amt of sleep getting really scary

Discussion in 'Fibromyalgia Main Forum' started by AuntTammie, Jun 27, 2010.

  1. AuntTammie

    AuntTammie New Member

    My sleep has long been messed up, but lately it is getting super crazy.......I was typically spending 10 - 14 hours in bed, but sleeping extremely lightly - waking up every 45 minutes or so to use the bathroom, having tons of nightmares, never waking refreshed at all, etc....also was never able to go to sleep before 3 AM and often much later

    then I was having a night and day and night where I slept at least 30 hours straight - still not super deep sleep, but somewhat more so than other nights....that was happening about once every 6 weeks, then it changed to once a month, and then for a while it was once every other week.....then I even wound up having a time where I slept 58 hours (yes 58!) straight....really not fun; very disorienting and I wake up feeling extra sick after sleep like that

    well, now things have become even less predictable.....sometimes I sleep a lot, sometimes not much at all, sometimes I can't fall asleep until really late, other times I fall asleep early and wake up super early....while it is truly wonderful to actually be awake in the morning again on occasion, it usually does not result in functioning in the morning; just not being asleep....and having my schedule this unpredictable makes it impossible to plan anything....was hard enough before, but at least then I knew that sometime around 6 or 7 PM I would have a few functional hours (if it was a "good" day) I am having almost no functional hours and no way of predicting at all when they might be

    and DURING THE PAST WEEK I WAS ONLY AWAKE 2 1/2 days total.......this REALLY stinks

    I am so tired and dizzy and just generally feeling so horrible and even my so-called functioning is barely that.....can't think straight, can't see straight, etc, is just this crazy sleep thing, then struggle to the grocery store, then crazy sleep thing, then struggle to do laundry (& then get sicker from the residue from other people's detergent....spending hours with my face pressed upon a pillow case with fragrance from other people's detergent has been making me stop breathing fairly often), then more crazy sleep, then struggle to the store again, etc.....

    & yes I have tried pretty much everything out there to try to fix the sleep thing.....nothing helps

  2. Juloo

    Juloo Member

    I would be really miserable under those conditions. You need a serious, serious sleep doctor. Can you get your pcp to recommend you?
  3. u&iraok

    u&iraok New Member

    I'm sorry you're having such a hard time. I know with CFS our sleep is like that of an old person--we don't go into deep sleep very often so we don't get the good rest we need, we go often into REM instead of the deeper stages of sleep and dream a lot and wake a lot.

    My sleep has gotten better since I first got CFS but I still have the same problems as you, though not as bad. I know I don't go into deep sleep, I wake several times and can't go back to sleep unless I get up and go to the bathroom (which actually probably helps keep my muscles from getting too tight, stretching them out a little--if I sleep too long a stretch my stiff muscles wake me up!), I have weird stressful dreams, I toss and turn and talk in my sleep and often wake irritable and stressed.

    It makes you dread going to bed and that makes it worse.

    I've found ways to help it a little but you say you've tried everything? Maybe a sleep specialist would help as suggested by Juloo.
  4. glenda2

    glenda2 New Member

    sorry i have no advise i just thought i would tell you it sounds like you were writing the post about me....i do the same thing..
  5. TigerLilea

    TigerLilea Active Member

    I would definitely get your doctor to send you for some tests and a sleep evaluation. Something isn't right and it makes me wonder if there is more going on that just you having CFS. Sleeping 30 to 58 hours isn't normal, especially for someone with CFS.
  6. stschn

    stschn New Member

    for the first 3 1/2 years with this illness. No sleep doctor was a help one even told me I couldn't possible sleep that many hours. He came up with RLS and the pills he gave me wired me. It's been 24 years now and some times I could not sleep until I got on Klonapin and doxapin. Today I've fallen a sleep and slept most of the day. It has something to so with the virus in the brain and is much worse when I'm under emotional stress or have simply over done.
  7. AuntTammie

    AuntTammie New Member

    thanks for all the responses.....too tired (!) to respond well rt now, but I did read them and appreciate them

    and TigerLilea, I do have several diagnoses in addition to ME/CFS, and it wouldn't surprise me to find something more.......but I have actually heard of/read about quite a few ME/CFS patients who do sleep a ton.....I know that not sleeping is more common, but hypersomnia is also actually even included in the Canadian definition
  8. pacotaco

    pacotaco New Member

    Hi Aunt Tammie,it has beenso long since i have been here but I never forget the people who i have bonded with an sorry your doing so bad..i have insomnia constantly an like 2-3 days at a time,nightmares,trubld sleep,light /heavy slep it changes all the timme,then i sleep an try to wakr up an cant,all types of things an I cant fix it,sleeping aids prescribed good, I am sorry I cant help you other than saying there is a tea i drink that relaxes me so i dont feel so bad,it is called Arnica really is good,not like caffiene tea,it is a good natural healthy tea from a market...i will pray for you as I do everyone but I feel for you an wish so much that I cud help u as you hve done me in the past....much love n hugs to you an i hope it will get better in time...
  9. AuntTammie

