British Snoring & Sleep Apnoea Association

HI, I need some help and advice about what options I have to deal with sleep apnea and would be grateful if you can advise me. I was diagnosed with sleep apnea and given, on Thursday, a cpap machine for this.

In the consultation at Reading Hospital, the Technician was very helpful and patient with me and I was there for over an hour along with my wife. The first problem was that I could not tolerate the face mask that was fitted (I actually had a mild panic attack) as I suffer from what I call a form of claustrophobia of having anything on my face. It stems from a disastrous scuba diving holiday excursion some years back where the people doing the course had not turned on my air supply and I nearly died. Since then I can’t stand anything fitted to my face even a full bodied crash helmet.

Because of this she gave me a different mask that just keeps in place some attachments that fit to my nostrils. I tried this in the office and although was not happy, I tolerated this for several minutes while she fitted it out. I took the machine home and after everyone had gone to bed, I stayed up and tried it out while watching the tv (to take my mind off the strangeness of the new situation as I was advised). The sensation was not pleasant for me and I kept having little ‘panic attacks’ that I was not able to breathe. I managed to keep this running for 4 hours (but was not able to sleep while on the machine) before I had to give up as I was becoming quite stressed. I went to bed and vowed to try again the following day. The next time I only managed about an hour before I could take it no more. My reaction was even more severe than the privious day.

I do not believe I can use the cpap machine good as it may be as I don’t feel I can get over my fear of the mask and the effect it has with my breathing (not being able to open my mouth makes me feel very uncomfortable). I am looking for non cpap solutions to this now and would like to know what I can do? I am overweight at 20 stone and 5 foot 9inches in height. I have never felt unwell due to my size nor have I thought I had any problems with my sleeping (it was my wife to urged me to seek help), I just liked the od afternoon nap. I am now heavily motivated to lose weight and have started already.

When I was given the machine, I told her that I am travelling all next week in Japan and said that I would not be taking the cpap with me in case it got damaged. Because of this delay, she could only get me a review appointment to see her for 5 weeks at which time she will review my situation. She does not know of my problems at this moment and I know she is the one I need to talk with but in the mean time I am looking for options.

Even though it has only been 2 days, my fear will not let me even pick up the macjine. I want to know what else I can do. I have read on the web of people willing to sell me miracle cures for $49 but I would have thought if these techniques really worked, others would be talking about them openly. I would like to know if there is any non cpap solutions for me such as increasing the strength of my neck muscles (one suggestion I saw on the web) and lying on my side with a full body pillow (normally used by pregnant women to stay on my side) operations to remove skin and of course losing weight.

I am a 50 year old sensible man who runs his own one man business and it is not like me to be afraid of a challenge but this has got me stressed out big time.

I would be grateful for any help and advice you could offer.
Kevin Lee

Hi Kevin and a BIG welcome to the forum.

I'm sorry to hear of your panic attack episodes, and the valid reasons behind them. I too suffered from panic attacks (pre-CPAP) and found that Thorsens published a good book called Panic Attacks by Christine Ingram - that knowing my luck will be out of print!!! - which helped me enormously.

I am sure that a lot more of our members will give you helpful advice, but I just wanted to stress as soon as possible, DO NOT PART WITH ANY MONEY FOR A 'QUICK FIX' QUACK IDEA, such as a ring or sensor etc. These are no good to you and just let less pleasant people prey on those who are suffering from a medical condition and have not 'found their feet yet'.

I found that CPAP is the best treatment for managing OSA, and taking control of your life again, and it really does have to be worked at and persevered with to make it effective. I think that your 4 hours with the nasal pillows is worth celebrating!!!! WELL DONE!!!

Yes it doesn't feel too good to have your face covered, that's why some of us (like me) use NASAL masks whilst others prefer FULL FACE (nose and mouth) masks and others NASAL PILLOWS like you tried. It's not sexy in any shape or form, but it does save you from having a heart attack or a stoke because of your blood not being able to carry oxygen to your brain whilst you sleep, because your throat closes up and the oxygen-rich air simply does not get through to your lungs.

