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 Post subject: Fears about upcoming sleep test
PostPosted: Mon Jun 13, 2011 8:40 pm 
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Captain Snorer

Joined: Mon Jun 13, 2011 7:14 pm
Posts: 141
Hello all,

Just to bring everyone up to speed with how my life has been the last 13 years or so... I use to have lovely deep sleep and now I never ever feel refreshed when I wake up no matter how much sleep I get which is anything between 9 hours and 13 hours a night (13 Hours usually at weekend or when I'm on a late at work) Obviously 13 hours is not great as I miss most of the day + I don't feel much better for it.

I've just been successful in getting a new job which is a job I've wanted to do for a while and I'm having to take time off work as I just cannot concentrate and I'm always tired (This has always been the case in my previous job but I knew my job inside out so tiredness or no tiredness I could do the job, plus it was part time and shift work so I only had to get up early twice before I could get my 13 hours sleep :) Much different being on days though.

I feel like I'm going off on a tangent now so I'll get to the point.... My girlfriend a few months back alerted me to the fact I stop breathing in my sleep, well more to the point I hold my breath and have done for the last 5 years (she thought it was normal as her Mum does the same thing) The last count was holding my breath for 6 seconds at a time and it does sound trivial compared to other people stopping for much longer... I don’t know how often in the night I do it (I'm kind of hoping it's a fair few times) and I wouldn't expect my girlfriend to sit and listen all night but it was enough to alert me that this may be the Bain off my life right now


Well... Tomorrow is the day of my at home sleep test and although I was very confident they would find something that can be treated (Sleep Apnoea) I get more and more nervous by the day when I read either peoples story that have symptoms that are far worse than mine and some even being told they are fine and have not got sleep apnoea.

I've had the pulsometer oxymeter and they said it came back normal :( Hence why I'm dreading the next one as this is my last chance before I have to live the rest of my life feeling like this ?

From the beginning it's been a constant battle even getting doctors to listen and referring me to a specialist and I was told by one doctor she did not know of any sleep clinics?? Which forced me to go private with the Harley medical group who were the complete opposite and told me my throat was blocked by my Uvula and surgery was needed (No tests to prove this was causing my problems) although it quickly became apparent they were telling me everything I wanted to hear just to make a £1000 off me! After numerous pushy sales/nurses trying to convince me to go ahead with it one of them was kind enough to write a letter for me to take to the doctors recommending they send me to a sleep specialist.

I returned to my doctors the following day and saw the same doctor as last time who shouted at me for booking an emergency appointment although stopping breathing in your sleep is serious to me it's not serious enough for my doctor. I managed to annoy her enough to get her to admit she did know what a sleep clinic was (Obviously does not want to part with government money)

I'm roughly two months on now and was not able to get a cancellation for the sleep study so tomorrow now it is.

These are the concerns I have right now....

What if they find nothing wrong with me? I really don’t want to live this way

How good is the sleep study? Will it raise other potential issues? Such as I don't feel I go into a deep sleep anymore.. I really use to love my sleep and the feeling of waking up in the morning and having a nice stretch, come to think of it I can’t think of I’ve never had a stretch in the morning since I’ve been this way

As above: Will the NHS do what they tried to do before and dumb down my health issues to save paying out for treatment if I'm diagnosed? I know I can request the results and can get them independently analysed so that may answer that question

My other worry was the Epworth test.... Although I'm shattered I could never just fall as sleep as much as I’d like to I just can't do it since I've felt like this... Hence when I did the Epworth much the same as everything in my life I tend to dumb things down and make out they are not that serious even though every other person would score it higher. Obviously this plays on my mind as the Harley Medical group said it was defiantly not SA as I would have scored it as 7’s and 8’s. Although having had time to think about this everybody is different and I feel my scores would be a whole lot higher if (at the time) I was working full time hours, working days and had a normal life such as a wife and kids using up more of my energy.

Think I’m looking reassurance really ?


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 Post subject: Re: Fears about upcoming sleep test
PostPosted: Mon Jun 13, 2011 11:03 pm 
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General Snorer

Joined: Sun Dec 11, 2005 10:26 pm
Posts: 1992
I'm posting from an hour ahead so it's bed time for me ... but I just wanted to wish you good luck and to try to put your mind at ease about your test. A few years ago I was losing almost 16 hours a day to excessive daytime sleepiness so I know how you might be feeling. It's great that you have your new job and I am sure you'll be good at it especially when you've got over the shock of being tested for OSA and what the results of the test might be.