    AuntTammie New Member

    good to "see" you.....have wondered how you are

    sorry that you struggle with sleep, too.....thanks for the suggestion, though, and the prayers, love, and hugs - they really do mean a lot to me, and I'm sending some back to you, too
  10. gapsych

    gapsych New Member

    I could have written your post. My tiredness was getting so bad over the last six months that there were times I wondered if I was dying. I would lie in bed somewhere between sleep and awake for hours. I actually slept 22 hours several times. I had a sleep study about two months ago. It turns out that I have Obstructive Sleep Apnea. I was waking up because of not breathing for at least 10 seconds 51 times an hour. I had no idea and usually people don't. The reason you wake up is because you oxygen level goes down and once it gets down far enough, your brain wakes you up to breath.

    I am on a CPAP and let me tell you it has been wonderful. It's taken some time to see results but I am getting there. I have started to dream again and go into restorative sleep for probably the first time in about eight years.

    Do you snore? There are some myths about sleep apnea. While being heavy can be a risk factor, not everyone who has OSA is overweight. In fact it may be the other way around. SA can mess up your hormones, etc. etc. etc. A very small percentage don't even snore. It really has more to do with your mouth and airway passage. My dentist has told me for years how small my mouth is and how hard it is to work on my teeth.

    Between the ages of 40-50 the muscles in the throat start getting lax as we age. This can cause the obstruction as well as things like a deviated septum, structural anomalies.

    Sometimes a patient may just need a dental appliance. Sometimes surgery will help.

    I have had no problems with the CPAP, which I have found to be amazing. I don't have a mask per se but what is called pap pillows which fit over your nostrils and when you turn on the machine it creates a vacuum. They don't even go in your nose. The machine is whisper quiet. and not like the ones of the past.

    But I may be getting ahead of myself here. Have you ever had a sleep study? The last one I had was about 8-10 years ago and I was found to have very little REM and slow wave sleep. It was about a year after that when I started snoring. I also have RLS which is pretty much taken care of by clonazepam, the generic for Klonopin. At the time they thought I "might" have narcolepsy but it was borderline.

    If you see a sleep doctor make sure he/she is certified by the American Academy of Sleep Medicine.

    At the first visit the doctor said I probably had OSA. I would have bet money that I did not have it. I have no recollection of the apnea. No wonder Most people don't and it is usually a bed partner who notices it first. When you live alone, you have no way of knowing.

    If you go to you will find a lot of information. is the forum and is the society. Either will give you information. For sleep in general, I recommend

    Do this ASAP. I was attributing the worsening of my exhaustion to the FM.

    One more thing and I will sign off. I still have the fibromyalgia but the lack of sleep was causing the pain as well as the fatigue to sky rocket. This weekend was the first really big flare since being stabilized on the CPAP and I was down for a day and a half. I know that if I had not been on the CPAP, it could have been 3-5 days. I sometimes still wake up and not be myself but as the day gets later I am feeling better.

    I hope this makes sense as I am very tired. I would get some information from the above sites. There was also a blurb on a morning show on Lifetime. I don't get lifetime but I do have the site for the show. I have not seen it yet and as soon as I do I will post it. It is supposed to talk specifically about women with this disorder.

    I feel like I have written a novel. I was going to update my status anyway, so I may post part of this as a thread.

    Feel free to ask questions. I am too tired to proofread but wanted to let you know about this ASAP.

    Take care.

    ETA This is the short version!!

    Here is the video about OSA and women. I have not seen it yet.
    [This Message was Edited on 06/28/2010]
  11. AuntTammie

    AuntTammie New Member

    caledonia, I replied to you on PR

    gap, I very much appreciate that you took the time to write all that ....I do know that I don't have sleep apnea,

    I had a bunch of things inc sleep studied several yrs ago during a three day/night stay at the hospital; could probably stand to have another one, but several reasons why it probably wouldn't help much rt now

    (inc that I can no longer sleep at all out of my own bed, away from fan, complete darkness, temp control, etc, and adding the electrode things wouldn't help either.....and until the last month or so, I was not falling asleep at all until nearly morning, so the study would have been over before I even got to sleep.....also I have tried nearly every possible solution except the cpap, so even if they did clearly diagnose something else, there isn't really anything new they could do about it, and I am also not sure if medicare would cover it)
  12. mbofov

    mbofov Active Member

    Wow - that sounds horrendous - I can't imagine sleep difficulties that severe.

