Topamax and headaches

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

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

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

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

I have been on 200mg of Topamax for almost a year, which helped my headaches immensely so I tried to ignore the itching. The itching got so bad (especially when I get hot and would sweat) that I had to go off of it. I have been off of it for about 4 weeks and I still itch, does anyone know how long this will last or if it will ever go away? If I am going to itch without the drug anyway, I might as well take it and have relief from my headaches.

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 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 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.

Ive been on Topamax for almost 3 years. Was on 100 mg/day for 1 1/2 yrs. Couldn't take the spaciness so I went off of it. A new Dr. put me back on 50mg/day 6 months later because my headaches were so bad. I'm doing great. Headaches are less frequent. Maybe 2-3 per month but not so violent. But lately I've developed this twitching under my left eye. It's constant. Could it be the Topamax???

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!!!!!

I have been taking Topomax for migraines for about 3 years now. Staying at the 75mg at night dosage. Going to 100mg just does not work for me. GI disturbances too severe. Diarrhea mostly. Early on same as a lot of the other reports, tingling in hands, bad tasting soda, some hair loss, and intermittent upset stomach and diarrhea. Memory not as good as without the med and balance a little off. All of these have diminished in intensity and frequency. Up side, weekly headaches that forced me to go to bed gone. Being an irritable wretch because my head hurt, was about to begin to hurt, or just got over hurting gone. At this point in my life the pros still outweigh the cons and as long as that is true I will continue with the regimine.

i have bee on topamax for 2 years started out low amounts now i am up to 100mg at night and 50mg in the morning and i will take 50mg when needed for a headache if i get one thru the day . that is all i love it. no more in the bedroom all day missing life sick. no more head splitting open just shoot myself painful headache. i feel great and i function raising three boys two teens and one pre teen. im not saying that they don't give me a migraine but i can control them thanks to topamax. i hope it never loses its effectiveness because i will lose my piece of mind. oh before i go ,weight gain ! i am an semi-active person. i did not gain the weight at first but as i got older i did . but i work it out and keep going. i would rather 10 lbs more on my tush than a migraine busting my head open. so work out a bit ,go for a walk ,choose a good eating regimine, and lose your headaches.

After daily pounding migraines for ten months, the side effects of the tingling fingers, tongue, lips and toes; the inability to find words, the weird way certain foods taste, are all very do-able. What does worry me is the way I can get incredibly depressed, but the anti-depressant (Wellbutrin) I've been taking for more than ten years just suddenly started making me worse. I just keep telling myself that at least I don't have a headache. It definitely makes it worth it. The headaches were so bad, and thanks to the topamax, they're gone.

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

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

I have been on Topamax for 2 1/2 years at 250mg for migraines and have decided to get off because of side effects. I have had all mentioned: mood swings, dehydration, not sweating,tingling, dizziness, loss for words, short term memory loss,numbness, fatigue, GI problems, anorexic weight loss,rage... And this all began from the starting 25mg dose!
The migraines decreased from 24 a month to 12, at best down to 6 or 7, but I seemed to hit a plateau then back to 15.
I saw three different doctors and all wanted to simply increase the Topamax or add another med (Depakote, beta blocker, etc.)
Finally, I found that a problem with my neck may be causing the headaches and treating that has reduced them enough for me to try and get off the Topamax. I still rely on the Relpax to get me through the bad days, but I'm hoping I can get free of the Topamax for good!
I just encourage anyone thinking of starting Topamax to investigate all possible migraine causes before starting!! Topamax doesn't cure the migraine, it only blocks the pain! And the side effects are not worth it if you can find another way to alleviate the problem!

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

I have been taking Topamax for 3 years. I started out at 25 mg, ramped up slowly to 75 mg and have been on 100 mg for 1 year. Over the past 2-3 months, though, I've been feeling very weird, almost like I'm not here sometimes. It's hard to explain. Sometimes I'll get all the way to work and I can't even remember getting ready for work. My short term memory is shot, and that's bad for me. I used to remember everything. I just don't feel like me anymore. I did lose about 30 pounds when I started taking it, but I've gained that all back. I also had tingling and the carbonation in sodas went away for about 6 months. It did take away my headaches for the most part. Axert alleviates any that I do get now.

