Topamax and sleep

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?

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.

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 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.

Currently on and will be calling the doctor tomorrow to stop after reading everything tonight. I have the migraines still, I have the tingles in all the weird places, everything taste like pooh, which is wonderful, seeing that I myself am overweight and do need to lose the weight. I am not through my 1st full script,but up to my 100mg per day(50 in the morning and 50 at night). I have lost those first 20lbs. and Wow, how nasty those DP's taste now! I was up to 4 Zomig per day before the doc put me on Top and he thought it would help with the weight loss too, but the depression is uncontrollable. Can't sleep at all even while taking sleeping meds and very tired. Everything hurts.

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

I am feeling HORRIBLE! I can't taste anything normally either. My mind is mush, I cant go to the bathroom without breathing like I ran a marathon, I lost 20 pds in less than 2 weeks ( which puts me at 110). I slur, I have cotton mouth, can't sleep, I stare into space endlesly, my stomach and back ache, my mouth aches and I feel so tired. Everyone says I am acting abnormally. I am misirable and so is my husband, I am scared and feel so alone. To top it off, I still have a headache......

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?

Has anyone experienced hypersomnia with Topamax? My son just started taking it a couple of weeks ago and now I can't wake him up in the mornings. Not just tired... but literally unwakeable. Then he has sleep drunkenness once he eventually wakes up in the middle of the morning. I have taken him off it to see what happens.

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'm on Topamax, Atenolol, and Citalopram...all for migraine prevention. We added the Topamax to the regimen (100/day) about 6 months ago. The first 6 weeks were the worst for side effects, especially the metallic taste, tingling hands, 'stupid' feeling, and fatigue. However, I did eventually adjust, and the migraines did decrease in frequency and intensity. They were not completely eliminated, but when I still get them, I find that I can abort them with the 'rescue' drugs easier, and they don't last as long.

If you like soda's and are upset by the 'flat' and metallic taste caused by Topamax, there are some sodas that don't taste quite as bad. Coke Zero and Diet Pepsi Max seem to be a little more carbonated and have a 'zingier' taste. After about 3 months, some of the carbonation 'feel' came back and I could drink things like beer again, without it tasting like I was sucking on a rusty nail.

I use to get the 'stupid' feeling to for about the first 2 hours after I took my morning dose. I couldn't remember words, and would forget what I was talking about in the middle of my sentence. I started taking my meds at 4 am, so that I had a chance to sleep the 'stupid' off by the time I got up at 6 and left for work by 7am. Then I'd take my evening dose after dinner, because my kids don't care if I'm an idiot...just as long as I'm not cranky :-)

When I have a migraine, I usually want to drive a pick-axe into my head, so all-in-all, these side effects aren't too bad in comparison, and make me a much more pleasant person to live with.

Recently my evening dosage of Topamax has been increased to 200mg. Since the very first night I have experienced nightmares. This is very unusual for me, however, these dreams are so intense I generally wake my husband from his sleep with horrible screams. In addition I find myself waking very early in the morning. Perhaps that is to my advantage since my dreams have been of the worst kind!

I was on Topamax for 10 days with a few minor side effects but nothing serious enough to quit it. My husband and I went to the library about 6pm. I am 46 and never wore corrective lenses but was noticing that the shelves farther away were blurry, I didn't worry too much since I had been having ongoing thyroid problems and figured my eyes were swelling (though that normally happened only in the mornings). By the time we got home and were sitting down to dinner I noticed that when standing in the kitchen the people in the other room were completely blurry. By 11 pm I could only see clearly within 18 inches of my face.

I awoke at 2 am with a severe headache and almost complete blurriness, I had to hold the pill bottle very close to my eye to be sure it was correct and even then could not be sure. My husband gave me the meds and I went back to sleep. I didn't wake up until 1pm!!! When I awoke all light was painfully bright and I could see NOTHING clearly! I was rushed to the hospital and was diagnosed with acute angle-closure glaucoma caused by TOPAMAX!!!

Thankfully the docs were able to reverse the symptoms but said one more day I would have been permanently blind. My eyesight has never returned fully, though I can function just fine and do not feel depressed about it.

