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Meeting with a sleep specialist doctor - any suggestions?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by ahimsa, May 21, 2010.

  1. ahimsa

    ahimsa Senior Member

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    I have a meeting with a doctor who is a sleep specialist (neurologist, I think). Depending on the how this meeting goes I might be scheduled for a sleep study. (actually, I'm not sure I want a sleep study, but if it will help figure out what's going on then I'll do it...) Any suggestions from folks who have met with a sleep specialist?

    One thing that I wonder - is it likely for a sleep doctor to understand the issues of patients who have orthostatic intolerance? I have had two abnormal tilt table tests - diagnosed with Neurally Mediated Hypotension. I have no idea exactly how (or even whether) these issues contribute to my sleep problems. I think there's some relationship just from casual observation over the last few years but it could be unrelated.

    I'm not sure exactly how to approach this issue with this doctor. On the one hand I want to provide all the information that might help figure out my problems. But I don't want to alienate a doctor that I've never met. I'm sure you folks know what I'm talking out. There are too many doctors out there who are all too ready to dismiss any input from patients, especially from ME/CFS patients, unless it is framed in a way that the doctor is able to accept it.

    I know I'll have to play it by ear (20 years of dealing with doctors has taught me that) but I'm looking for any input that might be helpful. Thanks!

    Marjorie
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i think its hit and miss with any so called specialist when it comes to cfs. When it comes down to it most cfsers they have found that we dont get good quality stage 4 sleep, xyrem is the 'gold standard' at the moment for increasing quality sleep, then meds like mirtazipine, seroquel, sedating tricyclics like doxepine, amitriptyline and the z drugs like zopiclone and zolpidem. Baclofen which is an old cheap muscle relaxant is suppose to help with deep sleep like xyrem and is suppose to be a cheap alternative to xyrem. Personally i have found on its own its average but when combined with another sleep med it works quite well at improving the quality of sleep and wake feeling well rested, but like all sleep meds nothing works forever and rotating between sleep meds helps alot.

    good luck with it, i hope u get something good out of your appointment.
     
  3. OurDayWillCome

    OurDayWillCome

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    I am with Dr Klimas... if there are sleep problems, one should have a study. You can gain some invaluable information from the study. First, check your Dr's credentials. Make sure (s)he is Board certified here: http://www.absm.org/Diplomates/listing.htm . This truly is important as anyone can say they are a sleep specialist but not understand all the nuances of the data. Then check the Lab here: http://www.aasmnet.org/ . Not all labs are certified.

    The person you see may or may not know anything about CFS/ME. I don't believe there should be a problem with letting them know your history, and explaining that is why you are seeking information, but I would not expect them to have any in depth information on the subject. Their field is Sleep, while there are many disorders/diseases that cause problems with sleep.

    If you think you might have problems sleeping 'all rigged up', let them know. There are meds available that can be taken which do not interfere with the study.

    When I had my study I had no stage 3 or 4 sleep and very little REM. I do have Apnea. Treating that has helped, and it is just air... no drugs.

    Good luck.
     
  4. Sasha

    Sasha Fine, thank you

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    I had a sleep study last week because was worried about Stage 3/apnoea/restless legs being common in ME/CFS and had had bad insomnia until put onto Pregabalin. They allowed me to continue on Pregabalin on the night of the test to see what problems were left over. I tested normal but it was worth doing. I do recommend you get it done.

    I'd take details of the Klimas study - also I took details of other stuff which I mentioned on my Post #16 of this thread on Xyrem.

    It was a neuropsychiatrist that I saw, who scheduled me for the study in their sleep unit. I was diagnosed with POTS/OI just before the study actually happened, and frequent peeing (sorry!) is an aspect of that for me, including the need to get up in the night. I contacted the doctor to ask if that meant we should look at anything else in the sleep study and he said not but that it helped to know the whole picture. I'd be inclined to tell your doctor - your OI is a diagnosed, physiologically demonstrable condition with possible implications for your sleep and my guess is that it would be helpful for you both if you told him.

    Good luck!
     
  5. HopingSince88

    HopingSince88 Senior Member

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    I have had 2 sleep studies done, one about 12 years ago and one about 3 years ago. Both showed zero stage 3 or 4 sleep, and one showed no REM sleep. It was good to have this information as it helps me to understand my feelings in the morning of not being 'refreshed.'

