Topamax Hands and Knees, Memory Loss, Hair Loss, Body Aches, Hate to Think
Posted over a year ago
I have been on 100 mg of topamax twice a day now for over three years. Most of the early side effects have worn off like soda tasting bad and the memory loss. I never had any hair loss. Also the weight loss has stopped and I did gain it back which really ... more »
I have been on 100 mg of topamax twice a day now for over three years. Most of the early side effects have worn off like soda tasting bad and the memory loss. I never had any hair loss. Also the weight loss has stopped and I did gain it back which really stinks. Anyway, the reason I was looking, was that in the last several weeks, I have been suffering horrible body aches and joint pain. My hands and knees hurt very badly. I am 39 years old and hate to think that arthritis has set in so quickly. And I know that I can't have the flu with no other symptoms and so often. Does anyone else have these symptoms? Also I wonder why these could have started after so many years of taking it.I have tried to wean myself off in the past and the migrains came back full force.
Wrilei - I have been on topamax for migraines about 5 months -- started at 25 mg daily and slowly increased to 75 mg daily by January, when I started having significant joint pains, especially in my neck, upper back and shoulders, as well as hair loss and symptoms of depression. I have been weaning myself off the topamax and have had improvement in all the side effects, though I still have significant back and neck pain.
Carlytoons - I've been on Topamax for a while now, started out at 50mg & in June started 100mg twice a day & my hands have been killing me for a while now, always feel like I am spraining & pulling them & I'm not doing anything, they ache so bad, I can't even wash a dish half the time, does NOT feel normal. I've
also experienced numbness (a couple severe episodes that lasted a few hours before the feeling coming totally back again) & I still deal with it on & off & this happens with my hands mostly but also my legs & feet. My hands mostly ache but also travels up my arms & also happens in my knees & my legs & feet also.
I have epilepsy, since 2003 & have been on so many medications but been having a really hard time finding one to help me & every time I seem to find one that does seem to help me the side effects are so bad that there is no way I can stay on it & it almost looks like the Topamax might be the same way... I'm in my early 30's..
Angela76 - I am also experiencing the same. My hips and back are hurting so badly I've been missing a lot of work. I'm also just exhausted. I'm about to cut my hair short because of the hair loss. The hip pain is the worst though. I come home after working and just limp around, some days in tears. I take 250 mg a day for seizures. I've been taking it for nearly 3 years. I may just have to stop taking it. It seems to have stopped the seizures, but I just figure there must be a better medication for me out there than feeling like this. I am forgetful, my speech is insane. My sleep is interrupted all the time by bad dreams. My menstrual cycle is almost constant. Any weight I lost in the beginning has since been gained back.
Ksgirly - I have been on Topamax for a week and already have spent hours looking up side effects on the computer because of how horrible I feel just in the short time I have been taking it. The only side effect my Dr. told me about was there might be slight tingling in my hands that will go away in a couple of weeks, other then that it will help you lose weight and act as a mood stabilizer for my bipolar disorder. Well I can no longer drink anything carbonated due to the medicine the combination burns my mouth..which is somewhat common from what I have read..and I have body aches so bad that I can barely move and am living on ibuprofen daily...I am extremely tired all the time. But hey good news my moods are not as frantic and I don't have tingling in my hands at all lol hmmm is it worth it? I guess time will tell with the next three increases.
Scgalloways - I'm on 100 mg of topamax once a day I had similar symptoms and my doctor stated most patients with the issues or with tingling or numbness in hands and/or feet etc... is due to potassium issues. He added a potassium supplement to my dietary intake and within a few weeks the issues I was having with arthritic pain went away. Maybe ask your doctors about the links between potassium deficiency and topamax or even do a google search to see what you can find, it helped me. good luck. Also for the person with shortness of breath do you take any anti-depressants or anti-anxiety meds? I had been taking wellbutrin for 6 months with no issues then started to feel like I was having heart attack, shortness of breath, burning, tightening in my chest, I had an echo cardio gram and a lot of blood work done all was fine, I couldn't carry on a conversation of climb stairs at home without being short of breath, i'm only 40, 2 days off the wellbutrin and I felt 50% better, a week off and I'm loving life again.
