Yes, I've been through the drill 3 times. It's not really that big of a deal.
I get NO, nada, deep stage sleep - which at my age is not right. Been that way since at least '06, confirmed last Dec. And get this, it's not considered a sleep disorder. I got a CBT referral from my last study.
That said, you should get a study done to rule out OSA, etc., or to treat it if it's there.
If you have something like me (or more commonly alpha-wave intrusion into delta sleep), you'll probably need to look for someone besides a pulmonologist who just isn't trained on sleep meds. And I'm being generous based on the idiots I've seen.
Some docs know their sleep meds but they're just not usually the front-line people you'll meet, you'll probably have to search them out. My best resource has been a psychiatrist who stays current on lots of stuff. He even knows what cytokines are. I always take at least one paper for him to read.
I have the same Alpha / Delta sleep disturbance, along with not enough stage 4 or restorative sleep. Otis didn't you just get a dysautonomia diagnosis also? They are very easy tests though, be sure to ask if the testing areas are sound proof. A lot of people going for a sleep study snore loud enough to pull the paint off the walls, I had a friend go and she didn't sleep a wink because the snoring was so loud. Good luck I hope you find some help.
i had a sleep study done a few years ago, beside minimal sleep, the sleep i did get showed little stage 3 or 4 sleep, no apnea etc, they had no real treatments for my insomnia, they could only treat sleep apnea or rls. So over the years of working with my doc we have come up with rotate between several different meds for sleep as i get tolerent to them quickly, this has worked quite well all though once in awhile i go through a stage where the meds just wont work and i go drug free for a couple of exhausting days and then everything falls back into place. If i dont take meds for sleep i get that light dreamy type crappy sleep waking up frequently, i think when u get like this, meds are the only thing that help.
Have had 3 sleep studies with the last one having the MSLT - Multiple Sleep Latency Test (? - Nap Test) the following day. All of the nightime (PST) test showed little to no Stage 3 or 4 sleep with some Alpha wave intrusions and no sleep apnea . The daytime (MSLT) test indicated narcolepsy without cataplexy.
obviously things like sleep apnea need to be ruled out, but its so common that cfsers have dysfunctional sleep where they dont reach deep sleep so quality suffers but also quantity as well. we need understanding doctors that realise this doesnt go away with a 2 week course of sleeping tablets but a strategy of using sleeping tablets on a long term basis. I know its commonly said that benzos interfere with our ability to obtain deep sleep but i think any sleep is better then none, plus someone on here said that chronic use of benzos shows that we do get deep sleep, its in the initial stages of use that deep sleep is reduced. I would like to see a study on this though, i think it was the patients doctor that said this about benzo's. I know i feel alot better after a good night of medicated sleep, so it does help, i think if it wasnt for sleep medication i wouldnt be able to work and i would be house bound.
I was just on the Offerutah website and there is a good selection of videos on there. I watched Dr Lucinda Bateman talking about the sleep issue. My sleep is dire, I could wake up as many as twenty times a night. I feel I'm just floating on the surface. I understand it all bettter now. She covered a lot of ground, including meds, naturally I fell asleep during it so had to backtrack. Well worth a look, Dr Bateman is one of the best.
Thanks for all the feedback. I've had CFS since 1983 and attempted a sleep study at a clinic in 1985 but did not sleep at all and that was that. My opthalmologist is conducting a sleep study relating to sleep apnea and glaucoma and will provide me with a portable device to take home with me for a mere $100, which I think will be better for me since I actually may sleep. I'm pretty sure I don't have sleep apnea -- just that half awake at all times kind of sleep where I am always aware of my surroundings, although I dream a lot too. I sometimes refer to myself as the human Tivo. I can be in the middle of a dream (but still aware of my surroundings), get up, use the restroom and go right back to the dream. Weird.
Otis ~ you mention alpha-wave intrusion. While I really don't understand brain waves, I had 20 neuro-integration treatments and I could never get my alpha waves under control. Unfortunately, it didn't do anything and that's $1,800 I'll never get back! We can only keep trying.
Thanks Beaker, I couldn't log on this morning for some reason.
Lots of other good stuff on there too about meds in general, one on mindfullness, a talk for those considering pregnancy etc. Another great recent video is on meao-me.ca. Its by Dr Eleanor Stein, a psychiatrist who has ME. She makes the case that ME is not a psychiatric illness, bit of a doozie that one! She is witty and warm and if I ever need a psychiatrist I'll make the trip to Calgary. A friend with ME has a brother who thinks it's great fun to tease her and say shes just depressed. I told her to truss him up and plonk him in front of the video. Then when she releases him his sore joints etc will give him some idea of what she goes through.
I'm not sure how copyright works on all this but generally the doctors producing these are generous to the ME community to say the least. I wonder if they would be open to having lots of media on one spot on PR. Then if someone new comes on, or someone newly diagnosed is looking around they could start there. I don't know about you all but I find it easier to listen than read. Honestly, how lucky are we all to have people of this caliber fighting for us. Almost makes up for all the other lot, the malicious and the pure lazy.
I had study and have no stage 3 or 4 sleep. They did not say that this was abnormal as they only looked for apneas & RLS. My oxygen sat also fell to 90 at times - during REM - that is apparently not good. My REM latency was off as well but I don't know much about that.
Very interested in the neuro-integratrion.....this might have saved me some research as I cannot afford something that does not work.......
Otis ~ you mention alpha-wave intrusion. While I really don't understand brain waves, I had 20 neuro-integration treatments and I could never get my alpha waves under control. Unfortunately, it didn't do anything and that's $1,800 I'll never get back! We can only keep trying.[/QUOTE]
i wonder if neurofeedback could help with alpha intrusion, its used alot in kids with adhd, from what i can gather its sort of like a computer hooked up to the brain and u play certain games that help u to learn how to control certain brain wave patterns and behaviours. Something that stopped me from doing this therapy was cost and not alot of proof that it works for insomnia, especially related to cfs/viral infections etc. At the moment drugs seem to be the only option. Someone also said in a past post about traditional benzos stopping us from getting into deep stages of sleep like stage 4, but said they have found that people who have taken them for a long time do get stage 4 deep sleep while on these benzo's, i think the bottom line is, any sleep is better then no sleep. xyrem is supposedly the only drug for this treatment, but i think there are probably a few more out there that just havent been studied and not worth alot of money. One drug baclofen which is an old cheap med used as a muscle relaxer is said to induce deep sleep like xyrem and enhanced growth hormone has also come from using baclofen. Personally except for the first time, it doesnt put me to sleep on its own but when i use it with another sleep med, i definately get good deep refreshing sleep. Maybe even different drug combinations would help with alpha intrusion and deep sleep. As individuals we have to find what meds or combination of meds is going to work for us, u cfsers who are terrible insomniacs have probably got your favourite combos, these would be interesting to test for brain wave patterns etc
Sleep studies are only as good as the clinicians who are interpreting them. Sure they can tell you about apnea and RLS, but they underdiagnose problems to a huge degree. I had one which was interpreted by the lab as normal. Three years later a doc I saw called down to the lab, got the report, and told me it was terrible. No stage 1 sleep, 40 awakenings an hour, etc. Ask for the report after it is done, and get someone who is qualified to interpret it.