out of bed after 5 months with new prescription

Discussion in 'Fibromyalgia Main Forum' started by franklynda, Sep 6, 2006.

  1. franklynda

    franklynda New Member

    When my CFS became so bad that I could hardly get out of bed, I did a lot of research on the net and found the name of this drug. I gave the article to my doctor and he put me on it and within 5 days, could function and get out of bed. Still have bad days but this has helped me at least function to the point where I can actually have peaks and valleys, where before it was just valleys.

  2. Mikie

    Mikie Moderator

    It is one of the pillars of my treatment regimen. It has relieved so many of my symptoms. I'm glad it has helped you too. The brand name is Klonopin for any unfamiliar with this med.

    Love, Mikie
  3. julieisfree05

    julieisfree05 New Member

    This is the only medication that I still take - after 14 years of trying everything else out there. Xyrem was what really got me back on my feet though. You can do a search on my posts for more information if you're interested.

    - julie (is free!)

    I love her
    she hates me
    and I drink.... - Daryl Worely
  4. softy91

    softy91 New Member

    For the last several years, I have been taking Neurontin and just switched to Lyrica.

    These were prescribed by both my GP and my pain clinic. The reason that I brought this up is that I have been told that they are in the same group as Clonazepam.

    Can anyone tell me what the differences are?

    I am out of any remission and desperately looking for some help.


  5. Geechie

    Geechie New Member

    but I can't see that it helps with the FM. I take it for nerves (panic).

    I was on Lyrica and Neurontin at times and had the most horrible (mental) side effects. Really, really bad. Just thought I would mention it - I have never had any bad effect from the Klonepin.
  6. JLH

    JLH New Member

  7. psychoforkaatz

    psychoforkaatz New Member

    I was just rx'd clonazepam a couple months ago for panic attacks and anxiety that keep me from sleeping. I only take it here and there tho, not daily. What does it help you with in regards to your CFS. It does help me sleep on occasion but I havent noticed other benefits. I wonder if I took it daily. I love to know what reduction of symptoms youve had.
  8. foggys

    foggys New Member

    these two are for seizures. they are anti epilepsy drugs. neurontin is one of the most over perscribed drugs for the wrong thing. just because the docs BELIEVE IT MAY help with sleep problems, nerve pain, panic attacks, etc,,,,

    i would not take it unless its absolutely needed. there are a lot of horror stories about neurontin. many people on neurontin have attempted or suceeded in commiting suicide. i think there is a lawsuit going on.

    check out this site. type in neurontin. its amazing what you find out about doctor cover ups etc.


    [This Message was Edited on 09/07/2006]
  9. greatgran

    greatgran Member

    So glad you have found a medicine that helps..I take Xanax which is about the same as clonazepam and the xanax has been the only med that I could tell helped with my CFS...Also I have panic/anxiety and its been a great drug
    for that..

    I take the xanax daily and have for 5 years..I am on a small dose .25 three times a day but if needed can take more...

    I am not sure why more doc's won't prescribe these meds...Cause the drug reps give them a bad name I guess..

    So, glad you have found a med that is helping so stick with it...

    Before my CFS, I suffered with anxiety/depression/ panic etc..and took Xanax for over 2 years and had no trouble what so ever of coming off it..But now I am not ready to stop taking it so will continue as long as needed..

    God Bless,
  10. WoodstocksMusic

    WoodstocksMusic New Member

    I've posted in the past on this board how I stumbled into the benefits of neurontin. It was prescribed for a bout of Trigeminal Neurialgia (this is one of the worst pains know to medicine and often called the suicide disorder.) I started with my dentist and told her to pull the tooth...yank the root out....take bone...whatever she had to do to stop the pain. She informed me there was nothing wrong with the tooth and sent me over to my PCP. He was young and had just joined in with his Fathers practice about a year earlier. I was started on neurontin at that point to stop the TN. I was heavily sedated with hydrocodone 30 to 40 mg every 4 hours to help dull the pain while we waited for the Neurontin to get into my system.

    About 2 weeks into the Neurontin the TN pain stopped. (Hallujah) Then about 6 months later I realized that I was no longer needing pain meds for the FM and if I did it was on a very very low dosage to what I needed before.

    Neurontin was the very drug that finally got me out of my 18 month bedridden condition caused by progressively worsening FM and back into life again.

    HOWEVER,(there is always a however or a side effect) at the end of a year I realized that even though I was up and doing things and getting dressed and going shopping and cooking supper again, when my 2 boys would get home from school I would retreat to my bedroom to escape their chatter and constant noise. I kept the house quiet all day long. Light bothered me extremely and I had to wear dark dark sunglasses if I even thought about going outside. I found that I was real short and snappish with the boys...and hubby too. So even though I was stronger and able to function without FM pain and the Fatigue also had all but dissappeared...life was still passing me by as I tried to avoid those noises of my little boys life.

    So I talked to my PCP and we decided to wean off the neurontin to see if the Trigeminal Neuralgia would return. The TN is now tolerable (if I touch the area under my nose on my upper lip I can still trigger the pain and it scares me to think something can re-trigger that problem... but I am now going to baseball games...going to the boys functions and going on lake trips with them. I tease with the boys and laugh with them once again.

    I have my life back. Or enough of it to call it a life again!

