How many are on CPAP machine? Helping?

Discussion in 'Fibromyalgia Main Forum' started by hubcap_halo, Nov 17, 2009.

  1. hubcap_halo

    hubcap_halo New Member

    Got a sleep study done. Mild sleep apnea. And what I already knew---very little deep sleep. (8% stage 4 sleep). Mr. Sleep specialist added 25 mg of doxepin to my sleep meds and said it would increase deep sleep. I was underwhelmed. The doxepin has been better for me in low dose drops anyway.

    My new CFS PCP wanted me to try Xyrem and recommended a new sleep specialist. But the new sleep specialist doesn't want to do Xyrem. He wants me to try CPAP because he says he has 100 patients with mild sleep apnea like me and that it's improved their sleep from 20% to 90%. Ok. I hate the thing---I can't even sleep with a regular sleep eye mask, but I'll try this cyborg looking thing. I have no idea how I will sleep with this thing on me. Though it looks like they've gotten smaller.


    I'd still like to try the Xyrem.
    I find sleep to be so related to stress and habit. If I could retrain my body to sleep through the night I would improve and the cycle is up.

  2. Juloo

    Juloo Member

    You need to at least try the cpap. There are some people that have a difficult time being compliant with it -- either they cannot seem to find the right gear to make it work for them or they take it off during the time they're sleeping, etc., etc.

    After you try the cpap, you need to have your doctor authorize another study to see if you are actually improving the amount of deep sleep that you have. That's the only way you're going to find out if you are getting better results for that *specific* problem -- unless you see a jump in daytime energy and lack of sleepiness.

    As to cpaps here, my husband (non-CFS/FM) has used a cpap for probably about a decade and is a complete bear when he doesn't or can't. I had two sleep studies over the years, both showing less than 2% stage 4 sleep. Breathing-wise, I was borderline and had only mild apnea. I did not get a cpap through my doctor, but grabbed my husband's old one when his insurance updated his equipment. I use gear that has a nasal delivery system below the nose. My husband uses nasal 'pillows' (the air hose goes over the top of the head), although his first mask covered his whole nose. I know there are full-face masks also and oral devices as well. If you try the cpap, INSIST that you get fitted for the mask that will work for you -- and be diligent in making your tech find it. Your doctor/tech/insurance may need to be reminded that non-compliance=non results, so it is in your best interest (and theirs) to get good service during this time.

    I have tried many things for sleep over the years (I think I'm headed into my eleventh (?) year of CFS now) and by far the ONLY med that has worked FOR STAGE 4 SLEEP is Xyrem. Because I didn't have daytime cataplexy, insurance wouldn't cover it, and I had to pay for this (very expensive!) med out of pocket. But while I took it (after patiently wading through the titration process), it did what it was promised to do.

    What I really liked to do what to use the cpap on the nights I was using the Xyrem. The Xyrem can slow down your breathing or make it shallower -- my breathing was already shallow enough. With the cpap during the first part of the night (I always pulled it off after a couple of hours -- although I never remember doing this!), I knew that it was 'backup' while the Xyrem was doing its work -- I only took the first of the normally-recommended two doses a night. The rest of the night, no Xyrem and no cpap.

    Good luck to you.

    I you ever get to the point where you get the stage 4 sleep straightened out, I PROMISE you will feel like a different person.
  3. Juloo

    Juloo Member

    Another thought (or two). What percentage of your 'sleep specialist's' patients have CFS? You need to ask your sleep specialist if they treat any of the other five or six dozen sleep disorders besides apnea. Apnea is not the only sleep disorder -- but it is generally treated with cpap. Or surgery, I suppose. If this person is, in fact, an 'apnea specialist' and not a sleep specialist, then of course the rest of their patients will have good results with a cpap.

    If you do not have it, also ask for a copy of your sleep study results -- it sounds like you already have the percentages of sleep stages. What's your percentage of 3/4 combined? What is your blood oxygen level? If your blood oxygen level doesn't dip below the low 90%, why does your sleep specialist think that a cpap will help?

    Frankly, as one having been there, I agree with your pcp. You need some additional things answered before you can make an informed decision. It may be hard to get those answers if the caregivers don't have the training in other sleep disorders than just apnea.
  4. bluegnu

    bluegnu New Member

    Best of luck to you! I did the sleep study - got the Xyrem, and laid awake, feeling like I could move, for 3 hours after I took it. It was very scary - had there been a fire I wouldn't have been able to move. I didn't work for me - I tried it for more than a week. It also caused me to be extremely activated with panic attacks during the day. However, it does work for some, not sure if there have been any studies as to how it does for people with ME in particular.

    Worth a try - just be careful! I
  5. richvank

    richvank New Member

    Hi, hubcap.

    I have sleep apnea, and I use a CPAP machine. It has been a lifesaver for me.

