British Snoring & Sleep Apnoea Association

Thanks Ryebase! This will broaden my horizons considerably (narrowboat holidays were a happy memory of the past, so I can try again!). Many thanks and hope you both enjoy your holidays!

[quote]
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.
[/quote]

My husband has just been diagnosed this week with OSA, and had only been using the CPAP for one night before we went camping for a weekend. He asked the company that supplied the CPAP to provide an adaptor so that he could run his CPAP off a leisure battery (posh car battery with a carry handle). UK campsites are very good about allowing you to charge the battery at their main office we found, but leisure batteries can last for three nights use of CPAP.

I hope this helps if you are a caming sort of person.

XX

Well it has now been 3 nights and things are getting better.

Have found a way to sleep comfortably without hose problems.

Last two nights only needed to get up once for the loo, this is a major improvement.

Feeling less tired during the day already, but I think this will just continue to improve. I do have a fair amount of sleep to catch up on!

Machine is quiet and does not disturb and not having any air leak problems.

Overall a much happier person.

Glen, keep chasing them up but remember that they do have limited resources - it will be worth it in long run.

Good luck.

Stuart

I am pinning so much hope on this thing......I shouldn't have high expectations really but it is good that one night and you felt some benefit, even if it wasn;t 100% comfortable.

I might have to phone the hospital and see whereabouts on the list I actually am now.

Good luck for tonight!

Well,

after locating suitable socket for CPAP and deciding that I was almost ready I tried a new ritual item of a mug of horlicks (normally cup of tea man!)

I strapped myself into full face mask, and pressed the button and then tried to get comfortable so that during th 30 minsutes ramp up I would be asleep as quick as possible.

Don't know if I made it in 30 minutes but the night went much better than expected, yes i woke a few times as I turned over and garrotted myself on the hose. The mask did not leak (as far as I could tell) and I only needed to get up twice for the loo.

Woke 5 minutes before my alarm feeling better than normal, no headache etc.

I had been waking on and off for hour or so before this and noted how cold the air was.......... too soon to tell re need for humidifier.

All in all a less daunting experience than expected. Will try again tonight.

Stuart

I wonder how Stuart got on last night :D

I'm still waiting for my next appt to get "fitted" for the CPAP. It's been a month since diagnosis now.

Had the results of my Sleep Study today. I stop breathing 52 times each hour, my Oxygen levels fall to 92.7%.

Got my RESMED CPAP and full face mask today - this is the trial machine with variable output, back to clinic in 2 weeks to hopefully get a nice little resmed s8.

Cannot wait to try the machine tonight. I will of course report back.

Stuart

[quote="Alsacienne"]
It is also a relief to know that OSA is not 'caused by' or is the 'fault' of the sufferer.
[/quote]
:D

This reminded me that last night I was having a really bad time sleeping, I am off on holiday at 4am this morning so I think that was on my mind, I had heartburn and was stupidly wide awake.

I got up after 2 hrs trying to sleep, and then mucked about on the internet for an hour before deciding to try and hit the pillow again.

My boyfriend woke me up this morning and said "you were snoring for Britain glen". hmm.......I think that was in his imagination since I was awake for a good 4 hours while he himself was snoring!!!!

(All that aside he is pretty supportive really!)

[quote="Stuart"]
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.
[/quote]
While my consultant told me that I will have another overnight stay while they monitor the air pressure required to keep the airways open and fit me for the machine.

I read somewhere above that there seems to be a postcode lottery, there also seems to be a great difference in how this condition is handled and the level of importance placed upon it.

I know this might sound completely daft as well, but I'm actually sleeping worse since the diagnosis cause I keep panicking that I can't breathe properly and waking myself up.

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.

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

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

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. :D I am positive that my quality of life will increase too.

Hi Glen!

[quote]
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?
[/quote]

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

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 [i]relatively[/i] 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