Jillmarmon - I am 49 years old and having similiar problems. In fact, they want me to have hand surgery for carpal tunnel syndrome next week. My hands wered perfect until 7 days after I started topamax. Do you have any update you would like to share?
Thanks so much.
Bella_rae - i have been on topamax for a good three years now, im only 18 years old but i know all the symptoms im having from this medication isnt normal. since ive been taking it, ive noticed mood swings, trouble sleeping, loss of sex drive(which is weird for a 18 year old) the worst memory loss, constant back pain, sudden headaches for hours on end and thats just to name the everyday ones. i take topamax for epilepsy. i just want to know if its all normal but after reading all the previous posts, it appears so, i guess all drugs have their side effects. Is it really worht all this though?!
Rsimmerm - I have been taking topomax for two years, I suffered from daily tension headaches, weekly migraines, etc. I tried numerous drugs to prevent the migrains, nothing worked. Topomax worked the first 6 weeks- no headaches or migraines, maybe one! It was incredible, it made up for all of the side effects- memory less, confusion, slurred words, weight loss, taste changes in my food. I didn't care because I wasn't popping pills and carrying them around in my person like a crazy person anymore. Then the headaches came back- I stated to take the midrin and fuerocet frequentrly again, I have not been the same these last few years- I don't want to go out at all, tired all the time, and just feel down- plus I am randomly taking meds for my head. In December I got upped to 200 mg, the headaches got better, but not I have been in AGGONIZING BACK PAIN for 3 months- I can't sleep, bend over, extend back, sit, etc. I have had every test done in the book- all normal- they think I have arthritis- I am only 25- now they want to start me on methotrexate, Seriously? I want to have kids- I want to be off all of this - how do I get off Topomax the right way because I think it is the reason I have such terrible pain in my body and back pain- I dont beleive the doctors that I have fibromyalgia or arthritis.
Edouth - WOW!!! I have read every post on this thread and these are exactly my symptoms! I have also been on Topamax for just over 3 years. I'm 45 and have had migraines since I was 19. I was taking Fioricet, then Imitrex daily just before I started Topamax. It was a miracle drug. I had horrible short term memory loss for a few weeks...driving and forgetting where I was. It was awful. Then, my headaches virtually disappeared. Just last year, my headaches slowly returned and the body aches slowly started. I had been on 125mg once a day. After having lab work to rule out arthritis and lupus and also an MRI on my back and neck to rule out bulging discs, I thought it had to be the Topamax. I have weaned down 25mg over a 2 week period so that I'm now down to 50mg. Now, I'm REALLY so achy, I feel like I have the flu. And, I'm not back on the Imitrex 100mg. I have an upcoming neurologist appointment.
How are any of you now that you have stopped the Topamax, if you have discontinued using it?? Does this aching go away? I feel like a 60 year old, so bad that I can hardly stand up from a chair! This just cannot be normal.
Tlc09 - I am 45 years old also I have been taking Topamax for 8 years now, I see the longest that any of you have been on this medicine is 3 years.. I am going to the doctor this friday to be re-evaluated for a possible increase in my medication. I am currently taking 200 mg at night. I have been taking the same amount for approximatley 4 years now, I have not experienced any hair loss,and pray I won't. But the body aches, the stabbing of the eye is a killer. I have constant migraines, that are worse than ever. I have them that last for 3 days no more than I get rid of them I get another string of them. After hearing all the post prior to this makes me not want to get any more Topamax. I am even scared to wean myself off of Topamax and to start over like some of you have.. The memory loss is horrible I can't remember what happened 5 seconds ago, let alone what happened 5 years ago, as far as the weight goes what I lost I have gained it back. But, the pain from the migraines are so severe I want to literally chop my head off they are worse than before. I now have severe nerve damage in my hips and neck and have to have epeideral shots every 2 years because of the pain, next is a nerve block. Some of the other migraine medicines I have tried don't work as a preventive and make you gain way to much weight. I have a friend that stopped the Topamax she has gained all her weight back and then some. I have not had a chance to ask her about the side effects if she has gotten rid of any of those...There has to be something out there on the market without so many side efects that make you feel better, not worse.
