Hi guys, newly diagnosed and new member

Hello all, just been diagnosed with severe obstructive sleep apnea. Not having much luck with friends and family (apart from my partner) or my employer taking it seriously. I was a memeber of a car forum and there club for many years which is part of my hobby and I put a post on there forum "not allowed to drive" when I was told I'm not allowed to drive and I was ridiculed and abused online by all these people I considered friends that I was fat and don't waste nhs money or time off work but that was mild there was some very nasty comments hence why I've cancelled my subscription to that club and forum sadly but thought it would be good to join a sleep apnea forum! Since my diagnosis 6 weeks ago I have joined back up with slimming world and been swimming 3 times a week trying to help myself by losing some weight. I'm unfortunately off work on ssp as I work in a rural garage (mechanic) with no public transport so unfortunately the doctor has signed me off untill I can drive again. Just thought I'd tell u a bit about myself and say hello!

Welcome to the forum. Since you have diagnosed with severe obstructive sleep apnea, I presume you have had some sort of sleep study. Have you gotten a prescription for an xpap machine yet? If at all possible, make sure you get one that is fully data capable. Starting treatment can be difficult for some people, and the more information you have available to you, the easier it is to see what is going on which will make it easier to make changes to your treatment if necessary. Perhaps the most difficult thing is finding a mask that works for you. It took a while, but I finally found one that works for me. Listen to people here who have been using xpap treatment for several years and are willing to help you any way they can. Ignore the snide comments that show up once and a while and embrace your new life style. It can be a very good journey if you want it to be. Once again, welcome to the forum.

Hi thanks. Yes I was diagnosed midway through December after having been monitored with a oxygen thing on my finger overnight and then I've been referred to a sleep clinic. I was told it Would be 18 week waiting list to get my machine but because I need my licence for my job luckily they rushed me through and I have an appointment to get my cpap machine on 15th February

Gcfcos wrote:Hello all, just been diagnosed with severe obstructive sleep apnea. Not having much luck with friends and family (apart from my partner) or my employer taking it seriously. I was a memeber of a car forum and there club for many years which is part of my hobby and I put a post on there forum "not allowed to drive" when I was told I'm not allowed to drive and I was ridiculed and abused online by all these people I considered friends that I was fat and don't waste nhs money or time off work but that was mild there was some very nasty comments hence why I've cancelled my subscription to that club and forum sadly but thought it would be good to join a sleep apnea forum! Since my diagnosis 6 weeks ago I have joined back up with slimming world and been swimming 3 times a week trying to help myself by losing some weight. I'm unfortunately off work on ssp as I work in a rural garage (mechanic) with no public transport so unfortunately the doctor has signed me off untill I can drive again. Just thought I'd tell u a bit about myself and say hello!

Hello and welcome to the forum, Gcfcos!

You have landed in a great place to feel supported with your new diagnosis of OSA and your treatment. Sorry to hear that your friends and family, and employer are not understanding and supportive of your goal to be healthy. I think you did the right thing by terminating your subscription to that club/forum - NO ONE needs that kind of negativity in their lives! Terrific moves with joining slimming world and swimming; losing weight won't necessarily "cure" sleep apnea, but it can help, and will help you feel better overall

If you have any questions, just ask. We are all here to help. Happy Friday

18 weeks on waiting list! Wow. Well I wonder if that says anything about the British Health System as against ours here in the USA. I was diagnosed in late December with Severe OSA and I got my CPAP last week.

