1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

Insomnia

Discussion in 'Sleep' started by Crappy, Jan 18, 2011.

  1. Crappy

    Crappy Senior Member

    Messages:
    110
    Likes:
    9
    TX
    If a thread exists that already covers the subject of Insomnia, someone please tell me where to go?:Retro smile:

    My main symptom is Insomnia.

    My symptoms came on very gradually over a number of years. I have had a number of diagnoses, and have endured many treatments for the condition. Including, antidepressants, Parkinsons medication, Ambien, Xyrem, Lunesta, and every benzodiazepine in existence.

    As the fall out of Michael Jacksons death escalated my doctor refused to continue my Halcion (Triazolam), one of the few medications that actually worked for me. I had to go under medical supervision to safely manage removal. I strongly advise against this experience.

    Experiencing with drawl while having CFS is a horrific experience, but worst of all I have no effective remedy anymore, and after four months I still havent recovered.

    I am wondering about others observations and experiences, maybe the discussion would help others too.

    I read references CFS familiar doctors make that treating the underlying immune disorder will restore sleep patterns; I am wondering if anyone here has experienced that recovery?

    Severe Insomnia should be avoided, it leads to hallucinations; and then the butterfly bus comes.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,246
    Likes:
    4,570
    australia (brisbane)
    oh i have plenty of threads on insomnia, lol. My method isnt perfect as at the moment going through a whacky sleep period but, dont use 1 sleep med every night till it stops working, have a few up your sleeve and rotate between them evry night, have a few nights benzo free where u use something else like maybe seroquel or a sedating antidepressant or antihistamine like phenergan or atarax. Also anticonvulsants can help eg lyrica, neurontin, but i find these not that good on their own but improve sleep quality when used with another sleep med, baclofen i use the same way. Try visiting past meds that have stopped working for u as they might work again after having a break from them.

    I havent used triazolam but from what i have read it has a very short half life, did it help u sleep through the night or did u use it with something else to keep u asleep. Triazolam is still available in australia i think.

    cheers!!!
  3. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    405
    Upstate SC, USA
    heapsreal - We keep showing up on the same threads, so you can definitely tell we have a lot of the same symptoms. I'm currently using a low dose of Xyrem with a low dose of Ambien and I can get about 6 - 7 hours of sleep. I have tried just about the same things you have Crappy, except for the Triazolam. I slept pretty good on Klonopin and Lyrica, but my prescription for Klonopin ran out and I couldn't afford to go back to the doctor that prescribed it. You have to do whatever you can to get sleep because there will be a whole new set of problems to deal with.
  4. paclabman

    paclabman

    Messages:
    57
    Likes:
    2
    Seattle area
    Which version of insomnia do you have? Can't get to sleep, can't stay asleep, or going in and out of sleep?

    I never had much trouble getting to sleep. I would sleep 4 - 5 hrs a night and wake up - and couldn't go back to sleep. That went on for a couple of years. I would sometimes take a generic ambien when i would wake up to get an extra 1 or 1 1/2 hr of sleep.

    I assume you've had a sleep study to rule out sleep apnea or identify not getting into the deeper stages of sleep?

    Could be coincidence but since I've been pacing better with my heart rate monitor - and stopped my daily 25 min walk - I've been sleeping better.

    I read other threads where people talk about do they sleep 9 hrs or 12 hrs a night, and think, "what a strange illness".
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,246
    Likes:
    4,570
    australia (brisbane)
    I have all versions of insomnia, lol. mainly just cant fall asleep, if i do its very light crappy sleep that may last a couple of hours. I have done a sleep study and it showed i had little stage 3/4 sleep, but i think alot of these sleep study clinics are only interested in sleep apnea. Some meds(seroquel, doxepine, avanza) i am finding are giving me like a total body restless leg syndrome or just increasing aches and pains when i use them, they help me sleep but those last few hours of sleep are disrupted by aches and pains which then last all day. When i read about restless legs it just says an urge to move legs but i get pain or a deep to the bone ach in my legs and now i get it all through my body. The above meds are known to cause RLS so maybe related. Im starting to find that benzos are the only thing i can really use with the lyrica, i did have a small supply of trazodone and read it was rls friendly and it help me with sleep so will need to order it, but cant get it in australia so will order it from over seas. I would really like to try klonopin as so many cfsers have found it helped, so will have to talk my doc into it. Do others find klonopin very different to valium??
  6. Crappy