When you are able to accept and use your CPAP, your life becomes so much better, not only because you immediately cut your risk of these serious heart and brain conditions, but because you will feel so much better during the day because the qualityof your sleep has improved beyond measure.

You can do everything that you might not be able to do now, but, yes, it's a hassle, and can damage your self-esteem IF you let it. But remember that your wife persuaded you to seek advice, and you owe it to her to keep on living a full and happy life, and not snoring your head off keeping her awake at night! (My OH can tell you all about 30 years hell of my snoring!!!)

There are so many more of us than you might suspect. After all no one looks into bedrooms at night (well apart from shall we say pervs to put it politely!!! ) and there are no obvious signs that one uses a CPAP so it is very much a hidden condition as far as the 'great unwashed' are concerned! But we are an ever-increasing group, and there is NO SHAME in having OSA and managing this with a CPAP machine! Even if you are a tad generously proportioned, OSA is NOT something that just affects large folk, beanpoles can suffer from it too! And it's not anything that you brought on your self but not doing what everybody or anybody has told you to do. It's unfortunate that you've got it, but you can and will manage your life with it to have 100% quality of life, and a lot longer one than if you hadn't been diagnosed and given CPAP therapy (we won't talk about falling under a bus!!).

Please do try to persevere. I'm in my 50s, certainly not a slim lady but I am trying, and have realised that my life is worth taking hold of with both hands and living it to the full even though I have OSA.

IT IS VERY HARD, but please persevere with your CPAP treatment. You might ask for counselling as to your feelings with face masks, which is a very normal and honest fear. I believe that there is a type of talking therapy that is very successful called CBT - sorry I can't remember what the acronym stands for at the moment - and you are really not alone with this. Do enlist help from your dear lady and family and we'll be happy to help advise and encourage as and when you need us.

Welcome again, and please keep in touch xxxx

I was very sorry to read about your problems. You might simply try loosening the mask a little so you don't feel so trapped and threatened by it. Maybe just set yourself the task of wearing it during the day until you do feel more comfortable, which will come with gradual exposure. Then later re-adjust the straps and you will begin to feel the benefits when you use it at night.

There are corrective operations available in the USA, but their success rate isn't good. Stick with the CPAP - it frightened me a little bit to begin with too but it's the best treatment currently available for most people. By the way, I'm 50 years old and skinny, but that didn't stop me getting OSA. Keep the faith!

Kevin re CBT and panic

Firstly let me reassure you the story you gave, I a am absaluty certain it will have an affect with how you get attached with cpap, and yes you are NOT going mad, although you may feel it at times. Panic and the many symptoms of panic, is quite a normal symptom of depression and as such can also be a symptom of osa, especialy before being managed with CPAP.

CBT I also would suggest is by far the best course of treatment for panic, CBT stands for
Cognitive the way we think about our problems, along with the thoughts of what it realy is. do not be mislead, panic is a well known state of reaction to save our life, in your case you may well be having these symptoms when they are not required, yet from the original fear when diving.
Behavioural, as again as it sounds how we behahave, and looking with certain scenarios, looking at different behavioural ways to show the original fear may not necessarily be rational, although well driven from the accident.
Therapy, as suggested treatment of talking very painless, and often at your own rate, of what you can cope with.

I would suggest from my original professional experience, you will already be well on the way of treating yourself, once you get attached to cpap.
Therefore if you use the mask during the day to get used to it on your face, and or even put the machine on whilst awake, you will soon find out the original fear may not come true.

Your panic is well grounded with the accident, in your case trusting some body to do their job, is the problem, take control of it yourself, or if you have to rely upon some one, let it be some one you can realy trust. In your case you may well have a fear you will die, or not be able to breath, that is causing the original fear of claustraphobia.
Yet if you look at OSA, one of the very basic symptoms, you already stop breathing whilst asleep, (apnea's) yet our body has several startegies to, preserve life, hence kicking turning over, and waking ourselves up, so as to breath again. Hence you already are looking at one the basic fears in the eye, as you are still here.

Prior to me retiring, I was Community Psychiatric Nurse with a RMN, and BSc qualification prior to retiring, although I do not pratctice, I do have several self help leaflets on panic, anxiety, so if you pm me I am happy to email them to you.

