| Rating | Reason | Side Effects | Comments | Sex | Age | Time Taken
and Dosage | | Date Added |
  | | | | F M | | | | |
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| 5 | Severe Migraines (since teen) | Loss of vocabulary (soooo glad I've read all your posts - I thought it was age !) Lost 25 lbs the first two months from loss of appetite. Weight stable now, although appetite iffy. | Worked great on my migraines. Now I only get one if I don't eat regularly. It was three yrs ago, but never had the tingly extremities...? And, I never noticed the flat pop. But...just over the past few weeks - Coca Cola hasn't tasted as good as it usually does. I HATE not being able to "think of a word"...I teach - so I have to turn my "loss" into a quick classroom activity..."OK class, what's another word for.....?" | F | 42 | 3 years
100 mg PM 1X D | | 7/27/2010
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1 | Chronic Sever Migraines | tingley hands and feet numbness the shakes horrible nightmares trouble slepping paroniod suicidal..... | THIS IS THE WORST THING TO TAKE IM ONLY 15 AND I FEEL LIKE IM IN MY OWN PERSONAL HELL. IM SHAKEY AND SCARED I THINK ABOUT DYING. I CANT THINK STRAIGHT I SWARE I FEEL LIKE IM GOING INSANE. IN THE MORNING I HAVE TO DRAG MYSELF OUT OF BED. AND I STILL GET THE MIGRAINES. I CANT SLEEP IM RESTLESS. WHEN I DO FALL ASLEEP I HAVE HORRID NIGHTMARES IM TIRED ALL TIME. IVE GOTTEN EVERY POSSIBLE SIDE EFFECT BUT WHEN I GO OFF OF IT I FEEL LIKE IM HAVING WITHDRAWLS. IM TERRIFIED OF THIS DRUG! DO NOT TAKE IT, YOU WILL REGRET IT. | F | 15 | 2 years
50mg 1X D | | 7/27/2010
| 5 | Schizoaffective/Schizophrenia | Loss of Appetite | I got put on this medicine for my mood and to decrease my appetite that was increased by the high dose of Seroquel I am also taking. It has worked and I have lost about 7 pounds. I feel happy everyday, and I don't have any other side effects. | F | 22 | 1 months
100 MG 2X D | | 7/26/2010
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| 5 | Severe Migraines | crazy dreams, severe insomnia, severe numbness/tingling in face, numbness in extremeties, cramps, not being able to find the right words... | This medication is working great on my migraines. I just started taking it two weeks ago after jumping thru so many hoops with other medications that just didnt cut it. Im diagnosed with severe mental health problems and have not yet had any side effects of that sort. Im hoping none come along but I would totally reccomend that someone else at least give this medication a shot before turning it down. Im still at a low level but who knows what will happen next! | F | 23 | 2 weeks
25mg-50mg 1X D | | 7/25/2010
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| 3 | migraines | weakness, depression, the shakes, such tiredness. | After dealing with having a migraine everyday, I was willing to try anything that would take the pain away without destroying my liver, but this is awful. I am so weak and my hands shake constantly. I cant think straight without having to talk slow or just not talk at all. Reading, my favorite pass time, cant happen because every time I try to read for any length of time I get dizzy. I am only 21 and I have to go back to school soon, but I refuse to go back to school while on this medication. I am having dark thoughts along with anxiety. I am not a fan even it does take away the pain its not worth having the depression, the shakes or the suicidal thoughts. | F | 21 | 3 weeks
1X D | | 7/24/2010
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| 5 | Migraines | It took some adjusting to at first (or if I'd miss pills the side effects would come back) and that lasted maybe a month or two? I can't remember now. But when I first went on it I remember being SOOO exhausted that I felt like something was seriously wrong with me. The tingling in my arms and legs was slightly annoying and parts of my body that had never "fallen asleep" before (like my knees) would tingle. That was annoying but not terrible to deal with. Carbonated beverages tasted weird at first but I drank them anyway and just got used to it that eventually they no longer tasted weird. Lost a TON of weight! But that was a plus. When I was adjusting to it my memory was shot all the time and every once in a while I'd have difficulty remembering something big, oh, like one time I couldn't remember one of my friends' last names! Ridiculous. But like the other side effects, I think my body adjusted to that as well. | When I went on it I started with 25mg, then 50 mg, then 75 mg, then settled at 100mg. It is a drug you need to taper on and off of. It also takes some adjusting to the side effects but overall, this was the ONLY drug of any other drug (and I tried many, many) that did anything for my migraines. Was so worth it! But, be warned. Without insurance it is SUPER PRICY. Was paying something like $160/month for it when I had to pay out of pocket. | F | 23 | 2 years
100 mg 1X D | | 7/23/2010
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| 1 | Chronic Migraines | tingly hands and feet, anything carbonated tasted flat,horrible panic attacks, mood swings, suicidal thoughts, insomnia, when i actually do sleep i have crazy dreams | I have never felt the way I have on this drug. I have had severe chronic migranes since i was 16 and i cant even function with them but i will take them any day before the side effects i am getting with this med. It is scary!!!! I didnt start haveing the panic attcks until about 3 weeks after i stared takeing the med and they have just gradualy been getting worse. In the past week the have gotten to the point im getting them 5 to 6 times a day especially at night. i cant sleep and in the last 3 to 4 days i have started to get suicidal thoughts. I talked to my neurologist today and i hope that my life will get back to normal soon.. All I can say is if you are getting any of these major side effects JUST STOP TAKEING IT!! Its not worth it.. | F | 26 | 8 weeks
25mg 1X D | | 7/23/2010
| 2 | migraines | Tingling in fingers & toes, weird taste in mouth, confusion at times, trouble with conservations, tired, just a sense of not feeling all there. I did lose 8 lbs with it. | I had noticed that my fingers and toes were tingling and feeling numb on and off all the time. I have nerve damage in one of my legs and foot and was really scared it was spreading to other areas. This also just felt different from my normal tingling that I usually have in my foot and leg. On my last visit to my Dr. that was went I found out that was a side effect of this medicine. I also have had a weird taste in my mouth all the time that I have blamed on some dental work that I had gotten done not long after starting medicine. My headaches have started again so it seems as if it is not even working on that anymore also. So I am working my way off of this and hopefully the tingling will go away from my fingers and toes. This is a medicine I will be very happy to be off of. | F | 45 | 5 months
200 mg 1X D | | 7/20/2010
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| 3 | cluster headaches | tingling hands and feet,severe abdominal cramps constipation,loss of appetitite,no energy, | after increasing debilitating headaches emergency room visits where fluids and morphine were needed, missed work I was willing to try anything. However the side effects are no longer worth it...the vertigo is so bad I passed out at work.....I have to take daily laxitives....depression....I cant articulate at work I stumble over my words...my hair is thin....I lack enthusiasm for anything and the people around me notice the difference....I am slowly tapering off the 125 mg a day....i cant live like this....I cry or get angry.....I have insomnia....I dont want the intense pain of the headaches sometimes weekly but I want my personality back...my clear thoughts....laughing.. | F | 51 | 1 years
125mg 1X D | | 7/15/2010
| 3 | Migraines | Extreme exhaustion, difficulty with short term memory, recall, loss of vocabulary, lost train of thought, focus, concentration, inability to follow conversation, general dulling of wits, constant fog in the brain! | Severe migraine sufferer, 3-4 migraines weekly. Incapacitating & blinding, where bedridden for 2-3 days straight, sick and virtually unable to walk or stand when migraine occurs. Extreme sensitivity to estrogen, food triggers, and other drugs. The first two years I took Topomax I felt almost no side effects--just the sudden absence of migraines! It was wonderful. Initial tiredness for about 2 weeks as I ramped up the dosage to adequate level. However, for last 2 years *severe* brain fog and exhaustion has set in. Perhaps critical buildup has occurred & my body cannot process the drug; I am operating at the mental level of an 80 yr old. VERY hard to follow conversations. Miss my wits, but do not know of an alternative medication, and must continue to function/work! | F | 36 | 4 years
100 mg 1X D | | 7/15/2010
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| 5 | migraines |
Tingling in hands and feet, light trails, bruising, suicidal thoughts, etc. |
I loved the fact that Topamax got rid of a lot of my migraines however, the side effects were scary so I stopped taking it one night and called my Dr. To tell her the next day. Tingling in my hands and feet, all I had to do was reach over my head for a minute or two and I had pins and needles in my hands. Cross my legs to sit and one or both feet had pins and needles or would go to sleep altogether. Light trails. I would watch the light that surrounded an object that moved, move after the object had stopped moving. Breathing problems. I could no longer walk as far as before without being short of breath. I walk a lot at my job, about 6 miles a night or more. Bruising. I got bit by your average yard ant a few times on my foot and I scratched it like normal people do, they turned into bruises. Same with mosquito bites. Probably the scariest side effect I had though was at work one night. I'd had a rough day already and some problems at home. I found myself planning suacide. I caught myself and I knew something was wrong. I had never done that before and I was with it enough to realize that something was seriously wrong! That's the night I quit taking Topamax! I've been fine since then besides the fact my headaches are back. I will attempt to find another way to deal with them. I'm 32 and I've had them since I was a very small child. They won't kill me but I was scared that Topamax would! | F | 32 | 3 months
50 2X D | | 7/12/2010
| 3 | Migraines | Extreme weight loss!! I look emaciated and everyone thought I was on drugs! My Dad thought I had cancer that's how skinny I became. Complete and total loss of appetite. I had to stuff food down my throat which didn't help the weight loss. The weight loss died down though after about two years or so. Maybe more a year and half. Now I am as big as a house... don't think it's because of the Topamax. I am currently coming off of Topamax. All the way down to 25 mg! I started at like 100 mg which isn't much, but it's what I was on. | Go off Topamax slowly! You get massive headaches when you are going down. I suggest you even cut it in quarters if you have to. | F | 29 | 5 years
