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