As I said, I'll try to post more tomorrow, but just to let you know that I'll be thinking of you. A sleep study is not anything that you can really do anything about to change the results from what's the real situation in your case to something less important and more banal.

And you didn't cause yourself to get OSA; it happens to all types of people, both sexes, tubbies and bean poles and there was nothing you could have done to change things. So don't add blame to what is a very stressful time because YOU ARE NOT TO BLAME FOR ANYTHING TO DO WITH YOUR SLEEPING .. unless you are taking certain medications which you don't mention and which can have an effect on daytime sleepiness!

What you are rightly feeling is the fear of the unknown. And what's so bad about the unknown is that you can only start to cope with it when it becomes known and a reality.

If your test reveals that you have OSA, OF COURSE it is going to be a big shock and it will take you some time to adjust to the fact that you have an untreated medical condition. But it can be managed effectively for life and you WILL get your life back because you'll start treatment and this will put you back on the road to GOOD HEALTH - firstly by helping you to sleep better without waking up x times per hour as is probably happening at present, and also by helping you to have a much better quality of sleep. This will make your waking life much better, you will feel more energetic and you will be able to carry on a FULL LIFE just like now, with going to stay at friends' houses, go on holiday, take cruises, fly long haul and even go camping. Nothing will change for the worse, and your girlfriend will be able to sleep peacefully beside you, knowing that you won't be at an increased risk of a heart attack or stroke and that you won't be waking her up by making strange noises and snoring!!

Just go with the flow tomorrow. The sleep techs have seen it all before, including folk who need to get up in the middle of the test to have a pee, or who talk in their sleep! Try to have a normal day, don't drink alcohol to make you sleepy before you go for your test and if it helps, take your favourite teddybear or a photo of your girlfriend to make you feel a bit more at home. Of course it isn't the same sleeping in a sleep centre as at home but the staff will try to help you relax. You don't need to sleep for 12 hours ... the data they need can come from even a few hours of sleep.

I can't answer all your questions now, but I promise to come back to them once you've had your sleep study and told us how it went, even if you don't know the results yet. But rest assured that it's a GOOD thing that you are being pro-active in looking after your own health and only GOOD THINGS will come from it.

Once an unknown thing is 'shown the light' it loses its power to frighten you. By learning, reading and talking to others who have been where you are now, you can find the 'light' to remove the fear. Of course anything new has to be got used to, and I'd be doing you a disfavour if I said that it will all be plain sailing from now on. But YOU WILL SURVIVE and your life will be worth living and be of good quality both when asleep and when awake.

Hang on in there. There are a few hills to climb on your journey but you've sailed over the first one which is getting a sleep clinic appointment. The next will be the results and what they mean for you. And we are here to help you with this and all further steps along your sleep journey.

Kindest regards and sleep as well as you can. Alsa xx


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 Post subject: Re: Fears about upcoming sleep test
PostPosted: Tue Jun 14, 2011 7:17 am 
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General Snorer

Joined: Sun Dec 11, 2005 10:26 pm
Posts: 1992
'Morning has broken' as the song goes ... so let me see if I can sort out more of your post.

Quote:
From the beginning it's been a constant battle even getting doctors to listen and referring me to a specialist and I was told by one doctor she did not know of any sleep clinics?? Which forced me to go private with the Harley medical group who were the complete opposite and told me my throat was blocked by my Uvula and surgery was needed (No tests to prove this was causing my problems) although it quickly became apparent they were telling me everything I wanted to hear just to make a £1000 off me! After numerous pushy sales/nurses trying to convince me to go ahead with it one of them was kind enough to write a letter for me to take to the doctors recommending they send me to a sleep specialist.


I am glad that you didn't part company with your money straight away. This is the most serious problem that arises when one is forced to go 'private' .. and there is no conclusive proof that the Uvulaplasty operation cures snoring and OSA 'forever', as the tissue removed often grows back, requiring a repeat operation and more money to be spent. But it can be very frustrating when the NHS doesn't seem to want to investigate your problem and you have to look elsewhere.

