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Thread: Chronic Intractable Insomnia...

  1. #1

    Default Chronic Intractable Insomnia...

    I'm not sure how active this board is, or how active Braintalk is anymore for that matter. It used to be very active when I first started coming here in 2002, that was a long time ago and for very different reasons.

    I started having issues with insomnia when I was in my late 20's, at that time I attributed it to stress and anxiety. I was given a small dose (.5 mg) of Ativan, problem solved, at least for a while. Unfortunately, I became involved with a doctor who's main goal was to seemingly amp patients up to very high doses of benzodiazepines. I was not aware at the time the dangers of this practice and became dependent on Klonopin and by 2010, I was taking over 4 mg a day, sometimes as much as 6. I use the word dependency and not addiction for a reason, I believe there is a big difference. I was using the drug to knock myself out at night as my insomnia seemed to get worse, he added Ambien into the mix :( This doctor also ascertained that I had ADD (at 32) and put me on Adderall, took myself off after 6 months :) In most cases, I do not put blame on doctors for someone becoming dependent or addicted to medications but when I look this guy up online, I see 15-20 other people with similar stories.

    Fast forward to today, I tried to go off benzos cold turkey in 2010 and had a horrible time, reinstated after 60 days of hell. I am currently taking .5 mg of Xanax for panic attacks (twice daily) and 1 mg of Klonopin for insomnia along with Remeron and Trazodone. Over the past 20-30 days, after a year (or so) of sleeping reasonably well, once again I have developed terrible insomnia. I will admit that I've doubled my dose of Klonopin on occasion to induce sleep, it hasn't work. I've added Xanax at bedtime per my doctors approval, it hasn't worked. I've also tried 100 mg of Trazodone, although it's helped a little, it often causes horrible sleep paralysis. More often than not, it takes a good 45-90 minutes to fall asleep and lately, I've been waking up after about 2 hours of sleep and been getting between 4-6 hours a night, not nearly enough for me. I refuse to take any more than 2 mg of either Klonopin or Xanax and if I combine the two, it's 1 mg of Klonopin and .5 mg of Xanax. I do not drink, smoke, take pain medication or use any other drugs including marijuana.

    When I went through benzo withdrawal in 2010, I literally went 45 days sleeping less than 30 minutes a night and became very ill, also worried at that time I had developed fatal insomnia or some other horrific neurological condition. During that period, I was on a myriad of antidepressant medications to induce sleep, none of them worked, in hindsight, I think they made it worse. Seems like benzos are the only thing that's ever worked and now they're failing me, so I'm frightened. I had a sleep study in early 2011 that was normal, no sleep apnea. Had a brain MRI for numbness and tingling a couple weeks ago that was normal, not sure if that matters or not but I figured I would mention this. Seems like only a few diseases have insomnia as a symptom and these conditions are relatively unpleasant to consider. I realize that there are diseases that cause insomnia like liver disease or chronic pain but I do not have these issues. The muscle pain I have is due to exertion and goes away when I lie down.

    May seem like this is a dependency issue and should be addressed somewhere else but my main problem is sleep, if I don't sleep I get very ill and can't function. Over the course of my 12+ years of insomnia, I've tried most of the antidepressants that make you drowsy. Ambien was not very effective and Restoril was useless to me. I could take 10 mg of Ambien tonight and stay up and watch television, it simply doesn't work.

    Does anyone else here have treatment resistant insomnia? Seems like a high dose of benzos or Ambien will knock anyone out, can't help but think that I may be suffering from a serious condition. Since I started having insomnia back in 2000, I've also developed some strange (undiagnosed) neurological problems like muscle twitching, weakness/fatigue, muscle pain and lightheadedness (not vertigo)

    Haven't come across too many people who've been sympathetic, including doctors. I started exercising again a couple weeks ago, walking about 2 miles a day at a brisk pace which is a lot for me, hasn't helped although it's improved my energy levels a bit. Will continue to do this as long as I am able. Only slept around 3 hours last night so please excuse any errors or if I failed to mention anything important. Thanks very much for reading my rant and any feedback or insight would be appreciated.

  2. #2
    Distinguished Community Member
    Join Date
    Oct 2006
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    that is horrible is all I can think to say. yes sadly there are doctors like that. I have had one myself and it took awhile for me to realize just how dangerous a person he was. I am lucky that I now have a good doctor. unlucky that I have developed resistance to antibiotics but that is no fault of any doctor, just my bad luck.

    I hope something works for you. please keep us updated on what does or does not work. good luck.

