October 21th
2009
6:47 PM
I have been on 50mg of Topamax for the 2nd time for about 8 months. This time not near as much weight loss but so many more side effects. I have had 3 kidney infections and just found out I have an ovarian cyst which is now being linked to this medication. It keeps the migraines away but I am not sure if the other pain is worth it, has anyone had any luck with other migraine medications? This had been the best for keeping them away but now I am at a loss as to what to do. A little toe and finger tingling I could handle....cyst that make me double over in pain, NOT SO MUCH!
-- By addison72 | Reply | (1) replies | Private Message me
September 28th
2009
2:05 PM
I started Topamax over a year ago and titrated up slowly, 25 mg a week until I got to 125 mg a day, split dosing. I was started for migraine prophylaxis. Once it kicked in, it did an amazing job of keeping my headaches away. But, here is something really important: if you are going to have surgery, there are contraindications with Topamax and anesthesia. No one either knew this or told me this and I only found out weeks after I went through a really lousy experience. What I believe happened is that the combination threw my body's pH balance off. I felt like my insides were burning and it was only at that point that I started to experience the severe diarrhea and weight loss, fatigue, and general malaise. It lasted for weeks. All I could figure at the time was that it was just taking me a really long time to recover from my surgery (ovarian cyst removal and unilateral oophorectomy), but that didn't make sense. I felt like I had a horrible flu for weeks. I kept seeing my doctor saying something was wrong with the way I was healing (ie, i had an infection or something). Anyway, this eventually stabilized as I back off the Topamax. I was so weak that I didn't even realize the memory issues or word finding problems, but when I started to feel better physically, I did notice those. That REALLY bugged me. I like to be sharp. So, I tapered off. About 1.5 months later, my headaches started coming back. I decided to try Topamax again feeling that now I understood it much better and could watch it more closely. Maybe this time I could ride out the side effects. Well, this time several months passed at the same dose. My headaches were still there and I had no side effects. We upped the dosage. Still having headaches, but no diarrhea, no weight loss (in fact, weight gain of 15 pounds over the last 9 months since last Topamax round), no real problem with word finding, etc. Up to about 200 mg daily by this time. It has been about 6 months and I have started tapering down and about to give up, down to 150 mg daily right now. NOW, here is something interesting: I just have another surgery, but no anesthesia. It was oral surgery. I did, however, have to take a round of antibiotics. It seems that this round of antibiotics has kicked the cycle into gear because I started having gastric problems, perhaps because of the antibiotics (although in the past, I have not had problems with antibiotics before, ALTHOUGH I did have to take them last year with my in-hospital surgery), I don't know, but I have finished the round of antibiotics and I am still having diarrhea. My appetite is suppressed, and I have lost 5 pounds in this last week. Many people say you cannot lose weight if you stop Topamax and restart it later. That is an interesting. I wonder why that is. Topamax is such a strange drug. Why did it not work for me the second time I took it, or at least for 9 months? Is it just now kicking in with its side effects as the result of upsetting my gastric system? Will it start working now for my headaches, too? I think I will continue to taper off or maybe see if I can prevent headaches on a very low dose. Oh, another interesting thing: I found the first time I took Topamax, it made me feel energized. I found that this time, it made me feel the opposite. I sleep a lot more and feel more sleepy during the day.
-- By florestan | Reply | (1) replies | Private Message me
June 9th
2009
1:28 PM
I have been taking Topamax for almost five years. I am currently taking 200mg in the morning and 250mg at night. The tingling in my feet and hands come and go. The weight loss has tapered off. My neuro and I very slowly worked up to this level but it has finally put a halt to my migraines. I may have one once or twice a year. He says this is the highest we could ever go so thank goodness the headaches stopped. The past year I have begun to be very forgetful, Over the past three months it has started to affect me on a daily basis. Over the last week, I haven't been feeling like myself and have started to feel emotionally numb. Meeting with my neuro today, Not sure if its the meds or not causing me to feel numb or just life's' stress.
-- By simon09 | Reply | (1) replies | Private Message me
May 29th
2009
4:26 AM
I was prescribed topiramate (it finally went generic- I've been trying to get this med pre-authorized by Medicare for years) a couple of weeks ago for off-label use related to bulimia, more specifically, for weight loss. I also take lamotrigine, an anti-convulsant, for bipolar disorder.
I began at 50mg/day for 2 weeks then titrated to 100 a few days ago. The side effects I've noticed so far are opposite to most of the ones noted here. I am not lethargic or sleepy at all. It's 3:10AM and I am wide awake, as I was last night. I had an excess of energy today and plenty of words to express my ample thoughts. However, my brain working in a sort of backwards fashion, these are the exact sorts of symptoms that signal mania and are extremely dangerous to somebody who has my condition, so I am on strict notice with the doctors and will most likely be either taken off the topa if this continues for another day or two, or put on an anti-psychotic as a preventative, which of course would be counter-intuitive to the weight loss idea as atypical cause gain. You can see from my writing style of run-on sentences that my thoughts are a bit jumbled.