    Crappy Senior Member

    Messages:
    110
    Likes:
    9
    TX
    heapsreal, it is eerie how similar our conditions are.

    pacmanlab short answer is, yea. Go to sleep, stay asleep. It started as Periodic Limb Movement, and the problem just mushroomed out of control.
    I use Doxepin and Lunesta right now, but like heapsreal I experience serious discomfort induced by Lunesta, I thought I was just crazy. It helps to hear someone else has a similar problem. Benzos are the most helpful, unfortunately no doctor around me understands the neuroprotective effects. U.S. medicine is getting more and more paranoid.

    Maybe the answer is to go to Mexico and buy a satchel of benzos and RIP.

    All input is appreciated.
  7. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    405
    Upstate SC, USA
    I think Klonopin is less sedating, than valium, in general and it has a longer half-life. I don't take Klonopin anymore, but I used to take .5mg in the morning and not have any problem functioning during the day and would take 1 mg. at bedtime and sleep pretty well. If I took 5 mg of Valium I would talking with a slur and nodding off and with 10 mg I'm completely knocked out, but for maybe 3 -4 hours at most. Valium affects me more like Xanax than Klonopin. I also did not have any problem stopping the Klonopin as i weaned doen to .25 mg. at bedtime for 1 -2 weeks and then stopped. I may have taken some L-Theanine for a few weeks afterwards, but I can't remember for sure.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,246
    Likes:
    4,570
    australia (brisbane)
    I use valium at 10mg dosage and yes it works for 3-4 hours so i usually take it with something else to keep me asleep like doxepin etc. I use the valium maybe 2-3 nights a week, the other nights i use zopiclone and i try to have a few benzo free nights a week but meds that work without causing aches and pains is limiting me at the moment. Maybe i would need 1-2mg of klonopin for sleep, will have to check a convertion chart. I suppose if klonopin is used as an anticonvulsant at .5mg dose they wouldnt want it to be to sedating as they would want people to be able to function. Its interesting how we all react differently to benzos , i have also read that temazepam is suppose to be the most sedating benzo but it doesnt do much for me, i suppose its just trial and error like everything else in cfs.
    Crappy, mexico is to far away from me, but maybe an option for u. Docs in australia will prescribe most benzos but seem to be abit funny about klonopin.
  9. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    54
    I keep trying to figure out, is the sleep disorder causing the Immune Dysfunction, or is the Immune Dysfunction causing the sleep disorder. I think it is the later. I only hope that when we find a way to fix the immune dysfunction, the sleep disorder will improve. It is also so bizarre that some people can sleep with ME/CFS or sleep too much and others can't sleep, WTF?! But either way there is NO other disease where the sleep will be 100% unrefreshing-like being beaten up and tortured in your sleep. And I think there is more to it than just not getting stage 3/4 sleep, I think our immune systems turn on during sleep and cytokines elevated, etc. maybe our bodies are fighting our pathogens while we sleep.
  10. Crappy

    Crappy Senior Member

    Messages:
    110
    Likes:
    9
    TX
    Viola, thats what keeps haunting me. It's like my immune system keeps tapping me on the shoulder ALL THE TIME. As if to say, "wake up, I need some help here, FIRE, FIRE"; but I don't know what to do for it. The best I can hope for is to sedate myself enough, so I don't care about the alarms going off.
    I have noticed in glimpses, Cheney and de Meirleir both referring to immune repair leading to restorative sleep again; but I really don't know more than that.
    I had a psychiatrist tell me actually dying of sleep deprivation is rare, I felt like slapping him to see if he was awake! Havard, Mayo, any credible research shows more people dying from accidents caused by sleep deprivation than by alcohol. I don't think he was thinking about accidents, but just dying from being awake; what bothers me is the ignorance of relying on that assumption. He obviously wouldn't know it if he saw it.