75mg 1X D | | 7/5/2010
| 1 | Migraine Headaches | Numbness and tingling of extremities. Brain Fog mild to severe that eventually cleared up as I was stepping up my dose. Once I reached my maintenance dose had thoughts of suicide at times of severe stress from job. Never had this happen prior to taking this drug. After being on Maintenance does for another two months starting having symptoms similar to IBS and Diverticulitis with severe pain in lower left quadrant. | Migraines also came back. Started tapering off medication. After googling Topamax and IBS. I thought I had diverticulitis again the pain was so bad and considering last time I had to have 13 inches of my colon removed this was not a pleasant thought(I have IBS) Dropped 18# in two weeks. Not very pleasantly I might add. I was so miserable that despite recommendations I stopped tapering and just quit taking the drug 4 days ago and finally feel half way decent. Seriously I think the daily migraine is better. | F | 41 | 6 months
200mg 2X D | | 7/4/2010
| 4 | migraines | tingling feet and hands, severe insomnia, loss of words and other memory problems, hair loss, speech problems, initial hyperactivity and a huge jolt in libido | I've had migraines since I was 12 and have tried nearly everything. Botox was working well until it caused my eyelid to droop. Started with 25mg 1x/day for 2 weeks, now at 50mg 1x/day at bedtime. 50mg has cut back migraines from 3-4 week to maybe 1 a week, except for menstrual migrianes. My problem is I've always had trouble with insomnia and take 100mg Trazadone + 10mg Cyclobenzaprine at bedtime to help with that. I'm sleeping 3hours and waking- unable to go back to sleep. Adding 0.25mg Xanax dosen't help. Can take Ambien and sleep about 6 hours, but it's not a restful sleep. Does anyone take Topamax in the AM to help with insomnia? | F | 47 | 2 months
50 mg 1X D | | 6/30/2010
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| 1 | migraines | Felt like a zombie, exteme tiredness, loss of energy, vivid dreams, and difficulty thinking/concentrating. | Did not help headaches and made me feel out of it. Would not use again. | F | 24 | 9 days
25 mg 1X D | | 6/30/2010
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| 4 | migraine | mild numb and tingling sensations, appetite suppression,dizziness, fatigue at first, taste changes | Side effects have really been pretty mild for me, and when compared to the constant pain of daily migraines, the trade off for me has been worth it. The numbness and tingling sensations have been transient, only lasting 15 minutes or so at a time, I've lost maybe 5 lbs in the 2 months I've been on it so that isn't terrible either. Soda started tasting awful once I hit 75mg, but it isn't any great loss to me not to drink it. The dizziness and fatigue happened for a couple of days each time my dosage was upped then went away. I started at 25mg at night for a week, then 25mg morning and night for a week, then 50mg at night, 25mg in the morning for a week, now I'm at 50mg morning and night. I would take the mild side effects I experience any day over the severe pain I was suffering on a daily basis. This has been a little wonder drug for me. I feel like I have a life back again. | F | 37 | 2 months
50mg 2X D | | 6/27/2010
| 4 | migraines | decreased appetite, weight loss, initial bouts of insomnia, word finding difficulty, mood changes, mild tingling in lips, hands and feet. | All in all, Topamax has really improved the quality of my life. I went from having several debilitating migraines a week to a couple of mild migraines a month. Sure, the beginning was a little rough...especially with the insomnia and some mood changes. But, things seemed to have leveled off and I'm back to really enjoying life. The only side effect that I still notice is decreased appetite. And I'm not complaining about this...I've lost 10 pounds of "baby weight" in two months and I feel great! Food still taste good, I'm just not hungry quite as often. | F | 31 | 2 months
100 mg 1X D | | 6/26/2010
| 5 | bipolar disorder | slight emotional dulling, hair thinning | I was diagnosed as a mild case of bipolar several years ago and have really struggled with the "med-go-round". After horrible luck with a previous med I was really afraid to be put another anti convulsant. But in the end, this stuff is really, really good. My mind doesn't race, my anxiety is that of a normal person;) and I honestly feel like me again.
I do feel a little dull at times, but a brisk walk or a red bull helps. My hair is thinning, but I'll just put in extensions and live with it.
There's a lot of bad opinions floating around about this med, but you may be lucky like me! | F | 29 | 8 months
100 mgs 2X D | | 6/25/2010
| 3 | Migraines for 30 yrs. Run in family | I have only been back on for 5 days. I am supposed to be up to 300 mg per day in a little over two weeks, but already the horrible pins and needls and the TWITCHING has started back... | Using topamax last year getting 3/4 migraines/WEEK. Dropped back to 2/3 a wk. Impressive because my migraines r HORRIBLE. Dr started me on 50 mg/day & went up. Was just at new pcp and the PA looked at the bottle I brought & wrote script sort of same way. (Been out for a while.) Wrote a 10 day supply. Didn't bother to fill. Went to new neuro & wrote new script cause he thought it was weird what she wrote & gave to me. Had to ?? him on how to take it (you know NOBODY EVER starts off taking a full dose). Started by giving 100mg PM 1st wk, 100mg PM & AM 2nd wk then 200mg PM & 100mg AM 3rd wk as full dose. WAY TOO MUCH WAY TOO FAST? Woke this AM & HEEL was acutally "ASLEEP". I don't think I have ever had THAT feeling in my life! Right eye TWITCHING again. Last time it started twitching called my old neuro when it started twitch for over 5 min/time (even vid taped it) & she said that didn't think it was connected to the topamax! MY GOSH.Do a search of topamax/twiching & see what comes up & how common it is. How on earth can a NEUROLOGIST NOT BE AWARE OF THIS? I think this is outrageous! If you ever become more well read than your doc. GET A NEW ONE! They are only as good as their education. If they don't stay up to date they are worthless. I am not saying don't do YOUR homework. I am just saying they darn sure better be doing theirs, too! Do research, ask them, if they don't know the answer, they should be willing to FIND OUT and | F | 47 | 5 days
100mg 1X D | | 6/22/2010
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| 4 | Migraines, chronic daily headaches | Fatigue, head twitches, memory loss and overall intelligence lowering | Wow. I came upon this site to look for another drug and I just now realized how many side effects I have that may be linked to Topamax. It's the only thing that keeps me functioning though without a daily migraine. And I have to be at work in order to pay the mortgage. I seem to take a lot higher dose than most of you. 300 mg. I take 100 in the morning and 200 at night. Everytime I try to wean back, the migraines hit me like bricks. I didn't even know for 4 years (and a 20 lb weight gain) that Topamax was the cause of my fatigue. I see the best specialist in town too. I guess he wasn't up to sharing that little side effect. I have kidney stones now (seven to be exact) after 5 years, not sure if this drug is the cause or another. I honestly can't wait until something new hits the market that works. I have tried them all over the last 20 years. | F | 42 | 5 years
300 mg 1X D | | 6/17/2010
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| 4 | Fibromyalgia | Word finding problems, which are part of the "Fibro Fog" caused by Fibromyalgia already, were greatly increased. Difficulty in concentrating and focusing. Initially had weight loss, which leveled off after first year on the drug. | Topamax has taken away all of the flare-ups with my fibromyalgia. I have had only one major flare-up in the past 4 years, and that was after a medical procedure. To not have the weeks-long and months-long flare-ups in my pain levels has greatly improved my quality of life. Unfortunately, the cognitive deficits have gotten so bad that I need to stop the drug because I can no longer think straight or remember things. | F | 56 | 4 years
200 mg. 2X D | | 6/16/2010
| 3 | Migraines | Numbess and Tingling in hangs, arms, legs, and feet. Memory loss/mild blackout, complete loss of appetite, weight loss, taste change in food, becoming very tired and never being able to sleep at night, and slight depression. | The sad thing is, I have been taking topamax since high school and the dosage has gone from 25mg to 150mg over the years i have never really had any problems with the side effects until now. The Topamax does help control my migraines though, so hopefully these side effects arent a long term thing | F | 20 | 2 weeks
50MG 3X D | | 6/13/2010
| 3 | severe migraines/TTH since age 10 | i have not really experienced any side effects yet, i dont think... i just seem to be a little more tired than usual | i have only been takin this for two weeks and took only 25 mg at bedtime for 1 week now i take 25 mg at bedtime and also in the morning. i dont think i have experienced anything from this medication yet, good or bad... i am a big time diet coke and coffee drinker and they both still taste fine to me. i do have a little tingling in my nose every now and again that lasts for maybe a few seconds and goes away, and i have sent a few text messages that made no sense on any planet. but after having suffered from migraines and tension type headaches for the last 20 years and just constantly feeling like i would like to slam my head into a brick wall, i am going to stick with this for a couple months and see what happens. a couple of my girlfriends had taken this in the past for migraines and had great results as far as the migraines tapering... i did watch them suffer through some memory problems and too much weight loss for their already tiny frames, but we shall see what happens.... | F | 30 | 2 weeks
25 mg 2X D | | 6/11/2010
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| 4 | migraine/cluster headache | at first I had numbness in my fingers and toes, under the eyes, and lips. tiredness (but was ok since I took it at night), loss of menstrual period, carbonated beverages taste like metal...which is ok because they're full of calories anyway! | I had never had any problems at all until all of a sudden out of the blue I got migraines and visual disturbances like nobody's business. The Dr put me on Topamax gradually, and I experienced a lot of the initial side effects that a lot of people are posting on here...but with the gradual increase mine were very manageable, and if the "tingly fingers" became too much, my Dr. didn't increase my doseage as planned, but waited until my body was ready. We worked together to find my correct dosage, and are discussing my BMI (I'm a small framed woman) because I have lost some weight on the drug. He's concerned that I need to decrease the dose now that my side effects have diminished and I haven't had a headache in a couple of months. I really feel like my Topamax experience has been successful, not "perfect" -- because it's a try-it-until-you-find-what's-right-for-you kind of drug -- and my Dr. has been very clear about managing my side effects and NOT having me on any doseage that's causing me any impaired functions. I know everyone's experience is different, but I have been pleased with how my Dr. has handled mine. I know that it's not in our plan for me to stay on Topamax, but to gradually decrease until hopefully I don't need it anymore. Good luck to those searching for help! | F | 29 | 6 months
