Sleep Apnea Frustration Community Group
You've tried everything but still not feeling better, what next? I've gone to the extremes to make this go away, from C-pap machine to major surgery where I was told has a 95% success rate. How could I be in the 5%? I'm now looking at other surgeries because this affects my life.
Hi all
well I managed to get over my severe alcoholism 4 years sober now, then I stoped smoking 2 years ago and hey
the doctor now tells me I have sleep apnea and the best things to give up are drinking and smoking, but I have already done that.
On a more serious note thank god I did, I am now doing all that I can to improve my condition, I am on Cpap, but I am strugling to find a mask that realy suits, the NHS are doing something but I do not truly feel enough, so I am now looking at private alternatives
I won't go on, just saying hi and looking forward to sharing with you all
Trickey
well I managed to get over my severe alcoholism 4 years sober now, then I stoped smoking 2 years ago and hey
the doctor now tells me I have sleep apnea and the best things to give up are drinking and smoking, but I have already done that.
On a more serious note thank god I did, I am now doing all that I can to improve my condition, I am on Cpap, but I am strugling to find a mask that realy suits, the NHS are doing something but I do not truly feel enough, so I am now looking at private alternatives
I won't go on, just saying hi and looking forward to sharing with you all
Trickey
I see your last posting was last year! have you found anything you get on with???
Best wishes Karol
Yes over a year now, and what a nightmare, NHS diagnose me with Sleep Apnea, Air Products dump a CPAP machine to me, very little training and virtually no support.
I end up buying Mask after Mask Nasal, Full Face, oral only, all total pain, finally I try Sleep Wever and its the best thing on the market, still not the most amount of fun wearing any kind of mask, but at least this one is comfortable, and it looks less like a life support aid than any of the others, got mine from EU Pap highly recommended.
NOISE my NHS cpap machine broke (A Remstar M Series), I found it noisy,too. Air Products took 5 weeks to get me a replacement, during that time I purchased a Remstar System One Auto Cpap, expensive, but a further improvement over that provided by the NHS, quite better control and understandable reporting.
Whilst we must be grateful we got a NHS machine, the feeling of abandonment can be as devastating as sleep apnoea it self, the quality of equipment supplied, is certainly beneficial, but it is a long way from getting to the route of the problem or in my case it was.
I am now considering my options carefully, whilst privately the equipment is expensive, you do get human assistance when needed and my new machine was delivered in 24 hours and not 5 weeks.
5 weeks without a machine, made me tired and could as far as I am concerned have been life threatening, in the end I bought the new one, then eventually the NHS one was delivered.
I wish I could afford a private doctor as the NHS want to see me just once a year, and that time is spent to see if I have developed anything worse rather than trying to help me with the problem
Personally I feel that the NHS is my area are failing on this one
Hoping your having a better experience, and that maybe some of my experience may help you
I then washed my swift mast and could not for the life of me find out how it went together... nobody had showed me in Papworth Hosp. how to do this, or, how to take it apart for washing, in fact she did not mention how to look after the mask... at all.
So I had to ring them again, this time my phone call went to the ward (Papworth Hosp.) and a nurse described to me how to put the mask together again... I was almost in tears at this point.
Several weeks after that, I tried ringing again as I was/am feeling hopeless, it was an answer phone and they said somebody would get back to me...no body did! I have have not bothered since...
So, I am just trying to get on with it the best way I know how. If I get a few hours, great, if not I always have the next night to try. In the whole eight weeks I have had it I have only had three nights of six hours!!! that is the most I have worn it, otherwise it is an hour here and two to three hours there.
Your letter was so helpful, write again and let me know you are getting on, look forward to hearing from you soon.
Very best wishes
Karol x