Help! Told by sleep doc "CPAP isn't for you" after <6 months

[Kokopod]

Hi everyone,

I'm quite upset and am in need of some advice.

I was diagnosed with Upper Airway Resistance Syndrome about 8 months ago now. I live in the UK, and was promptly referred to my local NHS hospital's sleep department for treatment. After a little under 6 months of trying to get on with the CPAP machine I was given, I still found it to be very uncomfortable to the point of it being unusable - I could fall asleep with it ok but then always pulled it off during the night when I woke up. (If it's relevant, I had a ResMed brand machine with a humidifier and a nasal pillows mask.)

I have been keeping regular appointments with the sleep technician, who is aware of the problems I've been having. She has adjusted the settings on the machine to try and make it more comfortable on multiple occasions. When I last went to see her she asked for the machine back, and I was quite happy to give it to her, as I dislike it intensely!

However, she has not offered me any additional treatment. I asked her whether another kind of machine, such as Bipap of APAP, could be offered. She avoided answering my question, evasively saying that they would be "no different" and wouldn't "be any better" than the machine I just returned. She concluded the appointment by saying that "maybe CPAP just isn't for you", and that I was welcome to go back and try it (I.e the same mask and machine) again in the future if I wanted.

So now I'm stuck without treatment for my UARS... There isn't another hospital locally that offers CPAP/other treatment on the NHS, which means I would have to go privately, which I can't afford to do as I come from a very poor household. I would go to an NHS clinic further afield if I could, but I live in Wales, the other clinics are all in England, and English hospitals will not take on Welsh patients if there is a Welsh hospital that provides any amount of support for the same medical condition. And the hospital I have just been discharged from won't offer me any other treatment or support!! Moreover, there is no one overseeing my case, so I haven't got a doctor or specialist to go to for any advice and guidance. My family and I are battling this alone now.

I would be really grateful for any advice as to what to do, particularly from other CPAP users with experience of the NHS... I'm stuck, tired all the time, with no end in sight. What should I do? Go back to using the same machine again? Shell out a small fortune on private treatment? Seek to rent or buy a machine online? I'm on the verge of a breakdown due to fatigue and hopelessness

Apologies for the long post.

[Overflow]

Try and get the machine back and ask to try different masks. Try a full face mask and as many others as they'll let you try. Post the data from the machine here and see if you can get any pointers to help with your compliance. Keep persevering, they can't really refuse to treat you if you accept their treatment (that being the resmed and mask(s)) for now.

[The Latinist]

Unfortunately, I think "no different" here means "more expensive and not covered by NHS." We've had several people on here lately who were only able to get a straight CPAP, and often not even data-capable machine through the NHS. Please don't give up on CPAP treatment -- it literally could save your life. If that's the only machine you can get, get it back as soon as possible (ask for a different mask if possible -- there are lots of options and we can offer suggestions). Come here, enter your equipment in your profile, and tell us what your specific issues are, and we will try to help you fix them. You're going to have to take your therapy into your own hands, I think. And with the help of the great people on this board you can do it.

[Kokopod]

Thank you both for your advice. Thankfully the machine I was offered is data capable, so I should be grateful for that at least if I do get it back!

[knothead]

If they think u dont need cpap and u do u can always buy one from this place. There are always good used and new ones on here, that way u could tell them to go away and leave u alone...just a thought.

[CpapWife]

Often the difference between a cpap and apap is the settings. For many people they need an apap, to the point where some good Drs only prescribe apaps (one night in sleep study does not predict all your sleeping nights at home, the environments are too different and things change night to night, even hour to hour).

If you got it back, you could figure out how to make it an apap and that might help - the sleep Drs/medical equipment provider companies try to say only they can do it, but it is very easy to change most settings and you can use the machines software to find what range works best for you (monitoring it over time). Ask for help here, someone mentioned youtube.com has the how to change the settings info. But I would not mention it to your DME/Drs office, they want to be the ones that know most and control things (even more so when they are not helping you find something that works).

There can be conditions where a cpap/apap will not work best for you, again seeing your software results will help people here steer you in the right direction.