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
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!
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
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
April 9th
2008
3:34 PM
I have been on Topamax for a month and a half and agree that cotton mouth , tin tasting drinks, no appetite, no focus and fatigue are the greatest side effects but yesterday someone at work said since I have been on it I am "edgy" guess that means I am a pain to be around. So now I know I am acting like I feel crappy.
-- By migranes4days | Reply | (1) replies | Private Message me
March 30th
2008
5:43 PM
I have been on Topamax for several years now for crippling migraines. I now take 125 mg at bedtime. I once tried to take myself off of it but, the headaches came back worse than ever So... I went back on. some say that it works because migraines are like a type of seizure. I sure don't know but I'll do anything not to have them like I used to. Recently at night my arms and legs get numb; sometimes one side sometimes both sometimes all I feel is my trunk. It is really scary, but more scary for me is the headaches with the intense nausea that accompanies them. You just can't function. Lately I also feel very tired too! Every one tells me it is just stress from work and "perimenopause" (just what I need more hormonal fluctuation to cause headaches) I really wonder if all this increased fatigue could also be the Topamax ... I mean I could easily sleep 11 hours per night if you let me! Has this happened to anyone? Did perimenopause complicate your treatment?
-- By tiredalways | Reply | (1) 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 28th
2008
3:16 PM
I'm on Topamax, Atenolol, and Citalopram...all for migraine prevention. We added the Topamax to the regimen (100/day) about 6 months ago. The first 6 weeks were the worst for side effects, especially the metallic taste, tingling hands, 'stupid' feeling, and fatigue. However, I did eventually adjust, and the migraines did decrease in frequency and intensity. They were not completely eliminated, but when I still get them, I find that I can abort them with the 'rescue' drugs easier, and they don't last as long.
If you like soda's and are upset by the 'flat' and metallic taste caused by Topamax, there are some sodas that don't taste quite as bad. Coke Zero and Diet Pepsi Max seem to be a little more carbonated and have a 'zingier' taste. After about 3 months, some of the carbonation 'feel' came back and I could drink things like beer again, without it tasting like I was sucking on a rusty nail.
I use to get the 'stupid' feeling to for about the first 2 hours after I took my morning dose. I couldn't remember words, and would forget what I was talking about in the middle of my sentence. I started taking my meds at 4 am, so that I had a chance to sleep the 'stupid' off by the time I got up at 6 and left for work by 7am. Then I'd take my evening dose after dinner, because my kids don't care if I'm an idiot...just as long as I'm not cranky :-)
When I have a migraine, I usually want to drive a pick-axe into my head, so all-in-all, these side effects aren't too bad in comparison, and make me a much more pleasant person to live with.
-- By steelskull | Reply | Private Message me
January 21th
2008
9:34 PM
Oh, PS, I have also dealt with the "can't find the word" thing, as well as a loss of coordination thing, fatigue, hunger, what I think is something like low blood sugar... I'm a mess.
Figures I'm not the one who loses all kinds of weight, huh? Sheesh. Ha!!
-- By meghanmarie | Reply | Private Message me
January 19th
2008
5:12 PM
I have been on Topamax since October of 2007. I currently take 150 mg (split in AM and PM) for migraines. The drug is working wonderfully for the migraines but I am finding that I cannot do my job anymore due to the side effects and am not considering filing for disability. I am so fatigued all the time I literally cannot keep up with my work load. I have the tingling in my feet and hands, the funny taste of soda, the forgetfulness, and the "cannot find the word" thing. But the biggest problem is just that I cannot get everything done that I used to be able to get done due to plain old fatigue. I am so tired all the time. I find myself crying all the time due to constant stress of not being able to do what I used to. It took me a while to admit to myself that I couldn't to it anymore ( that nasty ego was in the way) but I finally had to admit that I couldn't keep up like I did before I was on the Topamax. I don't want to give up the Topamax and go back to the daily migraines and if I find a different job I lose all my retirement. I'm a teacher so I don't get any social security so my only alternative is to go for disability due to my having to take Topamax. I may have to hire an attorney to help me but after fighting migraines and trying to work my entire life, I surrender.
