Still struggling after 5 years

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Derek M
Posts: 1
Joined: Wed Dec 13, 2017 8:04 am
Location: Salisbury, Wiltshire, United Kingdom of Great Britain and Northern Ireland

Still struggling after 5 years

Post by Derek M » Thu Dec 14, 2017 4:11 am

If you look at my reports on the Resmed MyAir website you would think I am a 'model' patient! it is clear that what is reported and transmitted to my local sleep clinic relates to the HOURS WORN Not the actual sleep achieved. Here in the UK OSA has to be notified to the drivers license authority. If I do not use my CPAP machine (averaging 4hrs per night) I can be banned from driving. If I fall asleep at the wheel and cause an accident and cannot prove that I have been using my machine this becomes a criminal activity. Thus I am absolutely resolved to wear my mask every night. My life would be crushed if I am unable to drive, manage my business, and live in my beautiful country home.
Let me explain my medical history, Diagnosis was noted when I went to stay with a Doctor who heard me snore and told me I stopped breathing. He insisted I follow this up with a visit to my local Doctor who in turn sent me to a sleep clinic. I was diagnosed with sever OSA, I had over 30 'incidents per hour' on a finger monitor. I was immediately issued a CPAP machine and after several Mask trials settled for nose pillow type mask. Now I have to say that before diagnosis I was not aware that I had OSA didn't feel my sleep was poor, functioned perfectly well. Yes I knew I snored, yes I could sleep(catnap) at will i.e. after lunch or in the evening or even at my desk if not busy. I always woke after half an hour or less and was able to work without interruption. On occasion I would pull over and sleep for a while in the car before continuing a long journey. But I am not aware of EVER falling asleep without it being a planned event. It was a great shock be told I must now use a CPAP machine for the rest of my life and that I may not drive UNLESS I use this wretched machine!

Why do I call it a wretched machine? Well i do not believe my sleep has been improved if anything it is much worse than before I started using the machine. What happens now is that the mask prevents me sleeping every time I move it is dislodged and I am blasted by air in my eye or the mask starts to flutter and wakes me. My night now goes something like this I go to bed around 10:00PM put on the mask cannot settle due to mask or sound of surplus air exiting the nose piece, I end up sitting up and reading for a while then settling down and trying again. If I am still awake at midnight (usually) I'll put on some mindless drivel on net flicks to watch til I fall asleep. I'll then wake at around three am for a 'comfort stop' and only after that will I get any sleep - I'm awake again around six and always up by about 06:15. so according to my Resmed sleep report I'll get a 100 score - it sees that I went to be at 10:00 PM and got up at 06:00 - 8hrs sleep. That would be wonderful but in reality all I've slept is from 03:00 - 06:00. Three hours and I feel like death. Yes I've heard all the stories mask isn't properly adjusted etc don't use the iPad, lay down peacefully etc etc but when I try that I just spend long hours tossing and turning. I cannot find a solution, I've had a nasal operation to open up my airways, I was promised a further operation to 'scar' the soft tissues which cause the OSA - a definite cure I was told by the ENT surgeon. But, in the event was told that due to my age 71 they preferred NOT do do this operation particularly as my nasal passages were now so much more efficient. Here I am 5 years after starting with this machine deeply regretting I ever went to stay the night in the house of a doctor! I feel as though I am being blackmailed into using it as a condition of keeping my driving license - a man who used to drive all over Europe, fly all over the world and rent cars in various countries in my 'old' job in International Sales. I'm at my wits end!

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Pugsy
Posts: 65354
Joined: Thu May 14, 2009 9:31 am
Location: Missouri, USA

Re: Still struggling after 5 years

Post by Pugsy » Thu Dec 14, 2017 6:07 am

Welcome to the forum.

So sorry it had to be in this situation though and you have gone so long without a good night's sleep.

Exactly which nasal pillow mask are you using? If the vent noise is annoying...are you aware there are nasal pillow masks now that have the vent noise so diffused it is a non issue for most people?
As for it dislodging when you move...are you sure you are using the correct size nasal pillow and have it optimally adjusted for tension? I use a nasal pillow mask and I toss and turn and move all over the bed because I can't stay in any one position very long (bad back) and my mask doesn't move or dislodge except on a rare occasion.

When you have time could you please add your equipment to your profile like I have mine. It helps us help you faster if we can see at a glance what equipment you are using.
Also please add your pressure settings if you know them to the comment line in the profile.
wiki/index.php/Registering_Equipment_in_User_Profile

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