    I tried different masks, and I settled on the nasal pillow type, together with a chin strap to hold my mouth shut when I'm sleeping. With this setup, I can sleep on my sides as well as my back, and I don't need a messy humidifier. The other masks would come off or leak if I turned on my side, and the ones that allow breathing through the mouth really dried me out, without a humidifier, and using a humidifier is more of a hassle. You have to fill it, it takes up space on your nightstand, it can spill, and it promotes growth of mold. The chin strap and the nasal pillow setup is far better, in my opinion.

    I actually find the machine kind of soothing, and I sleep like a rock.

    Best regards,

  6. hubcap_halo

    hubcap_halo New Member

    That makes a lot of sense about foregoing the humidifier.
    The doctor was proud of the air filter and humidifier, but I will
    request one sans the humidifier part. Or I suppose one could just
    not fill it up and not use it?

    Wow. You find it soothing? And sleep well, that's the most important thing.
    Glad it's worked for you.

  7. hubcap_halo

    hubcap_halo New Member

    Very good questions.
    My first sleep specialist was a CFS doc I found on co-cure. But he was very...hands off in many ways. Wouldn't prescribe Xyrem, just wanted to tinker with meds that haven't really been working.

    The new sleep doc was referred to me by a CFS specialist and a very picky one at that, so I believe he must have something going for him. He's definitely an all around sleep specialist--part of a center for sleep disorders . But on my sleep study under suggested treatments it recommended addressing the apnea, even though it was mild. And the blood oxygen level dipped to just below 90%. So again, I'm on the line. But he made a good point. He said, the machine is worth a try because if apnea is affecting your sleep, this will address, and a drug will not. And if this does not address it we can look to Xyrem or another solution.

    So I'll give it a try. Can't hurt.

    But thanks for your thoughts.
  8. hubcap_halo

    hubcap_halo New Member

    I feel the same way. I've had periods during my 13 years of CFS when my sleep was good. And I was so much healthier. I really need to get this deep sleep addressed.

    I didn't know one needed to have Cataplexy for insurance to cover Xyrem. I will check with my insurance company because I still want to try it.

    And I'm going in next week to try the CPAP so we'll see. I'm open to anything at this point.
    I've got to get better than this.

    Thank you
  9. Juloo

    Juloo Member

    I understand about the needing to clean it, but both my husband and I voted yes for a humidifier. Without it, the dry air can cause us both to get really dry at night and in the nasal passages. To me, the humidifier is an improvement. With the newer cpaps, the cleaning is not a difficult thing. Cpap supply sites sells cleanser and wipes withe cleanser to make it easier.
  10. pagoda

    pagoda New Member

    for my sleep apnea. I don't get all the really deep sleep I would like but my sleep doc says that is not due to the use of any aide. It seems that very few people have heard of this appliance but it has been successful for me for about 8 years. One of the things I realize too is that it is very easy to travel with and compliance is not a problem. It is cleaned, etc. like a retainer, etc.
    Look into it!
  11. ladybugmandy

    ladybugmandy Member

    how come people are still trying other avenues and not getting tested for XMRV?
  12. Juliel85

    Juliel85 New Member

    mild apnea, very little deep sleep. I tried it for 3 months and went off it, no improvement :(
  13. gknee

    gknee New Member

    I have a CPAP and I love it. I have no problems using nose pillows. When I had my sleep study It was found I don't have sleep apnea. I was dx'd with hypopnea. Hypopnea is where you start breathing shallower and shallower until your body is starved for oxygen. You then wake up and gasp for air. The result is like sleep apnea you don't get restfull sleep. My sleep study said I had 50 hypopneas in a 2-3 hour period.

    I sleep much better now. the majority of my sleep is a full 6 hours. I only have insomnia a few times a month. I also take Elavil which helps with sleep. I don;t sleep without it. I was scared at first but it took about a week to get use to it. My suggestion is don't use the ramp I had more luck without it.
  14. floyd000

    floyd000 New Member

    >Seems so many here don't even go to what may be the root of their sleep apnea.

    I completely agree. Many Sleep Centers are really just interested in selling you the CPAP machine. There doesn't appear to be any effort to determine where the apnea is coming from. I clearly have severe apnea from 2 sleep studies and the CPAP doesn't seem to help - tried for one year. I am now going back to try to figure this out. Don't smoke, certainly not overweight, no upper respiratory issues according to CT Scan, etc. Have found out that I have severe paradoxical breathing. Trying to see if that can be addressed and whether that will make a difference.

    Also found out that the Sleep Center transribed somebody else's information on my record. Be careful out there!!
  15. gapsych

    gapsych New Member

    The main cause of Apnea is structural with other risk factors. It can be familial. Even if I lose weight, I will still need the CPAP for the rest of my life. In your forties your throat muscles become lax and it becomes worse as you get older. Add to that any structural problems with your face, mouth and you get the apnea.

    Most people who use CPAP/APAP are not obese although extra weight is a risk factor. Some people don't even snore but that is a small percentage. Not everyone who snores has apnea.