Liveoneut - I've been on Topamax for just about a month now, trying to get a handle on my partial, complex seizures and already I'm having severe pain in one of my knees, and can feel it coming in the other. I'm talking to my doctor as soon as I can about getting off this drug. After reading about everyone else's stories, it's time already. Oh, I forgot to mention....I'm still having the seizures, and there's no WAY I'm upping the dosage!!!! This is the first time I've ever posted on a board like this. Take care everybody, and good luck.
Eawillis - I have also been on Topamax for about 8 years. It has been a miracle drug for me. It ended migraines completely and also, surprisingly, helped with dystonia and trmor from an inherited neurological disorder. But, yep, the side effects are numerous including joint pain. And ever-increasing doses are needed to achieve the same results for tremor etc. yet those same doses make my brain too dull to live with. Sadly, the weight gain has replaced the nice weight loss effect from early days...and the joint pain makes exercise more difficult. i wish there was a similar drug without the side effects. I have weaned myself off of it a couple of times but the positive effects, no migraine, tremor and dystonia, seem too valuable to give up.
Ebgurl08 - I started taking Topamax when I was about 16 or 17 I think and I also had an unusual high sex drive for a teenager. I took it for Migranes, I had migranes everyday before I started taking Topamax. After I started taking it for a while I didn't have them anymore, I may have had a random one, but I did lose alot of weight, before I started taking Topamax i weighed 200 pounds, the most I've ever weighed in my life, I got down to 142 from taking Topamax but there were alot of side effects I had to endure like memory loss, really short attention span which made my grades drop in school, joint pain which was embarrassing because im really young, diarrhea all the time when ever I ate greasy food, confusion over the simplest things, anxiety, etc, etc.
Jodeelouisiana - I have been on Topamax for 5 years now. I take 300 mg a day. for seizures and migraines. I recently was terminated from my job, this past week which means I wont be able to afford meds. no insurance. I have no idea what I am going to do. If i as much as miss one dosage, I can seize. Topamax has helped alot with the seizures but has not controlled them completely. i have suffered alot with side effects... enlarged liver> and spleen> and I have lipomas that have developed all over my body. the Doctors say this is due to all the Topamax I have taken. I have so much pain and I can only imagine what the withdrawls will be like. God help me.
Katiethree - I started Topamax about 3 weeks ago, first at 25 mg, then 50 mg and next week 100 mg. I feel like I am drunk or something. I try to drive and I am whoooooooooa, I shouldn't be driving, how long does this take to go away because I have to get places. And I am very tired. I am a tired in the afternoon too. I have noticed one good thing, that it did take away my pain in my knees and hips that I had daily, but it didn't take away my headaches due to DDD ( degenerated disc disease) in my neck, and my neck pain is still there. I didn't lose any weight, but still hoping for that. I am scared that my hair is going to fall out because it is thin anyway. I have noticed alot of hair in the sink after I brush it, and I don't know if it's falling out, or breaking off, but I guess I will find out soon enough. I am trying to drink lots of water, because I am scared of kidney stones, I do not want them. I did notice a good thing, that my mood had went from being really over the edge and worring all the time and cranky and now I am more relaxed, which is GOOD!!! Wondering something though, about a week after I started these things I got an yeast infection, and I took a prescription of fluconazole (it a one does pill that works over 7 days) well it didn't work, so I had to get another one, so now I am on my 3rd one and I can't get rid of it. I am not sleeping with anyone so it's not a STD thats for sure. I Googled Topamax and in the list or RARE side effects Yeast Infections was listed....Just wondering if anyone else was having the same problem? I am not getting any tingling in my hand or feet either. I like this med, but I don't like this Yeast Infection, and I hate to go off it, but I rather go off it than have this curse. Thank for reading.
