British Snoring & Sleep Apnoea Association

After reading articles recently that sleep apnoea is not just weight related and that brain damage could be also a contributing cause. I would like to discuss Sleep Apnoea with someone and also get involved in some kind of research

I was first diagnosed with sleep apnoea in 1986 and have been using CPAP ever since. that means to date I have been on CPAP every time I sleep for the last 18 years and even though CPAP keeps the status quo and I am better with CPAP there is no cure

There is evidence to suggest that I had this condition from as early on as 6 years of age. I was treated for epilesy for many years and it was only in 1986 when having had an anestectic for a spine operation it was found that I had stopped breathing that CPAP treatment began.

Never since has an opinion been sought from myself apart from filling in a form at sleep clinics to score the likelihood of risks eg falling aleep whilst travelling whilst watching tv etc. And of course to service the machine and to see how its doing etc

I would love to be more involved in not just the treatment but research of this condition. I am sure that I could have a lot to offer in regards to research in some form. I would really like to talk to people and not feel so alone in coping with sleep apnoea and the effects it has on daily life... the headaches, tiredness, memory loss, and the hour or more it takes me to get myself together after awakening etc

Is there anyone out there...

Hello there

Yes there is somebody out here!

I was diagnosed with sleep apnoea in April this year and since June I have had a CPAP machine. (see my post on the CPAP machine section).

I have spent years feeling tired and doctors putting it down to having low iron. I had a hysterectomy in October 2002 to help cure the problem but I still felt very sleepy. At the end of November last year I was so run down, fed up, moody and forgetful that I was getting told off at work nearly every day! I couldn't stand it any longer and went to see my GP. I told him that my rhinitus was worse and that my snoring was so bad my husband slept in the spare room. However, it wasn't until I told him my husband was concerned because I occasionally stopped breathing that he decided to send me to the hospital.

My first visit was to the ENT consultant and rather than treat the rhinitus he sent me to another hospital to see the sleep specialists. He said he felt I was overweight (tell me something I didn't know!) and that my condition would improve if I lost the weight. However, when I finally got to go to the sleep unit and they tested me over a weekend (at home not in hospital) they said that weight was not always the factor as they have quite a few slim people as patients and although losing weight generally would be good for it would not necessarily cure my problem.

When they checked my readings from the monitor they were shocked to find that each hour - once every 30 seconds my airways closed to almost nothing and then once every 30 seconds my airways closed altogether. This resulted in me stopping breathing for up to 59secs at a time! My heart rate went up and my oxygen saturation went down from 95% to 70% and all night it went up and down like a yoyo.

Since having the machine the episodes of not breathing have lessened and one benefit that I am very happy about is that I now don't get up to the loo twice or more every night. The sleep guy said that it was because when my brain kicked in to start me breathing again all my internal organs raced to start working again and so my kidneys and bladder went into overdrive and I needed the loo. It's really strange what happens with this condition.

My boss has not been all that sympathetic and it has made for difficult times at work - forgetting to order lunch is such a crime!

Anyway, you are not alone and although you have been on the machine for 18 years it obviously helps and as you say it it better to have the machine than to go back to what you were like before.

I'm happy to chat more about this if you like.

regards


Christine

Hi christine

it was so nice to see your reply. I would love to discuss it further. It sounds like the people around you are just as sympathetic as I found. I think its a sad situation really.

It seems that the main topic is weight by anyone apart from the CPAP user themselves. Its a shame that there is not more education about the condition. Especially the depression associated with it. It is so hard to explain to anyone that given the opportunity you would rather live without the condition and the various ways it causes us to screwup.

The strange side is really that ok after 18 years, I have learned to adapt to the condition but coping with it is just as hard as its always been. And the feeling of being alone.!!!. This is the first time that I have had any communication with anyone about it, so I look forward to establishing a deeper more meaningful discussion.

Les

I was diagnosed with Obstructive Sleep Apnoea in June 2004. I am now awaiting a further hospital appointment to be fitted with CPAP. I can't believe how similar your experiences are.

I am currently 31 years old and have been a loud and persistent snorer since childhood, my late father was the same. Since childhood I have suffered bouts of tiredness and falling asleep during the day or evenings. Over the last couple of years it has been getting worse. I share a house with my brother and we sleep at opposite ends of the building. He told me that he can hear me snore and that he can hear me stop breathing when I snore. I dismissed this. Eventually I went to see the doctor about a bleeding mole and just as I was about to leave she asked me if there was anything else whilst I was there. I knew my brother had not been to the doctor for a long time and has therefore not tipped her off so I decided that fate must be trying to tell me something. I told the doctor what was going on and that is how I ended up where I am today. It has also been a big relief to realise that some of the problems I have experienced have an explanation.

