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Sleep issues is it worth seeing sleep specialists?

Discussion in 'General Treatment' started by wonderoushope, Jan 10, 2019.

  1. wonderoushope

    wonderoushope Senior Member

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    Hi I am just wondering if one would go to a sleep specialist if one basically can’t sleep very much at all?

    I’ve always thought it not worth investigating this with a sleep specialists as I thought you would actually have to sleep to be tested. I doubt I could have sleep apnea (as I barely sleep). I have this gut feeling I would never be able to sleep when required for testing (unless they give you a device to test at home)?

    I barely sleep and just try to sleep but mainly toss and turn. If I go sleep it’s usually at 4am till about 9am. Sometimes I don’t even sleep but have energy for the day but probably it catches up with me subsequent days with lethargy and lack of concentration. This all happened when I first got sick. I was a good sleeper before all this.


    At the moment in the past few weeks my sleep pattern has changed again due to higher fatigue. So I have been napping during the day and light sleeping and have been actually sleeping in night, but wake up severely fatigued and barely can keep my eyes open for the whole day (repeat cycle). It feels a bit like what I suspect Narcolepsy would be like for me at the moment. Like I need to shut my eyes at breakfast and at the doctors this morning I had to close my eyes while Gp was writing up scripts and searching info. My mother slept at my house the other day and as she was talking to me at breakfast I had to close my eyes. This is not the norm for me when it comes to fatigue. I suspect though now because I have been resting (no activity) I am going to go back to insomnia. So now will be back to tossing turning all night and trying to sleep and then just up at 4am because I am to restless and probably won’t sleep the whole day.

    Would one bother to see a sleep specialist for patterns like this? Especially as I have a lot of other crossing over issues, joint/muscle pain, food intolerances, ibs, overreactive bladder etc
     
  2. andyguitar

    andyguitar Senior Member

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    Yes @wonderoushope I think it would be worth seeing one. They might be able to offer some simple advice on how to make things a bit better. Even a small improvement would make a difference.
     
  3. wonderoushope

    wonderoushope Senior Member

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    Thanks @andyguitar it’s so hard to know what specialists to see first. Especially as I am not working at the moment due to health deteriorating so cost factor is an issue.

    Doctor has referred me to a rheumatologist but not sure if a sleep specialist would be better to see first? Gahhh so hard!
     
  4. Stretched

    Stretched Senior Member

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    I would be in your shoes if not for Ambien. I’ve had trouble with sleep for decades but have not been to sleep doctor. OTOH, my brother, non-CFS, is in high stress job and recently went through testing. He says it’s the best thing he’s done for his sleep issues but that he hated the testing, i.e. sleepover while wired up. He now uses a CPAP mask. This is causing me to reconsider - maybe it would help but I, too hate the idea of a sleepover=&
     
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  5. wonderoushope

    wonderoushope Senior Member

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    @Stretched - tried quite a few sleep tablets but nothing has worked so far. I’m also taking cymbalta and just upped it as doc said it might help with sleep (it’s not so far). :(

    Would be interested to find out how you go if you do decide to see sleep specialists.

    I think a sleepover would be pointless because I bet I would not even sleep. I find it hard enough sleeping at my own house let alone a foreign place.
     
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  6. Stretched

    Stretched Senior Member

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  7. wonderoushope

    wonderoushope Senior Member

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    @Stretched - unfortunately no sleep pill has worked for me yet.
     
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  8. Stretched

    Stretched Senior Member

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    Sorry. You’d think some cocktail of pills would do the job.
     
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  9. bjl218

    bjl218

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    If you want to be tested for sleep apnea, "take home" tests are available. They're not as accurate as testing done at a sleep center, but you might get some useful information. I've done a number of sleep studies at sleep centers and 80% of the time, I've had a great deal of difficulty getting to sleep.
     
  10. alkt

    alkt Senior Member

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    sleep hygiene advice may be helpful for otherwise healthy people but I spent more than a decade trying to fit into the recognised daily norms no help whatsoever and now I tend to sleep when I need too usually between noon and 6 pm if my body and brain doesn't fit in with society why should I force my sleep patterns to fit in .
     
  11. Dechi

    Dechi Senior Member

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    I’ve had a polysomnograph in a sleep clinic. Unfortunately, if you don’t have sleep apnea, they just dismiss you. The doctor I saw was a pneumologist, they were all pneumologists, and she said she couldn’t help me and everything was normal. Which it wasn’t. I am debating whether I will go to a different sleep clinic, where they are not penumologists.
     
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  12. Alvin2

    Alvin2 The good news is patients don't die the bad news..

