CFS and Klonopin Has It Helped You - If So How??

Discussion in 'Fibromyalgia Main Forum' started by gone2pot, May 2, 2003.

  1. gone2pot

    gone2pot New Member

    I am searching (continually) and am interested if Klonopin has helped memory/sleep etc ( I know they are linked)in those who suffer with CFS. I've had a relapse after a cold that has knocked my socks off. The exhaustion has set in and I'm having trouble getting back up - it's been five weeks.
    Thanks to anyone who takes the time to reply.
  2. MemoryLane

    MemoryLane Member

    I also take Neurontin with it which I think has helped even more - the two together. The doctors seem to prefer the Neurontin over the Klonopin and will increase it as needed.
    They told me it's not as hard on your liver.

    I take .5 to 1 mg of Klonopin at bedtime and 300 mg of Neurontin, 25 mg of Vioxx and 2 plain pink Benadryl.

    I sleep REALLY good most of the time, but I still wake up tired.

    The Klonopin helped the most with the little fireworks in my head that I experienced when trying to go to sleep and when I get over-stimulated - it was great. I think the doctors are trying to reduce my dosage and I truly wish they would'nt mess up my routine that has really helped.

    If Mikie gets to see this she will tell you, too, how much it has helped her.

    Hope this helps,

  3. Shirl

    Shirl New Member

    I take low dose (0.25 milligrams) of Xanax (which is in the same drug family) at night for racing brain syndrome.

    Then I take ZMA (zinc, magnesium, and B-6) for deep sleep, and 3 milligrams of Melatonin to help fall asleep.

    I really replied so that Mikie can read your post in the morning, she takes Klonopin, and it works well for her.

    Mikie has both FM/CFS, I have FM only...........

    Keep your post bumped for tomorrow. The board is running wild today.

    Shalom, Shirl
  4. Mikie

    Mikie Moderator

    Here in our library. It will explain why we have some of the symtpoms we have and how Klonopin (or Neurontin) help. You can also do a search and it will bring up all our posts on Klonopin.

    I now get quality sleep, have decreased my sensory overload, tinnitus, and anxiety. Also, my muscle spasms have gone away.

    Love, Mikie
  5. M68e66

    M68e66 New Member

    I have taken Klonopin for about two years. I took .5 mg three times a day. Then they changed my meds and took me off of the Klonopin. I was started on Ambien which helped me sleep, but they didn't want me to take it too long. The restarted the Klonopin but it did not help me sleep by itself. I take Zanaflex with it. Both of them together help me pretty well. I also take 200mg of Anafranil along with my other meds. The Anafranil may also make me sleepy, but after I take it all I get really sleepy in about 30 minutes. Different meds work better for different people, Neurontin did not work well for me, but I have heard alot of people that it has worked for. I hope this helped you, if you have any questions for me, my e-mail is I have been on about every med there is. I also just got approved for my disability in March, after fighting for 2 1/2 years. I can give you tips on that too.
    I have researched this disease for 3 years. I also have a very good Doctor at Duke Medical Center in Raliegh North Carolina, but live in West Virginia. I go to Doctor every four months.
    [This Message was Edited on 05/02/2003]
  6. ForeverFlaring

    ForeverFlaring New Member

    Is racing brain when you just cannot STOP thinking? I don't mean slowly absorbing thought, I mean my brain WILL NOT slow down.

    It's stupid stuff my brain thinks about too. You would think that as I lay in bed I would think about how my day went as I drift off, but oh no, I get weird crap running together like..."I wonder if Elvis is really alive, I need to repot those tomato plants tomorrow, I wish he would stop snoring, what is the price of tea in China?" I mean it will NOT stop! You would think after laying around all day I would have time to sort out how Elvis died...but has to come when I lay down in bed! (Like I really care if he is alive).

    Is that racing brain?
  7. Mikie

    Mikie Moderator

    Yes, what you describe is the racing brain symptoms. Klonopin is excellent at quieting this down.

    Love, Mikie
  8. ForeverFlaring

    ForeverFlaring New Member

    Thank you so much!

    I am seeing a new doctor on Tuesday and Klonipin is definately on my list of meds to ask for.
  9. vinetti23

    vinetti23 New Member

    I took Klonopin for about 4 yrs on and off. In the last 2 years I have also taken it with Neurontin. Here are a few points from my experience...and these may be unique to me but here goes:

    1. It is excellent for anxiety and prevention of panic attacks. Since I have had to fly about 80 times since 9/11 (and I'm clausterphobic...gotta love middle seats), klonopin has been very helpful. In turn, it is helpful for sleep since it reduces anxiety and quiets the mind.

    2. I don't believe it interferes with REM becasue I'm certain I dream during the night when I'm on it. However, whether or not it interferes with other parts of sleep I do not know.

    3. It is "long acting." It stays in your system much longer than vallium (which is in the same drug family). For me, this means I don't wake up 4 hours into the night wondering what just happened...I actually sleep through the night with few awakenings.

    4. In my experience, it has no effect on physical pain but it reduces the psychological pain associated with anxiety.

    5. It can slow down the racing thoughts that were described in a previous post. I think a higher dosage is needed to do that though. (I experience racing thoughts when I am sleep deprived generally, and I need to usually double the klonopin dosage and increase the neurontin to stop it).

    6. There is a lot of debate as to whether or not it is addictive so BE CAREFUL. I unfortunately have been on it nightly for 2 years with the dosage increasing from 0.25 to 1.25. I am not happy about that fact really because I don't feel it's always necessary to take - essentially, I'm not always nervous but I am chemically dependent on it so I HAVE to take it. When I lost my bottle once during a business trip, all hell broke loose...insomnia, confusion, panic, extreme anxiety, and paranoia occured within 36 hours of not taking my dosage. Had I not seen a doctor, I probably would've had seizures. The addiction medicine psychiatrist I saw said it would take a FULL YEAR to taper off (and I'm only on 1 mg and it's only been 2 years). Also, since I have anxiety issues, it would take me longer to taper off.

    It's really an anxiety drug, but since it works on (or potentiates) GABA, it raises the "threshold of activation" for the nervous system. Various theories about FMS claim that people with FMS have a threshold that is too low so we experience pain when we shouldn't. GABA is the neurotransmitter associated with inhibition of synaptic responses.
  10. Mikie

    Mikie Moderator

    Is an antiseizure/antispasmodic medication which is used for anxiety, among other things.

    It is not psychologically addictive, but one may form a physical dependence on it and must be carefully weaned off.

    Klonopin helps me to get quality sleep, awaking feeling refreshed and alert. I have found that by keeping a very small amount going during the daytime, it helps with alertness. I can also put 1/4 of a tablet under my tongue for sensory overload, racing brain, or anxiety, and it really helps. It also helps greatly with my tinnitus.

    There is some strong evidence, and a new study, which may suggest that Klonopin interrupts the pain signals in the brain and, therefore, has some pain killing properties. I believe it has helped with my pain along with the Guai.

    Some believe it can interfere with Stage IV Delta sleep, but since taking the Klonopin, my sleep is better than ever. Elavil is supposed to improve Stage IV sleep, but for me, it only made me sleepy and exhausted and groggy in the morning. It also cause a 20-pound weight gain. Same for Flexeril, which is a muscle relaxant in the same family as Elavil.

    Klonopin doesn't work for everyone, but for me, it has been a God send.

    Love, Mikie