Also- numbness in the heels, irritability, neck pain, itching.
I shall try to post back if I don't wind up in locked ward :-P
-- By allmeallthetime | Reply | Private Message me
May 19th
2009
3:01 PM
I just found this post by accident. I also am on Topamax 200mg daily. I have tingling in my feet especially in my heels. I find myself being very forgetful. I will be doing something and completely forget what I was doing. I am also having speech problems. This is very frustrating to me. I don't know that I could ever go off the medication. When I first went on the medication I lost a total of 80lbs. This was very scary. It seems now that I can eat whatever I want and not gain a pound. This is weird. I heard that the FDA is trying to approve the RX for weight loss. Just wanted to post my problems too.
-- By pdallariva | Reply | Private Message me
May 10th
2009
3:47 PM
My doctor put me on Topamax for ADD.... I am a 37 year old woman and I'm taking 100mg's of it. 50mg at night and 50 in the AM and have very quickly found that I have had memory LOSS very quickly. I have been on the med for 1 1/2 months. My vision is also getting worse and this medication is not helping me with the ADD. I am a Lab Rat to them... I am going OFF this medication. If anyone out there reads this... please do all the research you can. The side effects are not worth it! Today is Mother's Day and after 37 years.... I called her and could not remember her little sweet nic-name she has been calling me since I was born. My heart sank. IMHO.... This medication is very bad.
-- By seanpt71 | Reply | (2) replies | Private Message me
May 5th
2009
9:29 PM
I'm 38 years old and I started Topamax in July of 2008 for severe migraines. I've had an average of 12-15 migraines per month since my early 20's and nothing was working. While initially adjusting to Topamax I had the tingling in my hands and feet during the first month but then it went away. My neurologist increased the dose very slowly from 50mg to 100mg to 150 mg. The migraines have decreased in response to each dose increase. At 100 mg the migraines reduced to 10 per month and at 150mg they reduced to 6 per month. My dose is now being raised to 200 mg which the Dr. says is the maximum recommended for treating migraines. The worst side effects I've experienced are extremely dry mouth (from 150 mg+) and slight hair loss. My starting weight was 138 and I lost 11 pounds very gradually before my weight stabilized at 127. I haven't noticed any problems with food or drinks tasting different. For some reason, I always have insomnia for the first week after a dose increase but then it goes away. I've only had mild concentration problems but nothing notable or problematic. So far, the medication has been remarkable and I can't believe what it's like to live life without so much migraine pain! I hope other people can have the same benefits from this medication.
-- By dragonfly1 | Reply | (1) replies | Private Message me
May 3th
2009
9:02 PM
I have been on 100 mg topamax for a few months now, and i was actually having people try my drinks bc i thought they was flat, and i would feel my fingers and my toes go numb and tingle. I honestly never thought for two seconds it was my medication. The only side effects i was warned about was weight loss (which hasn't occurred with me) and that i would be very thirsty, which i am. But i have NIGHTMARES about things im not even afraid of, and i have trouble spelling words i didn't before, and sometimes i can't even remember what i wore last week to school. Im starting to rethink this whole topamax thing, does anyone know any other prescriptions that will help headaches without the crazy effects?
-- By tasha08 | Reply | (2) replies | Private Message me
April 22th
2009
8:37 AM
I was on Topamax for migraine a few years ago and had to go off of it because my insurance changed. I was crushed!! I was on a lowww dose- only 25mg. morning and night. It helped soooo much- and really- the only side effect was some weight loss and the tingly fingers and maybe weird taste in foods.Also- and maybe it's because I;m relieved of constant headaches- I have MORE energy and even better breathing, seemingly!! ( just now had a problem spelling 'taste'- and have read where that is a side effect but think for me it's just being 51 and a tad flaky with menopause. :) ) I'm back on it now- 25 mg. morning and night- and am very happy. The several times a week migraines ( the real thing) are gone- as are the constant floaters I get in front of my vision, and the things like vertigo and photo-phobia that I have constantly even when I'm not in a full-blown migraine. I just don't get the fatigue, headaches, etc. other people do- in fact, almost nothing by way of side effects. That is no doubt due to the low dose and also because everyone's system is different. I am lucky to have found the one med which nails my migraines! I've read all the posts and am definitely upping my water intake, however- thanks for that head's-up! It never hurts! I would say that anyone with intractable migraine should at least try it- although at a low dose. My doc is very cautious and started at the lowest possible end luckily for me.If you're one of the fortunate people who toleates this med it definitely works beautifully to prevent the majority of migraines in chronic sufferers! It IS expensive, though-even in it's generic form- and I really hope to keep affording it!!
Blessings- A.