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    Not really worth it for ME.
    You need to have several hours of sleep to rule out apnea.
    They also check for things like restless leg syndrome, seizures, REM behaviour disorder, how many times you wake up/fall asleep, how long your in each phase and stuff like that.

    It can't tell you why you can't fall asleep or why your sleep quality is poor unless there is a specific EEG abnormality (like seizures or other brain wave abnormalities).
    They can't offer much for ME specific sleep issues unless you have one of the conventional sleep related issues.

    That said sleep apnea is rather common and you may have other comorbid issues. But if cost is really an issue then i would skip it until cost is not an issue or you have some extreme acute sleep problem.
    That said things like an EEG while awake may be worth getting done, if you act out your dreams you may have REM behaviour disorder, but as a fishing expedition its not worth it unless you can afford it or have/get insurance coverage.
     
  13. jesse's mom

    jesse's mom Moderator

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    I did do a sleep study at the hospital. I am glad I did. I discovered I do not have sleep apnea. I truly did not think I would sleep at all, but I did somewhat. What the Neuro found that was 'remarkable' was that I never went into stage 4 sleep. That is very common in ME/CFS patients.

    I do not mind taking medication. He has helped me get more deep sleep. I have ups and downs, especially when I do not pace myself.

    If I get a vote I say go! That is what they are there for!

    My husband had sleep apnea so bad we thought he had early onset dementia! He wears his CPAP every night and he is recovering his mind. He does not have ME/CFS.

    Whatever you decide, all the best to you.

    P.S. I think the 'honey for sleep' thread is interesting and I have ordered some raw unfiltered honey.
     
  14. Lynn

    Lynn Senior Member

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    When I first got ill with ME/CFS about 25 years ago, I had a sleep test done. It showed that I was not getting stage 4 sleep and only sleeping with 60% efficiency (whatever that might mean). I have been on Ambien ever since.

    In the last few years, I began grinding my teeth. It turns out that bruxism (grinding) can be a sign of sleep apnea. So I asked my doctor to prescribe another sleep test. Amazingly, it turned out that I now have moderate sleep apnea. I ended up getting a mouth device that opens up the airway. Three months later an in-home sleep test showed that the sleep apnea has resolved.

    Unfortunately, I still have to take the Ambien to fall asleep. But I can tell that I am sleeping much better. I breathe much better and don't wake up during the night. It has not really touched any of the ME/CFS symptoms but I think I do feel a bit better just because I am getting some sleep.
     
  15. Dechi

    Dechi Senior Member

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    @Lynn sleep efficiency is total time slept divided by total time in bed, so basically you slept 60% of the time and were awake 40% of the time. Normal is 85%.

    Mine was just a little over 50%.
     
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  16. Wishful

    Wishful Senior Member

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    Unless you have genuine rheumatism, I think that seeing that specialist would be a waste of money and effort. GPs like sending patients--especially difficult ones--to specialists, even if it's unlikely to help the patient. I suggest asking your GP why he thinks a rheumatologist would be helpful for you. I saw one: waste of time and effort.

    I have no experience with sleep experts. I suggest making sure that the specialist deals with non-standard sleep issues, because I'm sure there are lots who only deal with well-understood issues, such as apnea.
     
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  17. wonderoushope

    wonderoushope Senior Member

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    @Wishful - I also thought it was a good idea to see a rheumatologist not to help with sleep. It was more about priorities of symptoms and should I see a rheumatologist for joint issues or concentrate on seeing someone about getting my sleep in order . I found the rheumatologist who specialises in fibromyalgia and is very interested in the gut back into shape. It's not that I really need his help on getting gut back into shape as I have a good dietician for that, but I thought it was a good indication that he might be quite good, as he is right that the gut is a big component. I basically wanted to get his opinion if I have fibromyalgia. I have pain issues that could mimic fibro or some type of joint issue (but I don't have arthritis).

    The joint issues don't really affect me at night, while I am sleeping. I mean I wake up very stiff, and do have back pain, but I don't feel pain throughout the night, so I doubt the joint issues affect my sleeping too much. They are separate issues (for the most part).
     
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  18. Alvin2

    Alvin2 The good news is patients don't die the bad news..

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    Mine is also reduced a fair bit. But they can't do much for this, we don't yet know why ME affects sleep quality :(

    The problem with these drugs is that they are highly addictive and often lose effect over time (not for everybody but for many)
    They are only meant for short term use though they can feel like a god send, later on they become a bigger problem then the sleep issues you started with :bang-head:
    https://en.wikipedia.org/wiki/Zolpidem#Tolerance,_dependence,_and_withdrawal

    On an aside i have found Acetyl Cysteine helps with sleep initiation, i don't know what the mechanism is and taking it long term is of unknown safety so i can't really recommend it.
     
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