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  • CPAP Machines – do they work for breathing issues while sleeping

    Posted by Denise ODonnell on January 5, 2023 at 8:30 pm

    I was diagnosed two (2) months ago, and in addition to the muscle cramps, swallowing problems, eye twitches, I have problems with breathing (not from my lungs), and someone suggested I get a CPAP machine for sleeping at night.  I do have an adjustable bed-frame, and it works pretty well. Has anyone felt they needed a CPAP machine ?

    Lynn Sheen replied 1 year, 5 months ago 13 Members · 0 Replies
  • 0 Replies
  • Andy Coyne

    Member
    January 6, 2023 at 5:36 pm

    I have obstructive sleep apnoea and use a CPAP. I also experience breathing issues (no lung disease). It really does help me sleep to the point I find it difficult to sleep without it!

  • Deleted User

    Deleted User
    January 6, 2023 at 8:10 pm

    You will probably need a sleep study and a BiPap Machine. I have had one since the day I was diagnosed…2009.

  • Kent Moore

    Member
    January 6, 2023 at 8:43 pm

    Not sure if this helps you in your specific situation, but I already used a CPAP machine for apnea that was diagnosed years before my MG.  I can tell you that during those periods when I’m feeling a bit exhausted and labored in my breathing (which is sometimes, for me, exacerbated when I lie down), firing up the CPAP provides instant relief.  It’ll be interesting to see if anyone has tried one who doesn’t experience sleep apnea already…

    I wish you all the best —

  • Mark Shear

    Member
    January 6, 2023 at 8:58 pm

    My neurologist said I might need a cpap and I did not think I did. Got test and apparently I do when I am in deep sleep. Still have to take a sleep study with the machine so I don’t have any experience or  knowledge to impart.  I really didn’t want to add more to all the MG stuff but we will see if this helps. We also have an adjustable bed which is helpful with breathing when you have a respiratory illness like a cold or worse.

  • Donald Andelsman

    Member
    January 6, 2023 at 9:07 pm

    I have G MG & use a Cpap machine for sleep apnea.

  • Becky

    Member
    January 6, 2023 at 9:15 pm

    I have been using Bi-pap since I was diagnosed. Game changer for me. C-pap is usually not appropriate with MG according to my neurologist and sleep specialist.

  • Jennie Morris

    Member
    January 6, 2023 at 9:16 pm

    I have breathing problems caused by diaphragm and throat weakness. I use a non-invasive ventilator (NIV) with oxygen connected at night. Unlike a CPAP, this monitors my breathing and alerts if I stop. I have an Astral 150 and it has been literally a life saver.

  • Jennie Morris

    Member
    January 6, 2023 at 9:19 pm

    I have breathing problems from diaphragm and throat weakness. I use a noninvasive ventilator (NIV) with oxygen connected at night. Unlike a CPAP, it monitors my breathing and alerts if I stop. I have an Astral 150 and it has literally been a life saver.

  • michail

    Member
    January 7, 2023 at 2:46 pm

    The only real use they have is if you are close to respiratory failure; I bought one after I ended in emergency; it can help a little, but not when sleeping. It was kind of backup, if you are travelling, far from emergency services;  in that case, it may help. But then, any air pump (even a tyre pump), o diving equipment (air bottle with reductor)  can work well, and better than CPAP.

    CPAP provides relatively low extra pressure, which can help a little bit, but not enough;

    I was mad in emergency room that they told me it was either intubation or nothing. What people with myasthenia really need is relatively high pressure air supply which they can control themselves (i.e. you take a breath through hose, allowing the pressure to fill in your lungs, and then you exalem removing the hose (I got rid of the CPAP mask)). This was at least my case a few years ago.

