Apnea in the UK experiences so far

[Lindopski]

I was getting odd dizzy spells for a few years, getting hassled daily by my family to go to the drs and for years refusing as I thought it would open up a barrel of hassle (how totally VERY right I was).

so... My experience with Betsi Cadwalader (North Wales UK Health Authority,both GP wise and Hospital Trust and the DVLA...enjoy)

after being advised not to drive in April 2016 whilst they loooked into what was wrong with me, I hung up my keys and figured out how to get to work 20+ miles away each day (this was tricky to say the least but I managed).

I advised the UK DVLA that I had been told not to drive and handed in my licence to them, I was told it was better to surrender it voluntarily as it was easier to get back (incorrect by the way - thats a load of crap).

After a variety of appointments including an initial sleep study in 2016, that said I had sleep apnea but at about 1-2 events per hour it wasnt likely the cause or worth treating.
I then bounced around Neuro and all kinds of tests for the next 2 years almost, eventually returning to sleep apnea again at the same place, after an overnight study which showed again maybe 1-2 events they said its hardly worth treating you but we will go for it and see if it helps, marvellous.

I received a ResMed Airsense device and I found it did reduce the dizzy spells personally and eventually they went away so sleep apnea sounded like a good choice for my issues.
I was told that I could register my device and I get 3 months Myair access and can login etc online to check my nightly stats - well 9 months later myair was still working for me and I could check how I was doing each day. After using my cpap machine for a few months I was told I could re-pply for my driving licence which I did, the DVLA sent a letter to my GP and to my sleep apnea Dr at the hospital and then...Wait!
after 2 months I had heard nothing so contacted the DVLA who said they had not heard back from the hospital so I contacted them and they said they would sort it and .....wait 
1 month later the DVLA wrote to me again wanting to know what was going on so I started to ring the hospital most days to see what the heck they were doing, they eventually said oh dear oh yes we see your letter and will sort it, which they did after another 2 or 3 phone calls - 'alledgedly at least'.
Then the DVLA said we havent had any letter from your GP!!!!! FFS!
SO... I call the GP each day for about a week usually engaged or ringing out till they say ok we will get on it, a month later the DVLA send me a letter saying they have had no contact from the GP!!!!!!!!!!!!
so..... I go to the GP who appears to have no idea what I am talking about then says leave it with me, she gives me a full medical checkup as I havent been in for about 18 months and sends me on my way quite satisfied with my health in general.
about 7 days later, after my medical examination I then get a letter from the DVLA to ask me to go to the GP for a medical examination so they can assess my licence application.....ARRRRGHHHHHHHHHHHHHHH
This is for someone bear in mind who on initial sleep study has about 1-2 events perhour (before starting treatment!!) and so far this has taken about 2 years to get to this point and about 1 year after getting my CPAP machine and being told to apply for the licence again.

So...

During my time with my resmed, I use My air Daily and check how I am getting on, ok I am not perfect and some days I take mask off after only maybe 3 hours and go in spare room as its cooler and the mrs hates the cold, so I am by no means a star user but most days I am at least 5 hours and some times per month I have mask on for like 9 hours or so and my scores on myair are sometimes 100 though usually about 80, and sometimes less if not using mask for long enough.
I use it every day though because my GF has discovered I dont snore with it on and likes this so hassles me every single day to make sure it is on etc
So I get a letter from the hospital to come in for a cpap review about a month back,I am quite positive because I use it always and even though I sometimes take it off after 4 hours or so I generally have it on for the required time. I go in and take my ResMed and the nurse checks it over. She comes back with a more stern face saying you havent used your Resmed for 90 days this year....WTF I use it every day or get grief from the GF, so I say no that cant be right I check 'myair' every day on my phone, she says your myair only lasts 3 months and brings the myair data for my machine up on the screen it had ended last august and she said look on there you were using the machine fine....I still am I say, I still have my air access I looked at it like 4 days ago at most and it has a couple of weeks worth of data most at 88% or 100% - I whip my phone out to show her....no fkin signal ARRRRGGGGHHHHHHHHH
she mentions DVLA want at least 4.5 hours a night, I say Im doing that generally, just need access to myair to show you ARRRGGGHHHHH
I ask about letter, she says the consultant puts letter in your file if you apply - I have no letter or info in here at all about anything to do with the DVLA - are you sure you contacted us - AAARRRRRGGGGGHHHHHHHHH!!!! (only daily for weeks !!! AAARGRRGRGRHRHRHRHRHRH)

Ok so what she will do is book me in for a 6 monthly review because I am so rubbish and see how I get on...
I leave V V V V V V V V P*ssed off!!

I get home and myair no longer works Sigh , I assume her getting the data off it has P*ssed it off sigh and I have to re-register my machine - sigh FFS!
luckily once re-registered it picks up my old data missing a few days.