My performance at work has suffered due to the tiredness caused by my OSA but thankfully, my manager is sympathetic. Indeed, one day this week he offered to let me take the afternoon off sick because I was so tired. The tiredness has affected my memory and has left me with a limited social life. Also I have found my life to consist of waking up in the morning feeling like I haven't slept, going to work, falling a sleep on the bus on the way home, falling asleep in the chair in the evening and then going to bed. I too believe that this 'lifestyle' caused by the OSA has led to mild depression.

I am too frightened to go on holiday because my snoring is so loud. I fear that I might disturb people staying in adjacent rooms. I recently had to attend a conference which meant staying in a hotel for 4 nights - I booked a room in the hotel which was a way from the others to avoid disturbing people. I'm probably just paranoid about my snoring but I know I am very loud.

I too have found most people to be ignorant of the condition. However, being involved in a trade union that has people who work in care homes as members has helped as they are aware of OSA and CPAP as they have encountered residents with the condition. Also, I am lucky enough to have a very understanding manager who has taken me seriously.

Anyway, I have waffled enough for now. Thanks for listening.

I was diagnosed with OSA in March 2003,after 12 years of poor quality of life.
In the last few years prior to diagnosis I suffered with morning headaches,constant heartburn and extreme tiredness.
The condition had a negative effect on relationships due to the extreme loudness of the snoring,even had to sleep in halls and toilets when on holiday to spare loved ones the racket I made!
Anyway ,on cpap now and the machine has changed my life.I am a new person,totally refreshed,back sleeping with the wife,even go camping safe in the knowledge I will not disturb half the camp!
I'm fit enough to work out in the gym 3 days a week,and I feel as fit as I was 10 years ago.
OSA is an awful condition.But in my case the cpap treatment is a lifesaver.

Hi all,

It sounds awful to say it is so nice that there are more people out there with the condition. I wouldnt wish it on anyone, but the feeling of isolation I have been feeling has been so terrible. One of the main factors I think I havent recovered as much as I could have is because of the severe spinal damage I suffered in the RTA. This has caused me to have a limited mobility and so exercise has always been a problem.

It was heartwarming to read about a boss who is sympathetic. I feel that because of the discriptions given out especially in the media that the condition is caused by obesity that it is often seen as a self inflicted condition. I look forward to continuing this discussion

Les

Hi everyone.

Isn't it amazing, we are not alone. My family are very supportive but I have had problems at work. My memory problems and tiredness caused me some awful problems and almost cost me my job as I was forgetting the most silly things and getting told off constantly for not remembering.

Things have been better since I got my machine but I am still getting used to it (only had it since end of June). I am finding it difficult to stop leaks which make my eyes red and dry and I find that I get marks on my face from the straps and clips as I tighten it in the night to stop the leaks.

I am going on holiday to Spain in September and will have to take the machine with me so I don't keep the people in the hotel awake and so that I can enjoy myself withouit worrying about being tired.

I have got one of the full nose masks which the hospital say are best, has anyone tried the ones that just stick up your nose? I think they would be a lot less claustrophobic.

Hope everyone is OK.

Best wishes

Chris

I've just been diagnosed with OSA. My private health insurer has paid for the diagnosis, but will not pay for any treatment! Have those of you with CPAP machines got them via the NHS or had to pay for them yourselves - when I originally got the referral from the GP she said the local trust don't fund sleep problem treatment so I am not sure what to do next. Has anyone else had the same problem?

Also, has anyone else had OSA and depression together? I know depression can be a side effect and was wondering whether OSA treatment (if I ever manage to get any) is likely to help. Nothing else has helped the depression yet and i'm getting kind of desperate!

Many thanks
Luke.

Hi all,

A two sentence letter from the local hospital confirms I have now been diagnosed with Obstructive Sleep Apnoea, so I'm wondering what will happen next... I don't relish the idea of wearing a mask to bed every night, but it could have been worse!

I fall into the 'category' of barely awake zombie by day, so anything which helps keep me awake will be an absolute blessing. The bosses at work have been tolerant, in that I'm not unemployed yet - Things have gotten to the point where I'm stretching things a bit however. The possibility of both CPAP and surgery have been discussed, have you found these to be very effective? Also, how long after starting did it take for you to notice an improvement?

Many thanks.