-- By hoopsky | Reply | (1) replies | Private Message me
October 11th
2007
9:54 PM
I've been on Topamax since just Tuesday, 10/9/07. I find that I get very tired a couple hours after taking it and I have horrible nightmares and very dark thoughts, too. Diet coke tastes so HORRBILE which is bad because I loved my diet cokes, but then again I guess that's good b/c I need to stop drinking them anyway. My worst side effect is that I have horrible mood swings. Is this normal? Is this going to go away over time? Because if not, I'm going to stop taking it now. This is not like me and I am not going to subject my family to this - losing weight is not THAT important to me. Thanks for any help. :(
P. S. I'm taking 25 mg in the morning, afternoon and evening.
-- By mazzy0774 | Reply | (6) replies | Private Message me
October 5th
2007
10:02 AM
I can't believe all of these posts, wow. I was starting to feel as though I was alone with all of the symptoms I was experiencing. I started this drug 2 1/2 weeks ago at 25mg am/pm and am currently up to 75mg am/am. I have really bad chest pain/tightness and mild shortness of breath. As someone else had mentioned, pop is enhanced not dulled, seems as though its like pins on my tongue. I have been forgetting words but not too bad, just for a couple of seconds. The anxiety is the worst, sometimes I lay in bed and the chest pain will increase and I get so axious it feels as though I'm going to die. I went to the ER last night but they did an EKG and told me my heart was fine that the chest pain most likely was not related to my heart. (I'm a 22 year old male and have never had problems with my heart) These chest pains only started after starting this drug. I'm ready to try something else. This was the first drug I was put on for my seizures, my doctor said it could possibly help the seizures/headaches/weight. These side effects are just too much.
-- By czambrano | Reply | (2) replies | Private Message me
July 9th
2007
1:37 PM
I have been on topamax for almost a year now. I had been having a nearly constant migraine cycle for three months which had to be broken with migranol nasal spray. I then started on escalating dosages of topamax. By 100mg I realized that life was wonderful but that I couldn't retain much information which was a problem as I had just gone back to school for an advanced degree. Upon consultation with my doctor, we reduced my dosage to 50mg and things improved dramatically.
I have experienced some fingertip and toe tingling which have been completely tolerable. I take the medication right before bed so that I don't have problems with fatigue during the day. I do get out of breath easily when I exert myself and carbonated beverages taste horrible. But my migraines are under control.
I have a Ph.D. in molecular biology and a few years of neuroscience research under my belt. I would like to say that it is EXTREMELY important for people to understand that no medication is going to work identically for any two people. What works for one person, may not work for everyone. I know people who swear by imitrex but this medication does absolutely nothing for me. You have to be your own advocate when it comes to medications and treatments. Your genetics will also determine how well, if at all, you respond to any medication. For some topamax is a life saver, for others it will be the bane of their existence. This will always be the case for any medication. Be tolerant of others' experiences and understanding of each others' pain and progress will be made.
-- By biogoddess | Reply | (3) replies | Private Message me
June 15th
2007
8:46 AM
I too had chest pains!! That is something that they do no tell you.
This medication definitely needs to be re-evaluated by the FDA, to determine what damage it may do to your heart.
I was already seeing a psychiatrist for Panic disorder so I had valium at home. However, I still ended up in the ER for my chest pains after getting no call back from my dr for two weeks telling her that I was having all of the other side effects ( except the hair loss), tingling in the hands and feet, fatigue, moodiness, different tastes of things, especially colas.
Nevertheless, I was diagnosed at the ER with having a panic attack....DUHHHH, how could I possibly be having a panic attack when I had taken about 2 1/2 10 mg valium to try to get my chest to stop hurting. I explained to the ER dr. that I had started taking the topamax 3 weeks prior...There absolutely needs to be better education of this drug and its terrible side effects!!!
-- By cristyerickson | Reply | (3) replies | Private Message me
June 11th
2007
5:00 PM
Chest pains, fatigue, mood swings, pins and needles feelings in hands and feet, nausea, depression, terrible terrible medication.....do not take this medicine.. I actutally sent a letter to the FDA telling them to re-evaluate this medication.
-- By cristyerickson | Reply | Private Message me
June 6th
2007
7:23 AM
I have been taking topamax for 2 weeks and started having dizziness to the point of not being able to stand up. Has anyone else had this?
-- By lucyling | Reply | (3) replies | Private Message me
November 9th
2006
8:08 PM
Well I have been taking Topamax for 3 weeks tomorrow and so far the side effects have not been that bad for me. I have experienced a little bit of most of the ones I have heard about: loss of appetite, weightloss, numbness/tingling in hands/feet, off tasting carbonated beverages, fatigue, mood swings, increased thirst, increased perspiration. But they haven't been that extreme for me. The pros have really outweighed the cons so far. I have only had 1 migraine since taking the Topamax, and it was a few days after starting it. I am upping to 75 mils tomorrow so we'll see how I feel about it after that, but so far so good. I think that it is really important to remember that everyone's body chemistry is sooo different and we are all going to react differently to this drug. I have pretty much found that people either love this drug or they hate it. But it is really nice to be able to get feedback from other people to see if the side effects we are experiencing are "normal". When 50 some odd other people are experiencing the same thing on this drug then I think it's a pretty safe assumption that it is related to the drug, whether or not the doctors want to claim it is or not.