If you decide to the therapy route, CBT is the best method, although you may not be able to get it on the nhs, unless your gp can convince the local mental health team as essential to your life with cpap, ironic cbt, is also the proven method of getting attached to cpap, but would doubt that will be seen by the mental health team. If you google CBT, and search for there professional body site, you may get more advice, but do not go with people if they do not have the CBT qualification.

Good luck

Hi To you all. Thank you for your advice and comments. I have spoken with my wife since then and have agreed to give it another go when I get back from Japan. I have seen that perhapes I did move to fast and setting 4 hours on my first go when expecting to go all night (and sleep) was a bit much. I will try it out during the day for a while and build up slowly from a few mins. and see how it goes.

However on a diferent note, I am not happy with using this machine for the rest of my life. I have been looking on the web to see what cures this problem. So far with no real solution and a lot of sharks. I did find some sugestions and wounder if you guys have done anything similar.

1. The technition who set me up told me that if I strengthen my neck musseles this would help. Does anyone have any 'good' exersises?
2. The tech also said if I could sing like Paverotty, this will help. I have found some throat exersies to do which I will start in my hotel room in Japan....
3. Obviously getting rid of the weight (6 lb in the first week off my 20 stone without realy trying).

My sister in law is a practice nurse and she has found some amusing reading in a medical mag that says playing the digerydoo (spelling not my good point) you know what Rolf harris plays, has been proven to give benifit to suffers when playing this for a few months. This leads me to belive that the throat exersies migh have some merit.

So who want to join my digerydoo club

Please let me know what other 'ideas' that others have heard about.
The only way I think I can do this is if I belive that this is a temp. situation and that I have control of what can help to fix it.

Comments please.

Hi Kevin
Re Panic Attacks, I used to suffer years ago, and like Leng says CBT is recognised as being good, though I have never tried it. I agree with Alsa over that book Allow me to quote from something I have put on the BBC boards four or five times

You can still get the book, very cheaply if you want from Amazon, there has been more than one edition of it, the link is to the older one that I read..
http://www.amazon.co.uk/Attacks-Thorson ... 066&sr=1-2
Wow one penny plus £2.75 postage, can't be bad
Hope things get better for you, all the best Ken

Hi Kevin,

The only real treatment for OSA is CPAP, some opperations help with limited success on some. As others have said, none of the quick fixes work that I know of and it is mostly companies cashing in.

Panic attacks are part of the course with a lot of people until they have been on CPAP for some time. Panic attacks before CPAP are quite common among those I have spoken to. However, it appears that your attacks are related to a diving incident which when you put the mask on brings a panic attack on.
You could try Nasal Pillows which just fit onto the nostrils and don't cover your face with a mask to the same extent (ask to see them), there are even various types of these, so don't give up. If you tent to be claustrophobic, this would be a better option for you. Even then you may have to persist, and ramping (starting off at a low pressure and building up) might make you panic, so try starting at full pressure and make yourself as calm and relaxed as you can before switching on.
Some people sit with the mask/nasal pillows on without the tubing attached so as they get used to it being on their face.

Hope this is of some help to you.

Don't worry, you are not alone. We all have problems and asking others for help may just get you through this, so any problems, just ask.

It is very hard to accept initially that you need to change something in your life for ever, regardless of what that change is. It is similar to how a diabetic feels when diagnosed - WHAT!! NO SUGAR EVER AGAIN!! - or a responsible lady when taking the contraceptive pill - WHAT!! FOREVER (ie until the menopause) IF I WANT TO ENSURE NO BABIES AND A FULL AND ACTIVE SEX LIFE!!! (after all this is an adult web forum isn't it Dan?).

And especially in the case of effective management of OSA, but using a CPAP, all night, every night and even during daytime naps. WHAT!! THAT THING!! IT WILL KILL MY SEX LIFE AND ALL MY MATES WILL LAUGH AT ME AND .............!!

Now it would be perhaps unhelpful to state the bleedin' obvious ... you MUST use a CPAP machine to manage your condition because there is NO CURE for OSA and you are at a far greater risk of a heart attack or stroke during your sleep if you don't.

