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Experiences with sleep apnea treatment amd ME/CFS

Discussion in 'Sleep' started by kikala, Jun 10, 2017.

  1. kikala

    kikala

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    hi folks,

    I recently did a home sleep study and was told that I have moderate obstructive sleep apnea. The results show that my O2 saturation was at or below 88% for 123 minutes during the night. My primary care is adamant that I get treatment and seems confident that I'll feel better.

    But as we all know, nothing is simple with ME/CFS. I've been sick for 27 years, and have had interrupted and nonrefreshing sleep, as well as debilitating exhaustion, since then. About a year into my illness I had a sleep study and was told I had no apnea.

    I will try the CPAP and other treatments, though I'm wary because I know many people have difficulties adjusting to the masks and my sleep is so fraught as it is. I'm wondering though if others have been diagnosed with apnea and whether or not treatments have had any impact on your fatigue or any other ME/CFS symptoms?? I searched the boards and found very little about this, but have also seen that a significant percentage of people with ME/CFS also have sleep apnea.

    Plus, I just need to say, I am feeling so PISSED at this illness lately! The symptoms of ME/CFS are bad enough, but now, after many years of being sick and sedentary, I also have prediabetes, high blood pressure and high cholesterol. It just doesn't seem FAIR the ME/CFS makes me more susceptible to other illnesses. It really sucks.

    Thanks for any feedback!
     
  2. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Just try the CPAP. It will not cure your ME/CFS, but it will treat your obstructive sleep apnea. Treating anything that is treatable should relieve the symptoms caused by that problem and any exacerbation of ME/CFS it causes.

    Most people do just fine on CPAP. All most all of the difficulties that people encounter are easily overcome with a little patience and trying the solutions recommended by their doctor's and home care companies.

    Let me know how it goes.
     
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  3. *GG*

    *GG* Senior Member

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    I agree with @Never Give Up. It is not likely to Cure you, but perhaps it will help a little?

    Just use the equipment to the best of your abilities :)

    I have had 3 sleep studies now, First 1 a few years intot he illness. Little REM sleep was found if I recall correctly. Had a crash and became very disabled in 2009, not sleeping well still, had a sleep study done, and was found to have OSA. I joined the forum that year as well, and read about Oxygen, so with my low readings like yours, I was able to be prescribed Oxygen while I use my CPAP.

    I seem to do better than most, is all because of this? I don't know, probably not, but figure why Not do it?!

    GG
     
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  4. TenuousGrip

    TenuousGrip Senior Member

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    My SIL does NOT have ME/CFS but was Dx'd with fairly severe sleep apnea a few months ago.

    The C-PAP has given her back her life. She was exhausted, had chronic pain, and horribly non-refreshing sleep.

    Not any more :)

    I hope your trial does as much good for you as hers has for her.
     
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  5. BruceInOz

    BruceInOz Senior Member

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    I have been using a CPAP machine (actually a BPAP - the B is for bi since it has higher pressure when breathing in than breathing out) for over a year now and ME for 22 years. I have not noticed any improvement in my ME symptoms. If anything I have been deteriorating a little over the last couple of years. I still wake up feeling very unrefreshed yet have probably been sleeping better.

    I was managing my sleep apnea by ensuring I only slept on my side but as I get older that has been leading to connecting tissue injuries in my shoulders and hips. The CPAP has helped in this regard (by allowing more freedom in sleeping position through the night) but has made no difference to anything else.
     
  6. kikala

    kikala

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    Thanks BruceInOz, I am afraid this will be true for me too, but I will definitely try to be sure.

    And I have the same problem with pain in my hips and neck from lying on my side so often over so many years. I used to have wretched ME symptoms but no chronic pain, but that changed a little over a year ago.

    I'm meeting with a sleep specialist in 2 weeks and will report back.
     
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  7. MikeJackmin

    MikeJackmin Senior Member

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    The CPAP can take some adjustment but it is more than worth it. 'Moderate' sleep apnea is bad. I think it would be almost physically impossible for you not to feel significantly better once you stop being hypoxic at night.
     
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  8. Mesurfer

    Mesurfer

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    It was of no help to me. I still have all the equipments and think about giving it another try...
     
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  9. StrivingOn

    StrivingOn

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    Apnea varies in its causes and severity. CPAP/BiPAP can help and modern machines rarely take long to get used to, but for each person whose life it transforms there are dozens who see a benefit that trails off after a few months or get little benefit in the first place.

