Sleep Apnoea/apnea

[TCP]

Hi

I have ME/CFS and extensive Autonomic and Peripheral Neuropathy. I've been having the symptoms of Obstructive Sleep Apnoea for several years and I finally saw a 5th GP who actually referred me to a consultant. I am currently being checked out ahead of a possible CPAP trial. I have all of the symptoms of OSA, including heavy snoring, stopping breathing, restless sleep, frequent waking, sleep paralysis, night terrors, unrefreshed sleep, extra daytime fatigue and lethargy. I score 18+ on the Epworth Sleep Scale. I have put on 5 stone in weight since on Gabapentin and antidepressants which hasn't helped, but the snoring started before the weight-gain.

How many more Autonomic Dysfunction sufferers have this problem?

Thanks

TCP

[blueskies]

Hi TCP,

From what I understand quite a few of dys/pots people have sleep apnea. I knew I had it for years -- sometimes you just know these things -- and finally I was prompted by a member of a no longer existing pots forum to go have the test for sleep apnea. This was about 5 years ago, approx.

My apnea is Obstructive Sleep Apnea -- it was present before I got fat and I too have put on a lot of weight over the past 5 years. (something to do with the interference of hormonal levels caused by sleep apnea -- although I have other reasons to be overweight. When I try to lose weight it's pretty much impossible -- I only lose a small amount over a long period of time.

When lying on my side my apnea is at mild levels but when I roll onto my back my apnea is in the moderate to severe level.

I also have alpha wave sleep occurring in parts of my sleep that is sort of weird but sleep doc was not worried about It. I can't tell you exactly what was said about that because I forgot to ask for a copy of my sleep study or the letter the sleep specialist wrote back to my then gp. Although I do want to follow it up now as maybe they know more about it now.

I used the CPAP successfully for 6 months and it made such a difference to my energy levels. But then I started to experience chronic pressure urticarial on my face which makes using the mask impossible for me even though it's the most luxe on the market. It causes deep red marks where the mask is and pain. Plus it's not like you have to pull the mask on tight. It's more about correct seal than about tightening it extremely.

So now I use a heap of tennis balls sewn into a sock on the back (high up) of old t-shirts that I slip over my nightwear. This definitely helps but is not as effective as the mask.

Good luck with your trial. Try and see the best specialist you can. The sleep techies are very good. Wear really loose pj's on the night so they can get the wires/leads down your legs etc and be prepared to have to wash a lot of cement like glue out of your hair in the morning. Oh, and if you wake during the night don't be worried about asking the techie to come and undo you so you can go to the toilet. They are used to that. Especially if one has pots and pees over-regularly, even during the night.

It's hard to get to sleep but the techie who prepared me on the night told me that I just had to tell myself to sleep and I have no idea how but I did get about 5 hours. (I have great trouble falling asleep in strange places but I certainly slept enough to get good data).

blue

[Agreeky]

I have apnea. They said partial obstructive hypopneas. So I get bouts of shallow breathing. I got approved for a cpap but have not gotten it yet. My body had a hard time handling it... I am waiting to see my neuro tmrow to see what else I can do.