Not only the b.o. but also very frightening, and we have ALL felt this, and have needed time to come to terms with it.

YES, it does mean an undesirable change in your sleeping habits and private life, but it also means YOU ARE IN CONTROL of a condition that needs effective management. And YES you will get your life back, and feel much better during the day because of good, refreshing and healing sleep at night.

All sounds a bit pie in the sky doesn't it. But it's true.

There is a known cycle for major changes in a person's life, usually - but not always -in this order. DENIAL - BARGAINING (what if I ...) - ANGER (against oneself and others) - DEPRESSION (in this case antidepressants are NOT helpful and often quite dangerous) - EDUCATION - LETTING GO and finally ACCEPTANCE.

The length of this cycle depends on the individual and there are no 'right' or 'wrong' directions or choices. It's PERSONAL and INDIVIDUAL.

I would only ask that you persevere, and get as much support as you can from those around you - us, family, medics, friends. Those who really love you will want you to be well and live a full and long life (with them of course!!), and those who make jokes at your expense or who turn their back on you are not really worth keeping up friendships with. You are not 'faking it', drawing attention to yourself, or looking for sympathy. You have a genuine, fully-documented but not widely known medical condition, just as disabling as diabetes, MS, or a broken leg, but it cannot be physically seen as the latter two can. You deserve love and support, because you as a person have not changed one iota, it's just that you had a hidden medical condition which has now become apparent and needs lifelong management, but which you can control.

Please hang on in there, and persevere. Any victory, however small is a victory, and deserves to be celebrated. I sincerely hope that a few months from now you will be able to look back at this inital period of OSA management and see positive progress. And we'll be here to help you and cheer you on every step of the way.

Kevin Re strenthening your neck muscles, I think the research on this is still not fully proven, I discussed this issue with my sleep clinic few weeks back, again she thought it was not an exact science, as I gather the thought originated with Pavarote being obese, yet not having osa, but may need to take into consideration his life time of muscle exercises in the throat and neck. I also gather Brazil as just started some rekindle this same thing, and say an add wanting more research on the subject few months ago.

From my own personal position I have being practicing the upper body neck shoulder muscle toning at the gymn, for about 6 weeks, I yet have to find any difference, infact my wife suggests it has got worse.

Try not to blame yourself with osa, yes there is a lot of social crap and supporting the blame with obesity and osa, but try and raise above it, I can assure you again that link has not been fully researched, and is probably more of a risk factor, rather than cause of it. I for example am not obese, yes large, with a large neck size, yet I still consider myself as quite fit, I can still run as far as most men my size, and think nothing of doing 90 minutes heavy exercises sessions at the local gymn 3 times per week.

Your health and driving licence, will be dependant on compliance to cpap, it is not easy, but believe us it will turn your life around. Give yourself time, read and study as much as you can of osa, but all research suggests cpap is by far the best method to treatment. Since being diganosed, I had concerns of blood pressure, cardio vascular problems including the increased risk of strokes and heart attack, yet in 9 months with cpap, and use of gymn, they have all been removed to less than for an average person my age.

Do keep writing, that form of letting people know, is also helping yourself, as you will soon see how much change you have made, as I replied to mac several weeks back when he questioned How will we know, and feel the changes, I suggested in many cases, we probably don't, but soon see changes and behaviours in self, when reflecting.

Kevin,
I do not know what to add, because the others have pretty much covered everything, but I would say, please try to persevere with CPAP.
Is there some way that you could overcome the claustrophobia, maybe hypnotism?
I know that if I did not use CPAP, then I probably would not be here now, it is that crucial to my and to your condition.
Good luck,
Andy