April 20th
2009
5:14 PM
I have been on the med for 4 yrs now (I think). 300 mg/day. At times, especially during the winter I get cold hands & feet where they become numb (& tingly from med. I assume). Fingers may turn white. I have thin skin in those areas (can see veins, redness). I wear double layers of clothes during winter/some spring & I live in Missouri (during the day, sleep). Still have tingling some in toes & fingers, ringing in the ears, memory & word loss, little stuttering/thought process before speaking, dry mouth. Fatigue - but I am a busy person. Stomach issues - constipation (but I also don't eat very well). Anxiety - Welbution generic the whole time I have been on this. Weight loss has been nice. After reading a lot of your comments I am wondering if it is time to get off of the medicine & see how I feel
-- By ib4babs | Reply | Private Message me
April 20th
2009
12:07 PM
I first started on Topamax when I was 20 for seizures 100mg twice daily. But before that, throughout high/middle school, I was on Depakote 250mg twice daily to control my grand mal seizures, and Imitrex 100mg to control my migraines(about 3x monthly). When the switch was converted the only side effects I remembered was weight loss, I lost about 40 lbs in 1 yr. Also I was taken off the Imitrex and the Topamax also controlled the migraines. I am now 28, and in the past 8 yrs I have had only 1 migraine! I work in a health profession now and try to recommend Topamax for migraines as often as I can just from experience, but I can understand that everyone is made differently and it is not always going to work the same as it did for me. And one last note about Topamax, it just came out in a generic about 3 weeks ago(4/1/09) for anyone that is concerned about insurance copays and might want to give it a try.
-- By gala51km | Reply | Private Message me
April 10th
2009
12:03 PM
I am a 42 year old woman. I started taking Topamax in March of 2008 for severe migraines. The migraines often caused vomiting and for my body to jerk similar to having seizure. I have had migraines for the last 15 years, but prior to starting Topamax I was having migraines almost every day (for about 6 months). My life had come to a stop. I had been through all of the neurological tests, and CT scans, etc. with no results. Topamax has nearly halted my migraines. I have a severe "head-ache" about every 6 weeks now that last 3 days. A huge improvement! However, my doctor had said that I should not be on Topamax long term so I have tried going off of it twice in the last year, each time on the 5th day to be hit with an all consuming migraine. I had come to this website to find out why I should not be on Topamax long-term to discover that many of the other health problems that I have been complaining about in the last year are probably a result of Topamax and the doctor did not ever suggest that was the case. I have TINGLING IN MY HANDS AND LIPS...the doctor thought this might be my thyroid, but that test was normal. I have had REDUCED VISION, the doctor said it is due to age and working on a computer all day. I have had JOINT PAIN which they are treating with an anti-inflammatory and suggested it’s probably the onset of arthritis. I have had WEIGHT LOSS, SHORTNESS OF BREATH, and the PAIN IN THE BACK OF THE HEAD. These are all things that I see others describe as symptoms of Topamax! Wow! I wish my doctor would have told me this so I didn't think there was something else wrong. I WILL NOT STOP TAKING TOPAMAX. Even if taking Topamax meant that my life would be 2 years shorter or something like that, there is no living in that kind of daily pain. But I am grateful to know that the symptoms are normal. Topamax has giving me back my life.
-- By gskinner | Reply | (2) replies | Private Message me
March 11th
2009
1:24 AM
I'm almost 21 years old. I have been taking 100 mg of Topamax before bed since I was 17 for migraines. I did not have the weight loss that a lot of you had. I did have the tingling in the hands and feet for about the first two years. I have also had a lot of memory loss and a change in personality. I have become depressed and aggressive. I have also had extremely realistic nightmares while on Topamax that I did not have before I was on the drug. However, I don't think that I could go off the drug because I ran out of it once, and I know that you aren't supposed to stop cold turkey, but I had terrible headaches and could not go to work. I ended up in the ER because I had such a bad headache.
We learned about this drug in my Educational Psychology class. If you start taking it when you are younger and stay on it for an extended period of time, it can prevent your brain from developing. This would explain the memory loss, at least for me and other people that started taking it when they were young, but the memory loss and confusion is worth it to be able to keep a job and get good grades in college.
-- By taylormadegirl | Reply | Private Message me
March 9th
2009
9:40 PM
Like most of you all I am on Topamax 100mg. I am a 27 year old female that has suffered from severe migraines for over 20 years that would last up to 2-3 days and completely debilitated me. I would bleed from my tear ducts from the extreme pressure and I would need to be in a quiet, cold, closed off room to be left alone until the migraine was gone to continue on with my life. It was ruining my life and taking over my day to day routine. I could never really commit to anything without the constant worry in the back of my mind about a possible migraine until I found Topamax. Now on Topamax I went from 4-5 migraines weekly to 1-2 monthly, it is truly amazing, however there is a catch. Although the medication is wonderful and I will never get off of it at the rate of success that I am at, I do have side effects. I have extreme tingling in my extremities, (hands, feet) along with my face. It feels like they are constantly asleep. I also have noticed the poor tasting carbonating drinks along with my taste buds changing with certain foods that I use to be so fond of. I also have a very smokey haze where it almost feels euphoric if I wake up in the middle of the night. I have horrible nightmares of people that I have not seen in or thought of in years, memory loss and spelling issues-all goes away after 3-4 months of uses. I had shortness of breath, however that subsides as well with the use of the medications along with several other side effects. I have lost over 30lbs that is along with diet, so I can't say it is all Topamax. I have noticed little nodules that have been showing up on my hands since I stared taking the medication that I am in ? about I have a call in to my neurologist to see if he has heard of any such thing. Other than that I love the medication, because if not having migraines is one of the side effects-lol I can handle the side effects. I hope that this will help anyone that might have anything similar to what I am going through. If you can shed some light on my nodule situation please let me know. Thanks
-- By marfam23 | Reply | (2) replies | Private Message me
March 9th
2009
5:25 PM
I was prescribed Topamax on 10/22/08. Since then, I have lost 25 lbs and am now down to 91 lbs. I am only taking 50mg at night. However, I had a horrible adjustment phase. That has scared me from getting off of this and trying something new. What if that doesn’t work and I have to go back on this. Going thru that phase again is not an option.