I started taking topamax in 2005, for bad headaches due to my antidepressant zoloft it is now 2008. I am 5'7 and weighed around 140, I now fluctuate from 115-125, no more no less. From taking the pill I suffered a great deal of weight loss and disorders. I now am unable to gain weight even when i eat cause my body is not the same. I mean its great if i needed to loose weight but at 5'7 weighing 120 soaking wet its not.

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 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?

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

I have been back on 125mg of Top for about 9 months now. I tried it for 1 year prior to this with too many side effect. I have taken it for migraines and an eating disorder. Instead of helping this time around I believe it triggered emotional issues, panic attacks, nerve damage in the occipital region of the left side of my brain (more than what seemed to already be causing headaches from the start), I relapsed with my eating disorder and lost too much weight, and had something called psychosis. Psychosis is a disordered thought pattern seen in many different mental illnesses or those in a confused state of mind. When I'd look at a stop like I would not be able to determine in my mind whether it was red or green and I would just go through it. I felt like I was going into some sort of coma all the time as well. Now that I am on an eating plan and exercising a bit less the side effects are a little less but the doctors are looking for an alternative at this time. I have tried every med out there.

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

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 have been on Topamax for 2 years for maigranes. I am 50yrs. old and suffered with headaches from the time I was 14 yrs. old. I used to wish I could just die to end the headaches I had all the time. Most Dr.'s didn't know how to treat me. Then I found one who read about Toapmax and let me try it. It has been a miracle for me. I take 100mgs a day. Yes, I have terrible side effects. I can't remember words, I tingle all over. I can't spell anymore. I will be talking and just forget what I am saying. By breast hurt most of the time too. I could go on & on with the side effects. BUT... MY HEAD DOESN'T HURT for the first time in years! I will gladly put up with anything so I don't have to hurt anymore. I thank God for this drug.
Sherri in Ar.

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

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

I have been on TOPAMAX for over a year and until recently I didn't realize I was suffering from any side effects. It helps the content headaches and the weight loss is great. In the past six months I have been suffering from severe chest pains, you would think that it was a heart attack. The doctors can't seem to figure it out. After the help of my family doing research, we've found that TOPAMAX DOES NOT mix with METFORMIN for diabetics or LAMICTAL for bi-polar or seizures. Why don't the doctors or the pharmacist warn you about this kind of stuff. I have went from a fairly healthy energetic person, to someone that can even get up and go to work. I have 2 to 3 attacks a day and each one drains me more and more. It is not good for my mental well-being, and I am uncertain if it will have any long term effects or damages on me. It has not been proven that this is the cause of my pains after specialist to specialist and many more to come, but I am positive it has a lot to do with it. I just don't want to hurt any more.

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

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

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

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

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

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

I have been on Topamax for a little over a year. I've had most of the side effects; tingling, numbness in the fingers, dry mouth, forgetfulness, and weight loss - love the weight loss. All the side effects have sort of slowed down as I've been on the medication longer. The weight loss has slowed and I've even began to get my appetite back- I'm afraid I'm going to start gaining weight now! I've lost about 40 pounds and I needed to lose it, so that was wonderful. I've had a very hard time losing weight all my life so this was wonderful.

I was addicted to Coca Cola and this med also helped me kick that habit because I lost my taste for the carbonation.

Does anyone know if the weight loss usually evens out after about a year or a year and a half? I need to lose about 30 more pounds and was hoping that I would continue losing weight!

Anyway, I was on the Topamax for headaches and it has completely helped that! It has truly been a God-send for me. Other than monthly hormone headaches, I don't get migraines hardly at all!

I am wondering about having my doc up my dosage for the weight loss aspect????

I had been dealing with numbness in my hands and feet for about a month (I've been on Topamax for maybe 2 months now, maybe 1.5 months...) and I am happy to deal with that. Anything is better than the migraines that I had, and anything is better than waiting for the next migraine to start.

But for the past few days, I have been dealing with a total shortness of breath. It's like I can't catch my breath, in a way... or, as my mom put it, can't really get a "fulfilling" breath. I am constantly yawning, but that's how I am getting to that deep breath, although it takes me 3 or 4 tries to get there. It's frustrating, and SCARY!

