Has our ability to sleep been destroyed?

[TheMoonIsBlue]

I hope the title of my thread was indeed dramatic and not indeed fact, but this is one of my MAJOR concerns/fears.

Ever since I developed M.E./CFS post-mono, my sleep has just been destroyed in every was possible. Before CFS, I did have delayed sleep phase (not all the time, I could sort of control it sometimes) and A LOT of trouble actually falling asleep.

Now?

Sleep without medication? What is that? I think I have taken maybe 4- yes 4- naps since I became ill years ago. And they were more of like "twilight sleep".

I can not fall asleep on my own without medication, only maybe if I forced myself to stay up for 3 days......well, I'm guessing a trip to the ER wouldn't be far behind that!

I can not stay asleep. I did solve this for a while when I first started a certain medication, but now on a good day it is waking several times, on a really bad day it is waking up one hour after I fell asleep, then waking 2 hours later, then 1-2 hours later, and finally if I want to even be able to walk that day I'll need another little silver of some sleep med to get back to sleep.

My sleep is so non restorative it almost feels like torture when I wake up.

I dream (in my opinion) excessively. I can recall sometimes 5 or more dreams a night, in great detail. Even if I just feel asleep for a hour and woke up, I can remember my dream.

I have NO SLEEP CYCLE. None. Out of no where it will start to cycle- 2-3 hours later every day, around the clock, eventually I cycle back to my semi regular bedtime of 7am-10am. Yes, those 3 hours are the only time period that seems to stick around for my regular bedtime. This past summer for had a good period for a week or so where I was going to bed around 4am and waking up around 2 pm and could go outside and get some SUN. Then it flipped to going to bed about 3pm and waking after midnight, which is awful! Everyone else is alseep and you're dragging your exhausted body up into the darkness to begin your "day" on the couch or in bed.....

My sleep study showed no sleep apnea. It showed, as I guess, ZERO stage 3 or 4 sleep.

I need, ideally, 12 hours of sleep to feel even slightly OK with this disease. Every once in a while, when that happens, it's like Christmas to a kid. The "Eight hours of sleep a night" does not cut it for me, and sleep doc did NOT understand this. "Sleep Hygiene" and "Sleep restriction" nearly killed me. (Hello doctor, I have a serious immune problem, even if you don't believe in it, you're killin' me here!)

Melatonin messes my sleep up completely.

Probably so many of you are reading this and saying "yeah, me too...."

Is there any hope? I mean, is science ever going to pan all this out and figure out what parts of our brains are screwed up and possibly ways to fix it?

I keep reading about how the Hypothalamus is what control, amongst other things, out sleep/wake cycles........could it be said tha insomnia is a condition of the hypothalamus?

Oh, one other things just for the ladies: Hormones affect my sleep and my CFS BIG time. The 7-10 days before my period everything gets so much worse.

Hormones. Our brains. Infections. What the heck? What is going on, in nearly 2011, that sleep medicine is still so much in the dark ages? What has developed recently? The non-benzo hypnotics...that was a while back....those don't even promote deep sleep. Rozerem? Have read about 2 positive comments on this melatonin receptor drug for every 200 negative ones. Can't take any antidepressants.

Sure there are people who can go 48 hours regularly with no sleep and be only slightly the worse for it......for me, 24 hours no sleep means I can barely walk up the stairs and I will be in a semi-coma all day, not awake or alseep just alive.

What will be the long term implications of getting NO deep sleep year after year after year? Inadequate growth hormone secretion because of no stage 3/4 sleep....by the time I'm 30 will I have the growth hormone levels of a 90 year old? Will supplementing with growth hormone help? I've heard negatives a positives.

Sorry this turned out so long!

Do any doctors/researchers (WPI Perhaps?) know why M.E./CFS sleeping problems, insomnia, sleep cycles, non-restorative sleep, are SO severe?

Is there any help? I have seen CFS experts who don't address sleeping problems at all unless you bring it up to them......then it's here's some ambien (grrr!)