Quote:
I returned to my doctors the following day and saw the same doctor as last time who shouted at me for booking an emergency appointment although stopping breathing in your sleep is serious to me it's not serious enough for my doctor. I managed to annoy her enough to get her to admit she did know what a sleep clinic was (Obviously does not want to part with government money)


This sounds like appalling doctor-patient behaviour. OK a doc is a human being and can have an 'off day'. I can understand why s/he thought you might be 'misusing' the emergency appointment, but from your point of view I agree that it is justifiable especially as s/he didn't take you seriously the first time you went to consult about your sleeping worries. Might you consider transferring to a more sympathetic doctor or another practice? (Note that I'm in France so that is possible, but perhaps in the UK it might not be considered politically correct. I'll let other members who live in the UK give you more advice about this!)


Quote:
These are the concerns I have right now....

What if they find nothing wrong with me? I really don’t want to live this way


All I can do is tell you that I had an overnight sleep study at home and even though it seemed very simple in terms of equipment, it gave clear cut results. As will yours. I think that you more worried as to what the results will be rather than that the machine finds nothing wrong with you. Just try to be patient. This time tomorrow you'll know where you stand and can start to adapt to whatever the machine shows.

Quote:
How good is the sleep study? Will it raise other potential issues? Such as I don't feel I go into a deep sleep anymore.. I really use to love my sleep and the feeling of waking up in the morning and having a nice stretch, come to think of it I can’t think of I’ve never had a stretch in the morning since I’ve been this way


The sleep study should be conclusive. It tells how many times you wake during the night - usually without knowing you did so - and about the quality of your sleep, your snoring and usually the amount of oxygen in your blood - which shows how much vital oxygen is in your system and travelling to your heart and brain.

If you DO have OSA, and you follow the treatment therapy described, you WILL sleep deeply and wake refreshed. The mostly likely reason why you don't feel as you used to is that you are actually waking up for a few seconds all night and never get into deep and refreshing sleep at all. I too remember the lovely sleep and waking of my childhood ... and it doesn't happen any more. But that I think is also due to the fact that as we get older and take on more responsibilities and stresses and are in complex and adult relationships (as distinct from mum and dad being the pillars of one's world) our sleep patterns change, not least because the brain has grown too and has to process far more 'events' in our working day than when we were children.


Quote:
Will the NHS do what they tried to do before and dumb down my health issues to save paying out for treatment if I'm diagnosed? I know I can request the results and can get them independently analysed so that may answer that question


You can certainly ask for a second opinion, but as you've already discovered 'independent' intervention can be heavy on your pocket!

Quote:
My other worry was the Epworth test.... Although I'm shattered I could never just fall as sleep as much as I’d like to I just can't do it since I've felt like this... Hence when I did the Epworth much the same as everything in my life I tend to dumb things down and make out they are not that serious even though every other person would score it higher. Obviously this plays on my mind as the Harley Medical group said it was defiantly not SA as I would have scored it as 7’s and 8’s. Although having had time to think about this everybody is different and I feel my scores would be a whole lot higher if (at the time) I was working full time hours, working days and had a normal life such as a wife and kids using up more of my energy.


I think a lot of us when faced with our Epworth questionnaire think along the lines of 'Oh it's not really as bad as that' and answer reluctantly! If you honestly think you've dumbed down your Epworth test rather than brazen it out, it's not too late to re-take the questionnaire, now you realise that if you have a medical condition it needs to be treated successfully. It wasn't cowardly to underscore your question replies, but it could lead to your treatment being inappropriate. I think your sleep test will give more accurate and factual data of what's actually happening to you, but it might be an idea to download the Epworth test from this site and redo it, this time as honestly as you can. You don't need to fear the final score because you ARE consulting a doctor, and it would be useful for the doc to have your 'real' scores .... and this may mean that s/he will take you a bit more seriously as well.

It takes great courage to face up to the possibility that all might not be as well in one's life as one would wish.

Once you do grasp the nettle and accept that there's a problem and that you want to change things, this is probably the worst thing over with. The rest is down hill from now on. A matter of defining what the actual problem is, and how best to manage it.

I also suspect that you've started reading around the subject of OSA and treatment options and that this has been pretty scary. Just let me say three things.