Neil

Hi Neil

I was diagnosed with OSA in June and took possession of a CPAP machine and within a couple of days my life had changed. I am no longer walking around in a daze and I can now even remember my name.lol!

It is very uncomfortable at night wearing the mask and it does slip in the night and I end up with air puffing in my eyes, the straps need to be fairly tight to keep the mask on your face but sometimes I end up tightening them in the night without realising and get indents on my face. However, having said all that, it has been a lifesaver for me. My work was suffering and I felt permanently sleepy all day and even if I could stay awake I quite often started to drift off to sleep with my eyes open and as soon as that happened I start to snore! Not a pretty sound! hehehe!

I have apparently had this problem for years without realising it and it wasn't until I went to the GP regarding rhinitus that he referred me on to the ENT consultant who referred me to the Sleep Clinic. I am very lucky that my local authority has an excellent sleep clinic and I am so grateful to them for to all intents and purposes saving my llife. I was in a downward spiral of depression and my work and marriage were suffering. My husband had taken to sleeping in the spare room.

The clinic have told me that I may always need to be on the machine and that although I am overweight and losing it may help, this is not always the case - in fact they have some very slim people with the problem. My case is very severe - 30 times every hour I struggled for breath and another 30 times an hour I stopped breathing altogether for up to 1min! I hadn't realised just how bad things were until I was monitored.

I am going on holiday next month and the machine is coming with me so that I don't inflict my snoring on other people in the hotel and I at least get some good nights sleep while I am away.

I don't know where I would be now without my machine so if you are given one (and they are very expensive) I would grab it with both hands and you will see that almost overnight things will get better.

Sorry to have rambled and I have probably repeated stuff I have put in other posts on this forum but I hope my experience helps but if you need any other info about it let me know.

Best wishes

Christine

Having just been diagnosed with OSA I'm sure you will understand my relief at finding this site. Reading your posts has put my mind so much at ease that I feel I can cope now. Hindsight is such a wonderful thing, but at least it gives you understanding of why these symtoms existed. You try to reason out the effects to other things happening in your life/health (in my case), and feel that you are just going to have to cope and carry on, coming up with different strategies to try and alleviate these 'problems' But now 'I KNOW WHY'.

I should hopefully be starting CPAP within the month and, having read peoples comments, I cannot wait. I will be so keen to find out just what benefits I will find.

I, like others here, would be happy to be involved in any research on this condition as it is something that we have for life, with no cure, just having to sleep with a machine every night!! (mind you - looking at my husband it will be difficult to decide which is worse - lol )
I have read that people who suffer with Atrial Fibrillation -AF- (as I do) are prone to suffer with SA. Has anyone else read this?

Now I've found you, you'll not get rid of me!! Support from fellow suffers can be a huge help and being newly diagnosed I will welcome and appreciate your support.

Post again soon.

Hi Jakanne

I'm so glad that you will soon be getting a CPAP machine it will definitely enhance your life. I really hadn't realised just how bad my life was until I got my machine. Before I would come in from work at 5.15pm and be asleep by 6.30pm - unless I literally forced myself to stay awake. I'm still overweight and need to exercise and diet a bit but at least now I don't feel sub-human and can function again.

I do hope that getting the machine gives you a better life - like you say though there is no cure only treatment and sleeping with the mask on is not very comfortable but it is definitely better than sleeping with out it. I feel like Darth Vader when I put it on! Heheheh!

Hope everything works out for you.

Best wishes

Chris
Ceejayblue

Thanks Chris -ceejayblue,
I hope I'm not waiting too much longer. This past week I have been on holiday, nothing planned we were just going to take off as and when we felt like it... no such luck. I've been really tired and lifeless. At least I know that things can't get any worse (apart from having to go back to work!).

Cheers
Jules (Jakanne)

Hi,
I am thinking of applying for DLA,even though I use cpap and life is not so bad I lost my last job due to s/a and I am wondering whether its worth while making a claim.
Does anybody know whether I will be wasting my time or not?
Cheers.

Hi there

I don't know if you would be eligible for disabled living allowance or not, I know a lot of people who have it who don't seem to be as disabled as some people so it depends I suppose on how your local authority assess cases.

I would assume that if life isn't so bad now that you would probably be refused DLA. My life has definitely improved, despite the odd bad day and waking up in the middle of the night with the mask stuck to my forehead!

I'd recommend that you apply, they can only say no and at least then you know you have tried something. Are you looking for another job at the moment? Perhaps you need to look for something part time which would leave you free time to catch up on your sleep.

Hope you get something sorted out.

Best wishes

Chris
Ceejayblue