British Snoring & Sleep Apnoea Association

Hi all,
Its 2:00am and round my mates house after a bit of a knees up (they have all passed out from beer/wine and playing cluedo, I am only 32!) so I have the time to discuss what happened on Wednesday.
First off I have been confirmed with OSA. My reading was 35 times per hour. The study wasnÂ’t the best experience I have had as I did feel that the kit affected my sleep (due to not being used to it). I didnÂ’t get more that 3-4 hours sleep so had to phone in sick at work the next day as I was unable to think straight.

The nurse rang me at 5:00pm on Friday afternoon confirming the results; this has immediately lifted the weight from my shoulders as now I know what has happening to me over the past 10 years.

To explain further for the people that have this yet to come: -
I had an appointment with the sleep technician, which provided me with a machine (to take home) specifically designed to study your sleep patterns. This machine monitors your snoring, oxygen levels and breathing. This is recorded by one machine which is connected to your nose (snoring and breathing) and finger (oxygen levels). The results are feed back to one machine which is downloaded to a computer to analyze the results.

The nose part was the most awkward as it involved a tube being put up my nostrils, although it wasnÂ’t painful it was a bit unpleasant as it felt like I needed to blow my nose all the time. Eventually due to tiredness I went to sleep.
The next day I returned the machine which then allowed them to download the results.

I am now seeing the nurse again on Monday to get a CPAP machine which hopefully will turn my life around. I will tell you what the machine looks like (maybe pictures if the forum permits) and let you know what the first night is like on the Tuesday.

Again, I would like to thank everyoneÂ’s interest they have put on this topic so far and hope it helps other people for the futureÂ…
Regards,
Grumpy
P.S. If anyone wants to talk to me please private message and I will be happy to answer any questions you may have(not saying I am an expert, but as I have gone through it, it may help you)

I was referred to a specialist after having to pursuade my GP I had a problem. I had previously been referred because of my constant visits to the toilet during the night.

Eventually after having to make an appointment at the wrong hospital, ( I was told I had to go to ....... because of the contact/appointment system).

I turned up and after being kept waiting for well over an hour, saw the "man".

I filled in the sleep questionaire, and he looked at it and muttered, what do you want?

His words were "I have no funding to help you, with your sleeping problem
loose some weight."

He said I had the symptoms of Sleep Apnoea, but he had no funding to help me, "loose some weight".

That was all that was said, end of appointment. A total waste of time money etc....

I saw my GP, who couldn't make any other suggestions. I asked about private treatment and he thought it would be well over £2K.

I'm loosing weight but no changes have occured, so far.

Any advise please!!!

Hi Raffles,
I am absoultley stunned by thier ignorance, but the NHS doesnt suprise me. If you are not the "standard" human you are classed as a freak and therefore you must loose weight, stop drinking/smoking/eating. Hell we are doing one thing for them, we are stopping breathing

To make you feel better, being overweight may not be the only reason for OSA. I have lost 2 and a bit stone now and my neck is getting thiner, you know what,... I still got OSA, it can be down to how your neck and airways are setup in your body, so loose the weight as you will feel better for it, but dont get too obsessive about it, cause at the end of the day if a CPAP machine is what you need, this in itself can help you loose weight as you will have more energy and a spring in your step(apperently, will let you know Tuesday )

With regard the costings, each place is different, I am not completly out of the woods about the money aspect, but I can pretty much say it aint gonna cost over £2k.

On one of the previous updates (page 1), there was a break down of the costing which at the moment they have pretty much stuck to.
I wont be shy when I have found out how much everything has cost me, I will post it on the topic.

The consultation and test should set you back under or around £400. I like to think of this cost as an investment rather than paying someone for a second opinon, its well worth it as you find out once and for all if it is OSA.

This is a life threatening illness that needs investigating, you could be looking at a malpractice lawsuit as this kind of ignorance from the GP and specialist beggers belief.

One of the previous posters(wilkxx) told me that the Respironics were very good although based in Bognor the study was done from home and cost less than my appointments(found out about this info a little too late for me).

Keep your chin up and beg, borrow, steal to get a test as this is a serious condition with a simple remedy.
Regards Grumpy.

P.S. As I am still going thru the diagnosis cycle can anyone provide any further thoughts for raffles?

Just to say to Raffles that I am sorry to hear of the insensitivity of his doctor. Losing weight can be helpful (but I can't honestly admit that I've managed this) but you can still suffer from OSA. I think that the local Health Authority - or some other paperpusher - might like to hear the advice given to Raffles as it is simply an example of passing the buck.

Do UK MPs help in these positions by 'enforcing' the local NHS trust/servants to do something? Please keep persevering Raffles - can you not appeal against his decision, or ask your Doc for a referral to someone whose authority/practice does have some money available?

Grumpy, you have great courage and determination - thank you for sharing your experiences with us - it is ALWAYS helpful to hear about what happened to someone in the course of diagnosis and treatment, and can certainly reassure folk who are still in the early stages and who fear that they are the only one to experience OSA ... Please keep in touch.

I am so surprised at the way Raffles has been treated! I found nothing but help and support from my GP and my sleep clinic team. The consultant (who I've only met once!) did suggest that he could put me in for gastric by pass surgery as he didn't think I would be losing the weight that I should (unfortunately he's been proved right - I haven't lost it!) but even so he was surprised when I said I wasn't prepared to have that done to me. If I can't learn to eat properly and not be a pig then having my stomach stapled or banded would make no difference! Having said that the technician at the clinic said they have patients who are thin and have OSA and patients who are over weight and lost weight and still have it! So, whatever we do we are on a hiding to nothing.