    My two studies were done at different sleep clinics. The first was at at a hospital, and the layout of the sleep lab was Terrible! There were two of us sharing a semi-private room, and the other person fell asleep before me. He snored and snorted and thrashed around all night long. I felt like I never got to sleep at all. The second study was at a real sleep clinic and I had a private room. This worked much better as there were no intrusions. I brought my own pillows, so that I could arrange myself the way that I do at home.

    I was shown to have mild apnea, but not bad enough for a cpap. I don't really get that...if you have 8 'episodes' an hour it still disturbs your sleep, but you don't qualify for an assistive device. Makes no sense whatsoever.

    I would encourage you to get a sleep study, as it will give you information that you have no other way of determining.

    Good luck with your appointment.
     
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I agree

    I concur, I had a sleep study done in the fall of 2005 a few months after I was diagnosed with CFS. Nothing much was determined then besides very little REM sleep I believe, this was done at a hospital, although I did have my own room.

    I was diagnosed with Fibro in Oct of 2008 and then had a major flare up last fall. Part of the flare was major insomnia, although I think I had been suffering with insomnia for years! Insomnia, is not only not being able to sleep, something I just really realized!

    So last fall I had 2 sleep studies done. the 1st one was to observe my sleep, which demonstrated obstructive sleep apnea. The 2nd one was done with a VPAP. During the time of my flare up I was on Trazadone but that stopped working well. I tried Doxepin (did not work for me) and then Mitrazapine, works well for me for now!

    so only 4 years later and I was found to be needing a "cpap" machine. I had my sleep study done at Boston Pain and Sleep Center. They are also helping me with my pain, much better than last fall!

    I was also found to have low oxygen, and I am in the process of taking oxygen at night.
     
  7. serenity

    serenity Senior Member

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    like the others here i have had a couple of sleep studies & they have shown that i get very little REM. i have borderline apnea & thank goodness dont' have to use the CPAP, it hurt my neck. (a did the oral device i tried.)
    my advice, be ready with sleeping pills. they will try to argue, my doc at the time refused to listen when i said there was no way i would sleep in an unknown environment without help. years of not sleeping while on trips had taught me that. so i had to go back again as i did not sleep a wink the first time. how anyone could sleep with all those tubes & wires all over you is beyond me. i managed one successful (a few hours) sleep at home, which they dont' like - they swear you dont' get good results but it was the best i could do...& then one successful (maybe even 5 hours?) at a clinic with Ambien. no way i could have slept at all without. they will moan & groan & say it taints the test results, but they saw with me that it was better than the results they would get it if i didn't sleep at all.
    i did have a comfortable private room, can't imagine bein in the room with someone else! yikes
    i hope i didn't scare you, sleep has always been a huge issue for me & i continue to see a sleep specialist to work on something that will work to help me sleep.
     
  8. ahimsa

    ahimsa Senior Member

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    Thanks for all the input

    Serenity, don't worry, you did not scare me! I actually don't scare that easily.

    I should probably try to summarize my sleep problems. I seem to have quite different sleep issues than a lot of people with CFS/ME. I don't take any sleep medications. I go to sleep about 5 minutes (or less!) after I go to bed. I don't feel sleepy during the day. I never take naps. I sleep on a fairly regular schedule. And while I would never say that I wake up feeling "refreshed" my sleep does help me feel better most of the time (although there are a few times when my sleep is so bad that I wake up feeling just as bad if not worse).

    My biggest sleep problem now (I'm ignoring any problems I had when I first got sick 20 years ago - e.g. no more night sweats) is that I wake up repeatedly during the night. My sleep is always much worse after I do "too much" - especially those things which aggravate my problems with chronic orthostatic intolerance (e.g., standing for more than a minute or two, sitting upright at the computer too long, getting overheated, etc.). My sleep is also worse when I forget to take my midodrine (vasoconstrictor which helps with the orthostatic problems). My sleep gets better after a day of mostly resting in the recliner with my feet up.

    Lately I've had an additional problem which is that I not only wake up repeatedly during the night but when I wake up my heart is going pretty fast (over 100, up to 120-130). No anxiety, just fast heart rate. It slows down gradually, I roll over, and go back to sleep. Then 30 -45 minutes later it happens again. It's happening more often than in the past. So, I thought I should at least talk with a sleep specialist to rule out problems like sleep apnea.

