doc taking off Neurontin, on Topamax, comments???

Discussion in 'Fibromyalgia Main Forum' started by Pennygirl2, Jan 16, 2007.

  1. Pennygirl2

    Pennygirl2 New Member

    Hi Everyone. Missed you guys! I am seeing a new doctor, a DO, and would appreciate hearing about anyone's good or bad experience with Topamax. I was on Neurontin and was never able to take the smallest recommended dosage of (900 mg), so have been kinda hanging out at 200 mg for couple years not knowing if it was helping or hurting.
    My migraines have become much more frequent, sometimes a week at a time, and this doctor has me getting off the weak dosage of Neurontin and beginning Topamax after that to "help the anxiety and migraines". I am also on Klonopin and it seems to be working for sleep, etc. Please let me know if you have had any experience with Topamax. Thanks for your replys, Penny
  2. balletdancer74

    balletdancer74 New Member

    Hi Penny,

    I'm sorry the Neurontin is not helping you. It's been a godsend for me. In fact, it was the very first med tried on me at 25 years old. It's a hit or miss.

    I was also placed on Topamax at one point which only made me extremely dizzy/drowsy and didn't touch my ubiquitous pain.

    The main concern you should have with long term use of Topamax is that it "can" cause glaucoma or other eye disorders. It also causes weight loss quite often.

    I have the rare, incessant, 24/7 head pain/pressure, and I, too, take Klonpin among other meds. I find acupuncture and neuro/biofeedback as well as myofascial massage helpful.

    Other possible options instead of Topamax (too risky in my opinion) are Tegretol, Depakote, Nimotop, Inderal (contraindication is asthma), etc. as preventives.

    Do you have an abortive med for your migraines?

    If you have any questions, please ask away as I've tried just about everything (no exaggeration) for not only the FM/MPS complex and M.E. (etc.), but also for the perpetual head pain which is the bain of my existance...

    I hope you find something that helps soon...Keep us posted!

    LB32 (Leeza)

    Perhaps a neuro who specializes in headaches of all types would be helpful. Don't get me wrong - DOs can be very good too for FM and/or M.E. They're quite popular in the U.K.
  3. ourplanet

    ourplanet New Member

    Hello Pennygirl2,
    I was up to 2400mg of neurontin a day and I continued to get worse and gain approx 70lbs on it! I am now taking 125mg topamax for neuropathy and migraines. (Yahhhh!! It treats both and have done very well. Be sure to increase dosages slowly. I had a lot of visual strange stuff (especially at night), seeing trails and blurred lights etc, but it did calm down after 2-3 months as my body adjusted. It has been INCREDIBLE for nerve pain and about 90% for headaches. If you have any other questions, let me know.
    Gentle HUGS, ourplanet
  4. netnut

    netnut New Member

    I dont have migraines but I have been on topamax for about 5 or 6 years now for bipolar. I really like it.

    Im on what is considered an extremely high dose now with pretty limited side effects.

    My advice is to start extremely low and increase extremely slowly. I started off with 25 mgs for 2 weeks and increased my dose by 25 mgs every 2 weeks.

    You may notice some slight sleepiness at first, some mild dizziness, and the most bothersome...word recall problems. It gets better after you are on it for awhile. If you are sleepy after you take it, take your dose at nite. I take 600 mgs a day now and that was cut down from 1000 mgs a day when I switched doctors.
  5. Pennygirl2

    Pennygirl2 New Member

    Thank you so much for quickly responding to me about the Neurontin and Topamax. That is really good to know about the glaucoma because I earlier took Doxepin and had to quit because of possible glaucoma problems. Strange because one of my symptoms now is seeing flashing lights very frequently with or without a migraine. So eyes are a real concern, though I had hoped this might help--I wonder. I am having way too many migraines.

    Thanks for the suggestion of accupuncture, neureo/biofeedback and myofascial massage. I wonder if the DO can help with that.

    I do take imitrex, but much too often lately.