    There are several specialist apnea sites. I prefer http://www.apneaboard.com/forums/

    My experience is as follows:
    • After 30+ years of never feeling fully refreshed after sleep I was suddenly hit with chronic fatigue/CFS/ME.
    • A couple of years later, still suffering from CFS/ME, a home study with a pulse oximeter showed my SPO2 (ie oxygen) levels falling too low several times a night.
    • A CPAP machine helped considerably, albeit still leaving 2/3 of my fatigue.
    • The effects gradually wore off and I began to have increasing episodes of air hunger. My machine settings were adjusted, only to precipitate/coincide with a horrible increase in my CFS/ME.
    • Changing the CPAP settings back improved matters but still left me worse than before the machine settings were changed.
    • My direct apnea scores were very low with the machine but the complex/unexplained apneas (CA) were normally poor and sometimes horrible, so I started using a BiPAP machine.
    • I've not noticed any difference with the BiPAP machine, although my CA scores are now zero, probably due to the machine now not recording them. I have a review in a few weeks time and don't expect anything to come from it.
    • The machines probably do me some good, but the hope of a CFS/ME cure and subsequent false dawns have been dispiriting.
     
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  10. caledonia

    caledonia

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    I wouldn't expect it to cure ME, but it may provide some help with energy and concentration if it helps you get better sleep.

    My sister uses a CPAP and has tried many kinds of masks. She's settled on a nasal pillow type of mask as being the most comfortable.
     
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  11. kikala

    kikala

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    Thanks so much, StrivingOn -- it's helpful to hear your experience.

    I'm scheduled to get the CPAP mid August -- I'll report back on how it goes.
     
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  12. merylg

    merylg Senior Member

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    I've just started trial of CPAP for mild sleep apnoea. Needed encouragement to get started. Almost gave up before trying but my GP talked me into it!
     
  13. kikala

    kikala

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    hi there,

    Merylg, your comment reminded me that I hadn't checked back in and reported on my experience.

    I began using the CPAP machine 2 weeks ago. I'm happy to report that it was much easier than I feared to find a comfortable mask and get used to it. I think it's helping some -- the primary thing I notice is that I'm not waking up as often during the night. I used to feel like I was constantly drifting in and out of sleep, and my dreams would have an awareness that I was dreaming that made me feel like the night went on endlessly. With the CPAP I wake up once or twice a night. I wake up feeling less exhausted and more rested.

    Both before and after CPAP I need to be in bed around 10-11 hours at night (have a lot of difficulty falling asleep) and nap before lunch and before dinner for 1/2 - 1 hour, so that hasn't changed. I've been in a pretty good ME/CFS space (not crashed), so I'm waiting to see if the better sleep helps when I'm crashed.

    In my case, it was definitely worth a try.
     
  14. TiredBill

    TiredBill Senior Member

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    I was diagnosed with sleep apnea a little over a year ago (after 33 years with CFS).

    IMO it is critical to treat this condition. My personal situation has been complicated by the fact that I've developed a mix of apnea types: Obstructive (which is typical) and Centrals (which is where the brain stops the breathing w/o an obstruction).

    When my Centrals have been low, I've gotten good therapy and better sleep. Because my Centrals are up I'll be tested for a more exotic machine next week called an ASV that's designed to treat my mix of apneas types.

    If one is going to treat sleep apnea with a device THE MOST IMPORTANT THING is to get a machine that records all the sleep data to an internal SD card that users can upload to their personal computers using a free shareware program called Sleepyhead. This allows users (or more expert third parties) to dial in the settings on these machines in a way that maximizes therapy. Or in cases like mine, to determine if a style of machine is suboptimal.

    Some machines are called "bricks" in the sleep apnea community because they prove no data save "compliance" data (showing whether the machine was used, or not). Bricks are pretty useless and some DMEs will stick patients with these cheaper machines and pocket the profits.

    The better standard CPAP machines include an "automatic" mode (and are therefore called APAP) that allows pressures to rise and fall as necessary (unlike the fixed pressure of a CPAP).

    The current top-of-the-line APAP is the ResMed AutoSense 10 Auto. Philips has a similar Dream Station. But you need to be aware all manufacturers have variants with few data options, and one does not want to get stuck with a brick.

    Masks are the trickest part of successful therapy. There are different types: full face, nasal, and a minimalistic pillow style. And all sorts of differences within these types from different manufacturers. Finding the right mask is important for comfort, to reduce leaks, and for the quality of therapy.

    Personally, while I know my current machine isn't the optimal type of the minority of people like me who have mixed apnea types, I still use the machine nightly w/o fail. Whatever "getting used to it" this entailed was more than off-set by better sleep.

    The last thing I need on top of the sleep disruptions and fatigue I have from CFS is to have sleep apnea-induced sleep disruptions and fatigue.

    My hope is that an ASV machine will maximize my therapy in a way that APAP has not. But I would definitely encourage anyone who has CFS who's been diagnosed with sleep apnea to try an APAP machine (with full data) and to try different mask types and to follow the number via Sleepyhead.

    There is an excellent forum for Sleep Apnea users where old hands help newbies dial in their setting. PM me if you'd like a link.

    It ain't that bad,

    Bill
     
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  15. StrivingOn

    StrivingOn

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    I echo what Bill writes.

    Getting used to a modern machine takes no time at all and difficulties are unusual. CPAP machines are fine for most people; APAP is needed in only a minority of cases with large numbers of CAs, like Bill and myself.