    I have had examples pointed out to me like, battlefields of WWI, that people contracted infections that left them unable to sleep and they were all dead in two weeks. Also, most people have heard of sleeping sickness. It has some similarities to this infection, some people just go to sleep and never wake up, and other never go to sleep, they just die from exhaustion.

    I don't know, I'm to tired to think.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,246
    Likes:
    4,570
    australia (brisbane)
    i think u might be right, elevated cytokines etc can cause the sleep problems but i also think that sometimes the infection damages the hypothalamus and our sleep. My cd lymphocytes are whacky as well and they came down to almost normal after 12 months of famvir but sleep was still an issue. I feel like for me its going to be an everlasting symptom. If i can get my lymphocytes down to normal and my hormones all sorted im might try and taper off all sleep meds and see how i go, see if i can sleep normally again, scary thinking about it.
  12. LazyLizard

    LazyLizard 11yrs with ME

    Messages:
    31
    Likes:
    5
    Melbourne
    Exactly my thoughts, Moon!
    I reckon when the immune issues are fixed sleep will improve.

    But I can't help trying to fix my sleep anyway so here's my med collection:
    Clonazepam (Klonopin) .5mg works best and such a nice feel. (which is why it is controlled)
    Aussie doctors are pretty reluctant to prescribe it. One doc I asked once or twice looked at me
    like I'm a junkie.
    But I have an aversion to taking the same med every night and so take it only every few
    nights.
    Temazepam is good but not as effective and misses it's effect completely some nights
    as I would realize around 4am.
    Histamin-based ones or Amitriptylene (5mg) work well but make me drowsy for up to 24hrs.
    They are good if you want to chill out on a weekend (zombie weekends).

    Here's another aspect of my insomnia:
    If I happen to sleep in the afternoon for more than 30mins (i.e. deep sleep)
    I WON'T (WILL ABSOLUTELY NOT) be able to wake up properly for 4-5hrs. I would sit like
    a confused, paralysed, mind-anesthesized brain zombie until evening and will
    not be able to sleep that night. (unless I take heavy pills)

    ... and something else: Caffeine.
    It can have different effects on me. One possibility is that I spark up in
    a good way and cognitive functions are ok for a few hours but on other occasions
    it just makes me jittery and keeps my up all night even though I had that cup
    of tea in the morning.
  13. Carrigon

    Carrigon Senior Member

    Messages:
    805
    Likes:
    72
    PA, USA
    I've been up all night again. Partly because I injured my back and should be taking the muscle relaxant and a pain killer and I've been stubbornly refusing because the muscle relaxant puts me down for two days. But I've been getting insomnia quite alot lately. My hours are all messed up. I hate insomnia. It always feels like the entire world can sleep, but you.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,246
    Likes:
    4,570
    australia (brisbane)
    Why is it aussie docs are funny about clonazepam but US docs dish it out no worries but then apparently they are funny about valium. I havent used clonazepam and will be asking my doc tomorrow about it, im starting to get a tolerance to valium and i use it 2-3 times a week and will do the same for clonazepam. I think the meaning of ME which is inflammation of the brain and spinal cord and muscles is caused by what ever viruses are effecting us and this inflammation is upseting our sleep. Maybe i should stick my head in a bucket of ice to reduce the inflammation, lol.
  15. Marg