I had zero energy, I often nodded off at my desk. I had a very blank feeling, no emotions. No suicidal thoughts, no happy thoughts… I just existed. I did become snappy with some of my co-workers and said things that were so out of character for me. I found another message board that explained so much. I knew I wasn't going insane, it gave me some clarity. When I sent it to them, they understood. I don’t stay focused, I get very flustered when trying to have a conversation & the words that I want to say won’t come out. I feel stupid.
I had tingles in my feet, fingers & face. Shortness of breath, high anxiety, trouble sleeping. During the months of November & December my weight really dropped. There wasn’t a day that 2 people did not comment on how skinny I was getting. So that added to my stress. Mid-January I weighed 97, I went to my doctor when I got to 91. I have little interest in food. I usually order a variety of stuff that way I will have a few bites of something, then a few bites of something else.
When people comment about taking this for weight loss or for migraines, I tell them that it isn’t worth it. I suggest that they do research and really think about if their life can handle being forgetful & stupid. Had I done research on this before taking it, I am not so sure I would have. Although, you always think… “It won’t happen to me.” I am wanting to go back to school in the fall and know that I can’t be on this when I do. I need to know what I learn.
-- By rebecca731tx | Reply | (1) replies | Private Message me
March 3th
2009
9:57 PM
Started taking Topamax about a month ago for frequent migraines. I used to take Axert 2 to 4 times a week. If I did it at the beginning of a headache it worked very well, with little or no side affects- just got tired of having so many headaches. Started the Topamax and worked up to 100 mg per day (50 am 50 pm). Seems to control the headaches well, down to maybe one per week and I think less severity.
Side effects so far: 1. Perhaps some memory stuff as described by others (hard time spelling formerly familiar words etc... but doesn't seem real obvious to me (maybe to other!!!). 2. Diet Coke tastes terrible like everyone says!! This one hurts cause I love diet coke. The good news is that I don't notice the effect as much now a the first couple of weeks.
3. I have frequent (emphasis on frequent) diarrhea- like a couple times a day four to five days a week. This one doesn't seem much better. Now there has been some associated weight loss as reported but Im not sure that is due to reduced appetite or daily diarrhea or both. Either way I was glad to loose the ten pounds I needed to loose anyway, just wish I could do it without spending so much time in the bathroom.
Have not had any of the tingling in the hands or fingers that others have reported.
March 1th
2009
9:57 PM
I am a school teacher and got hit in the head by a student and suffered a severe concussion. I was having head swelling when I read, listen to any rhythms or use the computer. I get severe headaches after doing these activities which are most of my job. I am on worker's comp at this time and find that the doctors I had were horrible. The first two months I was on pain killers every six hours and they didn't work. Then I thought finally I thought I would get some relief when I got a neurologist. He put me on Topamax 25 mg the first week and then after 50 mg. He gave me Treximet even though I am allergic to Alleve he refused after that to give me anything for the onset of my migraines. I got really aggressive on Topamax. I was spacey. He then doubled my dose to 100 mg. The Dr. just said I didn't want to go to school even though I was getting worse and worse and could hardly take care of myself. . I was still having head swelling and headaches when I read etc. but my memory was gone and I was ready to throw thing and hurt others. My aggression was worse than when I had several courses of steroids years earlier. There were many times that I couldn't talk in sentences. I would forget what I was doing and also get lost. I was like an Alzheimer's patient. I couldn't get to my thoughts no matter how hard I tried. I have just got off Topamax and can now speak in sentences and the aggression is gone but my memory is still not completely back. I couldn't do simple subtraction or addition. I was better at it in the second grade than on Topamax. I couldn't remember 3 words after about ten minutes only one word. I couldn't draw a simple geometrical figure. I had all the same problems but on Topamax the addition of horrible side effects. The only side effect I could have used and didn't get was weight loss. My parents actually had to come and take care of me because I couldn't fill out the paperwork and also I couldn't even talk and was having fits and tantrums like a child. Thank goodness I had a regular Dr. that knew what was wrong and sent me to get weaned off Topamax. At that time I was told it would take 3 weeks to wean me off and there was no way I could go to school until it was out of my system. I kept telling the neurologist my side effects and even wrote him a letter explaining but he didn't pay any attention and acted like I was making it all up. I asked for a change of worker's comp doctors. He didn't like that at all and now I have to go for psychiatric testing before I go to my new worker's comp neurologist. All I want is to go back to school and to be able to do my job. I would have never had the memory, cognitive, reasoning, or speaking ability to get back to school taking Topamax.