Hi, Guys, back from the land of the rising sun and so to starting again with CPAP. Thanks for all the advice, I have a unit that has the nasal pillows to answer one of the comments as I was real unhappy with the make systems; I will see how it goes. However, my real issue (may be denial) is that I don’t feel the symptoms that many are suggesting. I don’t feel bad tempered or irritable during the day, i don’t even get stressed with my work to any great degree (and I am self employed running an IT Touchscreen consultancy bussines and always needing to look for other work), I have always been a good riser in the morning and don’t feel tired. I doze several times a week during the day for about 20 mins but only when I am not concentrating on something, if I watch a film, then I watch the film as it is something I am interested in. It more often happens when the news is on and as this is always the same, ‘doom, gloom, credit crunch’ it does not hold my interest and it was this dropping off that made my wife make me seek advice. I have never had any issues with driving (ok as far as I know) as I get ‘fidgety’ in the car when I am getting tired so I know I need to have a break. This is the same ever since I started driving.
I real problem I suppose is accepting that this machine is the only solution. From my point of view, the explanation as to what this problem is and why I have got it seem to be contradictory. In my case, 20 stone and a 19” neck has been pointed to as the cause of why i ‘have this issue’. So to me it seems that the solution is to lose the weight and the neck size. But then several of you say you are not large. This means that my question must be why does the ‘thing’ happen to us? What is it we don’t have working that others in the world (including Pavarotti) do. Looking at the medical advice is seems to suggest the airways are blocked my loose skin, so where does this skin come from if it is not by being to large?
At the moment, I don’t get a choice, I have to get on with the machine or not drive again. But is does not mean I want to use this for the rest of my life (even if I get to the point where I can accept it during the night). By the way, does anyone know of the ‘recovery rate’ of people who use the CPAP? Do people just ‘accept’ it forever? I for one would like to ‘try’ the alternatives (even if it meant taking up the digery doo).
Finally, one of the problems I did have with the CPAP machine which I have not seen listed anywhere was the ‘smell’ it left with me all day. Now I don’t know what to say about the smell except to say it smelt of hospitals (which I have never liked) and I suppose it is due to the material they make the nasal pillows out of and the filters in the machine, but normal air has no smell to me, the CPAP does. Do others have this issue and if so what have you found to ‘change’ the smell?

Kevin
welcome back to blighty, sadly yes osa is plagued with obesity crap, and yes it probably is more due to facio cranial changing of shapes of our airways that is the problem. The americans went down the avernue of treatments as far back as late 80's with an estimated 80,000 survivors from vietnam having osa, probably as a way to show the need for it to be taken seriously, very few of those were obese. Yet cpap has proven itself with hundreds of thousands of people to be the most effective method.

I am a user of cpap, and hate to be classed as obese, or labeled but being an old nurse of the pschie industry I have first hand experience how society gets big kicks out of blaming people, but in our case we have no need to take it on board, but accept knowing they probably know no better, and find solutions to move forward. From a psychological process, denial is just another form of coming to terms we have grown older, changed, or not as perfect as we once believed we were. Rightly yes to get our licence back, we have to conform, and I did just, although I must admit although scary as it was in the begining, I tried to play the legal tightrope, by doing all the paperwork in the old method, as a way to stretch the time limit, so as not to be left without a licence, although curtailed my driving habits for a 3 week period.

I think compliance to cpap, is about knowing the fuller benefits of it, along with what the complications are of it, and trying to see it as just another challenge in lifes mysterious weaving patterns. I know since been on it, my BP is lower, my cardiovascular system is much better, my energy levels have improved greatly even to a point of not wanting to doze even with 15 hours activity, as yesterday driving 300 miles. walking 5 miles mixing socialising going out for a meal, and still feeling as fresh as I did earler in the day. My concentration levels improved greatly, sadly like you I never fully realised at that time amount of loss I had in those areas, probably due to the amount of oxygen starvation that comes with osa, especialy in the mornings. For me it was easy to adopt an attitude of just doing what was expected, yet often leaving the real thinking things to others.

From a legal perspective the DVLA, will communicate with your sleep clinic, and consultant but if we comply with treatment and use cpap, averaging from 5 hours per day, I don't think it will be a problem. Remember that is why when we have check up's, they will want a reading of our sim card, as a way of monitoring our ability to get attached. If I am to advice you with cpap, or not, there are an abundance of evidence that heart attacks, strokes, and many other cardivascular ailments are a direct result of severe osa. It all boils down to those apnea attacks, we actualy stop breathing, and our body then then starts to be starved of that most basic and vital gas to preserve life, oxygen.

