British Snoring & Sleep Apnoea Association

Hello everyone. Totally new to this (never been on a forum before) so be gentle. After years of complaining of being tired all the time have finally been diagnosed with OSA. I have been lucky was referred to sleep clinic in March had 1st appointment in June went home with wrist/finger oxygen monitor thing (sorry don't know technical term) returned next morning Dr downloaded results I was stopping breathing 101 times an hour didn't know you could breathe that much never mind stop!
Another appt week after, loaned CPAP for a week then another appt for nurse to download results from the CPAP and be given my own Resmed S8 all programmed just for me. Mask takes a bit of getting used to but glad to say I woke up this morning with my mask still on for the 4th day in a row.
I am starting to feel better at last, I had a baby 11 months ago and wonder how I have managed to cope with looking after her without any serious incidents. I'm sure you understand how terrible I felt falling asleep whilst feeding her in the first few weeks.
Well that's me feel free to ask me or advise me or just say hello. Jo

Welcome to the site Jo....Well done you, and well done Ninewells. You did tremendously well to get through the system so quickly. Not that you didn't deserve it with 101 apnoeas and a young baby to look after!
All the very best, and hang on in there Ken

Jo,

Hi and welcome to the site. It is nice to knw that you got treated so quickly and it is interesting to hear that Ninewells sleep unit is finally up and running.

I was diagnosed at Edinburgh Royal Infirmary in March after a two year wait, but was told that I would be transferred to Ninewells books for my 6 monthly and annual reviews.

I just wondered what you thought of the service they provided and if you have any contact details.

Hopefully the only reason for any interrupted sleep is now your baby

All the best

Hi Ken & Tony Thanks for the warm welcome. The contact number for the sleep clinic at Ninewells is 01382 660111 extension 34596. I found the clinic to be great I think Dr Smith is the main consultant I didn't see him but another female Dr who was great very patient and supportive. The nurse I saw Gail was nice too,very friendly with loads of info and advice (maybe a wee bit rushed but did answer my questions). As I've said my appointments came through quick, no waiting for my CPAP (I've seen from other post's on the forum how lucky that is) but I have nothing to compare it with as I've not been to any other sleep clinics but I was happy when I left. I don't have to go back for 6months but have been told to phone them if I have any problem's or queries.
Just realised it's nearly half eight and I haven't yawned once today, it's great I used to spend ALL day yawning. Jo

Well done Jo - and all good wishes for being a 'young mum'! Sleep deprivation is one of the worst things that can happen to you ... but I'm sure you'll get good quality sleep now that you're on the CPAP. Only advice but try to nap (with your CPAP!) when Junior does!

All the very best to you, your partner and Junior - and keep posting!

Jo,

Thanks for the info. It sounds as if they are quite a friendly bunch at Ninewells, so hopefully I should have no problems when I am transferred over to them.

It is good to hear that you are doing so well with your CPAP machine. It really does make a massive difference and it is such a relief when you finally find out what is wrong and how "easy" (relatively speaking) it is to treat the problem.

I certainly don't envy you having to deal with a young baby and SA but hopefully everything is much easier now.

Hello Alsacienne thankyou so much for the good wishes.
Tony- so glad I could be of help.
Have to admit my head & emotions are all over the place at the moment one moment I'm so happy that I'm getting better not falling asleep and yawning all the time, then I'm angry nothing was done before now to help me, I don't know how many times I've told Dr's over the year's I was tired only to be told that everyone is, last time my GP said she was the wrong person to ask as she could fall asleep anywhere. (This was when I explained I'd fallen asleep on the loo and burnt my leg on the radiator, it blistered and I still didn't wake up). I nearly died a week after junior was born had to spend a week in hospital (away from my new baby) was diagnosed with heart failure and thankfully recovered, could this have been due to undiagnosed OSA? I don't think anyone know's.
Then there's the guilt maybe
I haven't looked after my wee girl as well as I should have done because of the exhaustion, everyone reassures me that this is not the case but it still bug's me.
Also I am so angry that someone in a similar position may have had there diagnosis but will not get a CPAP for month's that is scandalous does anyone know what we can do about this are there any awareness campaigns?
Sorry about the longwinded moan but I don't think anyone who hasn't been through this can understand and I needed to get it off my chest.
Jo

Jo,

Feel free to moan away, that is exactly what the forum is for. You are not alone in feeling angry that it took so long to get diagnosed as we have all experienced this.

I am sorry to hear just how bad it got and I do think your doctor could have been more sympathetic. Unfortunately, most doctors do not know or understand about SA and they do not know about the new clinics that are opening up around the country. It is also not a "trendy" condition so it is not seen as a priority by many health trusts.

If you want to get involved in raising awareness of the problem, then why not join the Scottish Association for Sleep Apnoea (SASA) www.scottishsleepapnoea.co.uk and/or The Sleep Apnoea Trust (SATA) www.sleepmatters.org These organisations are self help groups who help to raise awareness of the problems of SA. You may also want to check out www.osaonline.com as this has good information on the condition.

As for the guilt, although again this is a common response, you really do have nothing to feel guilty about. Why should you feel guilty about having a serious medical condition that the doctors would not treat seriously?