-- By youngkorn | Reply | Private Message me
February 23th
2009
2:59 AM
I've taken topamax off and on for years..I never had any bad side effects. I actually lost 30lbs in a month which was awesome..I did stop taking it though due to the fact I don't think it was working anymore for my migraines or weight loss..
-- By luv4jayden | Reply | Private Message me
February 21th
2009
12:35 AM
Topomax has been the only drug to keep my migraines under a reasonable amount of control with no ill effects. I really can't complain about anything with this drug other than its cost. The only thing I ever experienced was early on when I was still adjusting to it, sometimes if I was sitting still with my arms crossed, or I was laying down, my arms and hands would suddenly feel detached from my body and big like balloons...like they weren't mine or something. I'm not complaining though, I actually really liked the feeling -- it was accompanied with a slight light-headedness. :)
-- By rstynls9 | Reply | (1) replies | Private Message me
January 21th
2009
4:34 PM
Hello,
I'm a 38 yr old female who was prescribed Topamax about 8 weeks ago for Migraine prevention.
So far, the drug is working fabulously for it's purpose.
Here are the pros and cons that I have experienced:
PROS: No migraines. Yippee!, A small amount of weight loss. This did not happen until just in the last week or so. My mood has stabilized.
CONS: Flat tasting soda, Dry skin, Dry eyes, dry mouth, (drink LOTS of water to combat this). Blurred vision, bouts of memory loss and slurred speech, loss for words. Some of these improve as your body adjusts. Worst for me is that if I miss a dose or don't take it at the same time every day (50mg in the morning, 50 at night), I'll have middle of the night anxiety attacks or even amnesia.. short-lived attacks, but very terrifying.. I always think someone is out to kill me. But again, for me, it's short lived and it only happens when I'm not taking the meds on a schedule.
Overall, I am happy with the drug. I am not experiencing hair loss or tingling. I drink a TON of water because I hear kidney stones are common with this medication.
I will endure all of the above to prevent the wretched migraine....
I hope this helps someone...
Take care and remember, God can help in your healing.. ask Him for it.. :)
God Bless..
-- By italynette | Reply | Private Message me
January 13th
2009
4:21 PM
I am on my second time around with Topiramate (generic Topamax). It has been a year, and I have no reason other than weight loss to take this drug. I also don't know if the online generic versions are really Topamax except I do experience some of the side effects I read about, the tingling arms and legs, the itching, and the foul tasting carbonated drinks. I have started at 25 mg. per day 3 days ago, and am at 250 mg today with no cut in appetite except an hour after I take the pills. Do you think they are even real?
-- By riclavelle | Reply | (2) replies | Private Message me
November 4th
2008
12:18 PM
Topamax is off label for weight loss. I was put on it after gaining about 35lbs from Seroquel. It took the weight off like it was supposed to. My dose has recently been stepped down because I'm back at my normal weight of 135 (I'm 5'11").
When I first started taking Topamax diet soda and other sugary things tasted really strange, which my doctor says he's never experienced before. I also had a numbness and tingling in my face and hands for about an hour or so after taking the pill for a while.
One more thing that I noticed about this drug is that while on it my vision went from perfect to needing to be corrected by glasses. I have read a few things about vision problems associated with Topamax but I am not sure if it caused my nearsightedness or not.
Thanks for letting me share my thoughts.
M.
October 27th
2008
3:13 PM
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.
-- By luna13darke | Reply | (3) replies | Private Message me
October 25th
2008
9:27 PM
I'm a 24 year old female, the doctor put me on topamax about a year ago for my migraines, since they stopped making midrin. It made me sleepy beyond anything. Food and drinks started to taste odd, I stopped taking when I lost insurance because it was $170.00 a month. I had been wondering if I should take it again and now after reading this stuff, I am not going to be doing so, while the weight loss would be nice, I don't need to lose my memory at 24 when I have a 3 year old son to worry about, thanks to call that have posted. :D
-- By nicholie | Reply | (1) replies | Private Message me
October 20th
2008
5:40 PM
I've been on Topamax for 3 years for migraine and it works most of the time. I am currently having a hard time with the usual side effects of memory loss, hair loss, word recall problems, coldness, depression, no sex drive, and am developing a cough. BUT I had a side effect that has not been mentioned when I first started taking it (25 mg in am and pm -- I'm now on 50mg in am and pm).
