British Snoring & Sleep Apnoea Association

Hi,

So glad I found this place, I feel relieved it is not just me feeling this way.

I have been really run down and sleepy for about 3 years or so now, was diagnosed with hypertension and given drugs to try and combat this (4 tablets a day at one point). I fall asleep when watching TV, films, reading. even having a cuppa. I have even nodded off whilst discussing a mortgage with a customer at work!

My performance at work used to be excellent and I and my branch won awards for top sales. about 3 years ago this all started to go downhill, I lost my focus and couldn't put my finger on it! I was put on formal performance programs (disciplinary) and was persuaded to take a step backwards for "less pressure". This helped some improvement in performance but still not to levels acceptable and I am currently on formal performance improvement as my sales are not high enough! In essense I could be within 6 months of being sacked! Thankfully with some good big cases over last few weeks I have met the action plan and should be ok (for now).

My personal life lacks direction and I have experienced some depression and feel very isolated as I don't hve the energy to try something new. I am overweight (have been for some time but lost quite a bit 3-4 yrs ago but this has crept back on and then some!) My self confidence is very low and at times feel like giving up. With work situation and personal life just feel like I can do nothing right!

I have complained to my GP of tiredness for over 2 years, I also have had lots of bad throats. Eventually I was referred to ENT who took a look and said my tonsils and adenoids are very large and may need to come out but they were more concerned about the tiredness and referred me to sleep clinic.

I had to go to another health trust and had the at home test about a month ago as yet I have not had the results. The nurse who showed me how to fit myself up said that she would be surprised if I did not have OSA given my symptoms etc.

I am concerned that if I am diagnosed as having OSA (in a way I hope I am as it would offer an explanation and way forward) that I may be unable to drive until I get CPAP. Given time for sleep study and results this could be months (or maybe I am just being pessimistic).

I have lost count of the number of times I have fallen asleep on friends sofa while watching a film....... the cheeky sods tected me last time to tell me I was snoring very loudly and could I stop as they couldn't hear the film! I just want this resolving.

As I said it is great to find this site! Sorry about the rambling post but so much I wanted to say/explain in introduction. It's damn good to get it off my chest!

Stuart

Hi Stuart,
Just wanted to say hello and to assure you that you are NOT alone.
I have just been diagnosed as having severe OSA and am going to be fitted for a trial CPAP this evening.
Hang in there. From everything I have heard once you get CPAP you start to get your old life back.
I too am overweight and lost 3-4 stone some time ago only for it to come back plus some. Again I am told just getting on the CPAP program can lose you some weight as you start to burn more calories as you have more energy.
At the moment its all I can do to get up off the sofa once I get home from work and if I do do any exercise such as swimming I am totally cream crackered the next day.
So just remember you do not suffer alone.
Chris

Stuart,
well you've come to the right place to air your worries & concerns.

from a personal point of view,i did most of what you've been / are doing,falling asleep during conversations,watching tv,whilst being driven in cars & the worst would be,i'd just got out of bed in the mornings,& fall asleep in my cup of tea.

but things got to such a state that i was given a cpap instantly & all the tests had been done while i had been heavily sedated,but about six or months down the line,i had another sleep study done in my own bed because the medics said i'd be more relaxed @ home,but i wasd still aware of the things that were attached,the results were taken back first thing the next morning.

so after being an osa sufferer for 12 yrs & 2 different machines,i can positively say,that if your results show you need a cpap,& follow the medics suggestions to the letter,you should be just fine.

Thank you for the replies and the welcome to this forum.

As the main topic says I have yet to get results from sleep study. It has been 4 weeks, surely it cannot take that long to plug in the unit to the PC????

I think it is just delays with referring consultant who will be sent them, have made appointment to see my GP on Wednesday for a medication review for my hypertension. I am hoping they may have had some communication from the hospital re the sleep study. I will of course let you know.

Does the NHS always provide the required equipment for CPAP? I have heard that it can be a postcode lottery as with many other medical situations.

I am a mouth breather so this is likely to affect the type of mask as far as my own research tells me. Anyone had experience of full face masks?

As a single bloke I think it may be difficult to explain to any new GF that I need to wear a mask etc and sound and look like Darth Vader! But if I leave it off one night I am sure they will prefer to Darth Vader look/sound to my horrendous snoring. I have been known to empty rooms, when we go camping I have complaints for miles around!!!

Maybe there should be a OSA dating site - save a whole lot of explanations being needed!!!!!

(only joking btw)

Thanks once again for the welcome.

