Topamax Lyrica

Discussion in 'Fibromyalgia Main Forum' started by reeny64tang, Dec 5, 2006.

  1. reeny64tang

    reeny64tang New Member

    My rheumy put me on Lyrica for my muscle pain my neuro put me on Topamax for my headaches. Both around the same time. I have had a metallic taste in mouth - everything tastes terrible. Also my feet and hands go numb - they seem to just fall asleep. My face also. Anyone else have these - and since I started at the same time -- any suggestions as to which may be causing - I have to ween off - which I am doing and the side effects are going away.
    Just wondering if others had these?
  2. mezombie

    mezombie Member

    Topomax made me very sleepy. It also didn't help stop my migraines, so I went off it. Sleepiness is a common side-effect of Topomax.

    I've never taken Lyrica, so I don't know whether that's causing problems as well.

    Hope this helps.
  3. Diva55

    Diva55 New Member

    I've been on Lyrica for 2 years (after pleading for the doctor to ask the medical authority for permission to trial it on me as it's not licensed over here in the UK for FM).

    I had the worst side effects but I always get that with every drug I've tried & always give a drug a good try. I took 150mg at first and went up gradually to 600mg after 4 months.

    The side effects included a metallic taste and not being able to eat ANY foods as I would throw up or even when cooked I couldn't face it. I then got to the state that just the smell of food made me sick & I couldn't even go past a supermarket.

    BUT I had a complete addiction & I mean addiction to chocolate (up to 15 bars a day!)& coffee. The doctor said my mind was asking for energy and these were quick fixes but when my adrenals settled down I should be o.k.

    But it has never gone away and I lived on just chocolate for months & months & continue with the addiction today , although much better than it was. When I was on 600mg I had narcoleptic espisodes which were so scary & had the dosage reduced. At that time I was sleeping up to 20 hours a day!

    I used to get severe hallucinations which have mostly gone away.

    I have slowly cut back on Lyrica & have withdrawl symptoms of anxiety attacks. The reason for cutting back is I'm trying Recuperation (natural minerals from Spain) & found these really help the pain - almost as much as Lyrica. So I want to cut out Lyrica completely as it is a powerful drug which affects the brain.

    So I would say continue with Lyrica if you can - try a day without them and see the difference in the pain control! Also adjust to the dose where you feel most comfortable.

    But look into Recuperation if you can afford it as it's natural. But it's a long term thing and can take a long while to kick in. I take Gingko Biloba by Pharma Nord for circulation problems & am just trying Probiotics for my stomach issues & Spirulina for additional energy.

    Let me know if you have specific questions on anything else.

  4. I had all of that, now...I should say, I've been diagnosed with MS, after I quit the Topamax, though...the numbness in my hands, which I had EVERY gone (FOREVER-I HOPE), tingling, numbness in legs...and the *worst*

    Burning feet, that started out gradually, then escalated over several months, maybe a year--and had me literally stamping my feet, as in a temper tantrum, crying, putting ice on them until the ICE hurt too much to bare, just to try & rid the horrific burning pain in my feet...which had started out, with slight numbness, then I'd feel like my feet were being jabbed with thousands of tiny needles, or splinters, over and over...then this burning--I am NOT exaggerating--it felt like I had hundreds of tiny hot coals, deep in the tissue of my feet, just burning.

    My neuro paid no mind, even as I'd break down in tears, (I would NEVER, take my own life- but the pain took over my every thought, stole my personality, I was completely alone, and completely miserable, and terrified that the pain would never stop--your mind starts heading in a very badddd place, in extreme pains like this..)

    I was on Topamax around 2yrs, or so...and, In the beginning, (maybe due to other meds that cause weight GAIN), I just lost a lb or two, but, maintained, a 'fairly' satisfactory weight, for most of my doctors..

    My hair, has been falling out, since age 25, was REALLY falling out. and then...I too, became (NOT BY CHOICE, or ANYTHING I COULD CONTROL) completely* anorexic. Just absolutely unable to eat.

    I went down to 113lbs, my pain dr started doing labs, integrative medicine doc, did labs, they put me on a bunch* of meds (left with FIVE scripts, in 1 day--and the pain doc forgot* one--the appetite stimulant!!)

    They wanted me on protein shakes, this, that, the other..I tried & tried to explain---the MINUTE food is even mentioned, to me...I would feel instantly FULL---OVERFULL even, and that would be that. Or if I smelled hubby's food. Appetite-gone.

    It would take me ALL day, to eat 1/2-1 rice cake...then I wouldn't eat again, sometimes for 4+ days..I could not do a thing about it.