Edouth - @Katiethree: I totally understand how you feel about the driving. It took me about 2 weeks to get over the Topamax fog. One evening, I actually got lost in an area I was very familiar in; I couldn't even take directions from the gas station attendant nor my husband by phone to get home. It takes 2-3 weeks for the medication to build up in your system to see the effects of the lack of hunger. Even though I have been on Topamax for almost 5 years, many times I still have to remind myself to eat because the hunger feeling is just not there. And, it's important to remember that you can get a headache due to lack of eating. Have you tried Celebrex for the neck pain? I cannot live without my Celebrex! It is just as important as the Topamax! I've been taking 400mg at bedtime for 8 yrs now. Actually, my neurologist started me on it as a prophylactic for inflammation because of my migraines. It wasn't until I started it that I realized how much stiffness I had in my neck. Incidentally, I went up to as high as 125mg/1 time a day, then slowly weaned down and am now down to 50mg.
Regarding the horrible achiness I was feeling 1.5 years ago...I ended up starting Lyric and staying on it for about a year. It was amazing and a lifesaver. Reluctantly, I stopped it and have been fine since. The nerve pain that I was feeling was unbearable, but the Lyrica really did the trick. I'm not clear on why I was feeling that all over nerve pain (flu like pain), but the Lyrica got me through it.
Good luck!
Katiethree - @ Edouth I don't know how to reply in this forum, it won't let me click on the reply word, thanks for the info, I will ask about the Celebrex and about the proplylactic thank you so much !!!!
Edouth - @Katiethree: Clarification regarding the following statement..."Incidentally, I went up to as high as 125mg/1 time a day, then slowly weaned down and am now down to 50mg." I was referring to the Topamax dose. Oops. Also, I want to mention that I'm taking Topamax for migraine headaches. I see that others are taking Topamax for other reasons. The Celebrex was started as a prophylactic to reduce inflammation in relation to my migraines, but it ended up being awesome for my neck pain...who knew?! Good luck! :)
Katiethree - @Edouth is weaning down off Topamax horrid? or is it easy to do...just askin...thanks for all your help by the way I have a few more questions I know. I am taking 100mg 3x a day now...kind of in a daze....does that eventually go away?
Uss1107 - I have been taking Topamax for 10 years. I started out on 25 mg and slowly got to the 100 mg that I am on today. I take one pill each night before bed. I have never experienced hair loss or any pain or aches in my hands or joints, but in the early stages I did get the tingly hands and feet. My doctor just told me to eat bananas. That was the potassium I needed. My major side effects were (and still are I should say) memory loss and concentration. I use to be a very friendly and outgoing person, but after taking this drug I have become a very quiet and withdrawn individual. I am really not depressed, I just find that when I am in conversation with people I have a hard time finding the words I need and I fumble a lot and people get annoyed and it causes them I believe, not to want too engage with me as much. Quite disturbing! Finally over the years all the tingles went away. Now though after 10 years, for the past two days my face has tingled off and on. It's a little scary. I read other people have the same reaction, so that's a little relief on the brain.
Eawillis - I have also been on Topamax for about 10 years. I have varied the dose to as much as 550mg per day. Taken originally for migraine, this medication significantly reduced symptoms of my ataxia and tremor, changing my life. I now take 300mg day as this is the most i can take without bad side effets. However, the positive effects are no longer as good - although i seldom get migraines, the neurological symptoms are no longer held back by the Topamax. Since the ataxia is degenerative, I don't know if it is my toelrance for the drug or my degeneration that is causing this. I long ago gained back the weight I initially lost (sadly). I know my brains is a bit slower, but I am also ten years older.