 

[Carrigon]

When I first got sick, OMG, the first three days, there was no sleep. I couldn't sleep. And I had that fatigue of death feeling. Then it turned into snapping awake every second if I tried to sleep. It was a horrible nightmare from hell. I couldn't sleep. Every other disease in the world lets you sleep, except this one. It took years for me to be able to sleep again at all. I think high doses of shitake mushroom extract for several years is what finally helped to regulate my sleeping. But this past year, I'm back to having alot of trouble with sleep. I'm not sleeping well, I get up alot, I toss and turn alot, I've got restless legs. I'm a mess. I haven't found anything to fix the sleep for good. And I can't regulate what time I sleep. My hours are all messed up.

 

[Sasha]

I hope the title of my thread was indeed dramatic and not indeed fact, but this is one of my MAJOR concerns/fears.

Hi Moon - sorry you're having such bad problems with your sleep. I'm not sure if the question you're asking is, "is our sleep permanently destroyed" but if so, I think the answer is "no". I've had CFS for 25 years but had a partial remission of several years. When the disease has been active, I've had severe insomnia; when I was in remission, my sleep was normal.

So I think that if we get better health in general, the insomnia will also improve - I think it's just one of the symptoms of CFS and like the others, will lift with general improvement.

The trick, of course, is getting better health! I don't know the answer to that one. But with all the research going on at the moment, maybe help is not too far away...

 

[soxfan]

I could so totally related to this post...I use to have the most wonderful sleep until I became sick. I couldn't fall asleeep, stay asleep and I still to this day never wake up feeling refreshed. I almost dread getting out of bed in the morning.

I have tried everything (at least it seems that way). The only thing that puts me to sleep is Lunesta even though I am never refreshed. Everything else leaves me with a terrible hangover no matter what size dose I take. Or else it leaves me in that half sleep/half awake torture all night long.

Melantonin messes my sleep up too. I had been off it for a few months and then started up again and now am waking 3-4 times at night so I am going to quit it.
I can never nap during the day atl all no matter how exhausted I am. My brain/body will not settle down and rest. I am sure it is because my brain no longer knows how to shut down without the sleeping pill. I really believe I have to train my body/brain how to sleep again on its own and the only way to do that is to try and get off the lunesta.

I did try and go off them a month ago. I had only been on a half and then quit. For 6 nights I had about 3-4 hours sleep each night all broken up. By the 7th night I was starting to feel very sick so I had to start them up again. Nothing else even comes close to putting me asleep. I have tried every over the counter pill there is.

I am sorry I don't have any words of wisdom here but I wanted to let you know you are not alone in this.....

 

[JAXintheCity]

Brain not working, so bare with me!

I am so there with you! I have to take pills to sleep, too. Though, Ambien and Lunesta make me hallucinate -- so I just use Tylenol PM or Nyquil. If I do sleep on my own, I wake up every freakin' hour. If I get less than eight hours in a night, I feel it. Ideally, I need at least 10 hours of sleep a night over the course of three or more consecutive nights to feel functionable. (That's not a word...but I can't think of a word now...) Melatonin does not help me at all...either does Valerian (again, can't remember the word, but you know what I mean...)

I have CRAZY dreams. Vivid, and yes, I remember a lot of them when I wake up.

I don't nap either, despite being exhausted!

And yes, before my period, I get horrible - horrible - nightsweats. I always get night sweats, but they are worse right before.

 

[heapsreal]

Im in the same boat mate, i cant sleep without meds since cfs, i have an assortment of medication that i rotate between to help avoid tolerance and to try and get consistant reasonable sleep, but still have periods of crappy sleep but not like i was pre sleep meds. I would love to try xyrem but that wont happen in australia anytime soon.

cheers!!

 

[Sallysblooms]

Before I found the right doctor to do the right blood testing on hormones and other things, I didn't sleep well. I know get the restorative sleep that we all need to heal. I sleep for 9-10 hours a night.

With my hormones balanced and getting the right supplements for my POTS and CFS, I now wake up refreshed. I feel awake during the day also. I still lie down to rest in the afternoon, but I don't have to sleep then. I will if I need it, naps are wonderful. It is mainly for my POTS. The CFS is SO much better.

The DRibose, carniclear and CoQ10 as well as the other things I take made the difference. The brand and amount is the key. I am on a schedule every day.

 

[aquariusgirl]

I had the same problems.
My sleep quality improved a LOT once i started on methylation support .. bioactive folates, b12, sam-e, yasko's multi....the simplified 5 as Rich Van K calls it.
You need to methylate to convert serotonin to melatonin.
still struggle with sleep cycle... ie not tired late at nite.. but i do fall asleep when I get in bed, I just don't FEEL sleepy.