Every person that cares for you will still say the same just comply, cost to you is little, but not to, the expences that cannot be measured. don't waste your money on many quackery ideas, that have very little long term research they actualy work.

Hi Kevin!

Welcome home! I'm very envious of your Japan trip, and hope you enjoyed it to the full.

Sadly coming home means that all the problems that one has before one leaves are still waiting for us on our return!

I am really glad that you are going to give your CPAP and nasal pillows a run for their money! It really is the way to manage OSA.

OSA cannot be cured. Sorry. And we all feel our stomachs lurch at this point. But it can be managed so that you can continue living a normal life with better health and a full life expectancy - which in these days of unexpected shocks can only be a good thing, especially if you are with a partner, or are married or have children.

Once you do get used to CPAP, you will probably feel quite resentful after nights without it because you will not sleep as well!! As you get used to it, the GULP! feeling of 'forever' will disappear because it will become normal. OK there is a need to accept this, which may be the hardest thing to do - remember that change has to be worked at and accepted on many levels, not just physical but psychological. Let me assure you that with a CPAP you will be no less of a man - in every way - but possibly an even more empowered man, and with a happier ladylove to boot.

All good wishes, and please keep in touch.

Alsa xxxxxxxxxx

That is far too sweeping a statement to go unchallenged.

OSA arises from a wide range of root causes, not just one common cause. In some cases there are multiple root causes.

For SOME presentations of OSA, addressing the major root cause will cure the OSA. This is why for SOME people, weight loss, or surgery, or singing (etc, etc) does indeed work for them.

The gotcha here is that it is very difficult for clinicians to reliably predict before the event whether any particular course of action will satisfactorily address a primary root cause.

On the other hand xPAP treatment has an excellent success rate as an an effective treatment of simple OSA symptoms for those that are able to adjust to the regimen that it requires.


xPAP does not treat root causes and does not treat all sleep apnea presentations, and that does need to be kept in mind at all times!

Cheers,

Bill

Bill What are you challenging?

The fact osa has no cure to date?
The lack of any good clinical research into causes of osa?
The fact it is still seen as a syndrome, not an exact named disease?
Or the amount of blame culture that is circulating around the health care world, probably as a way to divert any good intentions to find direct answers to the many ailments man can endure?

I hate the issue same as anyone else regarding no cures, or lack of exact answers, but I also believe our need for an answer is just a small part of the blame culture, and if given that magic answer will we be happy with that answer? after all we still have to come to terms and live withy it.

Sadly for many in UK, we have strict driving laws that prevent people from getting on in life due to osa, and although unlike most of the world we do have a free to point of contact a supportive system that will try and bend itself towards compliance of cpap, How we can play that system and get as much support as we deserve is upto each individual.

But if we are to be compliant with cpap, the only known that shows a positive approach with an abundance of research known to help us many sufferers. I still believe we will just have to buckle down and accept the condition. no more no worse than the millions of diabetics, copd, m.e. (yuppy flu) to the unknown, and the millions of mental health sufferers of a condition that encompases a blame culture, such as lazy, obese, eating wrong foods. poorly educated, etc. yet all probably due to the lack of exact knowledge in the first place.

You rightly mentioned the issue of singers and having osa syndrom, unfortunatly there is still very little research that is fact, according to muy local consultant, it mostly develops from pavarote, and last 2 years it was being looked at in both Brazil and Devon in this country, unfortunatly very little of that research had any other than a patient history supporting the theory, it did not include any blind studies to it, and from initial findings, it proved valueless, as most of the theory comes from exercises of the voice, yet these physical exercises, involves more of the chest and breathing abilities, not the throat as what would be expected.

We may want to blame political ideations, or social values of any health condition, but we still need to remind ourselves that research cannot go ahead without us bods in the first place. Never mind the lack of any public funds from any government into it, or limited motivation from sources other than the drug health manufacturing industry. With the world being more dependant on the health insurance companies obesity will remain a high profile issue if only to limit expenditures, due to medical underwriting.