Katiethree - @Uss1107 I Have a hard time trying to converse with people to, I forget, and fumble over my words....I actually feel stupid, I know I'm not but they must thing I am high on something, my eyes look sleepy and everything, and I don't have the energy to explain anything to anyone. And how this pill makes me feel I don't care...kinda in another world. I called my pharmasist today, and told her that there are no warning labels on this medication, because it's making me tired, and drowsy, and there should be one about driving and operating machinery. And she said that alot of people don't get these side effects and they should wear off soon.....anyway.....my brain is way slow.......and i never lost a pound so...that didn't work for me.........and I keep having to correct what I type, cause either I am that sleepy, or my eyes are blurry or I am out of wack....or something, but I used to be a really fast typer, but every second word i have to correct...anyone else do that on these pills
Katiethree - @Uss1107 I Have a hard time trying to converse with people to, I forget, and fumble over my words....I actually feel stupid, I know I'm not but they must thing I am high on something, my eyes look sleepy and everything, and I don't have the energy to explain anything to anyone. And how this pill makes me feel I don't care...kinda in another world. I called my pharmasist today, and told her that there are no warning labels on this medication, because it's making me tired, and drowsy, and there should be one about driving and operating machinery. And she said that alot of people don't get these side effects and they should wear off soon.....anyway.....my brain is way slow.......and i never lost a pound so...that didn't work for me.........and I keep having to correct what I type, cause either I am that sleepy, or my eyes are blurry or I am out of wack....or something, but I used to be a really fast typer, but every second word i have to correct...anyone else do that on these pills
Katiethree - @Edouth I don't know about this but my doctor put my topimax up to 200 mg/3 times a day (kinda weary about that) he did that today....so much for driving, because I refuse to if I am all woozie
Katiethree - @Edouth I don't know about this but my doctor put my topimax up to 200 mg/3 times a day (kinda weary about that) he did that today....so much for driving, because I refuse to if I am all woozie
Katiethree - @Edouth...no he just went from 100 to 200mg....not 125, not 150...just the big jump...I took it this morning, but so far so good, but it's only been 20 min, but last night, i just had to lay down....i will be back later....got to get the kids ready for school....wish there was another way to contact you instead of thru this thing...there is another reason he gave me these thing....not just for headaches...wonder if its ok if i put it on here...maybe it would help others if i put it on here i suppose,,,..no one knows me i guess....talk soon
Katiethree - @ Edouth Well that was really swift of me, I had to go to town today of course, me trying to be as careful as I could !!!!!!!!!!!!!!!!!!!! Going thru the drive thru 2 get me and my friend Tara a coffee and I drove my truck right fare into that big cement thing that is at the pick up window so people won't drive into the buildings.....my truck is 2 years old, not a mark on it, now it had a huge dent in the bumber and scratched it above it on the paint.....duh.....so I parked and truck and did my stuff walking........stupid stupid stupid, I knew it...........anyway it's only a truck so I have to suck it up, thank god it wasn't a person....I got a doc appt next week and I am telling him that and to knock me down to 100 again, i can't do 200mg of this stuff
Edouth - Oh, no! That is scary about the drive-thru incident! Geez...200mg/3xday is quite a jump and quite a lot. Is your doc a neurologist? I certainly wouldn't want to discourage medical advice; however, you have to consider the obvious question: do the benefits outweigh the symptoms' risks? Question for yourself...is the initial medical issue improved with the existing dose?
As I mentioned, I was started on Topamax due to my migraines. I had experienced them for 24 yrs, but they had increased in intensity. Before starting the med, I had a spinal tap and it was discovered that I had intracranial pressure (intracranial hypertension ~ ICP ~ pseudotumor). I ended up having spinal fluid removed to relieve the pressure. So...in order to control the production of spinal fluid AND control the frequency of the migraines, I was started on Topamax. Diamox is the med traditionally used for ICP; Topamax is a jacked up version of it, or so I was told.