I called the Topamax number today, and the nurse said that the side effects should only last 3 months total, but 1.5 more months of this?! I can barely imagine 1.5 more hours!!!!!

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 have been taking Topamax (25mg twice a day) for about 2 years now and it has greatly improved the frequency and intensity of my migraines. (I used to have a minimum of 4 migraines per week, and though medications such as Immitrex and Zomig often work, it's still hard to function properly when you have so many headaches. The Topamax has brought that number down to about 1 per week.) The side effects are not too bad, but I am freezing all the time and very tired - complete lack of energy. I almost feel like my head is in a cotton ball, like everything is just slightly fuzzy and I'm a bit disconnected. I wouldn't call it feeling stupid though... I am still able to do my job well; perhaps a slight lack of concentration. Some dizziness, but nothing serious. I have recently started experiencing weight gain, rather than weight loss (not sure if this is related to the Topamax). When I first started taking the medication, I also had that horrible numbness in the tips of my fingers, but that went away.
I wouldn't want to give up Topamax now, because I just can't go back to having that kind of pain and vomiting 4 to 5 times per week.
Good luck to everyone!

I am a 32 y/o female that was put on Topamax 10 days ago for migraines. I am taking 25mg twice a day so far, and the side effects I have experienced are all carbonated drinks taste flat; including beer, and if I take it close to bed time, I cannot sleep. The medication actually revs me up! Nothing i cannot handle. I have not had any problems with loss of appetite, nausea or diarrhea. Sure, sometimes I feel a little spacey, but I did that even before I started the medication. My doctor did tell me that you do need to drink plenty of water and eat plenty of protein. Also, when I start to feel a little spacey, eating a small amount of sugar seems to help with that... I have had a few headaches since starting the medication, but I haven't had a full blown migraine!!! I will continue to keep you posted. So far, I haven't had any side effects that i can't live with and by reading the posts and talking with several other people on the medication, it seems like the side effects are temporary and improve as your body "adjusts" to the medication. I am a nurse and I guess I am at at advantage because I am educating people on daily basis about this very issue!

Okay, my Dr. switched me to Topamax because I was taking my Relpax too often (3 x a week on average, but it actually stopped my headaches) which I did not realize meant that I had chronic migraines. So far I am less than impressed :(

I've experience a little tingling in one hand, the left, have no idea of why it hasn't occurred in the other. No weight loss. I am under great stress at work (I have been diagnosed with generalized anxiety disorder that's being treated with 40 mg Paxil and 150mg (?) Buspar. The side effect that's killing me is the confusion and memory loss. You have no idea of how long its taken me to write this post. My mind will think of one word, but my fingers will type another. I will go back to correct and the same thing will happen. I can't really afford to be stupid at work. At home no one really cares if I'm stupid. I'm not sure if that's a good thing or a bad thing, but at least I have some place to be stupid.

The worst thing is I still have the freaking headaches. I want my Relpax back and they can keep these Topamax (and yes, I see why they call it that). I'm just to the point where I'm supposed to up my dosage to 25mg in the morning and 50 at night and I'm not sure if I'm going to do it or step the dosage back down. How long is this stupidness supposed to last, on average. At what dosage do you know if its working or not for your migraines? I'm very frustrated and about to toss in the towel.

Thanks for any help,
Just call me Dopey

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 have been taking Topomax for quite some time.Tried it several years ago, the mgs were not high enough (only 25mg/day).My doctor didn't really know the prpoer dosage.It didn't help the migraines.My new doctor has me on it again.50 mgs/day.Here's the good - NO MIGRAINES! Here's the bad: Acne at 45 years old, tingling doesn't even describe my legs or face, ringing in the ears, remembering names and places just doesn't happen, I'm eating less but gaining weight quickly,& one last thing- Itchy spots that I would describe as "hot spots" if I were speaking of my dog. Still sticking with it because I don't have the migraines.I tried to slowly take myself off and the headaches came back.What choice is there?

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.

Severe side aches, inability to spell, severe fatiqued.See I cannot spell!!!!!!!!!!!! Headaches decreased but I cannot function with all these difficult side effects. I took topamax for four months. I worked up to 50 mg one in am one in pm. I had all kinds of test to see why i had the severe side Rightside ache. I have been off the topamax for 2.5 weeks. My side ache is very minimal. I will have to deal with the migraines another way.

