British Snoring & Sleep Apnoea Association

Many thanks for the nice reply - Yep, several months have past since I posted, the NHS is a fine institution, but perhaps needs a little oil!

Been in for a number of tests since my last - I have an AHI of 73, which is apparently pretty severe, but I don't need a number to tell me that. I had a home test unit for a few days, and do remember it was a nightmare trying to get to sleep; quite unusual for me, as I am normally asleep before my head hits the pillow! I am due in on Wednesday for another test - It has been suggested that this may be a titration test before being fitted out with a CPAP unit (another appointment on the 23rd Dec), however I've heard nothing about staying there for the night, so I'm guessing if this indeed is what I am going there for, it will be another home study.

Fingers crossed I get this sorted out by Christmas... A good nights sleep would be my best xmas gift yet!

Merry Christmas

Hi everyone

Well last week I went to the sleep clinic for my first follow up visit since getting my machine. Saw the consultant for the first time and he was very pleased with me except....... he banged on about my weight and said I must lose it and had I ever thought about an op to staple my stomach! I told him that would be an absolute last resort for me and unless he said I would die soon without it there is no way I would go down that road.

I know that being overweight is part of my sleep problem but I just don't believe it is all because of it. Anyway I have started to lose some weight and have lost 8lbs in the last 3 weeks so well done me!!!

My life is so much better with the machine, I still have off days but I feel so much more a person and not a zombie.

I hope that all of you out there who are waiting to get a machine get one soon, this could be the best Christmas you have had for years because you will feel like a new person.

Merry Xmas and a Happy New Year to all of you.

Regards

Chris
Ceejayblue

Hi All

Yes, weight is a factor in helping sleep apnoa, but the doctors/consultants banging on about it year after year is a grind. I sometimes think that they think I cannot understand the weight problem. But after 18 years+ you would think that they would have realised by now that either I am stupid to the nth degree or I am not going to be able to lose the weight on my own.

The problem being, is being wheelchair bound, try as i might exercise has always been dificult. And diet well i have tried most of them to the point of collapse with my diabetes. And then they say eat more, and forget the weight.

Sometimes i think i cant win, so I have decided not to get depressed about it anymore and to live each day as full as possible. Because whilst I am under 5 consutants all with different opinions, I can never win.

So I smile have a laugh, and do what I find suits me best and sod the rest hehehe.

Best Wishes for this Xmas

Les

Its been a while since i last posted here. The main reason was ill health. Yje good news I have moved from Wales to Scotland and even though my health is no better, I feel better in myself.

I have moved into a wheelchair bungalow and am gradually sorting all the stuff like dr's, hospitals etc, but it is very close to the coast and wow i can go shopping etc

So even if my health is no better, I am out of the depression that has haunted me for a couple of years. I know the honeymoon is not over yet, but living where i can use the kitchen, bathroom etc and get out is so brilliant

So i thought i'd share this with you all

blimey what a shock to the system it was to read all of your postings... i've just been diagnosed with mild osa and its rotten to say i'm glad i'm not alone in the nightmare situation.
it looks very much like i have been mis diagnosed with depression at least once, also endured tests for uneractive thyroid, diabetes etc..... seriously thinking i must be the laziest 37yr old ever fo nothing!!
i'v had classic symtoms for years, weight gain (oh and don't the doctors just relish in telling you that losing it will help you?)
i've woken up with severe sweats, heart racing, urgently needing the loo!
then to top it all just when you think you have lulled into sleep the alarm goes off and you feel and look like a flippin zombie.
many a day i could have had my porridge and then crawled back into bed.
i have quite a stressful job (in a call centre enviroment), i sit and look at my screen going over the same thing again and again its awful.
i struggle to keep awake on the way home (i car share and my friend drives).
i get home and if i'm lucky manage to open the post and have a cuppa before sitting down and nodding off (and woe betide my daughter if she has a moan about this as i almost bite her head off).
does anyone else get really ratty? i did put it down to hormones!!!
i've now had to sit her down and explain the condition and apologise as i often 'slope off' to my room to sleep when she has friends round. it makes me feel like a really crap mum.
the thought of sleeping with a machine is worse! how do u tell a possible partner that you already have a bed mate?
i'll let you know when i get my cpap!
any comments or snippets of advice would be happily read!
oh do i tell the dvlc? my consultant didnt mention it.

Well, I was diagnosed just over a year ago and I have to say that my machine has changed my life! Yes it's not very pretty, yes it can be uncomfortable and noisy (you sound and look like Darth Vader!) but, and that's a very BIG BUT, you get your life back.

I took my machine on holiday to Spain last year and it was great. I used it for siesta time and at night too. Before I had it I was depressed, constantly tired and being threatened at work with having my work capabilities tested because I was making so many mistakes and forgetting things. My machine is now the butt of lots of jokes at work but everyone says how different I am since I got it.