  • Monica

    Member
    January 7, 2023 at 8:49 pm

    Denise c-pap machines are not good for mg’ers we need to use a bi-pap machine. I used for one 30 days while I was having breathing issues it did help but it was awful could not sleep for more then 4 hours with it on

     

     

  • michail

    Member
    January 8, 2023 at 12:24 am

    The only real use they have is if you are close to respiratory failure; I bought one after I ended in emergency; it can help a little, but not when sleeping. It was kind of backup, if you are travelling, far from emergency services; in that case, it may help. But then, any air pump (even a tyre pump), o diving equipment (air bottle with reductor) can work well, and better than CPAP.
    CPAP provides relatively low extra pressure, which can help a little bit, but not enough;
    I was mad in emergency room that they told me it was either intubation or nothing. What people with myasthenia really need is relatively high pressure air supply which they can control themselves (i.e. you take a breath through hose, allowing the pressure to fill in your lungs, and then you exalem removing the hose (I got rid of the CPAP mask)). This was at least my case a few years ago.

  • Martin Teitel

    Member
    January 8, 2023 at 9:26 pm

    In 2011 after 11 days in intensive care, my neurologist told me to get a bipap. I’ve used it every night since then. It’s not perfect – I’ve still had some crises. But instead of zipping to the hospital, I sit up in a chair in the living room with the bipap. It is a solid help, for me.

  • Fred Besthorn

    Member
    January 10, 2023 at 10:55 pm

    Denise,

    Some good advice here.  I have had MG for almost 20 years. I was diagnosed with obstructive sleep apnea many years ago but only started used a CPAP machine back in July of 2022.  After getting my 2nd covid booster (big mistake for me) back in Sept. 2022, my MG went off the cliff and went into crisis in mid Oct 2022. Have been on prednisone, mestinon, Imuran, IVIG infusion and Rituximab infusions since Nov. 2022. Problems with diaphragm and shortness of breath. My CPAP has been a life saver at night. I suppose it depends on the extent and intensity of your breathing difficulties but in my case the CPAP has been very helpful to help me breath easier and more calmly at night while trying to sleep.  I also have an adjustable bed which I incline a small degree at night and that also helps.  Was glad I had been on CPAP machine before flare-up of MG, however. I was already accustomed to it and had made the commitment to use it every night.  It can be difficult to get used to (especially getting used to mask on your face) and may not be the best option if you are in the midst of a flare-up/crisis.  Good luck.

  • Sally Treppendahl

    Member
    January 11, 2023 at 8:22 pm

    After a sleep study was ordered by my neurologist I was shocked to learn how often I stopped breathing during the night. I now use a bi-pap machine at night. I have used it for about 4 years and I won’t sleep without it. I never thought I would travel with it, but I do. Using it helps with my fatigue and strength.
    I would encourage anyone with MG to ask for a sleep study.

  • Robert B.

    Member
    January 11, 2023 at 8:23 pm

    I’ve had generalized MG for nine years and have been on IVIG the entire time. For most of those years I would wake up in the mornings tired, which I attributed totally to the MG.

    But recently I was tested for sleep apnea and I have it. I’ve been on a CPAP for only a couple of weeks now, and while I sometimes still wake up tired, I believe it’s helping.

    I’d highly recommend that you take the sleep test. A nurse that attended to me said they have a number of people that come in after they’ve had a heart attack or stroke that state they were pretty sure they had sleep apnea in the past, but ignored it.

    Best of luck to you!

  • Catherine Mahler

    Member
    January 11, 2023 at 8:34 pm

    I have been diagnosed also with obstructive sleep apnea. I tried a CPap machine, but the strap bothered my head and I couldn’t sleep. I would like to try the “Inspire” surgical treatment, but my neurologist tells me I am not a candidate because of the MG. Could someone please explain to me what a Bipap machine is? TIA.

  • Robert B.

    Member
    January 11, 2023 at 8:35 pm

    Correction. I have an APAP machine, not CPAP.

    With the in-clinic sleep test (I had the self-administered one at home, too, which was not as accurate), they can also determine the pressure flow you need and order your machine pre-set for it. Mine is set for 12-16, which is pretty high.

  • John Shanks

    Member
    January 11, 2023 at 8:35 pm

    I was diagnosed 3 years ago and my major issue is breathing/diaphram weakness. I had a sleep study and was told I needed a CPAP. I had difficulty breathing out while trying to overcome the pressure.  Even the BiPAP set at 6 and 3 was too much. my O2 levels dropped dangerously low. I would  suggest that someone with a similar condition have someone monitor your use until you know it is not a problem for you.