Hello, everyone. I didn't know there was a page like this, but I'm glad there is. I've been on Topamax for 3 weeks because the medicine I was on for 2 years didn't do anything and the headaches weren't going away at all anymore; they were continuous. The first week at 25 mg I had the tingling for a day or two, the involuntary muscle twitches, the terrible mouth taste, and the chest pain. All but the terrible taste went away by the second week at 50 mg but I started getting wobbly legs and dropsy. I read an article somewhere where a person on Tomamax called the drug Stupamax or Dopamax and said anyone on it turned into a box of rocks. The box hit me at 3 weeks and 75 mg. I'm not wobbly anymore, I'm still irritatingly dropsy, and I am doing things that only a person with half a brain would do. Plus, my ears have been ringing for two days, and today I feel like I'm in a tunnel and everything is far away. I'm getting ready to call my doctor. On the OTHER hand, I haven't had a headache that lasted for more than a half hour in 3 weeks. So what's best? Going back to headaches or continue to evolve into a box of rocks?

I've been on Topamax since just Tuesday, 10/9/07. I find that I get very tired a couple hours after taking it and I have horrible nightmares and very dark thoughts, too. Diet coke tastes so HORRBILE which is bad because I loved my diet cokes, but then again I guess that's good b/c I need to stop drinking them anyway. My worst side effect is that I have horrible mood swings. Is this normal? Is this going to go away over time? Because if not, I'm going to stop taking it now. This is not like me and I am not going to subject my family to this - losing weight is not THAT important to me. Thanks for any help. :(

P. S. I'm taking 25 mg in the morning, afternoon and evening.

I have been on this drug now for 4 months. The first week i did experience the loopines and the loss of memory. My symptons went a way it has been a god send I have lost 37 lbs and also am sleeping (I have chronic lack of sleep issures) this has been the best drug I have been prescribed after being diagnosed with bi-polar disease. I has helped even out emotional swings and has allowed me to live a more normal life. I am a great fan of this drug...THANKS DR.!!!!!!!
HIGGY21965

I can't believe all of these posts, wow. I was starting to feel as though I was alone with all of the symptoms I was experiencing. I started this drug 2 1/2 weeks ago at 25mg am/pm and am currently up to 75mg am/am. I have really bad chest pain/tightness and mild shortness of breath. As someone else had mentioned, pop is enhanced not dulled, seems as though its like pins on my tongue. I have been forgetting words but not too bad, just for a couple of seconds. The anxiety is the worst, sometimes I lay in bed and the chest pain will increase and I get so axious it feels as though I'm going to die. I went to the ER last night but they did an EKG and told me my heart was fine that the chest pain most likely was not related to my heart. (I'm a 22 year old male and have never had problems with my heart) These chest pains only started after starting this drug. I'm ready to try something else. This was the first drug I was put on for my seizures, my doctor said it could possibly help the seizures/headaches/weight. These side effects are just too much.

Topamax has made my life a living hell for the last few weeks. I only started it three or four weeks ago but as of a week and a half ago (when I reached the dosage of 75/mg/day), I started getting anxiety attacks that lasted all day long. I've experienced mild anxiety before and this is nothing like it. I'm in college, and my parents finally got sick of the hours-long crying phone calls and drove in last night from 10 hours away to get me. Under this medicine, I get confused and have too much memory loss to take myself to the doctor. I'd rather have the daily pain of the headaches than the constant panic from this medicine. Did I mention that I weigh only a little more than 100 lbs before I started and I've been steadily losing weight from the alternating lack of appetite, nausea, and diarrhea?

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 since 2002 for migraines. I started out slow with 25mg at night for a week then 50, 75 then 100mg after one month. The following week I was suppose to start 25mg in the morning. I received headaches from that. I only stick with 100mg at night and have not suffered from a migraine since. Unless I am hung over. I did get the tingling in my hands and now I hate soda. Which to me is a good thing for all the sugar it has in it. However, when my script runs out and it takes me two or more days for a refill, I get extremely sick. Must be a withdrawel thing. So do not miss more than one day.