Gabapentin /neurontin for sleep? Does it help if you have bad insomnia?

Discussion in 'Fibromyalgia Main Forum' started by herbqueen, Mar 19, 2010.

  1. herbqueen

    herbqueen New Member

    Question---I'm pretty much in agony. My FMS has turned into somekind of degenerative neuro MS type condition/probably neuro Lyme. I've been homebound now for 3 solid months (was working before). With onset of optic neuritis/vision loss 3.5 years ago I got increasing neuro symptoms-intesnse brain fog, jerking, twitching, eye pain both eyes, headaches,foot drag. Fibro symptoms shifted to more neurological . So far MS tests/MRI's have been clean. I had a neuro/big worsening of symptoms on a herbal lyme protcol where I had an explosion of intense new symptoms 2 years ago that lasted 4 months and did not recover back to baseline. I continued to progess downhill in 2009 -tried diflucan/flagyl fungal protcol in late november and hell broke loose. I went from bad brain fog, poor sleep, feeling not strong, some foot scuffing and some jerking to now in agony 7X24. Neck is so weak/difficult to hold head, head jerks, intense dizzy sick feeling in brain,entire body weak and shaky, both eyes hurt, body jerking and twitching all over, total insomnia, balance, gait. left side numb, sometimes right has numbness, nervous system in overdrive/shaky/can't come down, coordination, spatial awareness, brain fog, burning all over body, some night sweats. Every week for the past 3 months I get a new symptom as I continue the downward spiral. The average of 2 hrs/sleep per night is horrific and I know I can't turn this ship around until I get some sleep. Trazadone barely works nor does ambien. Saw Neurologist this week- he did not seemed all that concerned that I'm in agony, losing all function- I don't think he suspects MS because of all of my weird symptoms- he mentioned CFS!!! He doesn't know what to do with all my symptoms. I'm not the typcial MS scenario. I said CFS does not cause optic neuritis. I mentioned Lyme and of course you know how that went over. He mentioned a sleep study or seeing an endrin. I told him the condition is causing the sleep issue not the other way around. He prescribed Gabapentin to help with irritated nervous system and sleep. Does this help you sleep? Sorry I needed to unload a little bit. I'm in such agony, terrified about where my body is headed. I see one of the top lyme md's in early May(was long wait)-but am terrified my body can't handle the drugs and worried it will cause seizures( I feel close to seizures the way mybody jerks forward and night and the dizzy intense pressure on my eyes. And scared because taking a few drugs for a few weeks sent me inthis downward spiral. I'm also chemically sensitive and show phase II liver detox issues on the genomics liver test-particular issues with medication.

    So terrified, so sick, and so tired--this is my worse nightmare. There are some days I do not want to go on. My kids and family need me and I'm not there for them. I'd rather be up any kind of health condition than this/neurodegenerative one. oh to have my old fibro only symptoms back!!!This is so hard. I'm too young for this. I led the perfect lifestyle aside from work stress for past 12 years since fibro diagnosis. All organic, free range meats, no wheat, everytihng homemade from scratch. walked 3 miles every day--Thought I was building health and look where I'm at. This is unfair. Help!
  2. heapsreal

    heapsreal New Member

    also interested in gabapentine, read a study using this med for insomnia, in the study the majority of people responded well to 600mg, but from other stuff i have read it has a large dosage range and safety margin, so you have a dosage range to play with.

    I have had some success with lyrica, on its own didnt help sleep but it does improve sleep combined with other sleep meds. Of late lyrica has pooped out on me, bigger dosages are just to expensive so will have a chat to my doc about using this med, but once again i think it will have to be used intermittently to help reduce tolerence to its sleep inducing affect. Im also going to use it for restless legs. Was on topamax, which intially worked well but as dosages increased to around 100mg so did the sides, indigestion/reflux and a horrible metalic taste all the time to the unbarrable stage, so stopped this and went back to lyrica until i see my doc. Also going to ask him about dopamine agonists to help with restless leg syndrome but just concerned it might be too stimulating and worsen my insomnia.

    Insomnia is just a never ending endevour, nothing works forever. Even though my cfs has improved greatly in the last 12 months, insomnia i think will always be with me and now with restless leg syndrome it will reduce the meds i use to use for sleep as some worsen rls, eg antihistamines, sedating antidepressants and seroquel all worsen rls.

    I would like to try xyrem but its not available in australia yet and would probably be to expensive.

    if you find any cures!!! let me know
    cheers, good luck
    [This Message was Edited on 03/19/2010]
  3. Bunchy

    Bunchy New Member

    I can relate to the burning all over and seriously irritated CNS and ridiculous insomnia - Klonopin helps me with all of that and some of the other types of pain.

    I take Ambien and Klonopin - this is my best combination for the above.

    I would ask for a second or third opinion from a Neuro - your symptoms seem very severe.

    Hang in there,

    Love Bunchy x
    [This Message was Edited on 03/19/2010]
  4. HeavenlyRN

    HeavenlyRN New Member

    I'm certainly no expert on what meds work for what diseases. However, I took neurontin (I have fibro) for several years for the pain. It did work for me to help me sleep. I was taken off the neurontin over a year and a half ago when Lyrica came on the market and I find that it's actually made it more difficult to sleep.

    I don't know if this helps or not, but I thought I would at least answer your post and tell you my little story!

    Good luck with everything. I'm so sorry that you and your body are going through all of this.

  5. JLH

    JLH New Member

    I am so sorry that you are having such a terrible time. It sounds like so many neuro problems. I hope you can get some help on them soon and find out what your problems are, and well as your optic problems.

    All I can help you with is to tell you that the Neurontin (gabapentin) does help me. I take it 3 times a day. I have tried Lyrica, but it didn't work for me--kept me in a trance all day!

    What else helps me is Cymbalta and Zanaflex. I take the Cymbalta twice a day, and the Zanaflex only at night to help me sleep.

    Hope you get to feeling better.

  6. hagabag

    hagabag New Member

    Hello herbqueen,

    I just read your blog and it sounded a lot like me...i dont know whats coming or going either. Newly diagnosed and am going thru all this medicine crap. Wonder if any of it will help me. I dont know if you go the chat room but i would love to talk with you. Or if prefer i can give you my email. We are all going thru so much wish i could feel better too.

  7. KerryK

    KerryK Member

    Sorry to hear about all your trouble. Not all unfamiliar. Gabapentin, I find, is quite helpful for sleep. You should be using at least 900 mg/day to obtain a useful benefit for pain and to calm your nervous system. I did find Lyrica to be very helpful for all my pain/sleep symptoms, though it left me drunk all the time. Neurontin does't help as much but it doesn't leave me drunk either.
    Good luck!
  8. herbqueen

    herbqueen New Member

    post your email and I'll email you-
  9. asweeney

    asweeney New Member

    I was put on it about 3 yrs. ago. Started @ 600 mgs. and told to work up to 1200 mgs. When I was refered to a Neuro he laughed and said he wanted me to take 3600 to be more effective. I was lying cuz I could never get above 400 mgs. w/o side effects and would be a "zombie" from the small dose anyway.It also made me real nasty.My family called them my "Iva pills" (Ivabinabitch) LOL. But it sure did help with sleep.