Please, be very careful on Topamax. The stuff is dangerous to many people though a life-saver for so many others. Also, may I suggest to those with the tingling that you get your calcium levels checked as this is a classic symptom of low calcium. I just wonder how Topamax affects the other body systems, such as the adrenal and parathyroids.

Hi so I've only been taking Topamax for five days now and I have a question? I am black and I also have a problem where I woke up this morning and instead of hair loss per se, my bangs on either side were cut straight across about 4 inches missing (this is a lot for a black person, maybe even to anyone trying to grow their hair for their upcoming wedding). It's like someone used scissors to cut off 4 inches, of only the front of my hair (breakage). Has anyone else heard of this? Please help.

Hi all,
Unfortunately, I didn't read all of these comments before I started taking Topamax.
I have migraines for 25 years, and decided to try Topamax.
Week 1-25mg, Diet coke tasted strange. Tingling. Tiredness. Forgetfulness. Can't think clearly. Hard to spell. Or do any task.
Week 2-50mg...a zombie-all of the above and more. Couldn't remember how to get back to my house..and I was just 5 streets away.
I stopped taking Topamax 2 days ago.
I feel much better.
Plz beware.
Having migraines for so many years (i am 38 now) I learned how to control them and Imitrex does work for me.
If I need to choose between having migraines 3-4 times a week and the side affects of Topamax-I choose migraines.

I am going to begin taking 25 mg of Topamax at bedtime tonight. After reading all of these posts I am a scared. I was prescribed Topamax for bipolar disorder. I am currently taking Lamictal as well. I always gain weight on psychotropic drugs and need to lose about 15 lbs (all of which I have gained over the course of being on Lamictal). Any who-my psychiatrist said that this medication may help counteract the weight gain I have experienced. Although I do not consider my self an overeater now. I do hope that it helps me to not like the taste of sodas though. I am addicted to Mt. Dew and caffeine, which I wouldn't mind stopping. Anyway, I am supposed to increase my dosage by 25mg per week until I reach 75mg per day. I am also supposed to go back and see my doctor before I increase the dosage beyond 75mg. I just hope I do not have the horrible side effects I have read here. Some of them I know I can deal with especially if they are temporary but the anxiety/depression/shortness of breath/lack of energy/morbid thoughts are the main ones that concern me. My psychiatrist said that with this medication I should drink plenty of water. He said that it could cause headaches and other side effects if I'm not sure to drink plenty of fluids with this medication. So, I am planning on hydrating myself really well today before taking it this evening. I'll post back and let you know how the side effects are going. Is anyone else on a combination of Lamictal and Topamax or on it for bipolar disorder? I'd like to hear more of your experiences.

I started Topamax about 2 weeks ago; I still have the tingling in my hands, had headaches for the first few days, and I get so dizzy when I stand up that I usually have to sit back down... and I would love for the taste of metal to leave my mouth, I have already lost around 10lbs and didn't need to loose any weight in the first place, this makes me feel sick and frail. I'm already annoyed of people questioning my eating habits especially my parents, constantly telling me to eat; food just doesn't sound good. I am also very tired all the time. I just turned 20 and my doctor put me on this medication because I have been hospitalized for severe migraines even TIAs and he doesn't want me to be on birth control without being on something for migraines. I really don't like taking medicine every day, especially something that seems this serious to me, but I know that TIAs scare me more than a medicine. I increased my dosage last night and couldn't sleep at all. I'm really hoping that the dumb affect doesn't hit until after finals at least...

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.

Topamax is w/out a doubt the WORST drug I've ever been on. It made me brain dead. I couldn't find a job on Topamax. I would be in interviews and would space out and couldnt' answer questions. People looked at me like I was crazy. I felt like I had Alzheimer's at 38, especially when my neuro prescribed Exelon, the drug for Alzheimer's to counteract the cognitive side effects. As I said, couldn't find a job, had no insurance. My topa-lovin' neuro was giving it to me and getting me on the patient=ass program through Johnson/Johnson, the maker's of TM. She didn't want to help me get on another anticonvulsant PA program. Finally, I had to charge another med on my credit card because I couldn't take this toxic gunk in my body anymore. The decay of my mind has escalated to the point that I don't know if I will ever be back to myself again. BEWARE of this drug. I haven't even covered the eye pain, insomnia, headaches, leg cramps (i can go on).

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

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

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