For about 2 weeks, I would get in my car to go to work and miss my turns because they would cognitively come up too soon (this is after 15 years of going to work the same way everyday). I had to be extremely conscious of my surroundings when I drove or I'd miss all my normal turns. I got lost in my own neighborhood once going home. At work, I'd get up from my desk to go to a co-worker's desk and arrive there amazing fast to my mind. I was experiencing time/space/distance distortion. It became fascinating to me, but it passed.
September 28th
2008
8:46 AM
Topamax makes things taste yucky!! things like soda, beer, etc. And I've typed a whole report before or listed something on ebay and only looked back later and called myself a STUPIDAS# because of all the misspelled words- should of used spell check- which if you take Topamax make sure your spellcheck is on! Don't know why but the med will slurr your speech and brain. I do still get the occasional migraines while taking it so I'll stop it, plus tired of the spelling probs I have while on it. But my doc says I should be persistent with it, just like everything else out there... there's always a price to pay! Other than that, no side effects like stomach pain or weight loss like I've heard in others. Oh but it will make you tired..especially at first..very tired!
-- By 502heather74 | Reply | (1) replies | Private Message me
September 24th
2008
6:48 PM
I have been taking 300mg of Topamax BID for 4 years. I also am Taking 300mg of Lamictal BID. I have had all The same side effects that have been listed. I still get some numbness and tingling in my hands, feet or legs from time to time. The weight loss eventually leveled off for me. (My Dr. said that would happen). I lost 30lbs and gained 10lbs back. the confusion and memory loss was a big deal for me, but I had finally found a great combination of meds that controlled my seizures. I found B12 shots and no caffeine really helped keep my mind clear and gave me back my "verbal capacity" (you guys know what I mean).
Overall I think it's a great drug. It defiantly changed my life for the better.
I Tried 4 others before I tried Topamax.
Nothings gong to be perfect.
Jessica, Tampa,FL
September 19th
2008
9:42 PM
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!
September 3th
2008
7:00 AM
At 50mg a day, Topamax, taken at night, makes me feel very heavy, tired and numb all day. I have been on it for 3 months so far. I also have other side effects mentioned in previous posts. I hate feeling tingly in hands and legs (from the knee down) and sometimes in my face. It is supposed to go away - soon? I get a bad case of my legs falling asleep in almost any position I sit in other than total upright (which is not comfortable). My lifr-long instiable appetite is hardly affected. I'd say maybe a little bit. I do notice taste difference in drinks and food, sometimes more than other times. I need this medicine for Migraines, it has help relieve my symptoms, but I think I need to continue to increase the dose because I still get Migraines and feel pressure in my head a lot.
-- By lin06 | Reply | (1) replies | Private Message me
August 29th
2008
1:14 AM
well, i guess i am not alone. this is the second time i have been on it. i weighed the pros and cons and figured that the migraines were worse than the depression, mood swings, and the inability to compute simple math. well, i feel differently now, and i think i am going back off of it again. my sex drive is also gone, but i have had a problem with that and the depression for years, just not this bad. i feel i have yelled at my children way too much lately, cuz it is making me so crabby, and i don't think that it is worth it. after reading some of your posts, it has helped me make the decision to go off of topomax for good. i could deal with tingling, bad taste, and weight loss (the only good side effect), but not the other horrible effects.
-- By myjanedoe | Reply | Private Message me
August 27th
2008
9:51 PM
I've been on Topamax for a year and a half now. I started with 50 mg. and am now up to 100 mg. I did have the usual side effects of the tingly fingers, feet and arms the first six weeks and then that went away. Food and soft drinks tasted funny for a while, but that too went back to normal. I did lose 15 pounds and I didn't really have it to lose in the first place, so I upped my workouts with weights to compensate. My migraines have gone from five a week to one, so it's helped me BIG time being on this medication. My eyesight, however, has suffered. I used to have 20/20 vision. I now need reading glasses. I'm sure it's because of this medication, but to be honest, I'll take the glasses over being in that severe pain five times a week.
-- By jcrinc | Reply | (1) replies | Private Message me
August 22th
2008
3:09 AM
I was thrilled to lose about 15 pounds so fast, but lately I have noticed so much hair in my brush that I could make a wig. I am not willing to lose my hair or eyesight. Working in pharmacy, when this first came out I put myself on it b/c I heard about the weight loss. I also have had a few seizures and an MD prescribed it, but I know what caused those seizures, some bad behavior, and I know im not epileptic. thought they told me once you have one you're prone to them. As long as I stay a 'good girl' i have had no seizures. It sucks thinking about gaining back this weight though. Willpower and the gym I must, i must.