  • Emily

    Member
    January 11, 2023 at 8:40 pm

    Hi! I was diagnosed with MG 1.5 years ago and one of my main symptoms is shortness of breath due to muscle weakness. I’ve been intubated twice. I also have an adjustable bed but man, my cpap has been totally amazing!! Highly recommend! It’s easy for my to sleep with and not uncomfortable at all. Mine is really quiet too.

  • Emily

    Member
    January 11, 2023 at 8:46 pm

    Denise-I was diagnosed 1.5 years ago and I have a cpap which works great for me! I get short of breath doing minimal activity(I’m 38yrs old and used to run marathons). Live my cpap. The bipap was too much bulk and hard to exhale for me. But everyone is different. After being intubated twice, I totally love my cpap. Good luck!

  • Mary Ann

    Member
    January 11, 2023 at 10:43 pm

    Like some of the others, I was on cpap w/2 lts oxygen at night….before diagnosed with MG, but I feel I had it long before diagnosed with MG because my shortness of breath which was neither from lungs or heart (say the lung and heart doctors) I appreciate the higher oxygen levels it provides and though it awakens me as pressure goes up, I’m glad to have it!

  • Joanne Gurion

    Member
    January 12, 2023 at 9:53 pm

    I have GMG. My neuro and cardiologist recommended a sleep study which I will do. Can anyone explain the difference between a BIPAP and a CPAP machine?

  • Lynn Sheen

    Member
    January 13, 2023 at 2:01 am

    For clarification — two different questions are being addressed/confused in these comments.  These two issues should be understood to be separate questions.

    1) CPAP for sleep apnea issues tend to be independent of gMG, so see general information on when a CPAP can help.  My understanding is that the CPAP alone doesn’t provide the necessary breathing support to help rest breathing muscles impacted by gMG — which is what I’m guessing you were really getting at (trying to ask) with your question.  See #2

    2) on the other hand, using a non-invasive *ventilator* like a Trilogy or ResMed Astral can help the breathing muscles rest and recover for people who have gMG.

    For what it’s worth, my understanding of and experience with #2 is as follows:

    I have gMG and use an Astral 100 non-invasive *ventilator* without oxygen on settings specifically recommended for people with gMG.  It is non-invasive, meaning it uses a mask similar to those used for CPAP machines.  My machine is often mistaken for a CPAP, because it’s use and looks are so similar.  However it has functionality of a full ventilator which a regular CPAP does not.  The gMG specific functionality allows my breathing muscles to rest and thereby recover quicker.  If I’m extra fatigued I will use it during the *day* when I’m fully awake; which allows me to recover faster from my fatigue.  The Trilogy has a similar gMG specific circuit (although it is called something different) which functions in a similar way.  Both machines can be useful if someone with gMG suffers continuously and specifically from diaphragm and/or axillary breathing muscle fatigue.  I have been using my Astral for years and my need for it during the day varies depending on how tired my breathing muscles are.  Generally I use it every night (or more), but unlike a CPAP I don’t have the same dependency on it if my breathing happens to be strong enough.

    I hope this helps clarify some of the inconsistencies in the previous responses — which in some cases were taking about these two different things and were confusing the two at other times.

    Every day I am limited by how well my breathing muscles are functioning.  I spend the best part of my day slowly exercising/strengthening my breathing muscles, knowing I have the ventilator to help them recover as needed.   The non-invasive ventilator (amongst other things) is an important part of the program I use to improve my alertness and the quality of my life.   I work hard to keep my breathing muscles as strong as possible and the result is that all that *rest* time I have to spend anyway is of better quality.  Another way to think about is that the ventilator helps mitigate risk; I can exercise with much less fear of an exacerbation.  If I over do I can rest on the ventilator until I’m stronger again; earlier intervention at home!!!  Everyone with gMG walks a fine line determining/deciding *how much* we can do every single day, maybe my sharing my experiences will help others.

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