    Marg Senior Member

    Messages:
    343
    Likes:
    53
    Wetumpka Alabama
    My doctor once told me that Klonopin and Ativan were just about the same thing. I think Valium would be in that class too. Ativan is the only drug I can take that helps with just about everything and I do not need much. My bottle reads 1-3 mg per day as needed. I have stopped it without any problem, have not had to increase the dose and I have been using it of and on for years. I take Ambien to get me to sleep. I also take LDN and Imunovir and those are the only drugs. I am not able to take many things. I recently tried Elavil again and I could not tolerate it. I took that for years..1/4 tablet and it was great and now cannot. I am wondering if it is becasue they give me the generic form. I cannot take the generic for Ambien. I took it in the FM years before I lapped over into CFS or ME or whatever we are calling it. I took Klonopin when I was very sick in the 90's but I do not remember much about it. I would take 2 or three things at very low doses to try and find what would work. Nothing really did the job. I tried Flexeril again and the same thing..1/4 tablet had me in a zombie mode for two days. So 1/2 Ambien and the lowest dose 1 mg Ativan works quite well for me and there are some times that it does not work but not very often. It does not work when the moon is full. LOL Melatonin kept me awake..so many things work backwards.
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,246
    Likes:
    4,570
    australia (brisbane)
    my doc said no to the klonopin but gave me mogadon instead which is also a benzo, he really didnt want to give me klonopin, maybe he has had too many patients have problems with it. he has written scripts for valium before with no problems, he says that valium is the safest of the benzos for some reason but he does prefer the z drug for chronic insomniacs like zopiclone and zolpidem. I normally rotate valium with zopiclone but have changed to zolpidem as i was getting a tolernce to zopi. i used zolpidem a few years ago and it worked well for about 2 years and then just stopped working, i was using it no more then every second day. hopefully it works for me again, gee i hope it does. options are quite limited as i have been getting alot of pain from the sedating antidepressants etc
  17. LazyLizard

    LazyLizard 11yrs with ME

    Messages:
    31
    Likes:
    5
    Melbourne
    They always seem to have something they think is the best. But it's usually
    not what's on your shopping list and if you insist you're junkie.

    I forgot to mention that I tried melantonin some time ago with some success but haven't reordered it because it's expensive and expires
    soonish.
    Also it seems to help me to find sleep if I have a heavy (meat)meal late.
    It makes me feel heavy. ...but puts on the pounds :(

    5am. Sigh!
  18. OverTheHills

    OverTheHills

    Messages:
    303
    Likes:
    257
    New Zealand
    Sleep, don't talk to me about sleep (paraphrased quote)

    Zopiclone used to be excellent for me too, but I find now, two years later I have become much more sensitive to it (need half the dose) and I get a long hangover now which makes it nearly useless. I am concerned this means my liver is functioning worse than it used to. :Retro mad::sleepy:

    I am getting close to the bottom of the barrel after years of unsuccessfully trying sleep meds - the antidepressants seem to make me really depressed/irritable/spaced out, antihistamines (inc those for allergy and travel sickness) now make me feel ill/hangover/drugged, and benzos either no effect or loooong hangover. :sleepy::sleepy:

    Sleep is one of my worst problems too, my OI (which I didn't even really know I had since I don't get dizzy or faint just weak and confused) is quite treatable by comparison.

    OTH:sleepy::sleepy:
  19. Crappy

    Crappy Senior Member

    Messages:
    110
    Likes:
    9
    TX
    I posted this in another thread:

    The message from the medical community use to be,"tell us your symptoms, and we will treat accordingly". The One to Ten pain scale.
    "If you can't sleep we will find something to help you sleep."

    Now the message seems to be, "the hell with you, I don't want prosecutors coming after me".

    "I don't care a flying flip about your symptoms, all I'm willing to do is, act like I'm going to help you. You can't have; what I don't understand!"
  20. glenp

    glenp "and this too shall pass"

    Messages:
    753
    Likes:
    16
    Vancouver Canada suburbs
    xyrem

    Xyrem - Has anyone experience with it. I have a friend whose hubby has been taking it for 4 years. Anyone else on it?

    glen

See more popular forum discussions.

Share This Page