-- By ughhhh | Reply | Private Message me
July 29th
2008
9:54 PM
My psychiatrist started me on Topamax 2 yrs ago for depression from being 75 lbs overweight. Started at 25 mg/day up to 50/day for 2 yrs. Lost 70 lbs and kept off with only minor side effects. Also took 150/day Wellbutrin during this time. (For being kind of a neat freak and washing my hands a lot.- didn't affect my social or work life much) Have slowly started gaining the weight back (+12 lbs). Seem to have built up an immune to the 50/day dosage over the 2 yrs. So he added 25 in the am in addition to the 50 I've been taking in the evening. (1 mo. ago) Having some strange reactions. My memory seems to be taking a real hit. I am a CPA (passed these exams 15 yrs ago) and now I'm studying for the Cert.'d Internal Auditor exams. I am having a great deal of trouble trying to memorize for these 12 hour long tests! I feel fatigued every day. My blurred vision (that requires reading glasses) has gone crazy. I can't read the song book at church at all. And I'm only 47!. I've had acne like bumps all around my nose and face. How could such a slight increase cause so much change? Also sometimes my heart feels like it is going to beat out of my chest. And I'm losing patience w/my 13 yr old son who's pushing my buttons to see how much he can get away with. He seems to sense that I'm not at my best. But if I go off this Topamax and gain back my 70 plds I know I will plunge into a DEEP depression. Has any one talked to their doctor about the possibility of these side effects going away after time? My tingling hands and feet did and my slight hair loss did. And my weight loss is trying to go away but I don't want that. I'm majorly concerned about the memory loss and blurred vision eventually going away. DALIAL
-- By manerva | Reply | (1) replies | Private Message me
July 22th
2008
8:51 PM
Hi I've been on topamax for 4 years . Had all the side effects...weight loss,tingling in hands and feet,no memory and speech problems! I was taking 600mgs a day! I take it for epilepsy! I was on the highest dose. my doc then weened me from top. to zonegran 600mgs. It's very similar to topamax. For me it is not helping me as much as the topamax. I think it's a great drug!!!! I did not loose hair, no constipation, no rapid heartbeat for me! I am going back on it . Yes sometimes I would get in a hostel mood and can't spell shit , but for me it's all GOOD !
-- By deedee103174 | Reply | (1) replies | Private Message me
July 14th
2008
11:02 PM
I've been on Topamax for a few months now........this is the second time. The first time was in 2002-2004. I was up to 400mg for migraines & depression. It was supposed to do double duty. Well, I was stupid, to put it briefly. I couldn't remember anything. I would stop mid sentence because I couldn't think of the word I wanted to use. I lost a lot of weight, too much. I had needed to lose a little....baby weight. But I looked anorexic. So out to buy a new wardrobe. $$$ I lost a ton of hair!!!! So off it I went. The weight came back very fast....too fast I think. My friend says the same thing of her experience. THIS time I'm on 250mg.....no more than that, as per me. I was stupid for a little while, but it seems to have gone away for the most part. My hair is still falling out, so not much longer on this one for me. The reason I went back on it was for the weight loss ( and it does help the migraines). I was on some migraine meds that made me gain 40lbs over a 2 yr period(Abilify,Cymbalta). NOTHING could get off the weight. Not exercise, not diet. I've lost 21 so far, but my progress has slowed because of Wellbutrin...it makes me crave sweets. And my willpower is nil. lol So off the Wellbutrin I go. I also learned my nastiness could be from Topamax. I snap at the kids. Who knows which drug it's from! I also take Singulair. That's a story in itself. That one's gonna go too.
-- By robin43 | Reply | Private Message me
June 25th
2008
2:33 AM
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!
June 7th
2008
4:25 PM
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?
June 3th
2008
10:04 PM
I have been taking Topamax, 25 mg. for one week. Today was the first day I took 2. My doctor prescribed it for migraines, which I was having several times a month. The past few times I thought I was having a heart attack! I read about the side effects before I began the medicine so I have been waiting on everything to begin. So far the only thing I have noticed is I have a weird sensation in my mouth and sometimes in my throat. The only way I can describe it is if I have been breathing something caustic, such as smog or smoke, or a lot of dust. One thing I am going to try is a mouthwash called Biotene or Biotene. It is for dry mouth. Maybe it will help. Has anyone else experienced this and/or tried Biotene?
I read with interest what everyone has written. I drink soda all day and will be integrating more water because of one of the posts. So far though, my cokes taste the same. Is it only Dr. Pepper that tastes differently? I have also been getting winded easily and thought it was just me. The one side effect I am READY for is the weight loss. I gained 20 pounds in a year after I quit smoking. Anything to help with that is welcome.
So far though I have not had any migraines and I always have one with PMS. No increased anxiety but I have been on Zoloft for several years for depression. Maybe the Zoloft will offset the Topamax in that respect. I can be somewhat scatterbrained at times and as an assistant principal, I have to stay focused all day. Now that it is summer I will be able to relax a bit and it's ok if I am more absent minded than usual. Except that I have to work on a research project. But hey, does anyone really read that stuff??
Thanks everyone for sharing and I will check back in if anything changes. I am curious to see how things will go.
