Discussion in 'Fibromyalgia Main Forum' started by CarolK, Jul 27, 2003.

  1. CarolK

    CarolK New Member

    Well I last posted on this subject in June... I said I would post the results after I'd been on Topomax for a while. Well I cannot tolerate it! The itching and overall skin irritation was about to drive me crazy! It was constant itching... especially in the evening! So now my dr. is trying me on a low dose of Neurontin... so far so good.

    I sure wish the Topomax had worked for me... I really need to loose weight! Twice I've tried to walk the length of our local shopping mall and got stuck cause the pain was so bad that I could not get back to my car! Once I just happened to have a codein with me.... so I waited till that took effect before I could walk back to my car. The other time I just had to walk a little and sit and then walk some more till I made it back to my car. Now I plan on keeping pain meds with me whenever I go out. Yesterday I had to have my daughter go get my car cause I couldn't walk back to the parking garage ... it gets scary at times to think that this DD has taken away so much from my mobility!! CarolK
  2. shazz

    shazz New Member

    I am on my 5th night here, and so far so good.
    I have been sleeping like I haven't slept forever.
    I can't walk the mall anyway and yes it is scary how much we are limited in what we do. I always keep pain meds with me because you just never know.
    Did you start to lose weight with the topamax? I haven't noticed any decrease in my apetite but did notice that things don't taste "right". I am only on 25 mgs and will work my way up from there, and am hoping that when I increase my dosage that the anorectic effect will kick in, I also need to lose about 30 lbs that has been hanging around for about the past 5 years.
    I just hope the sleeping part sticks around, what a relief.
    I am drugged out feeling the next day but am going to stick this out and hope that goes away soon.
    I hope the neurontin works well for you.


  3. CarolK

    CarolK New Member

    Hi Shazz -- I started on the 25mg of Topamax and then slowly increased to 50mg. When I told my neurologist about the itching, he said he'd never heard of that side affect. Once I stopped the Topamax the severe itching stopped.... however, I still do have some itching... the meds just aggravated it.

    As to weight loss, well I wasn't on it long enough to get the weight loss that others have talked about. I did notice a decrease in appetite, but no problem with foods tasting odd. I was only on it for about 3 1/2 weeks before discontinuing it. Good luck with your adventures with Topamax... others on this site have have wonderful success with it... hope you do as well. Blessings, CarolK
  4. PatPalmer

    PatPalmer New Member

    Have you read Hippens topic on page 2 - Pain meds, can they be avoided by detoxing?????

    It`s valuable advice.

  5. Betsy2

    Betsy2 New Member

    I tried Topomax also and had the same problem with the itching. Interestingly enough, both the rheaumie and the PA said maybe I could try it again sometime. I don't understand why I would want to if it causes me to itch.
  6. lmn

    lmn New Member

    Just came from a visit with my primary. We are trying to find something that will help with my neck tension and headaches. She suggested I discuss Topamax with my rheumy next week. She said it is an anti seizure med. I did a little bit of research, and it sounds like it may help with a host of problems.
    Please correct me if I'm wrong. Topamax may relieve FM pain, help me get a good nights sleep, and cause weight loss. Can this one drug do all that? I find it so hard to believe, especially since I've tried many things over the last 2 1/2 years.
    My doc is a bit concerned, not just about our failure to find something to help my pain, but also because my weight has been creeping up, and my grandmother had diabetes and my sister has insulin resistance. We certainly don't want to add diabetes to my list of problems!!
    Anyway, I've read all of your posts and will hope for the best. Unfortunately, I'm one of those people who experiences side effects from drugs, so we shall see. Thanks for letting my talk.

  7. CarolK

    CarolK New Member

    JACKIE -- the itching from Topamax was both topical and neurological. My skin became hyper-sensitive and it felt like there were crawlies all over it... everywhere! I do have neuro-pain (ie burning and stabbing pains as well as deep aching) and so far I've noticed very little affect from the neurontin. I will start increasing the dose (from 100mg to 200mg) today. As for headaches... well like most everyone else I'd have headaches that lasted weeks and months... Hurting anywhere from mild to severe. Those have stopped since I started on 40mg of Paxil.... don't know if the Paxil is doing anything for the headaches, but whatever the Paxil does has stopped the headaches. Hope this helps you.... and good luck with the Topamax! Blessings, CarolK
  8. shazz

    shazz New Member

    I know it sounds too good to be true, doesn't it, pain relief, weight loss, and sleep? Almost like a miracle.
    So far the only thing I can see is sleep, and that in itself is a miracle. I have even been napping during the day, still feeling groggy most of the day, and still able to sleep at night. Maybe I am trying to catch up for the last half year of NOT sleeping at all. Nothing on the pain relief or weight loss yet, but it is very early, and my dose is very small, 25 mgs for two weeks and then up to 50. Don't know if I want to take that as 25 mgs twice a day or all at once at night, I guess at this point it is up to me. Kinda nice to havr some kind of say so about something.
    Anyhow, hope this works for all of us as we bump our doses up and it turns out to be something we have been waiting for.
    Per another post I read, of course I realize drugs do not "heal" us, but at this point in time symptom relief is mucho welcome!! And I will continue to try whatever it takes to relieve some of this misery I have been living lately.

    Hugs all
  9. lmn

    lmn New Member

    Thanks for the good wishes. I too, hope this works for all of us!! I'll keep you posted.

    PS I just asked in another post "cranky and irritable", but I was wondering if you knew the answer. Does Topamax help with mood?
    [This Message was Edited on 07/29/2003]
  10. shazz

    shazz New Member

    I have seen it listed for use as a mood stabilizer when reading up on it. I haven't noticed I have become any cheerier yet, but am still new on it.
    Here's hopin!!
  11. shazz

    shazz New Member

    And today I noticed, my appetite is "calmed" a bit.
    not gone mind you, but I am always craving food. I have noticed that stuff doesn't taste as good as usual, but that never stopped me, I eat when I am not hungry, I eat when I am bored. So I am really going to start watching that while maybe I have a little help here.
    I also have noticed my gums are kind of irritated and I have pins and needles in my hands and feet, I am still going to stay the course though, I need the sleep, badly. I feel as if I will never catch up on that, but I am enjoying trying. I am amazed at how much better I feel after sleeping for the whole night. The pain isn't less but it is somehow more tolerable, if that makes sense?
    And even though I am kind of "drugged" feeling, I am still more alert than normal? I know this is all kind of contradictorary in terms but it is true.
    So far so good and the sleep alone is worth the side effects so far.