Stuart

hello stuart,

this is just a post to tell you that despite how rotten you may be feeling at the moment, you are not alone.

my story is very simular to yours, except i don't snore!

here goes.......
constantly cream crackered, forget everything, impossible to watch a film from start to finish, struggling at work, looking blankly at my screen, getting home and falling asleep, start a sentence then forget what i am saying, terrible irritability (no it was not PMT everyday), dry mouth and chronic morning headaches, waking up in the night urgently needing to loo, very low mood, avoid going out socially as too tired and couldn't be bothered.........
sound familiar?

i had my sleep study in feb and i had the results in june, devastated wasn't the word i was so upset but in the same time relieved as i honestly thought at one point i was losing the plot.
'amanda you haven't had a good nights sleep in years' he said...then he showed me the treatment.....'it isn't very glam'
well what a blinkin understatement that is, i thought to myself ...just trying to think of how the heck can i explain this to a potential partner.
maybe i could try the...'are you a trekky fan?' approach.

joking apart i've only had my cpap for 3 weeks, it isn't nice, seductive or sensual.....
HOWEVER i can honestly say if you get the mask sitting comfortably, and you are really tired you can sleep with it on.
after a fair few blips i think i am feeling the benefit, my need to sleep in the day has almost stopped.
i watched a whole film last night!!!
i feel more alert.
i am not so 'shirty'.

if you are diagnosed with osa you are covered by the disability discrimination act, which means your employers cannot get rig of you because of this, they have to make reasonable adjustments to your job to if this will help you.
you need to inform the dvla, they send you a form, your consultant should tell you if you are ok to drive, i've been fine, i rang my car insurance and they thanked me for telling them that all.
no increased premium!

i think an osa dating site would be a good idea!
it would save us single osa sufferers the embarrassment of explaining cpap!

i wish you all the best.
take care.

amanda

Have you had your study? I too have just recently been diagnosed and it is good to find you aren't alone! I think this year my job performance has really begun to deteriorate. I just can't seem to get it together! I'm hiding it well though! I also have serious weight problems. I so want to exercise but I just don't have the oompa to do it . I now have my cpap and am feeling a wee bit better. I am having a hard time adjusting to the mask. Hopefully that will improve!

Just to say Hi and Welcome to all these brave people ready to admit to having OSA problems. Please do try to persevere with your masks and CPAPS because they really are the solution to the problem and the associated health issues (high BP, strokes, lack of oxygen to the brain etc).

Yes I know that it's hard to accept that 'suddenly' this serious problem seems to have landed in your lap, even if you hadn't noticed it creeping up on you. There are LOADS of folk like us, and, just because it isn't as visible as a broken leg or the like, doesn't mean that you should let folk tease you - how horrible so-called friends can be.

Just take it one day - or should I say one night - at a time, and ask your partner for support if you feel you need it. A truly loving partner will be more concerned with you having a good night's sleep and living life to the full rather than cosmetic appearances.

Keep hanging on there - and keep posting. Whilst not all problems can be solved, members seem to have lots of useful tips on how to make the problems manageable, and are happy to share them and support others in the same boat.

Alsa

Dear Stuart,

I can accept what you are saying about the old postcode lottery... Over here in Newcastle we have an excellent service, within 3 weeks of referall, I had had an 'at home' sleep study, a variable pressure machine study and now im fully CPAPped although the full face mask takes some getting used to!. Stamp your'e feet and tell youre GP you want to come to the Toon !!

Lesley

I have just heard from the hospital that dealt with my sleep study, they have not given me any results or confirmed OSA but I am going for CPAP trial on 25 January 2006.

In a way I am pleased that there is progress and it seems that OSA has been proven (else why else get me back for CPAP trial).

As nothing has been confirmed I take it there is no need as yet to inform DVLA. I have not been told in any way that I have OSA just they want me back for cpap trial.

I am looking forward to the trial but would like to know more from other's experiences.

Any info would be helpful.

Stuart

Hello,
I'm new too. New to OSA and new to the site. I've read quite a lot of posts though over the past few days and thought it would be useful to register.

Stuart, I was referred to the ENT in March 2004, got an appointment in late August 2004, was immediately referred to the Sleep Clinic, which took till May 2005 to get an appointment and i finally got my results (it apparently took so long cause they had to re-refer me back from Sleep to ENT) on 23rd Dec 2005. It's taken me well over a year to get a diagnosis for something that appears to be relatively easy and non invasive (ie surgery) to treat.