100mg 1X D | | 6/6/2010
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| 1 | intractable migraines | loss of feeling in my hands, band headache, stabbing pain in my toes, chest tightening, severe abdominal pain lasting for days, slurred speech, constipation | I have horrible migraines but I'll take them back and try something alternative to get off this horrible drug! I had the worst abdominal pain in my life due to severe constipation, couldnt feel either of my hands, had chest pain, leg pain and stabbing pain in my toes. What a terrible experience! | F | 46 | 2 weeks
2X D | | 6/4/2010
| 3 | Mirgarine | Horrible taste in my mouth, like metal or blood all the time! I have been so tired for months it is a nightmare. I lost 15 lbs, cant eat everything tastes so bad. Yes it worked on my headaches but i have to come off of this drug. Cant, eat, think clearly, work well etc. | | F | 45 | 8 months
100mg 1X D | | 6/1/2010
| 3 | depression, mood stabalizing | increased tingling (meaning pins and needles) in feet/legs/arms if i sat weird for periods of time (i became more aware of my posture to prevent it). soda=flat taste, weight= lost 15 pounds, appetite = slowed at same rate my thinking did. Had to increase prozac to fight INCREASE in depression at 200mg/topamax | Now that I'm one week off of topamax, all the prozac "figit-ness" is back full force at night now that topomax isn't there to muffle it any longer. I like having a "quieter" body from the topomax - meaning taking down the - i gotta jiggle my leg,can't stop moving motor-movements - i didn't realize i got so used to with just prozac alone. however, topomax also muffled my intellect. After discontinuing the drug 5 days ago I've noticed,coinciding with my bodies rise in activity and motion and restlessnes, which I didn't miss at all, came a rise in speed-of-thought, word-recall, anetdotes and stories. They all seem like they flow instantly from my mind to my mouth unlike the gradual softening and slowing and quieting I had experienced the past 5 months I've been on topomax 100 (about 2 months at that dose), then 200mg/day. Now off of it my old "personality" is shining thru again, and I hadn't even realized it was so gone until i started coming OFF the topomax and saw it return. A night and day difference there, really. Overall though, to be honest, I didn't really mind being slower, less funny, less energetic, because I felt more "comfortable" ... like the topomax made me ride like a cushy Cadillac (no gunning it at a green-light or fast corners can be taken!), while back to my old self again feels like a sports car (quick throttle, can turn on a dime, but the ride is rough as hell - not made for cruising and you're tired after drivi | M | 30 | 5 months
200 mg 1X D | | 5/31/2010
| 2 | bad headaches, migrain family | saddness, not suicidal but loss of interest in life, crying, loss of appetite, loss of volcabulary, tingling arms and feet, severe muscle pain all over body, and HAIR LOSS! | started at lower dose that helped with headaches but did not eliminate, raised to higher dose. Relieved headaches but the side effects are too much to take. I will slowly decrease the dosage and see if I can live with the headaches. I have no emotion left but sadness, (and I have a wonderful life). | F | 59 | 6 months
60 mg 1X D | | 5/31/2010
| 1 | Migraines | Panic attacks, complete loss of appetite, excessive anxiety, tingly fingers, hands, and toes, memory loss, loss for words, manic talking, more :( | I took this drug before I had my son, whom is now 10 months now, for migraines about 1 year ago for a few months and I never knew what all my symptoms were until now I started taking it again, I think now I'm a Mom and care more about myself and am more observent so I noticed my fingers, and my anxiety was just thru the roof, and driving me, and my POOR fiance and family crazy! Ive been literally FREAKING out and threatening him so much! It's been so bad! My hands have been getting SO tingly today that they HURT and I have to stop moving my hands so they dont hurt anymore, it affected me at work also. When Im at work my memory is "different" and Im lost for words, and I am the lead nurse so its weird for me to feel that way. Im a new Mom and I cant even be a Mom because my anxiety is so insane!!! All I have to say is this medicine has messed up a lot in my life!!! I am tapering off now!!! Without any Dr!! UGH! Thanks for all your tips! I didnt know it was this damaging, until I read this website!!!! | F | 23 | 2 weeks
25mg 2X D | | 5/31/2010
| 1 | migraines | Terrifying drug that will someday be seen as medievally primitive. Suicidal insanity crept up on me gradually. My doc said most people take this with no ill effects. I was not clinically depressed before taking it to prevent migraines. Yet still I became so unlike myself, suicidal thoughts and full of rage, I realized I COULD NOT GET OFF IT QUICKLY ENOUGH! IF THIS IS YOU, JUST QUIT THIS DRUG NOW--DON'T WAIT--THIS IS *NOT* THE REAL YOU--YOU WILL GET TOTALLY BETTER!! | I tapered off in 2 nights--down to 5Omg on night 1, 25 on night 2, then no more Topamax. I had no seizure, but I was willing to risk it--so I just stayed home for a few days. Withdrawal is harsh--2 to 3 weeks--but trust in a sacred life force, and trust my word, you will get through. Plus, withdrawal is still a better mental zone than "on Tope." On day 2 it felt like a glass jar popped off my head--ahhh! Good! But then I had near-total insomnia for 6 days, trembling, and diarrhea (a nuisance). Suddenly then I slept for almost 3 days straight. My mood gradually returned to normal and I felt like "me" after 2 weeks, though very shaken and upset by what had happened; I felt normal and controlled at 3 weeks. Every bad moment of withdrawal, remind yourself "This is *not* the real me, I have been poisoned and am now detoxing." Have faith, love yourself :) | F | 43 | 2 months
100mg 1X D | | 5/27/2010
| 3 | Bipolar-TypeII/migraines | Common words are missing from my vocabulary. Its like a hole in my thinking. This gets worse the higher the dose. At 200mg Im an idiot. After this long on the drug I now have chronic abdominal pain. | At least the migraines are gone. The costs totally outweigh any benefit beyond the 100mg dose, at least for me. At 100mg the occassional migraine sneaks in, but at least I can function. Its a balancing act. | F | 33 | 5 years
100-150 1X D | | 5/25/2010
| 5 | cluster headaches | Really the only side effect I have had has been that carbonated soda's taste flat....and I needed to stop drinking those anyways. | Best thing the doctor ever did for me. I was suffering from cluster headaches for 7 years prior to taking the topamax. | F | 41 | 3 years
50 mg 1X D | | 5/24/2010
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| 5 | Migraines | Initially lost 20 pounds (gained it back when my thyroid slowed down). Memory loss, losing a word here and there. Not as sharp as I used to be. Inability to concentrate/focus at times. Initially had the tingling and change of taste, but that mostly has gone away. Still get some tingling every now and then. Started out at 50 mg, then was upped to 100 mg last year but backed off to 75mg as 100 mg made me really sick. | I had 4 to 5 migraines a week. This medicine pretty much saved my life. I've been on it for so long now, I'm starting to be concerned about long term side effects, as there are no real studies on it. | F | 45 | 6 years
75 mg 1X D | | 5/23/2010
| 5 | Migraine | Tingling hands, feet and face, loss of appetite short term, altered taste of food short term. | Never had Migraines before a year ago when they suddenly appeared and changed my life forever. Finally prescribed Topamax and cannot live without it. If I forget to take it my day is miserable. My short term memory loss I have now is nothing compared to the cognitive impairment I was experiencing without any treatment. I would not take myself off this for anything unless assured there was something better on the market. I do suffer from days where I need more than the dosage I am on and wonder if they are getting worse and should I take more but that just brings on more tingling hands and face. I have lost weight, I do have more energy because I feel a lot better than used to. I am no longer on antidepressants, I actually have periods regularly which is strange as a 40 year old with PCOS. This seems in complete opposite to most on this site, but I love this stuff. Its not perfect, but Its so much better than where I was. | F | 40 | 1 years
100mg 2X D | | 5/22/2010
| 5 | migrine | leg cramps, anxiety, trouble sleeping at night, hair loss, weight loss, memory-brain cell loss, dry skin, eye pain, severe migraine when I do get one | 6 years ago I started out with 25 mg and worked up to 100mg. The worst side effect was anxiety, it was major! I went down to 50mg. I've been on it since then and can't believe the change in my life. Just last week I went back up to 75mg, because my headaches have started to come back again. I didn't know some of my side effects were the same as what others were having. Would I still take it if I knew about all the side effects? YES-the side effects are worth the cure. Both my daughters are on it. Just go on a lesser dose when your able to. | F | 57 | 6 years
50 1X D | | 5/20/2010
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| 2 | Severe Migraines | Diarrhea, abdominal pain, hair loss, insomnia, groggy | At first it was wonderful. Topamax DID take away my migraines but the side effects were too much to handle. My hair began really falling out (I already have Grave's disease which makes my hair fall out so this was awful!) and the diarrhea kicked in about week three and it was constant! The abdominal pain was awful. I have horrible insomnia as it is and I was just starting to get THAT under control when I started Topamax and then suddenly I was up two and three times a night again. I experienced a loss of energy during the day as well. | F | 41 | 1 months
75 mg 1X D | | 5/19/2010