1. An awful lot of people have OSA; most of them haven't yet realised it. But they are likely to be found in your friends and work colleagues. It's not fatal once treated and life goes on as before if not better.

2. You may find that you need to accept a fairly drastic change in your lifestyle if you are prescribed a positive pressure machine. And that will be a shock initially. BUT IT CAN BE ADAPTED TO. And there are many more of us around using xPAP therapy than you might think. You just can't see into our bedrooms at night or when we sleep. But we exist. And we are normal human beings, we do EVERYTHING that you do. We sleep well and safely. Our partners learn to adapt to our new best friend at bedtime. There are highs and lows as with all things. We didn't cause our own OSA, and we have no blame or shame attached. We live life to the full and have no shorter life-expectancy because of our treatment.

3. And finally there are people on this site and on others who are more than happy to share their experiences, guide you should you wish, and listen to you. You are ALWAYS an important and valuable person, it's just that life sometimes throws up something new that you weren't expecting and have no experience of. That can mean that you feel almost slapped in the face because you haven't got any information or coping strategies in place. Don't worry. They'll come. And we are here for you.


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 Post subject: Re: Fears about upcoming sleep test
PostPosted: Tue Jun 14, 2011 5:05 pm 
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Captain Snorer

Joined: Mon Jun 13, 2011 7:14 pm
Posts: 141
Firstly thank you very much for the response

Alsacienne wrote:
'Morning has broken' as the song goes ... so let me see if I can sort out more of your post.

Quote:
From the beginning it's been a constant battle even getting doctors to listen and referring me to a specialist and I was told by one doctor she did not know of any sleep clinics?? Which forced me to go private with the Harley medical group who were the complete opposite and told me my throat was blocked by my Uvula and surgery was needed (No tests to prove this was causing my problems) although it quickly became apparent they were telling me everything I wanted to hear just to make a £1000 off me! After numerous pushy sales/nurses trying to convince me to go ahead with it one of them was kind enough to write a letter for me to take to the doctors recommending they send me to a sleep specialist.


I am glad that you didn't part company with your money straight away. This is the most serious problem that arises when one is forced to go 'private' .. and there is no conclusive proof that the Uvulaplasty operation cures snoring and OSA 'forever', as the tissue removed often grows back, requiring a repeat operation and more money to be spent. But it can be very frustrating when the NHS doesn't seem to want to investigate your problem and you have to look elsewhere.

Quote:
I returned to my doctors the following day and saw the same doctor as last time who shouted at me for booking an emergency appointment although stopping breathing in your sleep is serious to me it's not serious enough for my doctor. I managed to annoy her enough to get her to admit she did know what a sleep clinic was (Obviously does not want to part with government money)


This sounds like appalling doctor-patient behaviour. OK a doc is a human being and can have an 'off day'. I can understand why s/he thought you might be 'misusing' the emergency appointment, but from your point of view I agree that it is justifiable especially as s/he didn't take you seriously the first time you went to consult about your sleeping worries. Might you consider transferring to a more sympathetic doctor or another practice? (Note that I'm in France so that is possible, but perhaps in the UK it might not be considered politically correct. I'll let other members who live in the UK give you more advice about this!)
We have about have about 7 or 8 doctors so it’s usually pot luck... although I had mentioned my new job was in London (I Guess equivalent from Paris to the south of France) she told me to register with a doctor in London instead ? Not ideal as where I live now is my home and feel comfortable to see my doctors for the last 20 years.. I also travel home on weekends anyway



I can move to another proactice and

Quote:
These are the concerns I have right now....

What if they find nothing wrong with me? I really don’t want to live this way


All I can do is tell you that I had an overnight sleep study at home and even though it seemed very simple in terms of equipment, it gave clear cut results. As will yours. I think that you more worried as to what the results will be rather than that the machine finds nothing wrong with you. Just try to be patient. This time tomorrow you'll know where you stand and can start to adapt to whatever the machine shows.
I’m not worried at all about the equipment or the Xpap if I needed one... I’ve tried to sort this out on and off for the last 14 years now and have hit a brick wall every time I have attempted to get this sorted so I feel like this is my last hope.. it’s all or nothing for me right now

Quote:
How good is the sleep study? Will it raise other potential issues? Such as I don't feel I go into a deep sleep anymore.. I really use to love my sleep and the feeling of waking up in the morning and having a nice stretch, come to think of it I can’t think of I’ve never had a stretch in the morning since I’ve been this way


The sleep study should be conclusive. It tells how many times you wake during the night - usually without knowing you did so - and about the quality of your sleep, your snoring and usually the amount of oxygen in your blood - which shows how much vital oxygen is in your system and travelling to your heart and brain.