I was shocked when I got the diagnosis, and shocked by the lack of information beyond the basic "you have OSA, you need a CPAP" type of talk. I thought that my snoring might be easily treated with a minor procedure, I didn't realise there was a likelihood that it was a lifelong condition.

I was told nothing of the potential risks of having OSA, nothing about the benefits of CPAP and so far all my information has come from online sources.

I have lots of silly questions in my head now (the first being, when am i going to get my trial of the CPAP machine - it seems like the wait for that could be a long one as well).
I also have questions like is this a non paying prescription service? How long does an oxygen canister last? How do I get my oxygen? I toss and turn at night, how will the mask cope with that? How heavy is the equipment? What about taking it on holiday? What about Disability rights?

I'm sure there are more daft questions that I need answers to, and i have found some answers here and in other places (particularly about travel issues).

I really want a good nights sleep. I crave sleep. I hope that the CPAP gives more benefits than problems for me. I'm worried how it will affect my partner.

In short the lack of knowledge and information from my consultant has left me feeling like I am floundering. It's left me scared and nervous.

I'm glad i have a reason for feeling so awful all the time, but now I know i want it fixed. I want to be fixed.

glen

Hi Glen!



I am so glad that you had the courage to post about your fears, questions and anger at the lack of common knowledge about CPAPS and OSA.

It almost feels as though one has joined an 'exclusive club' - that is kept secret from everyone, and seems somewhat overwhelming at first. I have been using a CPAP for over 7 years now, and despite having a kind GP and specialist, had to learn a lot from the net. I do find that the UK press have not latched on to OSA and CPAPS as they do for ME, cancer or Epilepsy - just to take 3 examples of current mediatised life threatening conditions. I always laugh hollowly when I read that the 'cure' for snoring is the 'tennis ball sewn in the back of pyjamas' or external nose openers!

No, we have to come to terms with the fact that OSA IS a serious condition, and that it has to have regular treatment - ie the use of the CPAP every time you go to sleep. BUT, and it's this big BUT that makes OSA less of a worry than other 'lifetime' conditions, it is MANAGEABLE. And you can lead a full and fruitful life, in better health and for its full term by using the CPAP correctly and enjoy a better quality of life after a good night's sleep.

It will take time to come to accept your condition - OSA - and sadly there will always be ignorant people around who don't know anything about it and laugh at it. IGNORE THEM. They aren't going to do you any good. You just stick to managing your condition and TAKE NO NOTICE. There are far more OSA sufferers on this planet than you might think - and even more who have not yet been diagnosed, nor even appreciate that they are at risk. You are NOT an oddity, nor really should you consider yourself 'disabled' because your CPAP 'enables' you to live life better than before!

OK this is a long and rather rambling post - but I sense that you feel rather angry and frustrated at the lack of personal information given to you, and the feeling of suddenly having to change your sleeping arrangements FOR LIFE .... which is a great shock even if you know ultimately it will do you good.

Please try to stick with it! After a while it WILL seem normal.

I cannot really answer many of your questions specifically because I don't live in the UK and the medical 'rules' here are different, but I can help a bit.

A CPAP machine does not need an oxygen cylinder at all. It takes air out of the room that you are in and passes it though a compressor, to put it under the right pressure to keep your airway open. The pressurised air is then delivered to you by a tube (I call mine my elephant's trunk!) to a mask that covers either your nose or both your nose and mouth. You will hear a tiny hiss as there is a safety feature incorporated so that you do not re-breathe the air. The air then passes down your nose (and/or mouth) and disperses. You may find unfortunately that you tend to fart more because you are swallowing more air using the CPAP than you did before.
Incidentally the air from the room is filtered before it is compressed, and so you will need to change your filters regularly - usually a special lint-type pad about 2.5 inches by 1 inch.

The size of each machine varies, but I would say that they should be the size of a shoe box at most, and are relatively light - about 2 kg max. They are supplied with a discrete carrying case, and so you should not feel that anybody can see what you are carrying is different from any computer lap top or portable DVD.

I travel regularly by air - not just to the UK, but to the USA (check your voltage!!!), Mexico, and all over Europe. I also travel by ferry.

There is NO PROBLEM with taking your CPAP with you - but please make sure that you get a LETTER FROM YOUR DOCTOR or the SLEEP CLINIC to affirm that you have OSA and that this CPAP has been prescribed for you.
Customs and security sometimes check it, but I am glad that this makes them more aware about OSA, but this never interferes with the running of the machine. NEVER put your CPAP in hold baggage. Incidentally as a CPAP is considered medical equipment, you should be allowed to carry it without it counting towards the weight limit for handbaggage imposed by the airlines.