-- By amydanielle21 | Reply | Private Message me
August 1th
2006
4:13 PM
I went to a neuro specialist for migraines today and within two minutes he was handing me a sample of Topamx -- without taking any history or listening to what I was saying. And he is a prominent "leader" in his field in Newport Beach, California. I can't believe it. He wanted to hospitalize me for three days and start me on Topamax tonight. I asked him the side effects and he told me only weight loss (I'm 5'6, 115 pounds!), fatigue (I have a weakened immune system already) and kidney stones (I'm a Libra -- and while that sounds funny, that sign rules the kidneys!). He also said I might search for words and chose the wrong ones. Well, I'm a published journalist. Great! What an Idiot. I asked him how long I would have to take it and he said about two years! My husband threw out the pills when I came home and told him the story... and now reading your postings I want to warn those of you our there to be sure that you really need this medication if you are taking it for only for migraines. I'd rather spend a day sick in bed a few days a week that have all of these horrific symptoms appear. Thanks for letting me share and good heath wishes to all of us.
-- By allhockey | Reply | Private Message me
July 10th
2005
3:38 AM
I'm Bipolar Mixed, OCD and I've been taking 50 mg. Topamax daily for about 3 months now and I have noticed fatigue, mild depression, decreased libido, and impotence since using this drug. I also take Paxil 20 mg. and Wellbutrin 150 mg. to try and combat the impotence. I don't know if I will have to discontinue Topamax, increase Wellbutrin or add Viagra; these meds are getting expensive. The Topamax calms my mood and helps with the appetite increase from Paxil though. Also, I noticed an increase in the decrease of libido once i started Topamax in addition to Paxil's contributing impotence. Any input would be helpful.
-- By italiano779 | Reply | Private Message me
April 21th
2005
9:14 AM
I have been taking topamax for about 5 years. I was off for about 18 mos. to have a child and nurse, and have been back on for 3 years now. I have been prescribed for bipolar II disorder. My main symptom has always been irritability, they say it is mixed episodes. I have no mania, really. My doctor believes that topamax is most effective at high doses, so I had been taking 1200 mg/day, and he only took me down when I complained about the confusion, word-finding, (general abscence of a brain), so now I am at 600 mg/day and have been for some time.
The tingling hands/feet does go away. The diarrhea does go away. Even the weight loss will stabilize. However, I have been in a severe depression for at least a year. I have incredible fatigue (I sleep 15 hours a day), I am very moody, and I have aggressive irritability. I am incredibly ditzy, and numbers confound me (can't add 2+2). I have chronic back and neck pain and have now developed chronic headaches. I sit and think, something is majorly wrong with me, I'm dying. I even have constantly plugged ears, ringing in the ears, excessive sweating (I never used to sweat and now no anti-persperant works) and body odor.
I have felt like a hypocondriac going back to my Dr. reporting these things to have him go hmmmm, I have no idea. Until I started to research Topamax and saw all of these things listed on the side effects, and realized exactly how high my dose was. Looks like I need to find a new Dr.
-- By rs4e | Reply | Private Message me
April 18th
2005
1:51 PM
muscle weakness-dry mouth-hands and feet tingle-fatigue. Have been on Topamax for over 1 year and sx have subsided, mostly. Definitly memory problem involved here. Dr dc'd med because of extreem muscle spasms around lower rib cage area. We'll see...
-- By d609667 | Reply | Private Message me
March 14th
2005
2:39 PM
I began Topamax approx. 6 wks. ago for migraine prevent. Have Relpax too for when migraine attack breaks through. I have had some tingling in feet ,recently better. Have noticed my vision seems worse,but forgot to tell my Dr. at last chk. I have been quite discouraged with the fatigue and feeling tearful and even crabby sometimes! I have continued to have a fair number of headaches weekly, although 2 whopper sinus infections as well. Will these side effects get better? I take 25 mg am and 50 mg pm now. Dr. added Elavil 10 mg for sleep at last appt. because I wake up alot too. I'm pretty discouraged...
-- By nanee4696 | Reply | Private Message me
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