May 28th
2008
9:19 AM
I began reading all of the blogs about Topamax and was surprised. I have been taking Topamax as a mood stabilizer since February 2007 at 200 mg at bed time (I probably sleep off the fatigue). The only side effect I am concerned about is the weight loss. Short term memory is not an issue. As a matter of fact, I am attend college and am managing a 3.85 gpa. I wish all of you the best of luck and hope you find something that works for you.
-- By angiepangie44 | Reply | (2) replies | Private Message me
May 23th
2008
12:23 PM
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.
-- By blondiebaby14 | Reply | Private Message me
May 5th
2008
12:31 AM
Currently on and will be calling the doctor tomorrow to stop after reading everything tonight. I have the migraines still, I have the tingles in all the weird places, everything taste like pooh, which is wonderful, seeing that I myself am overweight and do need to lose the weight. I am not through my 1st full script,but up to my 100mg per day(50 in the morning and 50 at night). I have lost those first 20lbs. and Wow, how nasty those DP's taste now! I was up to 4 Zomig per day before the doc put me on Top and he thought it would help with the weight loss too, but the depression is uncontrollable. Can't sleep at all even while taking sleeping meds and very tired. Everything hurts.
-- By seven777 | Reply | Private Message me
April 26th
2008
2:11 AM
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.
-- By blahblah1223 | Reply | (1) replies | Private Message me
April 24th
2008
5:44 PM
headaches,nausea,fatigue,irritability,blurred vision,terrible loss of memory,inability to eat,depression,diarrhea
-- By nellesweetnessnectar | Reply | (1) replies | Private Message me
April 10th
2008
11:10 PM
I began Topamax in August after 6 months of ongoing severe migraines. They stopped immediately. My DR had warned me of weight loss but I thought who cares? I weighed 130 at the time. I have had a fatigue problem for years so I really can't attribute that to Topamax. I did become very sick (exhaustion-couldn't get out of bed) after Christmas and had my DR take my ANA which was 1280 (high). I have also experienced hair loss but I did not find that on the "side effects". I called the hot line to see if there were other reports of affected the ANA count and they had no data on this. Has anyone else had this experience? Meanwhile, it is 8 months later, I am down to 96 lbs and worried, have lost all fat & muscle - no migraines!
-- By triciakaren | Reply | (4) replies | Private Message me
March 25th
2008
9:24 PM
Here is the link to the information about vitamin deficiency and medications. You can search different types of meds so I hope it is helpful...this is where I was able to go through and figure out which vitamins would be useful for me to take to help with the side effects. Now this is good because these are vitamins that Topamax is absorbing ouot of your body so all you are doing is replenishing it into your body to help prevent the side effects. The only side effects that I couldn't really find a vitamin for was the eye strain (and after asking the pharmacist she said that is a nerve thing so there wouldn't be anything) if you are having that, and the weight loss. Hope this is helpful. I have been searching since my first post hoping I could find the link...
****
-- By blessed08 | Reply | (2) replies | Private Message me
March 19th
2008
2:26 PM
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.
-- By capricorn2oo8 | Reply | (5) replies | Private Message me
March 18th
2008
9:15 PM
I take 200mg a day (100mg in the morning and 100mg at night) for seizures. It has been my miracle drug. Granted the side effects were awful. But I did my research before starting it again. I had taken it previously for migraines and couldn't tolerate it. If you take the appropriate vitamins while taking it you can help to alleviate a lot of the side effects that you may have. Topomax can absorb some critical vitamins out of your body which causes some of the side effects. The vitamins that I take are: a high dosage of a Super B Complex (tingling, numbness, fatigue, speech). L-Carnitine (memory loss), Biotin (hair and skin). There is another website with postings similar to this which is where I discovered other patients taking Topomax that had discovered using the vitamins helped. Once I got on a good regimen of vitamins it made a big difference. I still experienced and am experiencing weight loss (but I just had a baby) so I am not really upset about that. LOL Anyways, I hope that information helps someone out there. It sure did help me. If I can find the research link that had the vitamin listing that it depreciates I will post it.
-- By blessed08 | Reply | (1) replies | Private Message me
March 1th
2008
11:00 PM
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.
-- By javajo | Reply | (2) replies | Private Message me
February 26th
2008
1:14 PM
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.
-- By bybeegirl1971 | Reply | (1) replies | Private Message me
October 29th
2009
11:06 PM
My experience with Topamax was unreal. My doc gave i to me for anxiety/depression/weight loss. The weight loss began working right away but so did the disaster. By the time I had been on Topamax four months I was fired from my job, having an affair with my husband's best friend, spending $1000 on a credit card no one knew I had and spent 10 days in a psychiatric ward. There they determined that the Topamax had made me manic. A feeling of unreality had set in along with an intense feeling of well being, and aggressiveness. I am putting my life back together now after getting divorced, finding work in a new field, and trying to repair the damage done to my relationship with my kids.
-- By bethann2000 | Reply | Private Message meMy best friend called me tonight to tell me that her daughter who is also taking Topamax has become almost anorexic, is also getting a divorce, is now on medication for heart palpitations and will not speak to most of her family. It IS dangerous!!