British Snoring & Sleep Apnoea Association

Sorry, I just have so many buzzing around in my mind, being newly diagnosed. I intend to stick around and re-pay, to any new members in the future, a little of the support I've had so far....

Is it usual to get diagnosed and eventually be given cpap without ever seeing a doctor? I saw my gp re the initial referral, sleep study undertaken (at home), saw my gp who had the diagnosis confirmed to her by the hospital doc (whoever he/she is!) and the next step is the 40-50 week wait for my cpap machine which, I am told, will be explained/set, etc, by a nurse.

This is probably a daft question which I will regret asking! but does it actually matter 'why' you have OSA... I suppose what I am asking is, is cpap the 'cure all' (using the term loosely) for osa whatever the cause ? I don't snore at all, that much I do know.

Denise

I think your question is a very good one, Denise, so keep on posting! However I'm not sure that you will feel any more knowledgeable with my answer.

OSA - Why? Well basically and anatomically your airway is obstructed (the O in OSA) and air cannot get into your lungs through your nose and/or mouth when you are asleep .. ie unconscious and not able to control your breathing. The obstruction, leads to your having the Sleep Apnoea (oSA), when you essentially stop breathing for a period of seconds or longer during your sleep. That means that oxygen is not getting into your bloodstream, and thus threatens the brain which needs to receive oxygen through your bloodstream constantly.

Certainly if you are overweight (as I am) there is the matter of folds of skin reducing access, but it can also apparently have a link with the brain not being able to remember to make you breathe.

I hope this helps in some matter, but it is MOST IMPORTANT to realise that it is NOT YOUR FAULT that you have OSA. There are LOADS of people who have it who have never been diagnosed, and also a shedload of folk like ourselves who have, and have learned/are learning to manage their condition.

There is no question of self-blame, self-guilt or feeling that you should have done something to stop yourself from having this condition. (OK perhaps you don't have any of these negative feelings but I BET there are those who are reading this who do .....)

The CPAP is the only permanent solution to the OSA problem regardless of whether you are a snorer or not. It keeps the airway permanently open and thus the problem of the obstruction goes away, and with it the apnoeas too.

Keep on posting - and welcome to the OSA Management Club!

Kind regards!

Hi Denise,

In answer to your first question, probably yes. I managed to get BUPA to pay for the first consultation before diagnosis (OSA is a specific exclusion) and I saw a doctor. Ever since I switched to NHS I've only seen technicians & nurses.

To the second one, I'd say only to a limited extent. Once you know it is OSA rather than CSA (where your brain doesn't tell you to breath when you are asleep) then the CPAP treatment is almost universal (and successful). The only benefit I can see from knowing why might be if there was something you could do about it.

MarkW

Hi Denise!

So far there hasn't been a better method for preventing apnoeas found than CPAP. Your airways collapse as you sleep and the compressed air is pumped through your nose (and mouth if you have a full face mask) and keeps your airways open so you breath normally as you sleep. My GP told me it can happen with a thicker neck or because the structure of the nose and/or mouth deviates to some degree. Whatever the reason, the muscles in the airways collapse as we sleep and need to be kept open.

If you are wondering what it is like to have a CPAP machine and wear a full face mask, you need to fiddle about with the mask a bit until it is comfortable against your face without leaking. There is a nose bridge that has 3 settings on it and you can adjust that and the straps - 2 round the head and 2 at the side - to suit yourself. Once you have that right you don't even notice it is on after a while. The mask is bigger than a standard oxygen mask because it spreads wider over your face to prevent leaks. The CPAP machine itself is very quiet. The air pumps rythmically into your nose/mouth with sufficient force to open your airways but is not too strong or uncomfortable. You will be conscious at first of the noise of the air being expelled out of the mask - your partner won't but it is right next to your ear! - but you will very quickly get used to it and ignore it.

As for not seeing a doctor, I'm afraid that isn't possible. CPAP machines can only be issued on prescription, whether you have the test done privately or on the NHS.

I hope I have managed to answer some of your queries. xxxxx

Thank you all.. again! I sometimes don't explain myself too well (I blame the brain fog!)... what I meant to ask was - how is obstructive sleep apnoea differentiated from central sleep apnoea...or am I missing the point altogether lol ! are we saying that CSA and OSA are treated in exactly the same fashion (i.e. with a cpap machine) so it doesn't matter a jot which you have?

My question re 'seeing a specialist'... I've noted from the forum that many (most?) people are/have been under the care of a specialist - or have at least *seen* a doctor at a hospital at some point. I haven't, and won't it seems... is that fairly usual?.. from gp, to home sleep study, to diagnosis, to nurse who 'dispenses' (for want of a better word!) cpap machine ?


Sorry to ramble and sound pedantic.. I'm just one of those who has to have everything clear in my mind before I can - sorry for pun ! - rest easy.

Denise

Hi Denise,

Well, I'm no medic but as I understand it OSA is caused by a collapse of the airways whereas CPA is caused by a cumulative loss of the brain cells that control respiration. It occurs mainly in the elderly and people with neurodegenerative diseases such as Parkinsons. In CPA the cell loss eventually leads to a breakdown of the normal breathing and arousal mechanisms.

As for your route to therapy, I would think it IS unusual for Sleep Apnoea to be tested for and diagnosed in a general practice, but not beyond the bounds of possibility. Perhaps your GP has training in the diagnosis and treatment of sleep disorders, who knows? I think it would also be unusual for any general practice to have sleep disorder diagnostic equipment or CPAP machines for trials. However, you are right when you say the usual route - and I haven't heard of yours before - is for the GP to refer the patient to a consultant in a sleep clinic. The consultant carries out an initial interview then orders either the home test or a full polysomnagraphic overnight test at the clinic conducted by a specialist technician. The results are then analysed and a diagnosis made by the consultant, who prescribes the required treatment. If a CPAP machine is to be issued, again instruction for its use and fitting of the mask is normally carried out by a sleep technician, not a nurse. Who knows - perhaps there is a nurse in your general practice who is a qualified sleep technician! It's beginning to sound like a wonderful place! The response to treatment is usually monitored after two weeks to iron out any problems you may be having with the machine/and or mask and at this stage the machine is set to the optimum pressure for you, as recorded by the machine's smart card (This isn't necessary if the machine you have is autoadjusting). Then it is checked regularly to see how the therapy is progressing.

I hope this puts your mind at rest - best wishes xxxxxxx

Hi Denise,

I think I went via a relatively unusual route as I contacted Respironics, through the Transport Safety Group (TSG), after seeing an advert at a motorway services. I was sent a home test which proved I had OSA and then an auto CPAP which I've now been happily using for a couple of months, the only actual contact I have had with medical staff is my GP who since I got the CPAP has asked me questions about OSA! a specialist a couple of years previously who told me there was no funding and finally the Doctor employed by the TSG to prescribe CPAP.

Having gone this way I've been extremely impressed by the help and support I've been offered not just by the specialists but by other sufferers on this forum.

I think its a theme expressed quite regularly but if you can get hold of a CPAP by whatever means (NHS or private) its well worth it and the improvement in your quality of life is unbelievable.