| 3 | Migraines | loss of appetite, memory problems, word recall issues, slurred speech, mood swings, weight loss | I started Topamax about 2 years ago and been suffering from Migraines for 4 years. First I was on Verapamil, but when that didn't work my neurologist switched me to Topamax. At first I was beyond excited; I thought it was a miracle drug. I could have hugged my doctor. Topamax allowed me to complete my job without multiple absences; it gave me hope. Then my doctor increased my dose to 50mg- I started suffering from terrifying mood swings and horrific depression. Within a week I was back to 25mg and have been on that ever since. While this medicine does do wonders for my Migraines (have cut them down to one every couple of months), it's side effects are hideous. The memory problems have gradually come on and within the past couple months I've started experiencing slurred speech and severe recall issues. Where there was brain fog before, now there is a solid wall. Since I'm in graduate school, the drop in IQ is taking a severe toll on my performance. I'm currently searching for an alternative. | F | 24 | 2 years
25 1X D | | 5/18/2010
| 3 | Topiramate | At first the only side effect I experienced was tingling in my hands which resolved quickly. The medication was actually quite effective and my migraines decreased drastically. After being on the 150 mg dosage for about 6 months, I experienced a PANIC ATTACK. I CALLED 911 BECAUSE I GOT DIZZY AND COULD NOT BREATHE ALL OF A SUDDEN WITH SEVERE CHEST PAIN,about an hour after taking my meds one night. I had never had a panic attack before and had no history of anxiety. Wasn't even feeling nervous or upset that day... I knew something was not right. I knew the medication could cause anxiety and thought this might have been the cause of the attack. I asked my neurologist and she said no way, any problems would have been experienced within the first month. After the attacks continued every single night (an hour after taking my meds) for almost a month, I insisted I be tapered off of the medication. Within one day of being off of it the panic attacks stopped. Now I have to deal with the | I don't want to discourage anyone from taking this medication since it helped me so much with the pain. I just wish this side effect was more well known so my doctor could have identified it sooner and i wouldn't have been having multiple panic attacks every night for that whole month, losing sleep and being nervous I would wake up with one. Please be aware and if this side effect happens to you insist on getting off of the drug! | F | 26 | 7 months
150 1X D | | 5/18/2010
| 4 | Migraines | Tingling in finger tips; numbness/tingling in feet; memory impairment | I started slowly on Topamax for everyday headaches/migraines. I was on 100 MG for years, until my most recent visit, when they increased me to 150 MG, because I was still getting headaches nearly daily. Since starting on the increased dosage, I have hardly experienced any headaches, and the ones I do have are sinus headaches. The side effects are worth it for the relief of the headaches. I do admit that the memory is probably the worse, but for now, I will just blame that on old age. I notice that I will forget things like people's names and common things that you should remember, but I still do fine to function at work. I already recommend this Rx to all my friends and family, because a lot of them are headache sufferers! | F | 36 | 3 years
150 MG 1X D | | 5/12/2010
| 3 | Migraine Prevention | Since being on this medication I have been dizzy, my taste for food has totally changed and I find myself feeling nauseated after eating. I am always tired feeling. I have stomache pain constantly and so far I have not lost any weight. | When I was first put on this medication, my doctor started me out on 25 mg once a day for two weeks and then bumped me up to 25 mg twice a day. Aside from all of the side effects, I have not experienced a major migraine since being on this medication which is a big plus. I am going to check with my Neurologist though to see why I am experiencing so much stomache problems, (constant burning in stomache)and see if I can be dropped back down to 25mg a day. | F | 42 | 2 months
50 Mg 1X D | | 5/11/2010
| 3 | Seizures and migrains | Tingling in feet and hands, anxiaty, depression | I have not had a seizure since I have bn taking topamax and my migrains have vanished. Both are related to head trauma results from a car wreck. The tingling and anxiaty... Depression... Its ending up like all the other seizure meds ive tried (i dnt take thm like I shld bc the side effects). | F | 23 | 6 months
100mg 2X D | | 5/8/2010
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| 1 | Migraines | Depression, anxiety, weight loss, confusion, difficulty concentrating, loss of ability to function, extreme fatigue, weird sense of taste. | I was started on Topamax at 25 mg and titrated up to 100 mg to control migraines, but I got progressively sadder and more confused as time went on. It was debilitating; I work as a freelancer and actually lost two commissions because I simply couldn't motivate myself to finish the projects and couldn't concentrate on my work. I lost any interest in my work, my family or even crawling out of bed in the morning. I felt horrible! I could tell myself intellectually that nothing was wrong, but for no reason I would be swamped by an overwhelming feeling of sadness and begin to cry for no reason. I wanted to do nothing but crawl into bed and sleep, which is what I did most days.
Some days I actually forgot to eat until dinner time and I lost 15 pounds in three months, which would be fine if I was eating healthy, but I was simply forcing food down at the dinner table to survive. The last straw was when I locked myself in the bathroom and cried for two hours. My husband was frightened and called my neurologist, who immediately took me off the Topamax. I'm praying that he is right and I'll feel better within the next week. I would rather have the migraines than live like this. | F | 46 | 60 days
100 mg 1X D | | 5/7/2010
| 1 | Bi-polar | Severe pins and needles in feet and hands, all my joints started hurting all the time. The only good thing was that I lost 10 lbs in 2 weeks and my mania was controlled by this med. But the benefits of the drug didn't outweigh the side effects and I still have the pins and needles in my feet and I don't know when or if it will ever go away. | | F | 50 | 6 weeks
50mg 1X D | | 5/6/2010
| 4 | Bipolar Disorder | Decreased appetite, tingling in fingers and toes occasionally | Calmed my hypomania down right away, better than the risperdal that I took previously. | F | 26 | 2 weeks
75 mg 2X D | | 5/5/2010
| 1 | Neuropathy | Memory Loss,extreme twitching,bad spelling,what i describe as electrical jolts thru my body,loss of appetite,hairloss,it feels like I am borderline bipolar,depressed,in horrible pain....it has made my pain worse than it already was. | This medication is horrible. I am going to my doctor tomorrow morning to get off of it. I have not been on it long but I have noticed that it has made me feel horrible. I do not enjoy my children and husband anymore but atleast I am still sane enough to notice these things. I have failed neurontin,lyrica and just about everything else and I am currently waiting to have a neurostynulator put into my back to help with my pain. | F | 31 | 21 days
200 2X D | | 5/5/2010
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| 4 | bulemia and bipolar II | tingling in hands and arms, loss of short term memory an sense of direction, some hair loss, b12 deficiency(also because I am a vegan) | overall, I feel the drug has helped me with my bulimia tremendously. I would never come off of it. I am in the process of lowering it to 200mg just bc of the memory loss. I do need to keep it at the 200mg level to maintain NOT binging and purging. In the past when i dropped to 100mg i went right back to destructive behavior of binging and purging and my bi-polar mood swings. I would rather suffer with some memory loss and direction loss than that.****OH TO ALL THOSE PEOPLE WHO ARE LOSING YOUR HAIR BUY VITAMIN H AKA- BIOTIN. IT WILL RESTORE YOUR HAIR. ALL SEIZURE MEDS AS WELL AS ANTIBIOTICS CAN MAKE ONE'S HAIR FALL OUT OVER TIME. THE VITATIM H IN BIOTIN WILL RESTORE IT. I USE IT AND IT WORKS. I AM A WOMAN WITH LONG HAIR AND I AM 34. JUST GOOGLE IT AND YOU WILL SEE. GOOD LUCK TO YOU ALL. <3 | F | 34 | 10 years
150mg 2X D | | 5/4/2010
| 5 | migraines,binge eating | loss of appetite, weight loss | This is amazing!!! I haven't had a headache or had an eating binge since day one!! My mood is better! My family can see a difference in my attitude. I feel like a new person! I can't wait to see my Dr. and give her a big hug!!! | F | 38 | 14 days
25mg 2X D | | 5/1/2010
| 1 | Migraine Prevention | I had full side effects - dizzy, nausea, no appetite, lose of taste especially soda (almost like a chemical taste), flu like symptoms, thought/sight/smell of food made me sick, loss of balance, confusion, disoriented, loss of memory, loss of thought, could put speech together, HORRIBLE stomach pains, Diarreha, headache-migraine, tired, fatigue, muscle pain. MENTALLY & PHYSICALLY INCAPACITATED. | I have suffered with headaches and neck pain for 20 yrs and tired many, many different meds and was really hoping this would be the one but for me NO WAY. I know someone else who uses it and had no side efeects at all and only gets 1 or 2 migraines a year. I wish I could be so lucky. | F | 44 | 5 days
50 mg 1X D | | 4/28/2010
| 3 | Bipolar | | My face has been tingly and numb. I have been MORE hungry than normal. I am hoping this subsides. Weirdly, beer tastes flat to me. I'm not liking this so far even though my mood is stabilized which is it's intended use I suppose....... | F | 26 | 3 days
25 Mg 2X D | | 4/25/2010
| 2 | Migraine Associate Vertigo (MAV) | Depression, decreased appetite, weight loss, sleep disturbance, concentration problems, change in taste of some foods/drinks, dizziness | I saw some improvement in my vestibular migraines, but I do not think that this drug has been worth taking b/c I am feeling depressed. I started the drug at 25mg a day for two weeks, then up to 50mg/day for a month, then 75mg/day for a month, then to 75mg a day for another month. I was depressed throughout the whole thing and it just seemed to get worse. Now I'm tapering off the drug because the side effects are worse than the benefit. If you can avoid this drug, avoid it and consider it a drug of last resort. If you're going to try it, drink lots of water when you take it and throughout the day and keep a diary of any side effects you experience while on it. I should note that I did have a history of depression prior to taking this drug, but I was completely recovered before beginning it. My doctor told me that once I taper off the drug, I should return to normal again within a few weeks. | F | 26 | 3 months
100mg 1X D | | 4/25/2010
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| 5 | Cluster Migraines | Tingling in fingers, depression, carbonated drinks tasted odd | The tingling comes and goes but is more rare now. The depression also comes and goes. I've had to give up soda, it was all I used to drink but they taste awful now. A good thing I guess.