My GP and consultant have both said that losing weight will help (and yes I am losing it slowly) but even they said that there are lots of slim people with this awful problem. My problem was that I was stopping breathing so often during the night (at least 30 times an hour for up to 2 mins a time) plus almost stopping breathing another 30 times an hour. The consultant said that I had probably got so used to getting so little good sleep (I always "slept" for at least 7 or 8 hours but overall probably only got about 2 or 3 hours "sleep" and was getting up for the loo at least 3 times a night (usually after an episode of completely stopping breathing!).

This condition is awful but with the machine you will gain back your life. I joke with my husband that my machine has given me back my libido because I have more energy and don't drop off to sleep as soon as my head hits the pillow.

If you get a machine don't be intimidated by it - it's your life saver.

Take care.

Chris

the cpap machine is a wonderfull thing if it's used as prescribed,when i was diagnosed with @ the time very severe osa 2 the point i nearly met my maker,cpap was the only so called cure

after being told what my problems were & what was needed 2 help it,i did'nt give it a second thought,but yes it does make strange noises,it can be uncomfortable,& as my niece's once pointed out in can make you look like an alien,but all these things can be put up with when it makes you feel so much brighter a few day's down the line.

the cpap machine is a wonderfull thing if it's used as prescribed,when i was diagnosed with @ the time very severe osa 2 the point i nearly met my maker,cpap was the only so called cure

after being told what my problems were & what was needed 2 help it,i did'nt give it a second thought,but yes it does make strange noises,it can be uncomfortable,& as my niece's once pointed out it can make you look like an alien,but all these things can be put up with when it makes you feel so much brighter a few day's down the line.

well thanks for that... i'm going to look like darh vader! i suppose all i need i a trekky fan and away i go!
i'll let you kno how i get on although i'm on a waiting list.
i have my meeing tomorrow with my boss and union about my performance, then i'm off to our works occupational health bods on weds.
the story to be continued........

Missed that question when I replied last time. Yes you must tell the DVLA and your car insurers. There is a fine if you don't tell the DVLA of about £1000!

I sent in the form that you can download from their website and it took a couple of weeks to get an answer and they said I was OK to drive as I had got a machine and the condition was under control. If you haven't got a machine yet they may advise you not to drive or to get a letter from your consultant saying you are OK to drive. Once you get the OK from the DVLA make sure you keep their letter handy you may need it if you have a problem later.

I've also got cervical spondylitis and so had to inform the DVLA about that too! They've started a list for me!!LOL.

Best wishes


Chris

thanks for that chris.
my consultant didnt even mention telling the dvla!
i'm on a waiting list of 20 weeks for my cpap trial, i'm going to ring him an see if i'm ok to carry on driving (although he did class me as having mild osa, not sure if that makes a difference?)
i don't fancy a £1000 fine though!
this whole scenario just gets worse, i hope this cpap is worth it!

thanks again
amanda

Hi Amanda

It really is worth it! I originally went to see an ENT surgeon because of rhinitus and it was him that diagnosed OSA! I then had a wait of about 8 weeks before my cpap trial. I did it at home, all wired up to a monitor, over a weekend and on the MOnday morning I went back and they gave me my machine. I went back again about 3 months later to check it and now I only go once every six months for a weigh in and to have the machine re-calibrated and the measurements taken off.

It is a pain but well worth it.

Hope you don't have to wait too long.

Chris

hello chris,

well today i went to my employers occupational health bods, they have advised me that i am covered under the disability discrimination act? so basically they cant sack me!
phew...
as for my cpap trial i'll have to wait for a further 4 months unless my employers pay for me to have one earlier?
either way i'm happy as at least i know why i've felt so crap for so long and now it can be dealt with.
i have to say explaining this to friends and family is a bit of a nightmare as they constantly take the 'p' as i'm always asleep!
they'll wonder whats hit em when i'm well and full of energy!!

all the best
and thank you!

Hi Amanda

I know what you mean about feeling crap all the time and people not understanding. My bosses were at the point with me last year that they were going to give me capability tests and when I explained to them what exactly happened to me at night when I was asleep they were really shocked.

My family have been fine about it though and last week I actually went on a long car journey, dozed off and didn't snore! I even lasted about and hour before I became drowzy and that's only because it was hot! Previously I would nod off within 10 mins of sitting in the car (not when I was driving though - I'm still trying to pass my test!) and I would dribble and snore very loudly and even sitting up would stop breathing!

I've promised to take my machine into work one day and do my darth vader impression that they all laugh about when I tell them about it. I still have some disturbed sleep because the mask can be uncomfortable but hey at least (as my mum says) I'm standing up and breathing now and not in a permanent state of collapse. I even did the Race for Life the other weekend in the heat and did a really good time (I did only walk it though - not built for running!).

Anyway I do hope that you get your machine soon and that it makes a real difference to your life. If you ever want to chat just drop me a line.

Best wishes

Chris

Its been a while since ive been able to log onto the site. But it was such a buzz to see so many replies. So to my question is there anyone out there .... well there certainly is and even though i wouldnt wish the condition on anyone, hi and welcome, good to c u all:)