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Anyone feel worse with CPAP/BiPAP?

Discussion in 'Sleep' started by Whit, Aug 3, 2013.

  1. physicsstudent13

    physicsstudent13 Senior Member

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    I really wonder how sleep apnea damages your brain and gives you brain fog and memory problems and what you can do? is it glutamate deficiency, slow signaling and that is helped by choline and NAC?

    I've gone back to the higher settings and they feel better and give more energy. what are your settings on bipap? I was titrated on 18/14.
     
  2. barbc56

    barbc56 Senior Member

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    I have an APAP which changes the pressure as needed. I started with the CPAP where the pressure is continuous, but ended up with bloating and worsening of my IBS. I was getting too much air pressure when I didn't need it.

    I have been amazed how much the APAP has helped my sleep. This being said, I still have FM, RLS and difficulty getting deep sleep so the improvements are relative. I found the the symptoms of morning depression, morning headache as well as being able to sleep better at night because with help with the Nuvigil, I stay up longer during the day and that helps me sleep better at night were the symptoms that the APAP really helped.

    I found the following site very helpful. I've only posted a couple of times with questions and was impressed with the answers as well as follow up to see how you are doing. The site is affiliated with The American Sleep Apnea Association.

    http://www.apneasupport.org/
    It's important to get a sleep doctor who is certified through the American Association of Sleep Medicine. I know someone who was told she didn't have OSA because she wasn't fat. This is not true. Over 50% of people with Sleep Apnea are not obese. She went to a sleep doctor and it turned out that she did indeed have OSA. There are lots of myths about OSA which are covered in the above site as well as people having difficulty with using the CPAP.

    Untreated OSA can turn into Central Sleep Apnea which is very serious. It can also be dangerous to your health.

    Compliance is the number one problem using the CPAP.

    I don't use the dehumidifier as it would smell musty, sometimes I would get the backspray and just inconvient. I use a non dye My machine is compact and not noisy.

    BTW, I was really surprised when my sleep neurologist suggested I had sleep apnea. I had no idea I was waking up 51 times an hour during deep sleep.:eek:
     
  3. barbc56

    barbc56 Senior Member

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    I have no idea if the above will help with OSA however if there are true deficiencies they could be caused the the OSA as it's structural and not biochemical.

    If you have sleep apnea and don't use the CPAP/appliances any kind of medications that slow the central nervous system can be dangerous as well as cause death. Untreated sleep apnea may be one cause of sudden death, especially while sleeping.
     
  4. physicsstudent13

    physicsstudent13 Senior Member

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    the osa may cause brain lesions or damage which show up as white matter on DTI MRI, the lesions may disappear after 1 year on bipap therapy according to one new study.
    I found klonopin helped and I feel tired and foggy without it I think even though I'm on an asv. I ran out of my prescription- does anyone know a over the counter sleep aid that helps? maybe melatonin, tryptophan?
    I really need klonopin to reduce the central apneas and consolidate my sleep I think
     
  5. Creekee

    Creekee Senior Member

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    Things that helped hubby's complex sleep apnea (combo of obstructive and central):

    - Meticulous adjustment of the machine. His pulmo has him on high pressure, short breaths. Exact recipe has been micro-tweaked over and over to reduce episodes. Badger your doctor 'til it's right!

    - Addition of oxygen. Your levels should not be dipping into the 70s at night. Adding oxygen every night has helped increase overall levels. A little oxygen refresher during the day can also help.

    Not sure if this is helpful, but I'm getting amazing effect combining melatonin with doxylamine succinate. If you're in the US, Costco sells a Kirkland "Sleep Aid" that is 25 mg doxylamine succinate. Neither one of these two does diddly-squat for me by itself, but combined, they are a lifesaver.

    Hang in there. Sleep apnea is way too important to leave unaddressed. Fwiw, hubby has been on his machine almost a year now and has gone from near death to feeling terrific.

    Best of luck!
     
  6. physicsstudent13

    physicsstudent13 Senior Member

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    by the way what's your machine recipe? I'm on 20cm max IPAP, EPAP 7-11cm, auto bpm, PS min/max=5/13cm. so you mean that you have a shorter TI setting like around 1.0 seconds?
    wow that's what I have to, complex mixed apnea OSA+CSA, seems to be more CSA on my sd card readings
    I'm really dying from this disease, it kills your body and energy and gives you diabetes and brain damage, heart damage, chest pains and the machine doesn't work for me on my settings

    are you sure about doxylamine? I tried it and I think it caused fog and may worsen apneas/brain damage. klonopin seems to be the best sleep aid for me
     
  7. Whit

    Whit Senior Member

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    I drew a pic.

    [​IMG]
     
  8. physicsstudent13

    physicsstudent13 Senior Member

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    well normal lung PFT test results I think should be at least 90% FEV1, mine is about 65% and I can't exhale after getting an infection after going on 6 weeks of azithromycin.
     