 

[SickOfSickness]

Wow, I think most of us have major sleep problems but which problems we have vary a lot. And most find one med that works okay? I have not found much that works for me and I should search more, but I don't have a lot of focus.

 

[TheMoonIsBlue]

Sleep Problems (Understatement!): Thanks to all who replied

Still learning the boards not sure if I can reply to each post individually or not.............

The one and only time during my M.E./CFS (6 years now) that I had an improvement in my sleep is when I was on antivirals. It was weird because the whole time I was on antivirals (Valtrex and Valcyte) I had even worse trouble sleep. Once I stopped the valcyte and just went on to take valtrex the sleeping problems eased up but I remember I had about Three-yes three- glorious days where I was able to sleep unmedicated! And on and off for a couple more weeks I could get by with only 1/2 the amount I usually took to sleep.


Well.........enjoy it while it lasts they says. That ended and I ended up back in insomnia hell.

I still do believe a viral infection in our BRAINS has much to do with all this.

I know......as someone commented.......this is one of the only disease which will not let you rest! It's crazy. How are we ever supposed to heal without sleep?

I can not nap either. I think I said before, I've had about 4 naps in 6 years. And I woke up feeling so dazed and confused I was worse off than before. If I sleep less than 6 hours at night (or in my case, morning) I will go into a sort of semi coma about 8 hours later in bed..........not awake but not asleep. It is actually quite painful being stuck in this weird semiconscious condition.

It really..........sucks!

Maybe for those that have a lot of REM, it could be because if we are only getting stage 1 and 2 and REM and No stage 3 or 4 we cycle through REM more often.

I think Dr. Klimas did some study about cytokines in sleep.....I don't remember.

We need some new sleep meds that promote deep sleep. Either that, or horse tranqualizers?

P.S. Do one poster- I did try Rich's Methylation protocol for one year, sadly it did not work for me. I did find that higer doses of Perque B12 helped my cognitive problems for a while, but that faded, and after a year, it just wasn't working out for me. I tried about...about 5million other supplements (hah!) with out any results.

 

[TheMoonIsBlue]

P.S. Is there any such thing as "Hypothalamus dysfunction"? What tests would determine such as thing and is there any treatment? Or is that just a general term such as "adrenal fatigue"?

 

[alex3619]

Hi TheMoonIsBlue

I understand some of what you are talking about - it is not something that is usually regarded as insomnia, but something else entirely.

This problem appears often in very long term patients. For me it started about eight years after I was diagnosed with CFS, or about ten years or so after I was partially disabled with CFS. I fulfill the CCC definition of ME, but have never been formally diagnosed with ME. My circadian rhythm became disconnected from the day/night cycle in the late nineties. I fought this for years. It was a mistake. I think your problems are worse then mine (in this respect at least) and being a guy I have different hormone issues.

You are getting sleep, just not prolonged deep sleep. That is when the restorative hormones are released. Total loss of sleep for more than several weeks is fatal due to a total immune collapse, but even some sleep prevents that.

I only brought this under control (if you can call it that) when I stopped trying to keep to set sleep schedules of any kind. Unlike you I can still get to sleep on my own, but only if I sleep when I need to not when the clock says I should. This significantly reduces my symptoms, but leaves me an alien in my own world. However, there is a downside. Now more than a decade later, my sleep cycle shifts (which used to be only an hour a day) are often up to eight hours per day, and I have had several weeks at a time where I need to sleep six or seven times a day, but only from half an hour to an hour and a half. During these days or weeks I have no sleep cycle at all. Now I am back to a several hour delay in sleep cycle per day, but this keeps changing.

I don't think its viral infection in the brain. I think most CFS symptoms are from cytokines, which are from our own immune response, and I am beginning to think that XMRV, whether it is pathogenic or not, is the cause. Even if XMRV (or other MULVs) are benign, they trigger a vigorous immune response, primarily in anti-viral cytokines, and these really stuff up the brain and metabolism. Because we can't beat the virus, that flu-like feeling then lasts our entire life - or at least until we can get good treatments.