It helped with the headaches immensely though.
| M | 36 | 6 months
50 mg 1X D | | 4/21/2010
| 1 | Mood stabilizer, migraines | Word loss problems, short-term memory problems, weight loss (extreme at highest dosage), intestinal disorders including acid reflux and diarrhea. | This med. seemed to work for mood and migraines but then I started having side effects that interfered with my quality of life. I tapered off and felt awful. I went back on it and the side effects were too much. I now realize that I had side effects from toperimate that I did not realize were from it until I stopped it. I thought that I was getting unstable (or something like that) so I started it again for about 5 months. It did not help so I am dropping it. The worst thing is that now I feel depressed and in a brain fog. As it works out of my system, I hope that I start feeling real again. I do not have time to feel bad on a drug that is supposed to help. By the way, I gained about 15 pounds back and have nothing to wear because I bought smaller sizes. That is depressing, too. I will not take it again. My dr. never checked me with bloodwork or anything and seemed to think I should just deal with it. | F | 55 | 4 years
200 mg. 1X D | | 4/21/2010
| 5 | chronic migraines | numbness and tingling, taste aversions, mild electrolyte changes (according to regular blood work) | Have had migraines as long as I can remember, never knew where one stopped and the next one started. Frequent trips to ER just to treat and be semi-functional. Tried countless drugs and treatments. Started taking Topamax when I was 18, took a while to get the dose right (numbness/tingling would be so bad in my feet I would fall, in my hands so bad I would drop things). Continued to go up and down for the first year until we decided 25mg when I woke up was all I really needed. After 6 months, I was migraine free. Still haven't figured out a consistent treatment for breakthroughs...nothing seems to help when they hit (save for a trip to ER to be knocked out...otherwise, just an assortment of OTC drugs I call "the cocktail" to make it tolerable until I can sleep it off). Have had the dosage steadily increased every 18-ish months to counter the tolerance my body develops to it.
It's definitely been my life saver. I wouldn't be functioning without it. | F | 23 | 4 years
50 mg 2X D | | 4/20/2010
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| 4 | migranes | depression, nausea, dizziness, fatigue, trouble concentrating, appetite loss, and wieght loss. | it works to relieve my migranes, but there's alot of side effects that come along with it. | F | 17 | 60 days
50 MG 2X D | | 4/20/2010
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| 3 | Migraine | Temporary: Ringing in the ears. Tingling (prickling) in fingers and toes. Long Term: Hair Loss and loss of hair health. Lower immunity. Blurred vision. Irritability. Mental lethargy. Difficulty waking up. Memory issues. | I have had chronic Migraines for years. I have tried most of the medications available for the prevention of, as well as the releif of the migraine once they do occur. When I started with Topamax I was happy with the results in spite of the immediate side effects of the tingling feelings,vision & difficulty waking in the morning. Soon though I started to notice my hair, which had always been long and thick, started to fall out and dry out. I tried all the commercially available hair products to help with this but nothing really seemed to help. I was really willing to go the distance for a medication that helped with my migraines since the migraines have had such a devastating affect on my life. They didn't help. I didn't lose all of my hair, it leveled off but it has not improved at all. The most disturbing side effect, that I don't read very much about, is the effect on the immune system. As a 46 year old woman who was not ill, other than some stress, I was surprised when I got Shingles. I mean I was shocked. I have always had a robust immune system. I have been catching colds and taking longer to heal from scraches than I usually do. I spoke with my neurologist about this, and the fact that the Topamax doesn't seem to be working as well as it first did. He didn't seem too concerned about the shingles (it was on my side) and didn't have an alternative to the Topamax that I haven't tried so he prescribed me a new anti-depressant to "boost" the effects of Topamax | F | 46 | 2 years
50mg 3X D | | 4/20/2010
| 4 | Headaches | Loss of memory, vision problems, depression, leg pain, lack of concentration. However, I have tred other medcations and Topamax is the ony medication that ca keep my headace at bay. It does not take it away, but it makes it at least bareable. The doctors cannot find a reason for my headaches and cannot give me a diagnosis so this is the only solution for nw. | | F | 35 | 2 years
175 2X D | | 4/19/2010
| 2 | Migraine | Kidney Stones | Drank plenty of fluids | M | 48 | 2 months
100 2X D | | 4/15/2010
| 4 | cluster headaches | stupidity - memory loss, trouble forming sentences, finding the right words, loss of concentration, loss of appetite, taste changes, tingling in extemities, lack of energy, confusion | I recently started back on topamax after a new cluster began. I took this drug 5 years ago and it stopped the cluster after about one month. The side effects can be hard to deal with but no where near as bad as the daily headaches. If your Dr puts you on a 100mg or higher dose to begin with, find a new doc. This stuff requires you to start slow and build up to a dose that works for you. Start with 25mg at night for a week then 25 at night and 25 in the morn after a week, then 25 in the morn and 50 at night for a week, then 50/50 for a while. I was able to drop down to 50mg per day taken at bedtime to limit most side effects and still keep the pain away. I eased off the drug after 4 months and was OK as the cluster had passed and was headache free for 5 years. I'm working back up to 100mg per day now since this cluster started and have just has the first 3 days in a row with no headache. I will continue to take the med like I did last time knowing what to expect. I quit drinking carbonated soda (and beer) last time and never started back so
no problems there. This med really makes soft drinks taste like crap but the caffine wasn't helping the headaches so it needed to go anyway. The side effects ease up after a while, especially if you can get by on a lower dose. I still keep some triptans around in case of a breakthru headache but I know with the topamax I can survive till the cluster passes and and all the side effects will be gone soon after I discontinue use of the drug | M | 37 | 4 months
50mg 2X D | | 4/12/2010
| 1 | Epilepsy | Hyperactivity, weakness in legs during running (I've been running races at least three miles a day five days a week for the last two years), dazed, empty-headed, forgetful, totally high, and lack of concentration | I've had seizures since I was 14, but I wasn't diagnosed until last October when I was I was kicked out of the military for having what I called "blackouts", which I now know to be seizures, I have generalized and focal seizures. This is my fourth seizure drug experience (I've also tried Keppra, Tegretol, and Lamictal), and for me, it was the worst, and that being said, Lamictal MADE me bipolar. But Topamax is taking away my ability to run, which means its taking away my ability to relieve stress, so I really, really hate being on it. That paired with constantly being high and spaced out and being a college student who can no longer focus in class in the final crucial weeks of the semester, I'd rather have seizures again than stay on this drug. | F | 19 | 3 weeks
75 Mg 2X D | | 4/10/2010
| 4 | mood disorder NOS (low-lvl bipolar) | Some slurred speech and disorientation; overall okay. | I was on it for 3 years (ending 2 years ago), low dosage, overall positive. I didn't really notice much when I was on it - a little steadier moods. But when I tapered off, the edginess, intensity, and anxiety that I'd been experiencing before taking meds came back... meaning that it had been helpful in taking the edge off my mood swings, anxiety, and depression! I'm doing okay without it now, but it worked reasonably well for me. Family history of epilepsy, migraines, and temporal lobe disorder, so it may have just been happenstance that I got a drug that works right on my brain. | F | 23 | 3 years
50mg 2X D | | 4/7/2010
| 4 | migraines | difficulty with words, spelling, tingling in feet, hands, generally feel stupid at times. When I went to 150 mg a day, became very irritable and emotional and anxious and had to go back down to 100 mg. | I have had migraines with aura since I was 11. I am 44 now. I have tried every drug in the book and only Topamax has reduce the frequency and severity of the migraines. I would have 14 migraines a month without, and am down to 2-4 with the Topamax. I don't like the side effect of feeling stupid at times, but if I go off, I go right back to having tons of migraines, so I'm just going to wait it out until they finish developing the drug specifically for migraine sufferers that is in the works. Topamax has also reduced the pain, but has done nothing to get rid of my auras. | F | 44 | 2 years