  3. #3

    Default

    I wonder if you're still here? And if you're still having sleep problems.

    You've mentioned several medications, but not melatonin. It may be a long shot, but it can't hurt to try. Melatonin is a hormone, unavailable in some countries, prescription-only in others, but in the USA (and Canada, I think) it is over-the-counter. That's because the FDA calls it a "dietary supplement". (Which is ridiculous, but that's the way it is.)

    Melatonin is produced in the pineal gland in the brain. It's not present in the daytime. It starts circulating in the blood about two hours before you are sleepy enough to fall asleep, most robustly in dim light or darkness. Strangely there's a forty-fold difference it how much of it adults produce through a night.

    Melatonin is mostly advised for disturbances or disorders of one's circadian rhythms, but it is also tried for other problems sleeping, also in children. It used to be extracted from cows' brains, but now I believe that only the synthetic form is available. It seems to be safe and it doesn't cause dependence. It's available as timed-release or not. It's available as tablets to swallow, tablets to melt under the tongue, as capsules and in liquid form. I prefer the liquid as it makes it easy to experiment with dosages.

    Side effects: some people report grogginess, headache or nausea in the morning.

    I have a circadian rhythm disorder. I started, on my sleep specialist's advice, with 3 mg, one hour before bed. Experimenting with both timing and dosage, I landed on 0.5 mg, an hour and a quarter before bed as the most effective for me.

    Worth considering?

  4. #4

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    Quote Originally Posted by Arna View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Experimenting with both timing and dosage, I landed on 0.5 mg, an hour and a quarter before bed as the most effective for me.

    Worth considering?
    Your dose and timing are pretty close to what my sleep neuro recommends as well. I am glad that it is working for you.
    “The revolutionary act of treating ourselves tenderly can begin to undo the aversive messages of a lifetime.”
    ~ Tara Brach, “Radical Acceptance”

  5. #5

    Default

    Then your sleep neuro is quite up-to-date, lucky you. I don't think there are too many of them out there, unfortunately.

  6. #6

    Default

    hi everybody, i am new to this discussion and i was affected by chronic insomnia for past 1 year..is there any solution to get rid from that??

  7. #7

    Default Mataboo, I have suffered with intractable,chronic insomnia for over 43 yrs zero works

    Quote Originally Posted by Matuboo View Post
    This quote is hidden because you are ignoring this member. Show Quote
    I'm not sure how active this board is, or how active Braintalk is anymore for that matter. It used to be very active when I first started coming here in 2002, that was a long time ago and for very different reasons.

    I started having issues with insomnia when I was in my late 20's, at that time I attributed it to stress and anxiety. I was given a small dose (.5 mg) of Ativan, problem solved, at least for a while. Unfortunately, I became involved with a doctor who's main goal was to seemingly amp patients up to very high doses of benzodiazepines. I was not aware at the time the dangers of this practice and became dependent on Klonopin and by 2010, I was taking over 4 mg a day, sometimes as much as 6. I use the word dependency and not addiction for a reason, I believe there is a big difference. I was using the drug to knock myself out at night as my insomnia seemed to get worse, he added Ambien into the mix :( This doctor also ascertained that I had ADD (at 32) and put me on Adderall, took myself off after 6 months :) In most cases, I do not put blame on doctors for someone becoming dependent or addicted to medications but when I look this guy up online, I see 15-20 other people with similar stories.

    Fast forward to today, I tried to go off benzos cold turkey in 2010 and had a horrible time, reinstated after 60 days of hell. I am currently taking .5 mg of Xanax for panic attacks (twice daily) and 1 mg of Klonopin for insomnia along with Remeron and Trazodone. Over the past 20-30 days, after a year (or so) of sleeping reasonably well, once again I have developed terrible insomnia. I will admit that I've doubled my dose of Klonopin on occasion to induce sleep, it hasn't work. I've added Xanax at bedtime per my doctors approval, it hasn't worked. I've also tried 100 mg of Trazodone, although it's helped a little, it often causes horrible sleep paralysis. More often than not, it takes a good 45-90 minutes to fall asleep and lately, I've been waking up after about 2 hours of sleep and been getting between 4-6 hours a night, not nearly enough for me. I refuse to take any more than 2 mg of either Klonopin or Xanax and if I combine the two, it's 1 mg of Klonopin and .5 mg of Xanax. I do not drink, smoke, take pain medication or use any other drugs including marijuana.

