Topamax and fatigue

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.

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.

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

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.

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.

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

I 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.

headaches,nausea,fatigue,irritability,blurred vision,terrible loss of memory,inability to eat,depression,diarrhea

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!

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.

I have been on Topamax for several years now for crippling migraines. I now take 125 mg at bedtime. I once tried to take myself off of it but, the headaches came back worse than ever So... I went back on. some say that it works because migraines are like a type of seizure. I sure don't know but I'll do anything not to have them like I used to. Recently at night my arms and legs get numb; sometimes one side sometimes both sometimes all I feel is my trunk. It is really scary, but more scary for me is the headaches with the intense nausea that accompanies them. You just can't function. Lately I also feel very tired too! Every one tells me it is just stress from work and "perimenopause" (just what I need more hormonal fluctuation to cause headaches) I really wonder if all this increased fatigue could also be the Topamax ... I mean I could easily sleep 11 hours per night if you let me! Has this happened to anyone? Did perimenopause complicate your treatment?

I 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.

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

I'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.

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!!

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.

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

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

I 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.

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.

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!!!

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.

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?

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.

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.

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.

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.

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...

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...