50 mg 2X D | | 4/5/2010
| 2 | Migraines | As my dose increased from 25 to 50 then 75 then 100, the tingling sensation in my hands and feet was unbearable. Changed from capsule to tablet, 100 Mg and this improved. After a few months my wife began noticing how poor my concentration and response was to almost anything. Led to very difficult period of depression low self worth before I saw my GP and came off | Ability to focus on anything very difficult, the comments aboput this drug making you stupid are spot on, I feel permanatly drowsy and very down all the time, and this has led to some very difficult situations. Ability to concentrate and respond severely impaired. Havent had a migraine since I went on them though, so at first I was happy, but now wish I'd never gone on them as I am constantly worrying about everything. | M | 35 | 9 months
100 Mg 1X D | | 4/4/2010
| 3 | debilitating migraines | memory loss (words,things,...) irriability,paranoia, parathesias to lt. face, arm and hands,minimal weightloss | I never even had a headache until I entered perimenopause at age 43, suddenly, in Nov. of 09, I was struck with severe debilitating migraines. After a few visits to the E.R., my OBGYN prescribed Vicoprophen, which worked, and I figured problem solved, although I never exceeded my Mdd, I think I was a little too liberal with the script, hence my referral to the neurologist. I was so nieve, I thought "great", they will give me the migraine fixer pill, Topamax lets you die in increments, instead of the migraine which will make you blow your head off. In the mean time, I will keep my ears open for the frienly local drug dealer. | F | 44 | 2 months
50 7X M | | 3/31/2010
| 1 | mood stabilizer | Dyslexia, inability to find a word, changed cadence to speech, tingling in fingers and toes, absolute loss of appetite (resulting in a major eating disorder and loss of 20 lbs in 2 weeks), change in the way things tasted (chocolate and soda especially became bitter and awful), sleeping all the time, stopped my birth control from working which shot my hormones all over the place and made me manic depressive. Memory loss and talking too much about my life to strangers. Weird need for acceptance and validation. | I stopped taking this medication finally because I ran out and didn't get some for a week. The medication does not have the same affects (good or bad) if you stop taking it and start again. For me, in my altered state of mind, this was bad because my appetite came back and I couldn't control my eating habits as much as I would like with my eating disorder. So that delay in getting my prescription probably saved my life or I would be about 85lbs today and convinced that that was fine. Very powerful medication. I have been off for several years now and still have some of the side affects. It's hard to find the right word and I still can't read numbers out loud in the correct order without going very very slowly. I killed my metabolism with the eating disorder and now have 35 lbs to lose instead of gain. Oh, and my ex's family still thinks I'm nuts because they met me on this medication. Would have married that one too. I don't recommend this medication. | F | 30 | 1.5 years
100mg 2X D | | 3/31/2010
| 5 | Severe Headaches/Migraines | Numbness of toes & fingers, (pins & needles) feeling cold, Mild hair shedding/loss, weight loss, feeling full, no appetite, feeling tired, being thirsty all the time, weight loss, twitching under eyes | When i first started this medication, i was a bit sceptical as ive suffered with chronic headaches/migraines since the age of 18 im now 34. I have tried alot of preventative medications, & painkillers which i became highly addicted to. It took about 3 months for the Topamax to really take "effect" i refused to give up the headaches were still happening in the first month or so after about the 6 week mark i started to notice that i got fewer & fewer headaches they were coming every second day then every third then fourth then twice a week, then once a week, then a few times a month & then they just stopped coming all together!! This was after about 6 months or so, i still got the odd headache here or there, but certainly NO migraines. I eventually worked my way up to the dose of 200mg per day which but i did this very slowly that is the only way with this drug SLOWLY! I have been on it for 2 years now & it has changed my quality of life. I have noticed lately more frequent headaches creeping back so i will be slowly increasing the dose again up to 250mg or to what i can tolerate. | F | 34 | 2 years
200mg 1X D | | 3/30/2010
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| 3 | migraine | memory loss, difficulty spelling, concentrating and writing, tiredness, tingling in extremities and face (fixed by taking CoEnzyme Q10), difficulty sleeping | I began taking Topamax over 2 years ago to prevent near daily migraines. It has reduced the frequency of my migraines by about half and has made them more responsive to my rescue meds. I am considering going off it however because of the devastating side effects. I used to be an A+ student, I graduated from high school with a 4.0 GPA. Now, I am struggling to make grades in college, and not because I am too social, I barely even go out because I always feel so exhausted. I have trouble concentrating, remembering things, spelling and constructing sentences. I had more to add to that list but I forgot it, which is typical. Very bad memory, compared to my very good memory before starting Topamax. I used to be quick as a whip, but not anymore, I am very very slow. I also have difficulty sleeping and have needed to get glasses since starting Topamax. I am glad I am not the only one who is suffering from these effects and I hope that once I go off the med I can get back to my old self. | F | 19 | 2 years
100 MG 1X D | | 3/29/2010
| 4 | migraines | Rated from the most dominant side effect to least dominant side effect: Initially menstruation cycle was every 2 to 3 weeks, then it all together stopped!, tingling of fingertips, loss of appetite, weight loss, fatty foods(like butter/margarine)and soda taste different, lack of concentration, occasional blurry vision. That pretty much covers it for me. | First off, I want to address, I there is a MAJOR difference in side effects between TOPIRAMATE(the generic form) and TOPAMAX!!!I can't stress this ENOUGH! I went from MEAN, ANGRY, IRRATIONAL, UNSOCIALABLE while being on Topiramate, to back to normal when switched to BRAND NAME TOPAMAX!!! It definately works. It took away my migraines that I have been treated for with maxalt, immetrex, vicadine, for 8 plus years. I still get an occasional headache, that I can treat with an Excedrin migraine. I can handle that. | F | 44 | 4 months
100 2X D | | 3/27/2010
| 3 | migraines | Was taking topamax for migraines. I also have severe nerve damage in my spine so I'm also on a pain management program for back. My 13 year old daughter keeps saying she wants her old mom back. When I ask her what she means she states that about 3 years ago I changed. I have weaned myself off topamax. With my doctors help. I have been completely off it for 2 weeks. I am irritable, on edge and weepy. I feel clearer in my head but I am a mess emotionally. Don't know if this is a temp side effect for not. | | F | 53 | 3 years
10 1X D | | 3/27/2010
| 4 | Migraine | Helped the migraine, but caused SEVERE irritability. | I'm thinking seriously of stopping Topamax, but first I will talk to the pain doctor who prescribed it. I'm way too grouchy. Topamax has helped ease the migraine a bit. The drug has taken the constant migraine pain from a level 8 to a level 6 (on a 10 scale). But my 40 year long marriage is suffering. I am so crabby. This is not worth ruining my marriage. | F | 60 | 1 years
100 mg 2X D | | 3/25/2010
| 5 | Migraines | I haven't had any side effects. | I started on 50 mg twice a day and the Dr. gradually increased me until the headaches went away. I am on 125 mg twice a day now. | F | 63 |
125mgs 2X D | | 3/24/2010
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| 4 | Chronic Magrianes | Not being able to find the right word and then not being able to pronounce it when I do finally find it. Significant tingling in both feet (more so in left foot) some in arms/hands. Some crying for no reason, eye pain and trouble sleeping. No weight loss for me at least not yet. | Recently I have been having problems with my left shoulder and my doctor advised I had a 'frozen shoulder' and said it might be from the topamax -wow that's scary! It's the only thing that works along with MAXALT when I get a migrane. Was getting 4-7 per week, started @ 25mg per day gradually increased to 150mg per day!! It does work, but am wondering if it is worth it. | F | 47 | 3 years
75MG 2X D | | 3/19/2010
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| 3 | migraines | 3 months on, 2 off then back on so on so forth.
