . . what I want to say . . . there are more medications now . . . more doctors . . . change doctors . . . change medications . . . you might not feel great . . . but you will feel better about taking control . . . it has happened to me . . . M.

I have been on seroquel for 5 years now. Of course I gained weight, but I used healthy diet and exercise to maintain a healthy weight. However, despite all that my cholesterol is at 260. The doctor tried to say it wasn't Seroquel, but I know it is. I have weened myself off over the past few weeks and it has now been 4 days without it. I am constantly nauseous, cannot sleep and at this point am scared to death because I remember how horrifying getting off Effexor was. Can anyone tell me if this gets any better?

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 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 a 51 y/o white female that has been on Lipitor for 2 years. I am 5' 1" and when I had to go on it my cholesterol was 267 I weighed 112 lbs. I was shocked.... my doctor told me weight had nothing to do with cholesterol. She kept a close watch on me and my cholesterol came down...... and then my ex-husband of 17 years and I re-connected and got back together and I moved so I had to get another primary care physician. I took all my meds to her, she also kept a close watch on everything. At this time my cholesterol is down to 109 and I asked if I could stop taking it, as I take quite a lot of meds, due to different things and if I could stop anything it would be great, but she said it I stopped it, my cholesterol would go right back up. So since I am not experiencing any side effects I'm okay with continuing it.

I surely hate to hear what you all are experiencing with your Lipitor..... could your doc try another cholesterol medication?

The only one of my meds that is giving me any problem is TOPAMAX........ that we are using as a Migraine preventative! HORRORS!!! Today is pretty good day. But my cognitive abilities are in the trash... I say the wrong word when I mean something else...... I search my mind looking for a memory...... I am also on disability since 2002 because of the Migraines....... I have has them since 1978, but they got progressively worse over the years until I was sick more days per week, sometimes more than 7-10 days at the time, having to be in the hospital being rehydrated and on IV pain meds.......... and as awful as the TOPAMAX is.....it has been reduced the migraines to approx 2 per month and they do not last nearly as long.

So sorry, I got waaay off topic, but I know that it is not the Lipitor that is giving me the side effects as it the last med I had to go on and I had no new side effects....... but that TOPAMAX is kicking my behind.

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??

I'm taking Wellbutrin and Lamictal (150 mg for both) for at least 5 months now, as a mood stabilizer. Like many people have said on here don't let these bad reviews scare you away from trying it, at the very worst you will take it and not like it so you can stop. But for me it was amazing how it stabilized my moods. I didn't expect it to be so noticeable. I had tried Topamax right before but it was terrible for me- it made me sooo out of it and I had a very hard time talking (finding the right words, pausing in sentences frequently) Lamictal didn't do that to me. I have started to get acne on my jawline like many others have posted, I didn't think it would be related but I've NEVER had acne on my jaw and cheeks they are really tiny bumps of acne, but a lot of them. The reason I started to look at this site for people's side effects was now I have terrible neck soreness and stiffness. I mean BAD. It's slowly working it's way to the middle of my neck as the day goes on and feels like it's going down the middle of my back as well. Very weird, I haven't exercised or done anything in the past 4 or 5 days that would have pulled a muscle, so make what you will out of it but I'm going to stop taking this drug. It's unfortunate because I really did like it and am worried how my moods will be after stopping it. But TRY IT, it has been at least 5 months of me being more stable so that alone is worth the clarity. Also, I'm a woman with usually heavy periods but didn't have that side effect with this drug and I lost weight didn't gain any with this one either, but I'm sure that had a lot to do with the Wellbutrin which is notorious for weight loss rather than weight gain. Also, if you start to feel good at a low dose as I did DON'T INCREASE IT! I hate hearing people say their doctor's wanted to get them to the "therapeutic dose" even when they felt good, your more likely to have neg. side effects if you go higher than you need. Everyone is different in how their body metabolizes the medicines. Do your research and hold your ground, make sure you have a doctor that will listen to you, that's key.

The first time I went on Wellbutrin, I had a really bad reaction to it. I had insomnia, horrible tremors, apathy, I felt like I was walking around in a cloud. I went on to try other medications. Now I'm taking a combination of Prozac and Wellbutrin and it seems to be working. My depression is under control. I don't have the apathy or zombie feeling anymore, but I do still have the tremors, though they aren't as bad. I get some mild insomnia, but taking it in the morning helped with that, and lately I've found that a little bit of coffee in the morning (not too much, don't need to be MORE shaky) helps with a lot of my side effects. I do have the confusion and concentration issues too. It hasn't caused any severe problems, it only seems to really happen in casual conversation, where I'll completely forget what I wanted to say. It's annoying, but way better than depression, and not severe enough for me to stop.
To those people who are telling others to stay away from this drug, or any drug for that matter, don't forget that there is a reason there are so many different kinds of anti-depressants. Everybody's body chemistry is different, so their gonna react in different ways. Also, the people who don't have issues with side effects rarely go looking for sites like this....
Just something to think about.