  9. Whit

    Whit Senior Member

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    CPAP causes deeper inhale (breath with the current/pressure) and shallower exhale (breathing upstream). Both in and out are deeper in lungs than where I was without it.

    Lungs/breathing
    If 1=empty lungs and 10=full lungs:
    W/out cpap i breathe 1-4
    W/ cpap i breathe 3-6

    Never fully exhale

    Is air left inside lungs w/ cpap a prob or causing a bad interaction w/ my illness?

    I put a big emphasis on exhale. I exhale v fully - no air left inside lungs. I didnt do ths b4 CFS.
     
  10. August59

    August59 Daughters High School Graduation

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    I've had 4 of them and they all never indicated that I was getting any "Deep Sleep". I was on Xyrem for one test and only got 9 mins. of "Deep Sleep". The first couple indicating a couple of short "Central Apneas". My last one picked a couple of "Alpha Intrusions".

    I've tried all the meds, BiPAP and ViPAP (?), but I never get "Deep Sleep" being Stage 3 and Stage 4.

    My last study also included the MLST or the "Nap Test" the following day and it came back with Moderate to Severe Narcolepsy without Cataplexy.
     
  11. Whit

    Whit Senior Member

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    Anyone hv any advice? Im in a pretty bad place. Barely slept in 2 weeks. I guess i hv to just roll the dice w CPAP? Everytime I do that w CFS i get worse...
     
    Dr.Patient likes this.
  12. Whit

    Whit Senior Member

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    CFS seems cardio related. So im worried its pushing the balance worse through altered breathing.
     
  13. physicsstudent13

    physicsstudent13 Senior Member

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    I had terrible MSLT test so it's narcolepsy then I have also? does Provigil/nuvigil help? but it seems that you have to treat the central apnea problem. have you found a cure for that?
    my sleep study showed mixed OSA+CSA but I think it's more CSA and hypopneas according to my sd card downloads.
     
  14. Jacque

    Jacque Senior Member

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    Hi all.. I just recently started with a CPAP also.. my 02 levels are dropping to 52% during the night and close to 200 apnea events etc... They say is it anatomy with me... The first night went ok - I got one with the nasal pillows and feel like Darth Vader suiting up to go to sleep.. The next day I had one of the best days I had experienced in a LONG time... then the next day was s***...and so have been the next 3 days.... Which is what led me to pop on here an cee if anyone has experienced this...

    I am wondering if the extra oxygenation is killing off a lot of my viral and bacterial pathogens. After all they HATE OXYGEN right? Could this be why many of us feel WORSE???? I am gonna stick with it for a month and see what happens and I will report back... It only stands to reason that it can and probably DOES cause HERX!

    I will check back in in a month.. I want to feel like I did the first day... every day....

    But at almost 55 ... I don't get my hopes up for anything anymore after battling the beast for nearly 40 of those long hard years....

    Fight on!!! And PS I too would horrify you if I told you what I have spent FIGHTING for 40 years!! it is in the hundreds of thousands...I assure you... GRRRRR
     
  15. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I had problems with CPAP. I would go to sleep without a problem, but wake up after a couple of hours and had a lot of trouble getting back to sleep even if I took more meds. I persisted for a couple of weeks but steadily declined in health, so gave the machine the toss.

    I had a sense something about the process might have been stressing me. I had no psychological negatives with using the machine, as I could get to sleep okay.

    Very expensive exercise for me.

    BTW, I couldn't find any research that showed that CPAP reverses hypoperfusion in brain.
     
  16. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    For me, I just got on the machine to see if it would improve my fatigue, but ended up with a more severe relapse than could be accounted for by my jogging alone. APAP, CPAP, etc is like running a marathon all night, and thus, the explicable worsening of cfs.

    Perhaps surgery may be a better option for severe sleep apnea, that way, they don't have to be running marathons all night. @RustyJ
     
    RustyJ likes this.
  17. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Please read my post earlier here, thanks.
     
  18. Jacque

    Jacque Senior Member

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    My problem isss.. I have to wear it of have a stroke or heart attack bc of my low oxygen levels and constant apneas...so I have to find a way to get used to this thing...ucck.
     
  19. Jacque

    Jacque Senior Member

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    Ohh and BTW I saw a guy one day walking out of a Dr. office a WEEK after his surgery... NO WAYYY I WILL EVER DO THAT...this big ol tough guy was literally balling his eyes our a week after the surgery from the pain!!.. That would Kill me I think to have my top of my mouth cut out... yikes...
     
  20. Jacque

    Jacque Senior Member

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    I am just beginning to learn about all this CPAP CRAP!!!! They are saying I may need a BiPAP machine as the machine I an now using is not helping with the CENTRAL apneas... Argh...But then you write about APAP... I have so much to learn.. .All I know is I am a HORRIBLE relapse and wondering if it was brought on by the machine? All I know is I am surely NOT feeling any better... just worse and worse and worse... Glad to hear you are improving tho!! Yay.... No one believes me either when I tell them how bad my Sleep Apnea is bc I am only 125 lbs...
     

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