Thanks guys, well it's helped a lot already reading some of the posts over this forum, I didn't realise myself the seriousness of the condition untill I looked into it more myself. The main one for me is not being able to drive. The doctor has signed me off and I have everything close to me that I need like shops etc and the swimming pool I'm using in the hotel is a 40 minute walk each way so that helps for exercise too. I did manage to get a lift into work for a week after I was told to stop driving but that guy could only do it for that week. The lady at work in the office is understanding and has put me on sick pay and said I can go back to work part time when I'm ready if needed which is good but the main boss who actually owns the place exact words when I told him was (well I'll tell u how it went). Morning boss, well I've had to get a lift into work this morning as the specialist has told me I'm not allowed to drive untill I'm under treatment (boss knew I was having problems with health/tiredness when they took me on) he said "whats wrong then" to which I said I have sleep apnea. His exact reaction was he laughed and then said "oh yeah my mate had that, he said it was ballshit and just carried on driving and ignored it, what a waste of time". And he's been funny with me ever since and not taking it seriously at all. Well my attitude is now he can pay my sick pay while I'm off and when I'm better I'll go look for another job! They knew all about my health problems when they took me on and I was adamant with them about it. Oh well worse things happen at sea!

Welcome Gcfcos to the forum! Fellow UK'er here, although one who now lives down under.

There is a lot of regular people that know nothing about it, and sadly many doctors that know very little. Most folks don't realize how debilitating it can be. I generally explain it as my body trying to kill me every time I sleep. A condition that results in never getting a good night's sleep yet creating an endless loop where your body craves more sleep, even though more doesn't really help.

Welcome to the forum. Hopefully you are one of the lucky ones that need little adjustment to maximize your therapy. Otherwise, prepare to dig deep and find the energy to educate yourself on the condition, monitor your own therapy, and be ready to accept help from the experienced folks here.

Yep I'm willing to listen and learn for everything to do with treatment. Had a terrible night last night, was up 3 times for the toilet (I'm only 34) and woke up feeling like having had no sleep. Went swimming today but was so tired I had to get the bus back instead of my usual walk back. I've had a drowsy headache all day. Bloody good job I'm not at work really as it was becoming like this everyday.

Hi Gcfcos,

Let me see if I can give you some useful information.

Severe OSA is to be taken seriously. In the classification used in the NHS, that's 30 or more apneas per hour (called Apnea and Hypopnea Index or AHI). That's a lot. That at least one every second minute.

If either Dorset County Hospital or Poole Hospital is anything like here in Gloucestershire, at your appointment on the 15th of February, you will see a specialist sleep physiologist/ nurse, and they will do several things for you.

First, they will try out various kinds of mask on you, to see which best fits. The one that does they will give to you (to keep) - you don't even have to pay a prescription charge on it.

Second, if the policy of the Sleep Medicine department is the same as the one I attend, they will give you an APAP machine to use for a week - usually a PR S1 560 - and then to bring it back so they can plug the SD card into their computer. Then, based on the data from that, they will find the pressure level you were at or below 90 per cent of the time. That's called your 90pc pressure.

They will then - if they're the same as the rest of the NHS - issue you with a fixed-pressure CPAP machine - probably a PR S1 460 - set to that pressure.

(BTW, since you're a mechanic, you might like to know both the machines I've just mentioned have a range from 4cm to 20cm, and 'pressure' is 'that which supports a column of water of that height'.)

And being the NHS, that machine is also free, and is yours for as long as you need it. But ... technically, it's on loan (obviously a long-term loan). They do that because, every now and then, a patient comes back after a few months and says they've tried it, and can't stand it, and are gonna give up treatment and take their chances. And if that happens, the Sleep Medicine department would like the machine back so they can give it to someone else.

And third, they'll probably tell you to give them a call if you have any problems in the first three months. That's because just about everybody goes through an adjustment period in the first three months. And that, btw. is where this forum comes in, and why it's so valuable. There are people here who - dare I say it - know as much as, if not more than, the average Sleep Medicine physiologist. So by all means listen to what the hospital says - but also take note of this wealth of user experience.

There's more I could tell you, but this is for now.

Hello again Gcfcos,

If you read this forum a lot, one thing you'll twig is that many users here have, as their usual machine, some kind of auto-adjusting device. And, in general, and unless there are specific medical conditions against it (such as heart failure), auto APAP and auto BiPAP are better than fixed-pressure CPAP and fixed-pressure BiPAP.

