Dec 23 - received letter from Chest Clinic suggesting my stroke I had in Sept 23 could have been caused by sleep apnoea after undergoing an overnight oximetry test.
However the results that i was stopping breathing 44 times every hour was not relayed to me.
I politely declined a CPAP trial as I did not want tubes at night for the rest of my life. The nurse kindly still offered a chat with the respiratory consultant on 8th March 24.
At this consultation I found out the results. I then said I was a sensible person and therefore would accept a CPAP machine on the NHS. However he replied as I cancelled having a machine I would now go down the waiting list. I replied had i known i would have not cancelled. He said well results were sent to your doctor.
Then the bomb shell - consultant said I am banning you from driving until you are settled on a CPAP machine. Then got a letter - another 8 to 12 weeks wait! I then realised i could not do without my licence which I needed to inform DVLA if my condition was going to be more than a month. I therefore decided to purchase a ResMed Air Sense 10 machine from Intus Heathcare with automatic ramp settings and one which would log and send reports of events to a MyAir App. After 2 weeks on the machine my incidents of stopping breathing for more than 10 seconds went from 14 per hour to 3 events per hour. A normal person naturally stops breathing 4 to 5 times per hour on average so i was quite pleased. So my journey to get driving again started. My GP however told me she was not a respiratory specialist and could not have interpreted my original results nor the report from my ResMed CPAP machine. She explained GPs were primary care only and consultants were secondary care and therefore I would have to wait to see the NHS CPAP consultant. Potentially 3 months wait! I knew then I would have to inform the DVLA until the GP suggested finding a respiratory sleep apnoea consultant privately. Whilst this went against my principles I needed my driving licence for my job. So saw a respiratory specialist last night who reviewed original results, my STOP BANG scores, Epworth sleep test, oximetry results plus the improved results from my ResMed CPAP machine and I will be driving again once I receive his letter by the end of the week. The moral of my story is if you get offered a CPAP machine accept and keep with it as it does take getting used too; make sure you try and get all test results even if they dont send them. I also recommend chatting to friends when deciding on which CPAP machine would be best for you and make sure you get one which records data on a SD card and reports to an APP and has automatic settings. Do remember a CPAP machine is a medical piece of equipment so a referral letter / diagnostic letter from consultant is needed as you cannot buy one without evidence of diagnosis. That is also the reason why CPAP machines cannot be bought second hand on EBAY. Since i have been on the CPAP my wife says I have stopped snoring and I am more awake during evenings too. Thanks for reading!
Thank you for sharing your story @Geoff1970 i think a lot of people have probably declined treatments without realising the implications of doing so - although you would hope that drs would inform you of any such implications.
Glad you have found a way to get your licence back & i’m sure you & your wife appreciate the quieter nights.
Hi Geoff
Very interesting read for me as next week I pick up the monitoring device and consultant appointment 5 days later.
Can you expand on the getting used to part of the cpap machine ?
I had my licence taken away as a result of a single test it seems in the rehab unit, nothing to do with apnea. It was an estimation of current to past capability. Not sure what the test was and it wasn’t repeated. I haven’t bothered to pursue replacement and will wait to see the apnea outcome first.
Thanks
Nigel