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Patient Stories: Paul - Obstructive & Central Sleep Apnoea

My life before my diagnosis consisted of many  years of struggling to stay awake in meetings at work (which I found a real embarrassment, knowing people were looking at me and perhaps even judging me!).  My home life was no different, as I would get home and after eating tea with the family I would find myself just falling asleep, especially whilst trying to watch programmes with my daughters before they went to bed.

My partner at the time, going back as far as 20+ years ago, would tell me that she kept nudging and even kicking me whilst I was  fast asleep, as she thought I was stopping breathing (which I now know I apparently was).

My whole life was dominated by feeling constantly tired and exhausted, but, I thought that was normal due to a stressful job and was exactly how everyone felt, as I could never remember feeling any different!

In December 2016 my GP referred me to a sleep clinic and the sleep consultant sent me home with a contraption to wear over night (sleep study recording equipment), but when I was called back I apologised to the consultant for the fact I thought I'd  only slept for around 2 hours due to my degenerative disc disease in my back which is why the sleep study wouldn't have shown anything up.  However, his words really shocked me when he said "well actually, it did.  You have what we call Severe Mixed/Complex Sleep Apnoea and you stop breathing on average 80 times per hour"!!  To say I was gobsmacked was an understatement!!

To cut a very long story short, I was trialled with a CPAP machine but, because  my main issue was Central Sleep Apnoea it transpired that my apnoeas were made much worse by using the CPAP machine!  I then had to wait for an ASV machine (Adaptive Servo Non-invasive Ventilator) in order to achieve good therapy, which is much more complicated and a lot more expensive than a CPAP machine.  The wait was hard, and I received a lot of support from this Hope2Sleep Charity during this time, but it was worth it though as once I got the Resmed Aircurve ASV machine  the results were almost instantaneous... I went from stopping breathing 80 times per hour down to 3 times per hour during the first night!!

People say that Obstructive Sleep Apnoea is linked with being overweight, but I have never had an issue with weight, and if anything am slightly underweight for my 5'10" height.

I'm so pleased I got this checked out, as now I'm on good therapy I'm no longer falling asleep during the day and feel so much better in myself.  I know I still have a way to go after more than 20 odd years suffering with hardly any decent sleep at all but am so grateful this was diagnosed and I'm experiencing a much better quality of life.

I appeal for anyone with a similar situation to mine, to please see your GP.  It will be the best decision you have ever made!!!

Paul Hemsil - Grateful Diagnosed Patient