    My guess is that this is yet another manifestation of my problems with autonomic dysfunction. Many of my symptoms are helped a little bit by various treatments but nothing helps as much as resting. It's like the old joke with the doctor and patient:

    Patient: Doctor, it hurts when I do this.
    Doctor: Then don't do it.

    So, while I'm not all that optimistic that the doctor will be able to do anything, and I don't really want sleeping drugs, I'm going to try to keep an open mind when I talk with the sleep doctor.

    I'm very grateful that I do get some relief from sleeping unlike so many other stories that I have read from ME/CFS folks. If I rest enough days in a row I can get some almost normal sleep. And this is the part that many doctors don't get. Most people, sometimes even those with chronic illness, will sleep better if they have had a busy day (meaning physical exertion, not stressful) as long as that exertion is not too close to bed time. I'm the opposite. All things being equal, more rest = better sleep.

    Okay, sorry for all the rambling. I almost feel guilty for complaining about any sleep problems at all when I read how others have it so much worse. I do feel grateful that I am able to get out of the house every once in a while unlike others who are stuck inside, or even in bed, most of the time.

    :hug: HUGS to all :hug:

    Marjorie
     
  9. ahimsa

    ahimsa Senior Member

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    Qualifications of sleep doctor and sleep center

    I forgot to mention, I appreciate the suggestion that I should verify that the doctor is board certified and the sleep center accredited. In my case, "yes" to both. Then after I did all that checking online I saw that my sleep questionnaire (have to fill this out for my appointment, also have to log my sleep for a week) has a logo on it from the American Academy of Sleep Medicine. D'oh!

    Marjorie
     
  10. serenity

    serenity Senior Member

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    sounds like your sleep issues dont' differ that much from mine, i wake frequently & often with a rapid heartbeat but it is usually from nightmares - the sleep meds help with that - anxiety meds, whatever they are.
    good luck on your results, glad i didn't freak you out.
    :)
     
  11. Sasha

    Sasha Fine, thank you

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    Still well worth having the sleep study, though, I think. Before I went on Pregabalin I had different versions of insomnia on different nights - one night it would be repeated waking (like you) another it would be not getting to sleep for hours, another it would be being awake for a big chunk in the middle, another it would be waking up at 4 am and not being able to sleep again...

    You've clearly got a sleep problem and the heartrate thing is a physiologically demonstrable issue that they will measure (you get wired up to measure oxygen saturation, heart rate, all sorts). It will be helpful for them to see what's going on with your body as you sleep.

    Incidentally, in a proper sleep lab I believe a private room with a door is the norm (they called my room a "bay" which made me think it would be some sort of curtained-off recess but it was just hospital terminology). They realise people can't sleep normally when sharing. They often expect you to be in two nights (first night to sleep badly in a strange place, the second to have your normal night's sleep). They let me go home after one night because I managed to sleep normally-ish (for me).

    Good luck! I really do think it's worth it. I think any risk of sleep apnoea should be investigated because if it's severe it can lead to serious problems in later life if untreated (Hoping, I don't know enough to know what's considered serious, I realise you were having 8 episodes/hr but I don't know enough about it).
     
  12. HopingSince88

    HopingSince88 Senior Member

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    I think Medicare requires some minimal number of apnea episodes per hour, and my foggy brain thinks it is 30. Insurance companies base their approval of treatment on this number (or at least they did when I had my sleep study done). So the sleep doc could not prescribe a cpap for me as my quantity of episodes was not high enough. Seems to me that if a person shows consistent apnea over several nights, that the number of episodes should be moot.

    Also-my sleep pattern was similar...I fall asleep in 5 minutes flat and sleep for about 4 hours. Then I then would wake up with a pounding heart around 2am, and mostly did not go back to sleep. If I did fall back asleep I would continue to wake up frequently. I saw a nurse practitioner who did cortisol test on me. Unfortunately I only took saliva samples during the day and not at night. I suspect if samples had been taken it would have shown sky-high cortisol was waking me up...like an adrenline rush at 2am. During the day my cortisol was at less than 2% of normal. Talk about the walking dead! I was subscribed DHEA and took this for 9 months. It seemed to reset my adrenal glands so that it did not fire off in the middle of the night. My cortisol is still not right (blunted)...but now I sleep through the night...no more 2am wakenings and no more heart pounding.
     