    I had no idea I was having the apnea episodes and even though the sleep doctor thought I had it,I predicted it would just be from the fibro., restless legs syndrome.

    Compliance is an issue, however I have not had any problems, slept through the night the second night and the machine is quiet. I have the unobtrusive pap pillows. The machines are very different than as recently as ten years ago as far as comfort and noise.

    I think RichV said something about this. I get a feeling of relaxation when I put the mask on. I guess a conditioned response or the anticipation of a good night's sleep.

    The CPAP has really helped me. My insurance paid for quite a bit, 80%. It's still not cheap.

    I would highly doubt that any doctor would prescribe these just to sell them. You can only get a CPAP if you have a sleep study that shows this. I had to go through training with a respiratory therapist learning how to use the CPAP (I actually have what is called an APAP. It's just a different setting.). I have some adjustments with the settings but this is to be expected.

    Floyd, here is a good resource for apnea and other sleep related problems. There's also a forum.

    Hopefully it has information about your specific sleep condition. They have trained sleep specialist and when I have posted a question I get an answer that day.

    Bottom line the CPAP has helped my pain and energy. That being said I still have fibro, RLS which can disrupt your sleep so it hasn't treated everything. I had no idea how damaging sleep apnea is to the body.

    Make sure you get a doctor certified by the American College of Sleep as not all PCPs know the ins and outs of sleep problems.

    I have a friend who was told by her doctor she couldn't have sleep apnea as she was not obese. She insisted on seeing a specialist, had a sleep study and she did indeed have it.

    Good luck.


    ETA I see you have severe apnea. I would strongly encourage you to see a sleep specialist as this puts you at risk for strokes, high blood pressure and even brain damage. It sounds like your doctor basically knew squat about sleep problems.

    Did the CPAP decrease the number of apnea events? If it didn't then it may need to be adjusted or you need a different type of machine. Hope this helps.

    [This Message was Edited on 11/29/2010]
  16. Jayna

    Jayna New Member

    Central sleep apnea (where your brain gradually stops sending the signal to breathe appropriately) is not the same as obstructive sleep apnea (palate sags or fat/muscle compresses the airway).

    I have a bit of both. My overnight oxygen saturation has gone down below 70% at times. I got a CPAP five years ago and I think it might have saved my life. It took me a good month or more to get used to it; a lot of people won't take that long but I was desperately ill.

    When I have to sleep without it now I don't sleep soundly, never get to Stage 4. The damage (or rather the lack of overnight repair/reset) to my nerves and immune system the next day is obvious, and my energy level drops 20-30 points overnight. It's a vital part of my management plan.

  17. gapsych

    gapsych New Member

    I was just coming back to add about central apnea. Talk about brain fog. Thanks for adding this.

    If I remember correctly, untreated OSA can actually cause the CSA. Is this correct?

    Like you I feel that that it probably saved my life. My sleep doctor said if this had continued I would probably be on the brink of heart failure in several years. I had been snoring for at least 12 years but have no idea when the apnea actually started. I was thinking my increased pain and low energy level, especially the previous year, was from the FM.

    There is a study that shows decreased white matter(?) in untreated apnea. However, one study has shown that it can be replaced in about three months after starting CPAP. I will try and find that study as I found it fascinating.

    Take care.



    Football players are at high risk for OSA/CSA. Can you guess why? They have large necks and that is a risk factor.

    [This Message was Edited on 11/29/2010]
  18. gapsych

    gapsych New Member

    Unfortunately, spouses of snorers can become sleep deprived. Hopefully, not the other members of the household as that would REALLY be loud!! :>)

  19. krock

    krock Member

    What are the recommended/most effective treatments for central sleep apnea? How does cpap work for this if it is brian signals causing the problem?
  20. gapsych

    gapsych New Member

    This is a reply to a person who has central apnea. Interestingly enough the title of the thread is, "But, But, I am 25 and healthy" I included all of the post as it has some good information. For more information go to the site below.

    "Age, race, sex, how healthy you are mean nothing to sleep apnea. If you got it you got it. I've seen kids with worse apnea than you. You say that after your second test you were dx with Central Apneas. It is uncommon to see that.

    However there are a group of people that are, one could say, allergic to CPAP. Meaning once CPAP is applied and you go to sleep, when obst. apneas, snoring, hyponeas are seen the tech increases the pressure. What happens then is some people start to develop longer periods of apneas changing from obst to centrals. Sometimes increasing the pressure will resolve the issue, other times you maybe switched to BiPAP. Depending on the lab, if the centrals don't resolve or get worse, the Dr. may order a 3 rd study in which BiPAP ASV will be tried. That has been very effective in resolving it. Also looking at medications that can play a part in it as well. Taking any opioids? Opiods + CPAP = Central Sleep APnea. Heart disease -CHF? Its seen in that population as well."

    Maybe others will chime in with more information.[This Message was Edited on 11/30/2010]