British Snoring & Sleep Apnoea Association

Keep pushing them, and tell them that you'll be happy to accept a cancellation appointment, even at short notice.

I can see why you are worried, especially as they said to stay by the phone and not travel as they had worrying results! It seems very lax of the hospital not to have contacted at least your GP by now to make him aware of any treatment that you may need.

Personally I would ring the hospital again and insist on an appointment to get the results of your tests. Your hospital's lack of care in dealing with your calls to them is disgraceful. My sleep clinic is amazing, the admin staff and the technicians are thoughtful and always willing to answer questions and give advice.

If you still can't get any info from the hospital after your next call, ask for a complaint form to be sent to you or contact your local Hospital Trust and make a complaint direct to the Trust. This way at least you can get your complaint in writing without having the problem of dealing with them over the phone.

You must keep on chasing them, they must realise that having sleep apnoea is a health and safety issue if you drive and affects your quality of life if it goes untreated.

I hope that you get some results from the hospital soon.

Hi all,
I had a home sleep study on 4th August 2011 & got told that i have OSA. Unfortunately the doctor didn't tell me much other than some of the readings were very worrying & that he wanted me to see the consultant asap & that i shouldn't make plans to travel stay near the phone so i am available to come in at short notice.
Since having the home study i have had no correspondence back from the hospital i am going out of my mind worrying so i decided to call them no mean feat for me as i am deaf & struggle to use the telephone when talking to strangers the secretary was less than helpful would not let me talk to the doctor i saw or to the consultant all they said was i was being refered back to ENT as i had refused a CPAP i explained that i thought they might have mistaken me for someone else as i can not refuse something i have never been offered & re-quoted my hospital number.

Surprise,surprise the attitude changed but still not give me any answers to my questions to me to see my GP to see report so of i trotted only for GP to say sorry but i have not recieved the report phone the hospital i blew a gasket lol decided to give up then i found you guys so thought would ask if anybody else been treated like this & where i should go to make formal complaint i already have issues with mental health & the not knowing is doing nothing to aid this sorry if i waffled on but thought it best to give the full picture so that hopefully someone can guide me.

thanking you all in advance nutnutdorset(Carl)

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:)

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

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

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

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

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

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........

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.

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.

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

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.

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. :lol:

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 :D

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 :arrow:

So i thought i'd share this with you all :P