Patient Stories: Paul - Obstructive & Central Sleep Apnoea and now with a surprise update at the end of his story
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
Part 2 of Paul's Story with a Surprising Update!.....
2 years after we posted Paul's story we've been contacted by him with some great news..... he has now been cured of his sleep apnoea and no longer needs to sleep with his mask! Paul and us felt it very important to share this update in the hope of helping others, and Paul goes on to describe his journey.....
"When diagnosed with sleep apnoea I had been on an Opiate pain killer for my back for years called OxyContin. This drug is what has caused the current Opioid epidemic in the USA & has sadly killed very many thousands through overdose.After researching I found out what Opiates & OxyContin were & how they severely restrict breathing, which made sense as to why I was stopping breathing in my sleep so many times.
OxyContin, which I had been taking for years is in fact stronger than Heroin - its nickname is "Hillbilly Heroin" but I was unaware of this at the time as I was given this by my then doctor, who kept on increasing the dose due to tolerance levels.
To cut a very very long story short, a long hard battle ensued to get off this legal Heroin after I became addicted & I was placed on a high dose of Methadone which is what is given to Heroin addicts to get them off the drug.
I lost my job as an Operations Manager, with a great salary, my car, almost put out on the streets after losing everything & very nearly my life!
After finally getting off OxyContin and gradually reducing the Methadone, I was diagnosed with Vitamin B12 deficiency, Folate deficiency, Pernicious Anaemia & Megaloblastic (Macrocytic) Anaemia, which I now know was caused by long term & over prescribed Opiates. All this is caused by a B12 deficiency which many Heroin addicts have without ever knowing they have it. People have been & are still being misdiagnosed with Dementia & MS, when it can be a B12 deficiency.
After having regular B12 Injections and no longer needing Methadone my Macrocytic Anaemia has now gone, (though there is no cure for the Pernicious Anaemia) & my red blood cells are now back to how they should be. Just as important, I am now apnoea and mask free!"
As you'll appreciate, Paul has been through a terrible battle to get to where he is, and we applaud him for not only turning his own life around, but for the proactive way in which he's now helping others. Just last week he was a panelist on a live webinar for SMMGP (Substance Misuse for General Practitioners) where he shared his story with 289 GP"s with great feedback and he now has an enhanced DBS certificate which enables him through a drug charity, to go into schools, colleges, universities & prisons to tell his story & talk at events about the dangers around substances - both illegal & also legal.
Grateful Cured Sufferer of Complex Sleep Apnoea
0300 102 9711