    I see you are in the UK. That is cool. I am in Colorado, USA. Since you mentioned the perpetual head pain, I just thought I would point you toward the next two replys which emphasize how carefully and slowly one needs to go onto Topamax. I am still undecided, but I so very much appreciate your reply and maybe I will get to talk to you in the chat room sometime or you can post another message.
    Hugs, Penny
  6. Pennygirl2

    Pennygirl2 New Member

    Thank you so much for your caring reply about Topamax. It is good to see it is working for you and especially 90% of your headaches. I am getting them so often now for days at a time and taking imitrex like candy. Strange, but I have been getting lights similar to what you discussed now off and on, daytime for couple years now with or without migraine. So hard to know what to do.

    I have to make up mind soon (like tomorrow I am supposed to start) as I have gotten down to 100 Mg Neurontin. It is just so dreadful to get off these medicines so that has me hesitating too, but can't live with these migraines on top of other problems either.

    Thank you so much for your information and I hope we have contact again. Hugs, Penny
  7. Pennygirl2

    Pennygirl2 New Member

    Thank you so much for replying to my post. I am having such a hard time getting off neurontin, I just hate to start another one, but the migraines are toooo frequent and flashing lights lots of the time.

    Such a dilemna we all face so often. I am sorry you suffer from bipolar disorder. I have a stepson who has it so I know how hard it is to deal with. Do you have CFS/Fibro too? Oh my God, that would be so hard.

    Thank you so much also for letting me know about going onto Topamax slowly. You suggested slower than my doc said, and I will definitely take your advice if I do try this drug.

    So glad to hear from you and that you are doing well on Topamax yourself. Hugs, Penny
  8. balletdancer74

    balletdancer74 New Member

    Hi Penny,

    I had to laugh when you thought I was from the U.K. Granted, my maternal grandfather's family is from the U.K., so I do have a lot of British in me, but I'm a much bigger mix than that (Spanish Jew with Moroccan Jewish Mum, Turkish grandfather on father's side, Greek born though Italian/Turkish decent paternal grandmother, etc. I guess one could call me a Hispanic, African American Jew! lol).

    Actually, I'm originally from CT - near NYC. I live in both places. My doctors are mainly in NYC. I confess that I do say "Mum," however. :)

    Anyway, a doctor of osteopathy can be very helpful for those with M.E. and/or FM, so I would ask your doctor. He/She might know of someone for MP massage, etc.

    It can't hurt to try the Topamax. The worst thing that can happen is that you either get an adverse reaction that won't go away, or that it doesn't help at all. There are plenty of options out there.

    I can't stress looking for a good neurologist who specializes in headaches of all types. Finding the one I have was a godsend!

    Keep us posted as to how you feel and what you decide to do...a new post might help. :)

    Cheers! (j/k)
    LB32 (Leeza)
  9. Ginner

    Ginner New Member

    good infor. keeping for ref.
  10. netnut

    netnut New Member

    Did you try the topamax?

    Sorry I didnt see you answer me in this post but I missed it. I do have fibro and arthritis along with the bipolar and the topamax does help the nerve pain some. I really noticed a difference when I had to go a short time off the topamax due to changing docs.

    So anyways...inquiring minds want to know if you tried the topa and if it worked for you?
  11. Fmandy

    Fmandy New Member

    Hi Penny :)

    I take both medicines. I take around 1200mg of neurontin per day, and from 25-50mg of Topamax (Dopamax, lol) per day, depending on how bad my headache is.

    A year or so ago I couldn't tolerate Topamax due to the dizziness it caused. I think that would have stopped had I continued to take it but I was not motivated enough. Now I have taken Topamax for around 4 months and I couldn't do without it. It is really effective in stopping my headaches.

    People here laughed at me when I first started T the 2nd time. I asked if it made them feel goofy and they told me that their docs called it Dopamax... I don't feel the "goofy" near as much these days.

    I take neurontin for peripheral neuropathy.

    Good luck,


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