tingling in face and hands.loss of appetite, made certain foods and drinks taste horrible.hard to focus on reading,concentration on certain things takes more effort. | i did find it helped a lot with the migraines as they were taking over my life but, loss of appetite and foods tasting funny lead to me going off them as i wasn't healthy on them, i found the concentration got better, and the tingling subsided. | F | 19 | 3 months
100mg 1X D | | 3/19/2010
| 3 | migraines | kidney stones caused me to discontinue the drug (and no one in my family has ever had them), tingling of extremities (b12 shots reduced this), nausea at first (went away), fatigue at first (went away), worse headaches at first (they improved after about two weeks of sticking with the drug), soda tastes bad | my headaches were greatly reduced, I didn't lose weight although my appetite was a bit suppressed, my moods were much improved overall...I am so disappointed I developed kidney stones | F | 25 | 4 months
100mg 2X D | | 3/18/2010
History | 2 | Migraines | lack of concentration/focus/ can't grab the word i want when speaking, HAIR LOSS, decreased appetite, memory loss, tingling in feet/hands. | I had to start on a VERY low dose because I have had such extreme reactions from other drugs in the past. After 2 weeks on this my hair has started to fall out (with the root attached) it looks so thinned now. I feel really really DUMB! dumb dumb dumb I have to really think about what I'm saying as I'm saying it, I pause frequently during my sentences. I have alot of trouble thinking of the right word (SO I'm so sorry if this sounds like it was written by a 5 yr old), small amount of tingling i don't mind that as much. I can't believe these are all happening to me on such a low dose after such a short amount of time!!! | F | 21 | 2 weeks
25MG 1X D | | 3/18/2010
| 5 | Chronic Daily Headaches | Tingling in hands and feet; minor memory lapses; minor lack of organizational skills; visual disturbances, but only when first getting out of bed in the morning. | Topamax has completely cured my chronic daily headaches. For almost 2 years of suffering, I told my family doctor he had to do something, so after a cat scan of my sinuses which came back ok, he sent me to a neurologist who diagnosed me and prescribed Topamax. I had pain in my head every day for 2 years, every time I coughed, sneezed, or bent over, plus migraines on top of that. That is now completely gone, and I have not had a migraine for probably 3 months. I will not go off Topamax, and I will live with the side effects as long as they do not get any worse or affect my job. I go for a follow-up in 2 days and will discuss these with him. | F | 46 | 6 months
50 mg 2X D | | 3/16/2010
| 1 | Epilepsy | everything outlined as "side effects" described on BNA. Much worsened seizures, vivid dreams, auditory hallucinations, movement disorders, insomnia, only to name but a few. | | F | 48 | 7 days
25 1X D | | 3/16/2010
| 1 | | Update from 9/2009 and 11/2009 about my daughter. | Its amazing how bad the side effects were and how they continue to slowly go away. She continues to get better and better every month. Each month I think wow she is doing so good then the next month its even better. I just noticed a week ago that she now has perspective- I didn't realize how little she had until it started coming back. Also we are concerned about memory loss- she is showing some signs of that- we are watching- hopefully that will improve-to those of you not experiencing side effects that is awesome, but please be careful if they change your dosage-you can be overdosed on this medicine! If you are considering this medication for the first time there are plenty of other things I would try before this. I hope one day this poison is taken off the market in the meantime. BE CAREFUL!! | F | 41 |
1X D | | 3/16/2010
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History | 1 | migraines (preventative) | Straight up stupid. | I'm glad I'm not the only one who experienced a drop in intelligence while taking this drug. It not only made me slower at performing normal tasks like spelling but also made it difficult to do things that are second nature, like telling time. They were so effective in making me "slow" that my husband scratched out the topimate and wrote "Brandy's Stupid Pills" above them. STOP taking them for an IQ boost. | F | 31 | 2 weeks
25mg 2X D | | 3/16/2010
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| 5 | Bipolar 1 | Weight loss, inability to concentrate (read a book), lethargy, trouble remembering words, slurring when tired. | This drug literally saved my life. Some of the side effects wore off eventually. I have no problem reading now and have normal energy levels. The weight loss leveled off as well. I still have the occasional memory or speech problem but it's a small price to pay for the results. My mind no longer races a thousand miles per hour. This truly is a wonder drug for mood disorders--it has also worked for family and friends. Just make it through the first few months--the reward is worth it. | F | 36 | 8 years
200 MG 1X D | | 3/11/2010
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| 3 | Migraines | Tingling and complete numbness in hands, knees and feet at times. Eye twitching in right eye, which has become more frequent with increased dosage. When I am no longer hungry I HAVE to quit to eating. It feels like could probably sleep for days. I'm spacey and have trouble grasping words. My performance at work has declined. I've lost 18 lbs.=D During my increases I become emotionally unstable torn between crying and being mean... | I've been getting headaches/migraines for 15 yrs. I experience about 15+ days of headaches a month. The severity of my headaches has decreased but the days that I have them hasnt. I've titrated up to 300mg/day. But I took only 50mg 2xday for a year, just recently have upped my dose to 150mg 2xday. I don't really mind the side effects. Just wish the eye twitching would stop. | F | 29 | 15 months
150 mg 2X D | | 3/10/2010
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| 2 | migraines cluster headache bipolar | weight loss, soda tasted flat, slowly lost my taste buds (took almost three months to get any sense of taste back), memory loss, felt like a zombie, severe fatigue, eye pressure. | This drug was terrible for me. I missed school frequently and my grades went down. I looked skeletal, became more depressed (and I couldn't eat to feel better because I couldn't taste anything!) When I was reading up on the drug, I realized the eye pressure was a really serious side effect and I stopped taking it. I learned my doctor was a moron. She didn't titrate me up on the med. She put me on a high dose all at once and I know this made my side effects worse.
Now that I have a good doctor I am considering trying topamax again. I can't live in this much pain all time. I have chronic migraines, cluster headaches, and bipolar II. It's just not worth it. If topamax can help at all, I will force myself to tolerate the side effects! | F | 19 | 2 months
100 mg 1X D | | 3/6/2010
| 5 | cluster headache | Worst is drastic loss of appetite (I'm already skinny), and many things taste metallic... chocolate cake tastes like rusty nails!... always this metallic taste in my mouth after eating anything. Not on high dose but feel a bit 'dazed', usually need a nap during the day. | Seasonal (summer) severe cluster headache bouts for many years, previously tried Sandomigran, Tegretol etc. Topamax is brilliant and actually works. Still have to go for the oxygen occasionally but so much better than ever before. Not game to up the dose or I'll starve to death; at present forcing myself to eat (mainly fruit)... but would rather suffer from malnutrition than full blown CH any day. | M | 60 | 2 months
25mg 2X D | | 2/27/2010
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| 5 | Epilepsy | Short term memory, weight loss, loss of appetite | Topamax was the best thing that could have ever happen to me. I had seizures for 41 years until I was put on this medication and for the past 3 years I have yet to seizure, so its been a pleasure to be on this medication. I am also on Lamictal and Keppra as well, but the only side affects I get from these meds is short term memory loss and loss of appetite. I lost 40 pounds from this med but it balances off once you’ve been on it for a period of time, so you just make sure you eat healthy. Being seizure free after 41 years, I think anyone who seizures that long who is now controlled would put up with some of the minor side affects, because all the seizures and its impacts to the brain, in most cases would have caused some brain damage anyway and affected your memory. Hey, having six years of college education, seizuring three times a week at work, been fired 6 times since 1990 because of it, it will be about time I can find a job where I can finally be controlled and not be judged by others. Hopefully something will come of it. | M | 44 | 3 years
100mg 2X D | | 2/27/2010
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| 1 | migraine prevention | Very Lethargic, had to take a nap after work, trouble finding words (felt very spacy), extremely thirsty (would wake up in the middle of the nite to drink water), hair loss, depression, and irritability (got written up at work for over reacting to something), major leg cramps. | I took this medicine over the summer last year and I basically slept the whole summer away. I HAD to take a nap after work and I was still able to sleep at nite. I stopped taking this medicine when my friends kept telling me I seemed sad. I lost a relationship bcuz of this med. I had no desire to do anything, let alone have a relationship with someone. I even lost my desire of working out. Had NO ENERGY!!! Basically, it caused symptoms of depression. | F | 34 | 3 months
1X D | | 2/27/2010
| 1 | Headaches | It was almost as if I had a stroke, My fingers, hands, and legs were non stop moving. Fingers were curled under. I could not work because I could not remember my job! | I do not recomend this drug. Yes the weight loss might be nice but I would rather be over weight then twitching all the time and not remembering nothing. | F | 32 | 4 days
50 1X D | | 2/27/2010
| 4 | migraines | tingling in hands, feet, face, difficulty thinking of words (cogn slowness), depression, weight loss, extreme coldness. Most of these side effects decreased/disappeared after about a year. | I started taking Topamax in college when I was getting a few migraines per week. It has helped tremendously, and I now only get 1 or 2 headaches per month. The side effects are a little scary though, and I definitely think that Topamax has affected my ability to think/concentrate. Beyond the normal hand/feet tingling, I have experienced some really weird feelings a couple of times when I feel like my hands or arms are enlarged. This will last for a few minutes and then go away.