However, it is impossible to use it 'en route' when flying, because there are no power points in the cabin. You can certainly use it when using a ferry cabin (often shaver sockets will take an adapter),. Long distance buses cause the same problems as flying.

But two vital accessories required when travelling are:

1) A travel adapter for the country you are visiting (easily bought at Dixons, Boots or other travel shops ... or even at the airport or ferry port)

2) An extension cable - so many hotel rooms do not have bedside sockets, and a cable spares you the need to rearrange the whole bedroom because the majority of sockets are by the TV or tea tray, opposite the bed!

These are not difficult to find, and help to make travel much easier. Chambermaids are very good at dusting around it, and leaving it alone, so don't worry that it will be 'fiddled with' when you are out.

Travelling with a CPAP is really easy and you can enjoy lots of wonderful holidays, though I'm afraid that until someone invents a portable generator (quickly please!!) you really shouldn't consider gulet cruises or camping or very long distance coach holidays (involving overnights on a coach) because you need an electricity supply.

I'm sorry that I can't help about disability rights issues - try your local Citizens Advice Bureau - and if you do require oxygen (which I think is highly unlikely), BOC supplies individuals too. Your local Red Cross centre should be a good source of advice, though I would expect the sleep clinic or the hospital to advise you once you are supplied with your machine.

Glen, welcome to our OSA world. It's very much an international club! Life is to be lived to the full, and with the help of the sleep centre and other CPAP users you will come to terms with OSA. Do not hesitate to ask as many questions as you need - none of them will ever be considered as silly - and keep persevering. There are a lot of good things waiting to happen in your life, and with OSA management and the CPAP you have nothing to lose and everything to gain.

Kindest regards,

Alsa

Thanks for the reply Alsa, it just goes to show how little my doctor actually told me, becuase he gave me the impression that I would be needing oxygen, but what you say makes much more sense. I also understand why humidifiers are useful to some now.

I hope by the time I go for the trial that I am armed with many more questions for him. Sometimes I think we get overwhelmed by doctors and they fail to realise the impact of what they say to people.

I can't wait to get a decent nights sleep and not be exhausted every day. I am positive that my quality of life will increase too.

Alsa I also found your post really kind and helpful.
Glen I have the oxygen because of my asthma my lungs shut down overnight. The cpap has helped that too actually.
Info does seem limited I have a full face mask but have had to use some padding as my skin is very fragile from steroids. Guess the seal might not be as good will ask on friday.
Nice to join the club as such and feel less alone. Fortunately have lovely hubby who is very laid back. Kids want to name new machine too!
Den

I am very dissapointed at the lack of awareness of OSA in general but must say that the medical profession are not that good at talking about it either.

When I went for sleep study they basically said here is how the monitoring machine needs to be connected, if you have it you will be back for CPAP. At that point I knew nothing about CPAP - it could have been major surgery for as much as I knew.

My appointment letter to get my CPAP trial says I will be there for no more than 30 minutes as this is all it takes to fit me up with machine and show me how to use it. It is a sleep technician that I will see and not a consultant.

I was referred by ENT department at another hospital, they never explained anything and said the sleep specialist will cover the condition off in full. Without the 'net I would know very little.

Thanks to resources like this one we can be informed. Who though is going to inform the masses and educate those ignorant to OSA. As rightly said many out there have no idea that such a serious condition exists never mind how it is treated.

Stuart

Thanks folks for your kind words. Please understand that I am not trying to teach my grandmother or anyone else to suck eggs, but I believe that OSA sufferers need support and advice because so few doctors are up-to-date with their knowledge of OSA, and expect a consultant to explain, which they either often don't, or don't in language that a newbie can understand. After all, time is money even on the NHS!!

Stuart, your sleep technician will be far more clued up than the consultant because s/he works with the condition and the equipment everyday, and will be able to answer (or find out the answer) to any questions you have. So make your list, and make it a long 'un!!! See also if you can get a personal contact number so that you can contact him/her easily when you have a question or need reassurance. That is part of the job, so don't let yourself get fobbed off!

I only wish I had known that this site existed earlier. I felt very alone with my OSA and CPAP, but luckily I have a loving husband and son who took it seriously and a helpful technician, GP and ORL specialist.

It is also a relief to know that OSA is not 'caused by' or is the 'fault' of the sufferer. It's important not to let misplaced guilt or low self-esteem hinder your recovery. Thanks to a site like this, sharing thoughts, feelings and information can make the world a better place.