  13. ahimsa

    ahimsa Senior Member

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    sleep issues - getting up in the night to urinate

    I meant to reply to this earlier. I used to have this symptom, getting up 2-3 times in the night to urinate, during the first few years of my illness (I've had this illness for 20 years, since 1990). After my 1995 tilt table test (my BP plummeted severely and I passed out after 20 minutes in phase 1, no isoproterenol) I got a diagnosis of neurally mediated hypotension. So, I started on fludrocortisone, salt tablets, and drinking 2.5 to 3 liters of water daily. My symptoms got better. The night sweats also stopped.

    (Digression alert, LOL! I used to wake up and have to change my t-shirt and my pillow case, drenched with sweat around my neck and chest but not underarms....some people used to say, "Night sweats, hmmm, maybe it's menopause?" and I'd say, "Huh? This illness started at age 29, a bit early for menopause!" I'm 49 now and still regular, not even perimenopause yet. Okay, back to the main topic...)

    What I always find amazing, almost counter intuitive, is that even though I was drinking a lot MORE water I was going to the bathroom LESS OFTEN. Plus I stopped going to the bathroom in the middle of the night.

    I don't know for sure whether the treatment eliminated this symptom OR whether it was just coincidence (sometimes things change and I can't tell exactly why). I suspect that my treatment, in addition to lifestyle changes to try to minimize problems with orthostatic intolerance (e.g., sitting down while in the shower, etc.), did actually help with this symptom.

    Just some more ramblings....maybe they'll be helpful to someone out there, LOL!

    Marjorie
     
  14. August59

    August59 Daughters High School Graduation

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    Can be a life saver

    Thread is a little old, but I'll throw out a comment anyway. I've had 4 sleep studies and one MSLT(?) - Multiple Sleep Latency Test - and the sleep studies have been pretty consistent. Out of all 4 of them the most Stage 4 sleep that I got was 9 minutes. All of the rest were less than that. The worst part was that I was on Xyrem the night that I only got 9 minutes, but overall pattern was the best out of all of them. My first sleep test picked up on 3 short instances of "Central Apnea", which is just not breathing without any obstructions. None of the other 3 had it. I was on the borderline with the first 3 as far as "Obstructive Apnea" and they tried my with CPAP, but the technician did not hook up the humidifier or moisturizer (I've heard it called both names), but it dried me out so bad that I woke up every hour needing something to drink. They really pushed me hard to give it a try at home, but I never did. I did have sinus surgery prior to my last study and my apneas dropped way down.
    Now for my MSLT test, which I had never had before and I think it's primary purpose is to diagnosis "Narcolepsy". I had told my sleep doctor that sometimes I felt like I drifted off to sleep during the day and it was almost like I fell into a dream. Anyway the test involves a series of 4 naps (minimum)and you have to lay down for 30 minutes every 2 hours. I fell asleep on all 4 naps, longest time before falling asleep was 4 minutes and I had REM sleep on all 4 naps and on 1 of them I was in REM sleep within 2 minutes and another 1 was 3 minutes.
    My official diagnosis was "Narcolepsy w/o Cataplexy" and the surprising thing was that about 2 weeks after that study Narcolepsy was officially declared an "Autoimmune" disease. A few years before I was having a lot of Vertigo attacks and every time I had one my hearing in my right ear only fading. I eventually had a horrible vertigo attack and after that one I went from 40% hearing loss to 80% hearing loss, but I did not have anymore attacks for over 3 years. That was diagnosed as "Sensoneural hearing loss due to Autoimmune disease". Somewhere in there I was diagnosed with "hypothyroidism", which to my endocrinologist is an autoimmune disease. No one has ever figured out what autoimmune trigger(?) I had or have.
    Sorry, I got off subject!. I know 2 people really well that had sleep studies done that resulted in abnormal results, but they received the right treatment and it has drastically changed their lives and probably saved their lives.
     
  15. glenp

    glenp "and this too shall pass"

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    Brain wave

    When you have had the sleep studies have you also been hooked up for eeg monitoring of your brain wave patterns?

    glen
     
  16. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Do you have an update on this ahimsa?
     

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