I lost about 10 pounds when I went on Topamax, but have gained most of this initial loss back over about 2 years (I think it was mostly from the medicine initially affecting what foods were appealing...I can now drink soda and it doesn't taste flat). Also, when I first started the medicine I was cold all the time, to the point where I couldn't hold a drink without having napkins around it because it would make my hand too cold. I started taking B12 vitamins which seemed to help. Depression has definitely been a side effect on and off throughout. I am on a plan now to wean myself off over the next few weeks. While Topamax has worked wonders on my migraines, it has to be weighed against all of the side effects. I would recommend it as a last resort, after trying some of the other drugs out there that have less serious and numerous side effects. | F | 24 | 3 years
75 mg 1X D | | 2/25/2010
| 2 | Extreme Migraines | This has been the worst month of my life. I have never felt so out of touch with my life. The first night I took this drug, I felt like another person. I can't think clearly. I can't focus on anything and this seriously causes major problems with daily life. It has also made me experience extreme nausea and stomach upset. I use to love soft drinks, however that has since changed. They taste horrible now. I have tried Depakote ER, Amitriptyline, Maxalt, and Stadol Inhaler. I am just beyond words with this process. I just don't think I will be able to continue this course of treatment for much longer. | | F | 29 | 1 months
50 MG 2X D | | 2/25/2010
| 1 | Migraines | Stupid as a rock, mood swings galore, eye pain, throwing up 20x a day+, inability to remember words, couldn't form sentences, colder than normal, got lost driving 2 miles home from work one day, gained 25 lbs. in three weeks (went from size 2 to size 10), annoyed by everything, felt down repeatedly and hit head 6x (now concern of possible brain damage from falls - gee thanks), off balance the whole time and had to switch to flat shoes, stomach pain, eye pain and blurriness, etc. (there's more but I'm still lacking a memory and most of my brain). | I make my living in court as a trial attorney. Since taking this drug for my migraines, not only did it not help the migraines, but I've become dumber than a snail with a lobotomy and have had people staring in wonder as I crash into walls from the lack of balance, and utter completely scrambled and ridiculous phrases meant to be sentences. The day I left work to go home two miles away and got lost (same route for 10 years), I finally realized that maybe it was the medication. Did I mention I lacked insight too? I had such radical side effects that the neurologist discontinued it immediately with no gradual reduction. I'm still stupid after 10 days off of it, but I can at least find my car most of the time now. Each morning I go on-line and read Google listings or something similar to see how screwed up I still am speaking out loud. I also started talking to inanimate objects, but it's okay since my cat and dog think I'm quite eloquent. Another week on this junk and I'd probably have thought the inanimate objects were answering me. I'd say I won all arguments I had with myself, but I could never remember the subject matter long enough to complete conversations even with myself. I'm avoiding large butterfly nets and men in white coats now. I hope none of this is permanent, or I'm in trouble at work! | F | 55 | 20 days
25 MG 2X D | | 2/25/2010
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| 1 | rsd | loss of words, short term memory loss,bone pain,headaches,mood swings | 24 days of hell,and to top this off,after this short time, My doctor said I had to be WEANED off this drug, I could not believe it. Next time I will read everything I can and ask every question before even taken one pill. | F | 48 | 24 days
50mg 2X D | | 2/24/2010
| 4 | Migraines | Weight loss :) Good for me. soda tasted flat,almost like a chemical. EXTREMELY tired.Tingling in fingers and feet. Dizzy. And pressure in head.. loss is breathing, felt like elephant on chest. | I have been taking Topamax for a month now and lost 20 pounds which is great. But at first my head hurt slightly a lot.. And i constantly felt like i had a elephant on my chest, and always needed to take a deep breath like a short breath wasn't enough.. i felt trapped. I felt tingly in hands and feet. i felt dizzy and unbelievably exhausted.. But felt like i couldnt concentrate much in school either. | M | 14 |
25 1X D | | 2/23/2010
| 1 | severe migraines | LOST 10 pounds in 28 days, Slurred speech, couldn't spell, trouble thinking of the right words, couldn't complete a sentence, difficulty speaking, reversing words, couldn't concentrate, hands trembling, tingling sensation in fingers and face, double vision, severe ringing in the ears, VERTIGO, nausea, memory loss, very tired, dizziness, walking sideways | This drug is HORRIBLE. It does more harm than good. I was started on 50 mg 2x a day with no relief of migraines. After 3 weeks of pain, my Dr. upped my prescription to 3x a day. All these side effects started slow and steady, not realizing it was the drug, I thought I was severely ill. All MRI's and EEG's were normal, I changed Dr's and in one visit was told of these side effects. Stopped the Topomax and slowly got better. If I didnt change Dr's what would have happened to me. Plus my headaches improved too !! They should take TOPAMAX of the market and burn it . | F | 40 | 28 days
50mg 3X D | | 2/23/2010
| 1 | hemiplegic migraines | tingling in fingers, face, and inside my body, yes i know it sounds weird. ringing in my ear. lack of taste. pain in my eye. Visualy disturbances including, seeing things in slow motion, or a trail behind it specifically in lightly lit rooms. My brain would copy objects, for example If i looked in a fun mirror that distorts things a certain way... when i looked away i would see everything else like the mirror was reflecting for just a few seconds, but could repeat this with clear objects w/ texture, and mirrors. I also saw a blue tracer behind any object in lightly lit rooms. sleepy. being depressed, and moody. Not being able to taste food, and lost alot of weight. Also trouble thinking and concentrating. Felt like a zombie. A ton of hair loss. they thought some of the visual things were caused by my very complicated migraine, but i am very sensitive with meds and particularly to this one. it did more harm than good. I still have tracers and trails behind things, but it's not as intens | Everyone reacts to it differently. I think that it really does help some people. I will never take it again, and if you take it and finds it does more harm than good than stop taking it right away. | M | 19 | 4 months
100 mg 4X D | | 2/23/2010
| 4 | Seizures | tingling in hands, feet and face. Slight weight loss, low sex drive, soda tastes flat. Decreased appetite at first but it has come back a little. Leg cramps, and heartburn. Trouble concentrating at times. | I switched over from Tegretol and Keppra to this medication and let me tell you I would rather have heartburn and tingling in my hands and feet any day over being hungry all day long and cranky and an emotional wreck like I was when I was taking Tegretol and Keppra. I am able to actually manage my siezures and lose weight and get along with people. The side effects of this medication outweight the benefits! | F | 34 | 45 days
75 3X D | | 2/18/2010
| 5 | migraines | tingling in fingers,and toes,loss of appetite,bad taste in mouth
hair loss | | F | 49 | 1 years
30 mgs 1X D | | 2/17/2010
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| 1 | migraines | SEVERE visual disturbances, SEVERE irritability, loss of self, helpless feeling, anxiety, loss of taste for soda, increased common headaches, memory lapses, insomnia | I began taking 25 mg for migraines for the first week increasing up to 75 mg before finally calling it quits. No side effects were noted at the 25 mg dosage, but at 50 mg, the side effects mentioned became apparent, and at 75, they became intolerable to a point I found myself just wanting to pull my hair out. (I didn't...just felt like it.) The visuals I saw are like nothing I've read about. Sitting in meetings, people's voices wouldn't even make sense. My doctor was conveniently out of town, so I kept trying to deal with it. I asked a pharmacist who said "all medicine has side effects". Finally, I just quit taking Topamax (2 weeks ago) and I felt the best I've felt in a couple months in spite of having migraines. I'd rather have migraines and sanity than take Topamax that only just took my migraines to frequent common-like headaches and made me feel like I was out of my mind....Well, I was out of my mind. | F | 33 | 45 days
75 1X D | | 2/10/2010
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| 3 | Migraines | Not sleeping well, feeling a little loopy, and I can feel myself going into a depression, although it doesn't seem to be a deep one. Once or twice I had tingling in my feet and I am tired and achy, although I don't know if the ache is due to the medication. | At this point, I am satisfied, because the frequency and intensity of my migraine headaches had been increasing, making it more and more difficult for me to go to work 5 days/week. Now I go to work, and I'm tired and achy, but at least I can get to work. I can't ask much more than that at this point. | F | 53 | 3 weeks
50 MG 1X D | | 2/9/2010
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| 1 | Migraines | I'm positive it's Topamax that causes the twitching because I was on higher doses, then lowered down to 25mg 2X a day and the twitching stopped. Recently I was upped back to 50mg 2X a day when my migraines returned since I have now completed a migraine study that I was on for a year. Just WAIT until the new drug Levadex is released to the public! I was one of the LUCKY people on the study for a year. It's an inhaled drug like an asthma inhaler with the only side effects that it tastes funny and you just rinse your mouth out after you inhale the puffer. Get this, it kicked 99% of my headaches and migraines in about 10 to 15 minutes! Yup, I am NOT kidding! I am DYING now that I can't have the inhaler until the FDA releases the medicine to the public. It's been about a month now. Give it about two years for it to hit the pharmacy at least. I have tried EVERY drug out there and there is nothing like this! NOTHING short of a shot, and torodol shots don't work as well as this inha | I say feed this drug to the dirty pigeons! | F | 47 | 5 years
50mg 2X D | | 2/5/2010
| 4 | migraines | My headaches were worse at first--but i stuck with it and then they improved significantly; tingling in hands/face/heel that is painful at times (this has improved since my doctor recommended taking vitamin B and B12); hair loss (this still hasn't improved...); fatigue in first two weeks only (it wears off significantly); loss of words in the first month (that wears off); eyes burning and dry, especially when I am in the sun all day; reduced sex drive; I now hate the taste of soda; dry mouth; slight loss of appetite | Most of the side effects truly wear off, just be patient!!!! Also, this medicine has really evened out my moods. It makes me feel a lot better all the time. I have heard this is the opposite for some people (they feel angry on it).
You may feel your headaches get worse at first. Just wait--they will improve. Take vitamin B with vitamin B12 if you have bad tingling. This helped me a lot to reduce the tingling. It isn't completely gone--but it has helped. Others recommend bananas. | F | 25 | 2 months
| | 2/3/2010
| 4 | Migraines | Tingling in hands, feet, and face; depth perception; ten percent loss in body weight - which is typical with this drug | I started having migraines about 7 months ago and after many test the diagnosed them as genetic migraines. Being a very young teenager, my neurologist was weary to put me on this drug. My mother is a pharmacist and agreed to help me titrate up on the drug. I started losing my appetite while on 25 mg and titrated up 25 mg per week. I did not experience any help with the migraines (which were an everyday thing) until about a month of taking the medicine, which I got to 100 mg a day. It still did not get rid of them completely so we decided to bump up my dose to 150 mg a day. This is when I started experiencing the tingling and numbness in my hands, feet, and face. We went down to 125 mg a day and after continuing to be on this medicine it has helped me tremendously. If suggested, I would give this medicine at least two months to work. Like any other drug, it might not be for you, but it has given me my old life back - before the migraines. | F | 17 | 4 months
| | 1/31/2010
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| 3 | Bipolarll BPD | weight loss .. which was great. Some tingling in feet that went away in time and lost words. I couldn't find what I was trying to say sometimes.. frustrating | Topamax worked ok for me, I liked the weight loss (finally a med that helps you lose weight!) I didn't like the fact I couldn't read (focus) on it tho.. that was frustrating, as was not being able to get thoughts out fast enough. I went up to 125mg a day. Would be willing to try it again tho. | F | 45 | 2 years
| | 1/31/2010
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