Hello,

I am new to this Forum, and I wondered if there is anyone who could help me (us).  My partner was diagnosed with CSA late last year, and had difficulties in getting to grips with his machine, but then a few months later it was fine and he was sleeping a lot, then he went back to work and everything went back to how he was before.  He has fits and starts of coping with the machine, but I feel part of the problem is he goes to bed with his mask on, fine, but wakes up in the morning and finds he has taken his mask off during the night, and of course we don't know when this has happened, as we dont live together as yet, I cannot obviously keep an eye on things.  Has anybody else had the same problem, if so what did you do to alleviate it?

Another problem which has just happened this weekend, and is very worrying, is that yesterday morning he woke up without his mask on again, but his right arm had no feeling at all, he thought that perhaps he had been lying on the tube and that was the reason, but today he still has the same problem, no feeling in his arm, he has pins and needles in it, also his shoulder aches, his right leg is shaking as well.

Now I dont know if this is associated with SA but would be ever so grateful if there is anybody who has experienced these symptoms and would no the way forward.

Thank you

jinsee

Hi jinsee and welcome!

Taking the mask off subconciously is fairly common amongst new CPAP users, it is just something that 'happens'.

Your partner can use modern medical tape and tape the mask to his face in a few places.  This is often enough to serve as a reminder to the subconcious, not to pull the mask off.  Paper, cloth, or foam medical tape that is skin and wound friendly will do the job and not harm the mask, nor be difficult to remove in the morning.  The adhesive bandage tape of years past should not be used as the adhesive does not come off the skin or mask easily.

Many people have had luck by giving themselves a "good talking to" about leaving the mask on, right before they go to sleep.  No kidding!  It really has worked.

If your partner wakes up at any time, and finds the mask is off, he should put it back on and go back to sleep.  If it is almost time to get up, then he should get up early.  He should never go back to sleep without the mask, once he discovers it is off.  It won't be long before he leaves it on.

If the mask is leaking, he can try using some Mack's "original silicone putty" ear plugs, these are soft discs that can be stretched and rolled into a thin ribbon or gasket for leaks (the thinner the better).  It has an added advantage of being a bit sticky and likely to add some resistance to removing the mask.

The tape and the scolding each have a great track record, if the mask is also leaking I suggest using it with one or both of the others

Best of luck, blessings,
--pseudonym

Hi pseudonym,

Thank you so much for making me welcome and for taking the time to reply.

I will show him your email for him to read and hopefully act on it, perhaps this 'putty' could do the trick!

Once again thanks a lot!

PS  I know he is more worried at the moment about his right arm, but perhaps that could be a lack of oxygen as well!

jinsee,
I think your partner ought to call a doctor about that arm and the shaking leg. I do not think this is something that is commonly experienced with CPAP. It could be something serious.
Good luck.
Grandma


_________________
ResMed Quattro Full Face Mask
ResMed S8 Escape with heated humidifier
Pressure set at 11

Hi jinsee,   I forgot to respond to that part of your post!

Chances are he is just sleeping in one position for a longer time, more pressure toward the right or perhaps over on his side, pinching the nerves to his arm and leg.  I have done this many times.  CPAP helps people get to the later sleep stages and more quickly than sleeping with untreated apnea (that's why CPAP helps with fatigue and mental fog).  A lot of CPAP users end up staying in one position and are not tossing and turning as they did before.

The answer is a different sleeping position or possibly a new bed.  Many of us do not notice our mattresses are not up to the job because we've tossed and turned for so long.  Sleeping in one position is the fastest way to find out the mattress does not give proper support as it ought to do.

Even so, Grandma is correct, asking a doctor about this is the prudent thing.  Something that might be a symptom of a larger problem, could so easily be averted from becoming that problem, by a simple phone call or trip to see the doctor.

Blessings,
--pseudonym

Hi pseudonym, (and everyone else)

Just to let you know my partner did what you suggested with the tape, and yes it seems to be working, the first night (3 nights ago) he felt claustrophobic and wrestled god knows how many times to take it off, but it woke him up so he knew he had to persevere which he did, of course that made him naturally tired from waking up so often but he felt so much better, and is continuing and succeeding with it, so its only a matter of time before he will subconsciously be able to not try to pull it off and get a decent nights sleep, and he is beginning to feel more human!

Thanks for all your help.



PS  The arm seems to be better now - weird!

Hi Everyone,

Hope you don't mind but I need some more questions answered if possible and help!

As I said in my last mail, my partner is getting to grips with using the tape be it for about 5/6 nights now, unfortunately last night he fell asleep watching a film, so didn't wear his mask!  (I wish I was there with him every night to make sure he does wear it) but cannot be, so am doing my best to make sure he perseveres.

At the moment, he finds it very hard to leave his 'safe little house',  for example he was coming over to me for a couple of nights last week, had his bags packed but when I got there to pick him up (he cant drive the distance about 48km) he said he just couldn't do it, so stayed home, he says he feels 'safe' there, he also said he feels so rotten letting me down, I try to see him on a regular basis, be it difficult because of logistics and work, but when I do see him sometimes after an hour or so he wants me to leave as he cannot cope with anybody there, now its not because he doesn't want to know or love me cos he does, but he doesn't want his landlady or anybody else there either talking to him so will retreat indoors till it is 'safe' to come out, he wants to do things outside, he hates the way he feels its no life - he goes shopping and just want to get it done and get home, and if anybody gets in his way he has these feelings that he wants to bash them! !has anybody else suffered these symptoms?

He was getting on so well before with his mask and everything was getting back to near normal until he went back to work - then it all went down hill again, so has had time off again as 3 weeks holiday, but what worries me is that he goes back next week he knows and I know that he will not be capable of doing this.

He makes so many plans to see me and do things, and finds he just cannot always carry them out, which frustrates him beyond belief, and me as well of course, he had pulled himself off the tablets he was taking but is back on them again, (much to his disappointment)  one for depression and the other a tranquilliser which makes his mood swings up and down like a yo yo!  He also has the usual tiredness, apathy, confusion, shaking etc.

I know there is no miracle cure but I so want to be able to help him more, he is a typical male, with lots of pride, integrity, and feels he has lost this, and feels awful for not being a man to me, I do my best to re-assure him that he is a man to me - a very special lovely man whom I love very much.   I am doing a daily list of things for him to make things clearer.  He has made such good progress in the last week with 'letting me in to help him' so that is half the battle, its the other half we need to try and sort out.

He feels that he wants to seek psychiatric help and indeed I am searching now for that, do other SA sufferers feel this way as well?

Has anybody else got any suggestions as to what else I can do- thanks so much!