    There was someone else on this board who ended up being diagnosed with sleep apnea, much to their surprise, and the CPAP machine helped them tremendously.

    I know you say you don't have sleep apnea, but your last study was several years ago. Could you just skip the sleep study and try a CPAP machine for the heck of it? (rent one perhaps?) Look at what it did for gap. What could it hurt to try?

  13. matieofleaves803

    matieofleaves803 New Member

    I've had this thing forever, but when it really started getting bad, I was awake for 5 years.
    Eventually, I found Doxipin and klonopin, and I also use melotonin. I don't care anymore what they may or may not do to you. I just want to sleep!
    The doxipin was so intense at first, I swore I would neve take it, again, but I took the capsules apart and put them back again with less powder in them. I soon became used to it and I take a lot, now. For me, they cause water retention and weight gain, but then, everything does.
    Be aware that konapin is very addictive! I've been addicted to it several times, and now I use it sparingly. But, if I were in your place, I would jump right in! You are living in Hell.
    Bless You.
  14. gapsych

    gapsych New Member

    Glad to see you have had a sleep test. You have to rule things out and it can be difficult when there are so many overlapping symptoms.

    I wish I had more advice but I don't.

    One other thing is since CPAP has been around for a while most insurance, don't know about medicaid though, will cover the CPAP. I learned this from the video I mentioned.

    I hope you get to the bottom of this and soon.

    Take care.

  15. AuntTammie

    AuntTammie New Member

    two problems with trying the is that I don't think medicare will cover it, esp if I don't go thru a sleep study that shows that I have sleep apnea, and two I think (could be wrong about this one, though) that you have to sleep on your back to use it and I have never in my whole life been able to sleep on my back

    otherwise you are rt, I certainly have nothing to lose with trying one
  16. AuntTammie

    AuntTammie New Member

    5 yrs - ugh - that really stinks....glad that you have found something that helps you

    I have tried pretty much every possible med/supplement/sleep hygiene thing/light box/massage, etc - everything possible except a cpap machine

    klonopin and seroquel were among the two worst experiences I have ever had with meds.....even worse than the hell I am currently in

    ETA I know you didn't mention seroquel - someone else did on PR....just saying that in case someone suggests it here[This Message was Edited on 06/30/2010]
  17. AuntTammie

    AuntTammie New Member

    haven't had a chacne to watch the video - will have to do so soon.....good to know that ins will cover it, though I am not sure about medicare/medicaid.....pretty positive they won't cover it w/o getting diagnosed with sleep apnea first anyway....not sure if they would cover another sleep study either....will have to look into it further
  18. gapsych

    gapsych New Member

    You're right. You have to have a prescription to get the machine. It has to be on a setting based on the sleep study.

    This may not even be what is causing your exhaustion. But worth it to throw it out there.

    Take care.

  19. matieofleaves803

    matieofleaves803 New Member

    I forgot to mention Trazadone. I don't like taking all those meds. They interfer with my dreams, but then, so does being awake!
  20. AuntTammie

    AuntTammie New Member

    I have tried that too.....low doses did not put me to sleep, just made me more tired....higher doses did put me to sleep but left me exhausted and out of it the next day or two...end result being still better not taking the med
  21. tigerlily787

    tigerlily787 New Member

    There are a couple things that sound like what I went through, and one is being asleep for many, many, many hours.
    The other is going to the bathroom every 45 minutes.
    The question is, did a doctor say anything was wrong? I went through testing with few answers when similar occurrences happened to me, which was disgruntling.

    I found that a product with the powdered dried juice of barley REALLY helped bring me from sleeping most of the time and nearly nonfunctional when awake, to normal sleeping hours and some energy. Since we might not be able to mention product names and I am fearful for you, this is what I can do: search AIM green powder in google. You don't have to put quotes around that phrase when googling it.

    As to the going to the bathroom every 45 minutes, many things can cause that. Can you get a hold of some parsley? I found that eating a lot of parsley really, really caused my bladder to hold longer and hydrate my body effectively. Note to yourself whether the urine is nearly clear or if it is yellow. This was important in my recovery.