And you'll know from the news in the papers and on tv that there is pressure on NHS funding. Which is why they issue patients with a less-cost-to-the-NHS PR S1 460.

Now, some people's response to this is to buy their own machine. As you will know, people spend loads of money doing their car up. What's a few hundred spread over five years if you get better kip?

There's nothing to stop you buying your own machine - which you can do direct from Philips Respironics UK, in Chichester, West Sussex, or direct from ResMed UK, in Abingdon, Oxfordshire. And, no, the staff at the hospital, all things considered, won't object.

The only 'official requirement' is - the manufacturers need a prescription to cover themselves. You can download a prescription form from the web sites of both these firms, and get your hospital doctor or sleep physiologist to fill it in.

The going rate for a PR S1 560 (which is the one I have) is £499; the S9 from ResMed is a good bit more. Either one should last 10,000 hours - ie, about five years.

Summat else. If you're like me, you'll find the air from a 460 on its own (or a 560 on its own) is both cold, and dry. And, apart from the discomfort, a dry throat can lead to greater incidence of infections. For that reason, both the above manufacturers offer a 'clip-on' humidifer - wot does what it sez on the tin - it adds warm moisture to the air flow.

Unfortunately, the NHS doesn't run to a humidifier. They're on a tight budget. But if you want one (and it really does make a difference), there are two options: if you stay with the 460 (which is what I think the hospital will issue you), and buy just the humidifier yourself, Philips will charge you £150. If you decide to buy their 560 and get the matching humidifier at the same time, the combined price is £599.

Best.

Thanks so much for your reply guys really helpful info there. Only just over a week to go now untill my appointment, the letter says it's an hours appointment with up to 8 other people in the same appointment. I'll let u know how it goes and what machine I get given. My specialist at the hospital sent me a letter stating he recommends me not to drive untill I'm in use of the cpap machine but I can drive once I'm using it. He made no mention of telling dvla or anything about it but looking into it all online it looks like I have to?

Yes, you're the one who has to tell the (UK) Driver and Vehicle Licensing Agency (DVLA). That's the law. They will then send you the forms.

The top one is a general "I agree for you (the Agency) to access confidential medical information about me." The next form - or forms - is: one for each major illness that might stop you driving.

It's their way of covering the possibility that you've got more than one condition in that category.

If you have sleep apnea, you fill in one form and say 'sleep apnea', naming the doctor and the hospital department you're going to for that. If you had, say, heart arrhythmia as well, you'd fill in a separate form naming the separate doctor and hospital department you'd be going to for that.

The DVLA then writes to the doctor (or doctors), and asks them if, in their opinion, the treatment is working. And the docs write back to the DVLA.

And being a bureaucracy, all this doesn't happen overnight. The DVLA tells people just doing the paperwork can take six weeks.

As for the hospital's part of that paperwork, they should move it along if your job is affected. So make sure to tell them what you do for a living.

Thanks for your reply, thought that may have been the case. I'm going to send the forms back to dvla 2
Weeks after using the machine so I can tick the "I'm under treatment box" and hopefully they won't take my licence that way. I'm not going to drive untill 2 weeks after getting the machine anyway to make sure I'm awake enough in the day time and I haven't driven since I was told not too. I will defo lose my job though if I can't drive after getting the machine!

You will have to show consistent nightly use of the machine via the data card. Which means you have to make up your mind that you will make this work for you.
The treatment is simple and has not much side effects, however many people find if difficult emotionally.

The real trick is getting a comfortable mask. Just like you need a comfortable pair of shoes if you plan to go for a several day long hike.

When you get the machine, set everything up, and sit a watch some interesting movies/tv shows to tell your subconscious mind that it is safe to wear this stuff.
Set up a reward system for your self. Start a daily diary of how you feel because change can be very subtle at first. For some people the first few weeks only show a change in moods, then suddenly they realize they have been seeing, for the first time in years, the ends of the tv show. If you keep a diary these changes are really apparent.