My advice: don't try to fight it unless you have to for a short term goal. Go with it. Of course, as I said, your sleep problems seem even more severe than mine, so I am not sure how this advice will work with you.

Bye
Alex

 

[Mya Symons]

I don't think its viral infection in the brain. I think most CFS symptoms are from cytokines, which are from our own immune response, and I am beginning to think that XMRV, whether it is pathogenic or not, is the cause. Even if XMRV (or other MULVs) are benign, they trigger a vigorous immune response, primarily in anti-viral cytokines, and these really stuff up the brain and metabolism. Because we can't beat the virus, that flu-like feeling then lasts our entire life - or at least until we can get good treatments.

My advice: don't try to fight it unless you have to for a short term goal. Go with it. Of course, as I said, your sleep problems seem even more severe than mine, so I am not sure how this advice will work with you.

Bye
Alex

I also have had sleep problems for years. I was taking SAM-E and it seemed to work for a while, then it stopped working. This happens often with medicines or supplements. They only work for a short while. When I do fall asleep, I am constantly waking up. Sometimes it is from the twitching, sometimes I get a electrical zap in my head, sometimes it is bad dreams, sometimes it is pain, sometimes it is because of bladder spasms, and then sometimes there does not seem to be a reason. I read somewhere that if you remember your dreams, you are waking up in the middle of R.E.M. sleep. I often remember my dreams when I wake up. I also experience insomnia, but stay away from sleeping pills because I sleep walk (and sleep drive) while I am on them.

Alex, I am interested in finding out more about the cytokines. Is there a particular study involving XMRV and Cytokines? Do they cause muscle twitching or jerking? XMRV (HGRV) probably messes up a lot of chemical processes in the body. I am wondering if one of those chemicals being out of sync can cause these annoying twitches.

 

[Mya Symons]

Oh, one other things just for the ladies: Hormones affect my sleep and my CFS BIG time. The 7-10 days before my period everything gets so much worse.

Yes! Most definately everything is so much worse the week before my period and the first few days of my period. I feel so much more fluish, fatigued and full of pain during that time. It gets so bad before my period and my period is so painful and heavy that at one point I was trying to convince my new doc and the OB/GYN to give me a hysterectomy. I am glad they said no. Now that we know CFS may be caused by a virus, I realize a hysterectomy may have made things worse. Who knows?

 

[heapsreal]

i believe our insomnia is due to inflammatory cytokines as well, but even if i sleep when my body is ready to sleep it is usually only a couple of hours of short light crappy sleep, nothing restorative at all and yes i to go through carcadian rythym changes, but due to work and family committments i have had to fight against them with meds and melatonin, i believe meds have also improved the quality of my sleep even though in alot of medical literature it says that sleeping pills deminish sleep quality, i dont think they realise how bad our quality of sleep is in cfsers. But in saying all this, there are some cfsers that sleep all the time, so i think there are 2 types of cfs people when it comes to sleep, tired but wired and tired and sleepy. I dont know how cytokines fit into the tired but sleepy category. I know in my early years of cfs i would have crashes where i would sleep all the time for 2-3 days, i felt guilty when in these states as had family things i just couldnt do but another side of me enjoyed them as i could sleep deeply without drugs and when in this state had no aches and pains, after coming through this stage i felt alot better, but this was in the start of my cfs and still not knowing what the push crash cycle was about.

 

[alex3619]

Hi Mya,

There are a number of studies looking at cytokines with XMRV, I think including de Meirleir, Klimas and of course the WPI. I don't have enough knowledge of cytokines to say much. This is something I tried researching about a decade ago, but it is a very deep subject, constantly changing with new science, and the more I learned the more I realized how little I knew. Now I don't really have the resources to look into this deeply anyway. All this is made even more complicated by the fact we keep finding new immune chemicals: there are a host, and we almost certainly don't know about them all, nor what they do.

Cytokines, like prostaglandins, require a real scientific expert who has been researching this for years to say anything that might be definitive. Its very very complicated. I wish I could be more helpful, I do try to update my knowledge from time to time but I am also struggling with memory loss which makes it difficult.

This is now a hot area for research with XMRV - expect to hear a lot more, and with better explanations, as the science evolves. This also means that we can expect to see treatments emerging as the science progresses.