I did try the oximeter last time and feel if that didn’t find any abnormalities in my oxygen/breathing then what will. It is sometimes difficult for me to explain to a doctor how I’m feeling as I try to change the information I provide to them something they can relate to. Once I’m given an answer as well regardless of whether I think it’s a satisfactory answer I don’t follow up on this and just accept what they’ve said



If you DO have OSA, and you follow the treatment therapy described, you WILL sleep deeply and wake refreshed. The mostly likely reason why you don't feel as you used to is that you are actually waking up for a few seconds all night and never get into deep and refreshing sleep at all. I too remember the lovely sleep and waking of my childhood ... and it doesn't happen anymore. But that I think is also due to the fact that as we get older and take on more responsibilities and stresses and are in complex and adult relationships (as distinct from mum and dad being the pillars of one's world) our sleep patterns change, not least because the brain has grown too and has to process far more 'events' in our working day than when we were children.

This is the thing that worries me... despite being an adult I don’t really have any of the adult stresses’ apart from a job. I did have another thought last night when I went for a pee.. as I was walking I was thinking “I feel pretty awake” and then thinking that in the past I would stumble to the toilet in the past and finding the landing light to bright as I was half as sleep or just woke up from a deep sleep...I’ve not had this feeling either since it all began.


Quote:
Will the NHS do what they tried to do before and dumb down my health issues to save paying out for treatment if I'm diagnosed? I know I can request the results and can get them independently analysed so that may answer that question


You can certainly ask for a second opinion, but as you've already discovered 'independent' intervention can be heavy on your pocket!



Quote:
My other worry was the Epworth test.... Although I'm shattered I could never just fall as sleep as much as I’d like to I just can't do it since I've felt like this... Hence when I did the Epworth much the same as everything in my life I tend to dumb things down and make out they are not that serious even though every other person would score it higher. Obviously this plays on my mind as the Harley Medical group said it was defiantly not SA as I would have scored it as 7’s and 8’s. Although having had time to think about this everybody is different and I feel my scores would be a whole lot higher if (at the time) I was working full time hours, working days and had a normal life such as a wife and kids using up more of my energy.


I think a lot of us when faced with our Epworth questionnaire think along the lines of 'Oh it's not really as bad as that' and answer reluctantly! If you honestly think you've dumbed down your Epworth test rather than brazen it out, it's not too late to re-take the questionnaire, now you realise that if you have a medical condition it needs to be treated successfully. It wasn't cowardly to underscore your question replies, but it could lead to your treatment being inappropriate. I think your sleep test will give more accurate and factual data of what's actually happening to you, but it might be an idea to download the Epworth test from this site and redo it, this time as honestly as you can. You don't need to fear the final score because you ARE consulting a doctor, and it would be useful for the doc to have your 'real' scores .... and this may mean that s/he will take you a bit more seriously as well.

I think I tend to suffer in other ways other than sleep on this one... for example my eyes suffer a lot and are always sleepy or have that drowsy affect... And I think I’ve learnt over the years to fight any tiredness

It takes great courage to face up to the possibility that all might not be as well in one's life as one would wish.

I’ve l known for too long really but could never put my finger on it

Once you do grasp the nettle and accept that there's a problem and that you want to change things, this is probably the worst thing over with. The rest is down hill from now on. A matter of defining what the actual problem is, and how best to manage it.
I have done a lot of research on this to be honest to try and put my mind at rest and convince myself I do have a problem as others think it’s just being lazy

I also suspect that you've started reading around the subject of OSA and treatment options and that this has been pretty scary. Just let me say three things.

1. An awful lot of people have OSA; most of them haven't yet realised it. But they are likely to be found in your friends and work colleagues. It's not fatal once treated and life goes on as before if not better.