That's the long story of why I'm on Topamax. Again, I must stress that when you do wean off of it (eventually you will), please remember to do it very slowly over a long period of time...25mg or less a week. Sort of crazy that the doc titrated you up so quickly.
Keep watching out for yourself! It's okay to question the doc. I've worked with many a doctor. They are "practicing" medicine and someone had to graduate at the bottom of the class. :)
Edouth - Oh, and yes...I initially did and continue to have minimal hair loss. Fortunately, it's not noticeable since my hair is thick. :)
Katiethree - @edouth no my doctor is a phychrist...he gave me the pills so i wouldn't binge eat and for my headaches...works for both but i think he over did it, i have to talk to him about them, i can't concentrate, i can't rememeber stuff, i was driving last week to take the kids to dairy queen,and they said momy dairy queen is back there...............and i know where it is.............i was just in a daze...............this is bad..........and my truck ugh............and i can hardly type here...its taking me 20 min instead of 4
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Katiethree - @Edouth Just want to tell you what the doctor has me on for medications:
200 mg of topimax a day for what I said
Sublinox 2 at bedtime/10mg each for sleep
Pregabalin 150 mg / for sleep...its suppose to be for used to relieve neuropathic pain
3-1mg a day of ativan, under the tongue for anxiety
1 Cipralex 20 mg for something
then my family doctor has me on lipitor 10 mg
and Pantaloc for my stomach
I also take Xenical which doesn't help much 120mg 3x a day
I am 6ft tall and about 180 pds....healthy weight probably.....didn't lose anything from the Xenical or Topimax.......I was a 163 two summers ago from stress and from putting my husband out due to alot of abuse...it was horrible, the kids and I had to go to a transistion house for a bit, anyways, we got to come home, we had to get the police to come and remove him from the place cause we had another reason for him to get picked up...no charges laid...but its all on record...long story........no need to get into that...just wanted to let you know what meds i am on....I don't feel normal at all, and the doctor won't listen to me one bit and this is the 3rd one I have tried and they are going to cut me off my sick leave insurance, and i am not getting any child support/allamony or anything cause he won't give me a divorce or legal separation cause he doesn't want to pay it....so 3 years into this mess his lawyer fires him....so here we go again......and now I don't have a clue what to do....anyway I am praying hard and i know that the Lord will help me find my way !!!! whew....
Edouth - @Katiethree...I'm so sorry for this difficult time that you are going through! I came across this info...it looks like Topamax can be effective for what your doc is treating, but again, at a lower dose. [link removed] Copy and paste to view. On the positive side...when you do wean down, at least you will have a good stock of the med since he/she wrote the prescription for such a high quantity and you will be taking less of it per month. Also, just to make sure you know...Topamax has a generic brand, thank goodness. I'll pray for you, too. :)
Edouth - @Katiethree...dratz, the link was removed. I'll just copy and paste the forum quote here. The post is just talking about how this person used Topamax for your diagnosis and how she titrated up to a workable dose: "You want to get a pill cutter and start with 25 mg in the a.m. a 25 mg in the p.m. Or get your doc to prescribe you the 25 mg dosages. Remember this is a seizure med so the side effects are pretty severe. DO NOT JUMP AHEAD AND TAKE 100 MG. You will freak the freak out! You will start with 25 mg in the morn and 25 mg in the pm for one week. Next week 50 mg in the morn and 50 mg in the pm, next week 75 mg in the morn, 75 in the pm, etc, until you and your doc, or just you, whatever, find a comforable dosage (you'll know when). Some people need all the way up to 400 mg, some are good at 75. My comforable dosage is 100 mg, 50 in the morn, 50 in the eve." This was off the low carb friends website.
Katiethree - @Edouth the links are still here as far as i can see, wonder how come you cant see them
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