    There is no doubt the Neurontin helped not only that nasty flare up of the Trigeminal Nerve but a plesant side effect was when I realized that FM pain was also 75% improved. Coming off the Neurontin I did not have to increase pain meds. I still have flares of fatigue..but instead of lasting 18 months they only last a few days. And I know more about what causes these fatigue flares and I try to pace myself to avoid them.

    We all know that any medicine we take will have side effects...we have to weigh those side effects before and during taking those meds.

    I am certainly glad I took the neurontin. Probably would not be alive today without the relief it gave me from the Trigeminal Neuraglia.

    I can truly say Neurontin gave me back a good portion of my life from not only the TN but also FM. Then I recovered more of that life when I realized that I no longer needed the Neurontin. It was keeping me at a distance from the people I really loved and stopping it when I no longer needed it was a great choice.

    I never noticed that the Neurontin made me drowsy. But the hydrocodone that puts so many to sleep actually charges me up like I was on speed... I will actually feel a little jumpy inside...where as most people fall asleep when they take it...so what puts some to sleep actually wires me up.

    No Loritabs for me at bedtime! Benedryl does not make me sleepy either. I can take 50mg of it anytime of day and still go strong. My hubby will sleep for 8 hours on 25mg of benedryl.

    Be sure to listen to your body when your feeding it new drugs....nobody else can tell you how a drug will effect YOU...so be your own advocate and with your doc's help you will eventually find what you need to get you back into life again. Never give up hope. There are no over night magic pills you can take that will send you bouncing back into life...but with trial and error you will eventually find something that will help you....
    [This Message was Edited on 09/07/2006]
  11. Mikie

    Mikie Moderator

    Are antispasmodic/antiseizure meds. Many, many with FMS/CFIDS live in a constant slight state of seizure. We take these meds to stop this seizure activity which can harm the brain's neurons.

    Symptoms of the seizure state include insomnia, muscle spasms, RLS, anxiety/panic attacks, sensory overload, racing brain, and tinnitus. It has been a God send at reducing my symptoms to the point that I get a good night's restful sleep almost every night. Used to be I had to predose with a small piece of the Klonopin before setting foot in Wal-Mart, K-Mart, or Target. The harsh lighting, noise, confusion, and smells made me sick. I now seldom ever have to take it during the day. The longer one uses these meds, the better they seem to work. Also, I am getting better and that could explain why my anxiety and sensory overload are improved.

    There is evidence that these meds stop the pain messages in the brain. By themselves, they probably won't address severe pain, but they do seem to help with pain.

    These are what I call, "Heavy Hitter Drugs," and should not be taken unless one has performed due diligence, weighing the potential risks versus the potential benefits. I was bedridden most of the time and on opiods for pain. I slept nonstop but got no quality sleep. For me, the choice was simple. I will take the Klonopin as long as I need it to have any kind of life. One must wean slowly off these meds and stopping cold turkey can cause full-blown rebound seizures. It's important that people know this. These meds increase GABA in the brain and no one knows what long-term use of such meds will cause.

    The Guai and the Klonopin are the two best meds I have in my treatment regimen, not counting the ones I had to take to rid my body of the chronic infections. Those were more temporary. The Guai will be for life unless a cure is found for FMS. The Klonopin may be for life but I think as I get better, at some point, I will be able to wean off of it. I still pulse the transfer factors for a couple of days every six weeks. That seems to keep my infections under control unless I get sick. Then, I sometimes have to bring out the "Big Guns" (Doxycycline and an antiviral med) for a week or ten days.

    Klonopin is only part of my regimen but it is one of the most important parts. Neither Klonopin nor Neurontin will help everyone but many here have been helped by them.

    Love, Mikie
  12. luvmykitties

    luvmykitties New Member

    I had chronic hormonal migraines. Was on many different treatments, but nothing worked. Finally the neurologist put me on neurontin. It decreased the pain by half each month. But did not get rid of them. After 5 years I had a hysterectomy at 49 due to the headaches and a mass they found. It was a success, no more headaches now.

    The Dr kept me on the neurontin because it was helping me sleep, and I was doing so much better, after years of sleep deprivation. Turns out, my RH DR agreed, he even boosted the dose. I have Reactive Arthritis, Fibro and PTSD. I take a long list of meds, and yes they have side effects. Especially the Methotrexate, I lost all my body hair, and I am still not in a remissive state with my Arthritis.

    I do not have the mental fatigue or any issues with neurontin, in fact I know it helps both disorders well. This drug like all other ones doesn't always work for some. There are side effects, just like any other class of medications. I think we all must share our stories and successes. We can then ask about medications, and options.

    Isn't that what this board is about? I am thrilled to be here.
  13. franklynda

    franklynda New Member

    In 2003, got cfs so badly was in bed for 5 months. Took 2 each morning and 2 each evening and after a few days was able to get out of bed. Still have problems but am able to function somewhat. I get my peaks and valleys, but I know how to read my body now and cope very well. I'm still tired much of the time and still have bed days, but my eyes closing has lessened and haven't had a paralysis episode in one year. There was a cfs newsletter that had a 43 minute conference call at the CDC and they have determined that a gene is the cause of CFS. Good luck and bless all of us with this miserable affliction.