2. You may find that you need to accept a fairly drastic change in your lifestyle if you are prescribed a positive pressure machine. And that will be a shock initially. BUT IT CAN BE ADAPTED TO. And there are many more of us around using xPAP therapy than you might think. You just can't see into our bedrooms at night or when we sleep. But we exist. And we are normal human beings, we do EVERYTHING that you do. We sleep well and safely. Our partners learn to adapt to our new best friend at bedtime. There are highs and lows as with all things. We didn't cause our own OSA, and we have no blame or shame attached. We live life to the full and have no shorter life-expectancy because of our treatment.

To be honest I think I am ready to accept I have a problem... The thing I’m not prepared for accepting is that nothing is wrong with me.. that scares me the most

3. And finally there are people on this site and on others who are more than happy to share their experiences, guide you should you wish, and listen to you. You are ALWAYS an important and valuable person, it's just that life sometimes throws up something new that you weren't expecting and have no experience of. That can mean that you feel almost slapped in the face because you haven't got any information or coping strategies in place. Don't worry. They'll come. And we are here for you.


Thank god for forums like this


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 Post subject: Re: Fears about upcoming sleep test
PostPosted: Tue Jun 14, 2011 5:38 pm 
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Colonel Snorer

Joined: Thu Apr 15, 2010 10:48 pm
Posts: 395
Location: Glasgow
Chattabob.....the Epworth is only an indication anyway. I scored very high on (which would not be indicative of having the condition) it but had severe OSA (after my night's sleep test the doctor reassuringly said 'oh I'm going to write a paper on you!'.....sigh!). I didn't get daytime sleepiness or I didn't really recognise it as such, but I had unbearably fractured sleep at night. CPAP has totally changed that and the quality of my life.

The Overnight test is the way to go to get a real indication of what's going on for you. Good luck and let us know how you get on.


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 Post subject: Re: Fears about upcoming sleep test
PostPosted: Tue Jun 14, 2011 8:27 pm 
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Captain Snorer

Joined: Mon Jun 13, 2011 7:14 pm
Posts: 141
Suse wrote:
Chattabob.....the Epworth is only an indication anyway. I scored very high on (which would not be indicative of having the condition) it but had severe OSA (after my night's sleep test the doctor reassuringly said 'oh I'm going to write a paper on you!'.....sigh!). I didn't get daytime sleepiness or I didn't really recognise it as such, but I had unbearably fractured sleep at night. CPAP has totally changed that and the quality of my life.

The Overnight test is the way to go to get a real indication of what's going on for you. Good luck and let us know how you get on.


Thanks Suse, it's good to see and hear of other peoples symptoms...

I don't really get daytime sleepiness myself but maybe thats because I seem to find away to store up 13 hours sleep on my days off to combat the daytime tiredness...


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 Post subject: Bad news
PostPosted: Thu Jun 16, 2011 1:21 pm 
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Captain Snorer

Joined: Mon Jun 13, 2011 7:14 pm
Posts: 141
Bad news I'm afraid... the test came back fine and thats all I was told.

will have to wait for a specialist to look at the results but the automated computer output did not flag anything :(


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 Post subject: Re: Fears about upcoming sleep test
PostPosted: Thu Jun 16, 2011 2:15 pm 
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Joined: Sun Dec 11, 2005 10:26 pm
Posts: 1992
Well you grasped the nettle. And hopefully you feel reassured in some way that you didn't show signs of OSA. I hope that when you get to see the specialist you will get some answers or some information that will set you off on a path that will bring reassurance and if necessary some treatment. It was courageous of you to post. Don't lose contact, and I hope that you will sleep a bit better from now.


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 Post subject: Re: Fears about upcoming sleep test
PostPosted: Fri Jun 17, 2011 3:03 pm 
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Captain Snorer

Joined: Mon Jun 13, 2011 7:14 pm
Posts: 141
Alsacienne wrote:
Well you grasped the nettle. And hopefully you feel reassured in some way that you didn't show signs of OSA. I hope that when you get to see the specialist you will get some answers or some information that will set you off on a path that will bring reassurance and if necessary some treatment. It was courageous of you to post. Don't lose contact, and I hope that you will sleep a bit better from now.



Thanks guys...

I will try and post in the one thread now as all my questions have been answered here


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