Bye
Alex

Alex, I am interested in finding out more about the cytokines. Is there a particular study involving XMRV and Cytokines? Do they cause muscle twitching or jerking? XMRV (HGRV) probably messes up a lot of chemical processes in the body. I am wondering if one of those chemicals being out of sync can cause these annoying twitches.

 

[alex3619]

Hi heapsreal

You have actually partially answered your own question here: at different stages of your illness you either have trouble sleeping, or sleep easily. Cytokines, plus inflammatory prostaglandins and other essential fatty acid hormones, can induce sleep or prevent it - or even make it very unrewarding. This isn't about a single note (one cytokine) its about an orchestra. Playing the "right" tune with the right combination of notes can either keep you awake or send you drifting to sleep. The music also keeps changing, in line with stress, genetics, viral activity, drugs, nutrition etc etc etc. Some of these hormones inhibit others, some reinforce others, its all very complicated - truly chaotic, including semi-stable zones that in chaos theory are called strange attractors (where patients lock into a particular cytokine pattern for long periods). Its very hard to treat something so chaotic; treatment can just add to the chaos in many cases. Once we understand the forces driving all this, I expect to see treatments vastly improve, because we will be treating causes not symptoms.

I do understand about fighting this and the issues that arise: I had to fight this very hard for three years when I went back to uni to finish my biochem degree. I am just glad that you have found a way to manage it.

Your comment about doctors generally not understanding how bad CFS is, and therefore how relatively unimportant minor side effects are from drugs, is very true. Look at the way some docs view using arvs to treat XMRV, and you see the same story.

Bye
Alex

a lot of medical literature it says that sleeping pills deminish sleep quality, i dont think they realise how bad our quality of sleep is in cfsers. But in saying all this, there are some cfsers that sleep all the time, so i think there are 2 types of cfs people when it comes to sleep, tired but wired and tired and sleepy. I dont know how cytokines fit into the tired but sleepy category. I know in my early years of cfs i would have crashes where i would sleep all the time for 2-3 days, i felt guilty when in these states as had family things i just couldnt do but another side of me enjoyed them as i could sleep deeply without drugs and when in this state had no aches and pains, after coming through this stage i felt alot better, but this was in the start of my cfs and still not knowing what the push crash cycle was about.

 

[TheMoonIsBlue]

Hey everyone,

You all brought up some very interesting things, and I will re-read everything later again.

Yes, my sleeping cycles (or should I say my "cycling sleep") has me in a world of my own. Not that CFS isn't bad enough, but going to bed when everyone else is just getting up, or going to bed at 3pm and waking up in the dead of night is just very lonely. I feel totally disconnected from the world sleeping and waking like this and no one understand unless they live it themselves.

I tried explaining this to a sleep doctor, and I think I said before following a sleep schedule and bright light therapy and sleep restriction.........all the things that may help a great deal of NON-ill (CFS) people made me so sick I thought I'd die of exhaustion, or go crazy. I don't think any sleep doctor will understand unless they also happen to specialize in M.E./CFS and lets face it there's only a handful of them in the world.

Actually I did see a doctor who was accredited in sleep medicine and was "treating" CFS/FM patients (although, to put it kindly, they had NO business doing so.......) and they wanted me to drag myself out of bed at 8am every morning and then EXERCISE! Ah, that was in the early years of my illness, I had no idea what was happening to me. Me: "Exercise makes me very sick, doctor." Response: "Oh."

In a very odd twist, about 3 months ago, I had 2 days (a few days a part) where I slept for 24 hours straight! I have no idea what could have caused it (other than, once again, hormones) and it has never happend since nor had it happend before.

1/2 of my brain is awake the other half is asleep........this is how my brain feels all the time.

I would like to get cytokine testing

Does anyone think seeing an endocrinologist would be of any help, and what tests would I ask for?? I am low on growth hormone but wonder if taking growth hormone would affect viruses or retroviruses badly.......allowing them to flourish somehow? I have no idea. I did read I think Klimas said low growth hormone is usually due to lack of stage 3/4 sleep (which I don't get) so I don't know if supplementing would help or not. But then I read an article by a Dr. Peterson patient who had HIGH growth hormone and I think he said something to the effect of, it was the body's response trying to repair something.

I need some repairing........ in fact strip me down to the engine and rebuild me!