Lupus and Sleep apnea

[Louisa65]

Please can anyone help I have been given a CPAP machine and I have tried 4 masks each keep lifting off my face, so no seal and the air pumps hard into my face, persevering but so so tired. Worried as the Lupus has damaged my right lung, could that be stopping the machine inflating my windpipe? Been so upset as if not sorted will have to surrender my driving license received a letter from the DVLA. The furthest I have drove is 15 miles to hospital. Go 5 miles to town once a week never had an accident yet! I so wish my GP had never mentioned this as life hard enough as it is! Thought it would be so simple, walk away machine mask go back now and then. I know there are surgical procedures really think if not sorted by Monday I will have no choice but to go down that route.

I have read so many good reports, why me? So many problems, asked to stop overnight so they can observe me, no facilities, what a joke! Had initial sleep study by a monitor at home.

Kind regards

Louisa

[friendly2013]

Hi, Louisa 65,

I too have a Cpap machine. I love it hate it in equal measure. I've had a few different masks over the years. I have a full mask because I breath through my nose and mouth. You don't say which kind of mask you have. You don't say how long you've had it. It took me quite a long time to get used to it , at first I would throw it off in the night then wake up later ( probably stopped breathing) and put it back on. Now I wear it all the time. I have found I need to wear my mask tighter than the nurse at the clinic thinks it should be worn. In the mornings I have furrows where the mask has been but hey ho I carry on. I also have a water chamber which heats up and helps with dryness. This latest mask I have is the best design yet it's a Res Med air fit 10, as far as I can see. It sends air out of the top rather than the front and it has a fitting which means you can take off the tube without taking off the mask, ie if you need to cough. Don't know if you've experienced it yet but it's hard to couch out when the air is being forced in.

Hope this has been of some help to you. Don't hesitate if I can be of further help.

Good luck and don't give up you'll get there in the end.

[friendly2013]

Further to my post I have never been asked to surrender my driving licence nor has it even been suggested. Don't know what you can do about it but I'd question the decision and appeal if it's possible. If the Cpap gives you more quality sleep then it should follow you won't be as tired during the day and therefore much less likely to fall asleep at the wheel. I used to feel drowsy when waiting at traffic lights I have not hidden this from anyone but still no one mentioned me not driving.

Again good Luck.

[Louisa65 in reply to friendly2013]

Hello

Thank you for your reply I have had it 3 weeks and mine to is that mask, its the pink ladies version in extra small and the res med machine and dehumidifier.

It was the same again last night put up with it lifting twice then had to give up just slept without it, was so tired. I have tried to video it as soon as I wake up with some success but looks like the mask is so tight! Tried it in all positions. I feel at the moment I would have any surgical procedure as I am not receiving much help can't get an appointment drop in clinic mon and fri, it a long gap between when it like this!!!

[minnime63]

Hi there, I have a cpap too, just the nose mask. It did take a week or so to get used to it... I laughed when the doc said I'd throw it off in the night, but I did, several times! I had a follow up after a month that showed the waking up choking events had gone from 10 an hour to 0.7, so it's well worth persevering. You can get different size masks, I had to change to a smaller mask as I was having the same issues as you. And, as friendly2013 said, have to wear it pretty tight (and suffer the morning tramlines!) but the point is, IT WORKS! Hope you manage to get it sorted - perhaps ask for another fitting session?

[Louisa65 in reply to minnime63]

Thank you I am off for a fitting Friday again, just going on too long getting extremely tired. Sounds as though you have done really well with it though.

[minnime63 in reply to Louisa65]

Persevere if you can. It is a nuisance to begin with but I do hope you can get used to it - definitely worthwhile x

[friendly2013]

I can't imagine the nurse hasn't thought of this but possibly the pressure could be turned down. Later when your used to it it can be turned up over time. As you say you've only had it 3 weeks, it's very early days. If you throw it off don't worry it takes time. Tighten it though I'm sure it will help. It's a slow process. Please Don't give up.

[Louisa65 in reply to friendly2013]

Hi

They never have mention this, thank you I will suggest it today

Kind regards

[LUPUSadmin]

Hi Louisa,

Sorry to hear that you're having problems with your machine. It would be worth telling your doctor about your concerns with your right lung so see what they recommend. Who asked for you to stop overnight? Keep us up to date.

George

[Louisa65 in reply to LUPUSadmin]

Hi George

I want to stop overnight seems a sensible option, a lot of wasted money on different masks. Going with my video today, maybe that will help. Just out of hospital now with pleurisy, feeling very very fed up!

Kind regards

Louisa