Try to think positively in that you will now have even more energy, which will allow you to enjoy even more quality time with junior.

Hope this helps

Thanks so much Tony, those websites are really interesting will definitely be joining them. Is a medical alert card necessary do you think, (have you got one?).
Awareness must be increased, whilst I was in hospital I was woken numerous times by nurses concerned that my oxygen levels had dropped and was I ok!!!
I am so shocked at the statistic that OSA is as prevalent as insulin dependent diabetes. There has got to be some MP's with OSA why don't they do more for people.
Rant over I do know how lucky I am I have the most gorgeous healthy happy daughter and I have been given my life back, the past can't be changed but the future is looking good. Jo

Jo,

I am glad that you found the websites useful.

I do have a medical alert card as it is quite obvious that most medical staff do not know about SA and CPAP. I also had the nurses at Ninewells asking what my machine was when I had my septoplasty operation.

As for MP's while I do not know about MP's you may want to read my post about the SASA conference as it includes a bit about what Christine Graham MSP is doing to raise awareness in Holyrood. You should also join both SASA and SATA as I have done as they have various campaigns ongoing to raise awareness and are trying to get NICE (National Institute for Clinical Excellence) to agree that CPAP should be included on their list of prescribed treatments as this would force NHS trusts to give the treatment to anyone who was diagnosed as needing CPAP to control their SA.

It does look as if things are beginning to happen, but as so often it is at a snails pace. Still, some progress is better than no progress.

All the best

Tony

Jo

I am pleased that you are/appear to be getting the support we all deserve from the NHS. I live in Worcestershire and was quoted 18 months waiting time for a CPAP machine so had to buy my own.

Also congratulations for adapting to the use of your CPAP machine I am finding it very difficult. I find that I have removed the mask turned the machine off and can't even remember doing it! My record to to date is 7.18 hours but generally I only last about 3 hours.

Like you I feel that my diagnosis took far too long as I have also been complaining about feeling tired for over ten years and feeling worse the more sleep I got!

I only stop breathing 43 times an hour so am a lightweight by comparison!
No need to feel guilty. Its not your fault. All the best. AG

18 months !!!?? big bad sweary words (sorry). What on earth did they expect you to do live half a life, I can't imagine what I would have done if I'd been told "yes you are ill and we have the cure but there is no money for the cure for 18 months bye".
It has only been a few weeks now but it does almost feel like I'm more like my old self and last night my boyfriend said I was less irritable than before CPAP.
And the part of me that was that idealistic spirited teenager that despaired of injustice and protested and campaigned in the belief that I could help change the world for the better is coming back (lol mad I know)

I wonder if this condition is seen as a condition typical to "overweight middle aged men" and they aren't trendy so people with OSA aren't important.
Well that's not right even if some of us are overweight (I am) this condition is not my fault it can be treated and no-one should have to wait in limbo for treatment.
Oops sorry AG just meant to say hello and thanks for the reply. Jo

I am an overweight midle aged man.

I didn't used to be overweight. It came upon me as exhuastion led me to find strategies with which to cope with the exhaustion. I found all sorts of ways to avoid physical work. Now I drive a desk and hardly move off my seat.

Of course I have put on 7 stones in weight over a ten year period of sleeplesness!

Now I am on CPAP I am already (after a few days) sufferring backache, armache, legache and every other muscle I can think of. Therefore, I am obviously doing more and fully expect to loose weight perfectly naturally over the next couple of years.

How does that sound for cause and effect.

Still middle aged though - mind you you would not have thought so last night to see me dancing late into the night as never in the past 10 years.

I hope you didn't think I was being derogatory about "overweight men" that was the last thing I intended and I apologise if you did.
I know exactly what you mean about cause and affect for years I have been tired and everything has been an effort from trying to get up in the morning til dragging myself back to bed at night (quite often with a nap or 2 sometime during the day). The weight I have put on has got to have something to do with having no energy to do anything. Now I get to the end of the day and realise I haven't stopped all day although I'm never going to be a size 10 I am sure it's going to be easier to loose the weight.

So glad it's going so well for you on CPAP Graham, it is like being given your life back. Good Luck.

No offense taken whatever!

So they are issuing an 18 month sick note wilst you wait are they? So where's the money coming from to pay for that? Still! At leasst you can try to get some rest in the daystime.

Oh! and if you have kids, I guess you will need child care whilst you are off sick?

These machines are what? 300 - 400 quid? How does that compare to sickness benefit?

Don't get me wrong. It's not that I advocate makeing unfounded claimes. But if you are living with OSA and not being treated, you cannot even drive to work safely. You will certainly be too tired to walk and would miss your stop on the bus - asleep past the stop. When you get there you cannot do anythhing which depends upon you for safety, work machines, drive, even be trusted or organise things properly. You would be a liability to an employer.

I know this because in donky's years I have been self-employed and have been a laibility to myself; till I got my CPAP. I've not been ABLE to earn enough to pay tax for years, however hard I worked and however exhausted I made myself trying. I even tried employing staff, but they ran rings round me till I had to sack them for no doing enough. They just took a leaf out of my book and didn't see why they should do any more than I did. They were an band without a leader.

Graham