I think I am going to have to write down or record my Airsense data somewhere each day because I have no evidence otherwise apart from the data from my marvellously reliable hospital and health authority.

So I am now seeking software that will record all my nightly info without damaging it for when the nurse needs to check it on whatever they use their end.

MyAir doesnt seem to cut it really reporting wise its lame as.

as for the DVLA/Health authority/GP side of things...they honestly are totally incompetent - dont give up your licence FFS!!!!! no matter what the 'advice'

what a fkin joke

not even a funny one.

[DeepBreathing]

G'day Lindopski. Welcome to Apnea Board. It sounds like you've been stuffed around by experts!

There are two software programs you can use which are far superior to MyAir, and which don't rely on web/internet access:

1. #SleepyHead is my preferred program. It was written by a fellow apneac and is the most comprehensive program around. It will give you detailed breath-by-breath charts of all your CPAP use and results. It's a free download, though I always suggest we flip the author JediMark a donation to help him along.

2. The other program you could try is ResScan. http://www.apneaboard.com/forums/Thread-...hines-only This is the "official" software by Resmed and the one a lot of doctors use. It gives you much the same information as #SleepyHead but is not so user-friendly.

For each of these you'll need an SD card to go in your machine and a card slot or external card reader for your computer. (You need a real computer, not a phone or iPad). #SleepyHead works on both Apple and Windows PC, but ResScan only works on Windows.

Good luck!

[Sleeprider]

Lindopski, you should check what settings are on your machine for mode, pressure and EPR (exhale relief pressure). It would also help to get a handle on your treatment efficacy by looking at the on-screen sleep report. Note if you have the CPAP machine, it will not provide data, and we fondly refer to it as a brick. Considering the rest of your experience, that would be my guess. If it is an Elite or Autoset you are in business.

Here is how to access the settings so you can eat least check what they are: https://www.apneaboard.com/resmed-airsen...setup-info

[Sleep2Snore]

Hi Lindopsik,
Welcome to the Apneaboard.

I have heard Wales Health Board are in a bit of a mess as for as Sleep Medicine goes, though to be fair they are improving slowly.
The DVLA will no accept Sleepyhead data so do not bother sending them any.
As far as the DVLA is concerned, they don't know how to handle Sleep Apnea and sleep disorders very well.
At one time when I was diagnosed they took your license from you and that was the end of the matter.
Then a Professor Douglas from Edinburgh joined the medical side of the DVLA and things did change for the better.
For some it is easy to deal with the DVLA and for others it is a nightmare.
The DVLA require 5 hours use every night and less than 5 ahi so if you got 5 hours in every night there should be no problem, provided you do not feel tired during the day.
The problem the DVLA has with you is maybe how you surrendered your license, what did you tell them when you handed back your license?
If you have told them it was due to dizzy spells, it will be this that they are dragging their feet over, not the Sleep Apnea.
You do need to get up to 5 hours every night (the odd night with less will not matter if you have over 5 hours on most nights) so you need to get a letter from the Sleep Clinic stating you only have a few events every night,  You also need to get a letter saying that since being on cpap that your dizzy spells have stopped.  I suspect it might have been low oxygen levels that was causing your dizzy spells, but then I am not a doctor.
I will have a look to see if I still have the software link that DVLA will accept as proof you are using your machine for more than 5 hours every night.
It should be noted that with the old machines you could only get hours used, so it shows that they are not good with Sleep Apnea there as they not want to know how many events you have.  The main thing is that you do not feel tired during the day, or at least it should be as that was all they had to go one years ago.
Get 5 hours or more use every night on the machine and see if you can get data from it, then get a letter from your doctor to say the dizzyness has gone since treatment for Sleep Apnoea.  If you can get the Sleep Clinic to say you do not suffer from Sleep Apnea but treatment was started to see if it had an effect on your dizzy spells that would be even better as that clears you of Sleep Apnea.  They would not treat up to 5 events anyway here, so in effect you do not have it.
I will have a look to see if I still have a link to the software and I will PM you if I still have it.
Then you can give me an email address and you can start recording your own data that they should accept, at least the Sleep Clinic should and take the results from it, though they should use the data from your data card.
I trust you have an Airsense10 Autoset or data compatible one before you can use My Air?

[Sleep2Snore]

Limdopski, I have sent you an email.
Let me know if you got it.

5 hours of use every night and less than 5 events (which i think you are at already, unless you have a lot of centrals)?

If you can download Sleepyhead and post some data so we can see where you are with your treatment.
Take note though that DVLA will not accept Sleepyhead, so you will need a letter from your sleep clinic anyway.
But lets see if there is anything to worry about in your data. 

[trish6hundred]

Hi Lindopski,
WELCOME! to the forum.!
I'm sorry you have been through such a run around.
I wish you good luck with CPAP therapy.
Hang in there for more responses to your post.