    When I went through benzo withdrawal in 2010, I literally went 45 days sleeping less than 30 minutes a night and became very ill, also worried at that time I had developed fatal insomnia or some other horrific neurological condition. During that period, I was on a myriad of antidepressant medications to induce sleep, none of them worked, in hindsight, I think they made it worse. Seems like benzos are the only thing that's ever worked and now they're failing me, so I'm frightened. I had a sleep study in early 2011 that was normal, no sleep apnea. Had a brain MRI for numbness and tingling a couple weeks ago that was normal, not sure if that matters or not but I figured I would mention this. Seems like only a few diseases have insomnia as a symptom and these conditions are relatively unpleasant to consider. I realize that there are diseases that cause insomnia like liver disease or chronic pain but I do not have these issues. The muscle pain I have is due to exertion and goes away when I lie down.

    May seem like this is a dependency issue and should be addressed somewhere else but my main problem is sleep, if I don't sleep I get very ill and can't function. Over the course of my 12+ years of insomnia, I've tried most of the antidepressants that make you drowsy. Ambien was not very effective and Restoril was useless to me. I could take 10 mg of Ambien tonight and stay up and watch television, it simply doesn't work.

    Does anyone else here have treatment resistant insomnia? Seems like a high dose of benzos or Ambien will knock anyone out, can't help but think that I may be suffering from a serious condition. Since I started having insomnia back in 2000, I've also developed some strange (undiagnosed) neurological problems like muscle twitching, weakness/fatigue, muscle pain and lightheadedness (not vertigo)

    Haven't come across too many people who've been sympathetic, including doctors. I started exercising again a couple weeks ago, walking about 2 miles a day at a brisk pace which is a lot for me, hasn't helped although it's improved my energy levels a bit. Will continue to do this as long as I am able. Only slept around 3 hours last night so please excuse any errors or if I failed to mention anything important. Thanks very much for reading my rant and any feedback or insight would be appreciated.
    Mataboo, I was in tears when I read your experience with chronic insomnia as my situation is as bad, if not worse. I have suffered with intractable, refractory to treatment, chronic insomnia. I never sleep at night. Cant sleep in the day, nor afternoon. I have been ill pretty much all my life due to the insomnia. Doctors cant seem to figure out what is wrong with my brain. My brain literally feels like it is imprisoned by SOMETHING ...feels like it is walled off from the signals that make the brain sleep. I have been given every sleeping pill known, each one causing terrible side effects which worsen the insomnia. My life has been destroyed. I lost my career in medicine because I could not sleep at night, as a result, I could not study, focus or think clearly. Had severe anxiety and nervousness because of the insomnia, I can go on and on. I cant hold a job because I cannot function during the day. I have severe chronic headaches in specific parts of my brain ..the occipital bone and area are always in seering pain. My right eyeball is always in pain..and it stings all the way back to the occipatal bone. The doctors are very unsympathetic and often dismiss my complaints as depression or exaggeration, yet my life is completely ruined by insomnia and no one seems to be able to help me. I have tried all sorts of homeopathic remedies, including all doses of melationin...nothing works!!! I tried the worst option 3x, but failed...I guess God still wants me on this earth to suffer with this aweful problem. Those who sleep have no idea how horrible this situation is. My life is useless, I lost everything because of this!

  8. #8

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    See my comment above (01-10-2014, 08:44 PM). All still true.

    While melatonin may be of help with primary insomnia, it is, as I said, most helpful for people with circadian rhythm disorders (CRDs). I'd like to add that CRDs, in almost all cases, appear first in childhood or in adolescence. Sleep problems that begin after the age of 20 or so, are probably not CRDs. Also, if a CRD is what you have, "sleeping pills" may knock you out but they won't have any effect on the underlying problem.

    Doctors calling themselves "sleep specialists" know about apnea, restless legs and maybe hypersomnia and narcolepsy. If you think you have a CRD, you will probably have to search wide and long to find a physician capable of diagnosing it. There are some suggested treatments; there is no cure. The formal diagnosis is, however, not worthless. It will (or should) help you get accommodations at school or work and also help you explain your condition to family and friends.

  9. #9

    Default

    Hello, I just read your post about having trouble with insomnia. I'm really sorry that you are having the problems you are having. Have you had problems with insomnia since your childhood? Perhaps it is idiopathic insomnia. Although I haven't suffered as long as you have, I have been having the same symptoms for the past 5 months. I too feel as if the sleep signal in my brain has stopped and it is scaring me. I cannot even take naps during the day which I miss dearly.

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