    At the time, I (like always!) had many different things going on, I'd had 2 surgeries in 3 months, & suffered infection, both times, I'd been on steroids, which severely* slowed my ability to heal correctly...and I'm left with a much larger scar, than I should have, from that surgery, I just couldn't, I THOUGHT, well, the infections, meds, all these doctor visits, body is just tooo sick & worn out* to eat..

    Here I was on Topamax, FOR nerve pain (a facial nerve condition), never in my wildest dreams-could I have imagined, or known, that it was causing* all the other pains, burning feet, tingling, numbness, YES, my NOSE, frequently went numb, or upper lip, and also frequently, entire face. It would aggravate me to NO end.

    I'd also have creepy crawly sensations, etc sometimes, my face would feel like I had a spider web accrossed it...I would wipe it, and wipe it, and wipe it---nothing there. Drove me batty. Again--no idea any of this was Topamax..after all, after 3+ yrs of tests, observation, numerous doctors, I was diagnosed with MS.

    ...and the side effects from the Topamax.....were JUST like those of MS, though, a lot of my friends with MS, said they'd never had *that* severe of burning pain, which I described in my feet...we just shrugged, as, just with fibro, everyone's MS is different, too...a few tried to help, and asked about diabetes (diabetic neuropathy), but, really, no one could offer much, for help..

    I was on 300mgs of Topamax, then started Lyrica, as we started increasing the Lyrica, I thought it was a miracle!!!! SLowly, but, once I was on 300mgs of Lyrica, my feet never burned, my hands, face, and just 'random' numb spots, stopped,,,my facial nerve pain had excellent control most days...

    But, then, I began having VIOLENT muscle twitching & jerking, which got worse with each increase, until it was so violent, the jerks would nearly throw my back out, one jerking episode-my lAST night on Lyrica, shot my body up off my pillow, & my head & neck, were thrashing side to side...then I just flopped back down on the pillow, like nothing. THAT terrified me...and my pain clinic doc, had me stop it immediately. I didn't have withdrawls, that I remember...

    The twitching & jerking did not- go away, after stopping the Lyrica..I already had mild jerking, twitching & intention tremors, and had been on Klonopin, but, weaned myself off it.

    After the Lyrica, I was put back on the klonopin, and, at half the dose i'd previously been on for years, I'm beginning to twitch & jerk more often, and my tremors, just come & go, as they please..

    The other side effect from Lyrica, was sudden onset, bouts of very messed up, blurry vision, that wouldn't clear, until I left the computer, or t.v. for 20 minutes or so, and it would happen quite often (takes out driving!)

    Then, (wasn't a bother, I needed it!) I gained 7lbs total, in 3 months on Lyrica.

    Then--quitting the Topamax....WOWWWWWW did I gain my weight back and THEN some (also started month of steroids, shortly after THAT-so.....realllllly sucked)

    Until I was off of Topamax, I did not even know just HOW bad my loss of appetite was...It came back with a VENGENCE, and I realized, how very very little I was* eating..(just wish the pendulum hadn't swung SOOO dramatically to the other side..)

    My hair quit filling the shower drain, brush, bathroom floor, etc..though, it still falls out, plenty enough, it's not large clumps, after every shower, every brush, etc..

    At first, I was so bummed that I was having to quit Lyrica, because, I was TERRIFIED all the numbness, tingling, pins & needles, burning, etc would return..It really hasn't...maybe one or two bouts with the numb hands. That's it- and, of course, my facial nerve pain hurts much much more, right now, but, other than that..

    All that crud, was MEDICINE, even though I have 2 brain lesions, on MRI, and they said at 23yrs old, and because of the "lesion location" MS should be considered.,and then because of many other symptoms, too numerous to list, test results, 05, at age 27, Some neurosurgeons diagnosed me with MS...

    I don't really fully accept that. I'm walking better (no cane,) I do still have to use a wheelchair at the hospital, too far to walk to my dr's offices.. all those ugly symptoms, are either gone* or on a longgg vacation,,

    Time will tell, but, it's been--???8-9 months, so far, so good....with those, at least.

    As far as a metallic taste-the first thing my neuro said, putting me on Topamax, was "carbonated drinks will taste like crap to you, on this medicine" that wasn't totally true for me, but, things would taste funky, sometimes, or just flat out foul...and on ocassion, I'd think my pop was flat, like no carbonation, but, my husband would tell me it was fine..

    (now LUNESTA--gives you some NASTY rotten metal-like taste! ick! I quit that one too. Didn't work for me, and that taste was with me 24/7.

    Hope this helps with your questions...

    Take care,


  5. BabiCati

    BabiCati New Member

    would they give you both they are basically the same thing-- anticonvulsants. Do they each know what the other prescribed? I was on Topamax for both but had to stop due to sleepiness and I am now going to try the Lyrica. I don't think you should be taking both. I have FMS and migraines.

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