    Sleepyhead is free and pretty easy to use with little learning needed.
     
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  16. TiredBill

    TiredBill Senior Member

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    Since CPAP machines (papable of fixed pressure only) and APAP machines (that can respond to changing needs on the fly) don't have must of a cost differential, the smart move IMO is to get an APAP (and one that is fully data capable for use with Sleepyhead).

    APAP machines will work in CPAP (fixed pressure) mode for those who do best on straight pressure.

    My CAs are up to the point where I'm hoping to qualify for ASV.

    Bill
     
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  17. Webdog

    Webdog Senior Member

    I've never written out my sleep study history before: 4 sleep studies over 12 years! And at the end of this long saga, I don't actually have sleep apnea and don't need CPAP. :)
    • Sleep Study 1 (in sleep lab): In 2005, I was diagnosed with mild/moderate sleep apnea. Tried CPAP for 6 months with several different masks, but it didn't help my sleep.
    • Sleep Study 2 (at home): A couple years later, I got retested, and found to have mild sleep apnea. I was encourage to try CPAP again, but I I declined. I showed my study to a another sleep specialist (family member), and he disagreed, saying there was only 1 brief drop in O2 below 90 and he wouldn't have diagnosed apnea based on that.
    • Sleep Study 3 (at home): Another couple years. My primary care doc remains convinced my symptoms are still due to sleep apnea, so I get re-retested. No sleep apnea! Just "Upper Airway Restistance Syndrome (UARS)", which is a narrowing of the airway, and CPAP was not recommended.
    • Sleep Study 4 (in sleep lab): Earlier this year, my doc orders a complete night/day sleep study to rule out narcolepsy. I've never been hooked up to so many wires! No narcolepsy, and also no sleep apnea and no UARS.
    Much of this testing retesting and re-retesting was because doctors were convinced my fatigue was caused by a primary sleep disorder and my noncompliance with CPAP. If only earlier on, my doctors had considered ME/CFS, I might not have had to wait so many years for a diagnosis.

    I suspect there are many out there like me with secondary sleep issues, with doctors who completely miss the primary ME/CFS.
     
    Last edited: Sep 28, 2017
  18. StrivingOn

    StrivingOn

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    As much as APAP is better than CPAP, if someone else is paying (Medicare, NHS, whatever) you get what you're given. Self-funding APAP is expensive.

    I was diagnosed without a sleep study, just a pulse oximeter test. I started out with a CPAP, which helped but left me with large numbers of CAs, so I went on to APAP. I sleep for fewer hours and my sleep is better, but overall my CFS symptoms are still there - best defined as 'a struggle to do anything' rather than 'all I can do is vegetate in bed or on the sofa'.

    I was diagnosed when I did a sleep study over 20 years ago, but the CPAP machines then were relatively crude and I just couldn't sleep with one. I was suicidal for lack of sleep, so had to give up.

    Oh, how lucky we are to live in our modern world, if only people could see that.

    As an aside, I did a sleep study a couple of weeks ago to see how much my restless legs was affecting my sleep. I had such high hopes and got to sleep easily but then woke up in the middle of the night with hip pain and couldn't get back to sleep again. Alas, the mattress packing was breaking up and once my hips hurt, that was it. I was really depressed from the disappointment and lack of sleep. I have a 2 month wait until I get the results. Fingers crossed for something productive out of it.
     
    Last edited: Sep 28, 2017
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  19. Zombie_Lurker

    Zombie_Lurker

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    I too am a fellow "hosehead" with ME/CFS who uses Sleepyhead. I have consistently used an apap for the last 6 years for my moderate/severe sleep apnea. I have averaged less than 1 AHI while using cpap that whole time period. Successfully treating my sleep apnea has had zero effect on my ME/CFS symptoms like metabolic fatigue. However, at least I am not putting additional strain on my heart & body because I treat the sleep apnea by using cpap.
     
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  20. TiredBill

    TiredBill Senior Member

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    Not to be contrarian, but I think it it is important for patients to understand about variations within machine types so they can work with their physicians to get the proper coding that leads to getting an optimal device (including one with full data capabilities and ideally one that can do both fixed pressure and automatic pressure).

    The difference in cost between CPAP vs APAP is negligible these days and it is all about having a doctor writing the proper code in the prescription. Many health organizations actually prefer paying for the slightly more expensive APAP devices because by throwing these into "automatic" it reduces the doctor man-hours needed to individually titrate fixed pressure machines. They let the machines do "the work."

    The point being one shouldn't just take what one "is given," but rather steer the doctor/health organization to the better device.

    On Monday I'm going in for a sleep study using an ASV machine that is designed to treat Centrals. Mine have been creeping up and they make me feel awful the next day. ASV devices are very sophisticated (read: expensive) so one needs to fail on CPAP/APAP and on Bi-PAP before they consider these.

    Two months seems like a long time for them to read a sleep study. I hope they have a good answer for you and that you feel better soon.

    Bill
     

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