This condition is debilitating and potentially life threatening (especially if you are a driver and you crash your car through lack of proper sleep!) if not treated and the fact that some areas seem to have no funding for this. I can't believe that it is treated so lightly. We definitely need to get something done about it. There needs to be a national campaign to bring it to people's attention more. My workmates and managers had no idea what it was or what it can do to someone until I was diagnosed.

I think we should all write to our MPs and try and get something done about it!

Well the day of CPAP arrived! I was giddy like a five year old at christmas, I was in such a good mood thinking this machine will fix all my problems. So I was given the instructions how to use it by the nurse. The model is a "Resmed Spirit 8" with ultra nasal mask, we checked for air leaks thru the diagnistics screen and was given a rating of "excelent" no air escapes. Took it home and thats when the problems started

I will stress from the beggining of this moan, these are probably all newbie things I wasnt prepared for and therefore think its again something for other newbies to be aware of...

Firstly, I was told not to use the machine just yet as I have a cough from the aftermath of a cold, but I was too eager so tried it last night.

The mask, my god how wierd with the air pressure, I know its something to get used to, but blimey not the most comfortable of feelings especially as the mask is quite tight to the face so could feel my blood pumping around my nose , is that normal or am I doing something wrong?

There were no air leaks at the test in the hospital, first time I use it and there is air leaks happening, specifically around the area where teh tube meets the nossle on the mask. It uses a "click" system to quickly remove the tube this click is leaking air at a hell of a rate, which in turn made the CPAP machine go crazy, odd thing is the thing still said I had an excellent mask fit, again is this normal?

Trying to sleep on my side (my normal postition) was pretty difficult, so decided to lie on my back and tried to sleep. After 3 hours of my mouth popping open, needing to swallow as my throat was dry, feeling the blood pump through my nose and stiffling coughing I gave up, unplugged the machine and nodded off straight away at 2:30am without the machine!

Could you get more bizarre? I am taking this with humor as the whole apperatus looks ridiculous (not saying the treatment or machine is silly, just looking in the mirror and lying in bed I could help but think I was an extra in Star Wars).

If anyone has any ideas this would be great, I am going to tryagain tonight so hopefully have better sucsess. Has anyone else had simlair experiences?

Couldn't agree more Willxx - sorry, but it's true. You have only to watch tv and see the ads and headlines.. fat people are getting a real slating nowadays. It used to be smokers and drinkers but both of those are clearly more socially acceptable, being fat isn't! Why don't they just help instead of judging all the flamin' time! bah humbug and all that!!

As for your experiences with the Cpap machine Grumpy Sleeper - I am rooting for you! Hope to hear some positive stuff soon, for your sake. Every best wish, and please keep posting!

Hi there Grumpy Sleeper

Your problems are common unfortunately! The air escaping from the connection to the mask sound like the ones that I get and it was explained to me that this is fine it is the excess pressure escaping, I think it was something to do with the fact that the pressurised air is going in and you then breathe out and the excess escapes (perhaps someone more technical could explain this?).

The mask fitting tightly is something I have a problem with too, if its not tight enough I get leaks, if its too tight I get marks on my face. However, I now can't even lie down for long periods with out putting the mask on as my airways collapse even when just resting! I also find I can't ramp up the pressure slowly as they say we should so that I start low and build up as I go to sleep. I feel very claustrophobic unless I get it up to full speed first.


Stick at it as I'm sure you will see a difference. If you haven't got severe OSA as some of us on here have then it may take a little longer to notice but as someone who really suffered with the effects of OSA I can honestly say it was a life saver. Everyone has teething problems with their machines but I'd say keep at it.

Best wishes


CHRIS

Hi Ceejayblue,
Thanks for you comments, I just needed a bit of confirmation just so I am not doing anything wrong. Going to try again tonight, my coughs pretty much gone, so hopefully be full of beans in the morning.

Cheers,
Grumpy

Hi
I have just re-found this forum.
Anyways, I was given an initial diagnosis of SA way back in April [ish]
and referred to Fazakerly sleep clinic. I was told the wait would be about 8 -9 weeks. I'd heard nothing after 12 weeks so phoned up the sleep clinic.
Very long story but the upshot being that the wait between now (October 06) and finally being sorted is about 2 years!!

I went back to my GP just over a week ago and said I wouldnt survive 2 years so he has done a direct referral (whatever that is) still havent heard anything.
I am considering going private - out of sheer desperation. Though I wouldnt know where to start!

I just wanna decent nights sleep

Hi no66y,

Just a quick mail as I am at work. I feel your pain regarding waiting lists (as a lot of us on this forum do!).
I initiated this topic for the same reason you are asking. Going private, what are the pros and cons.

I opted to go private cause I did not want to wait forever to get the machine and a better way of life.

I went with the Nuffield group (http://www.nuffieldhospitals.org.uk/). The entire treatment private (including machine) is around £1000. To get in you can be refered by your GP. I rang Nuffield and then called my GP to confirm that they believe I had Sleep Apnoea. Within 30 mins I had my consultation booked for the following week.
One word of warning: Someone told me they booked an appointment to see a specialist and was confirmed with Sleep Apnoea but they did not do the sleep study, so call them up and find out if they do the sleep study before commiting your cash.

Thats not the only way to do it, if you read on the first page of this topic, "Willxx" told me that he went through a company called "Respironics", as I did not use them (already booked in with Nuffield) I cannot comment on the procedure to get booked in. I can tell you that the machine and diagnosis does appear to be cheaper than what I paid.

I know from private messages to me, there is someone else currently going through the process of getting it booked with "Respironics", so if your listening perhaps you could either PM no66y or add an update to provide details?

So what are the Pros?
Quick turnaround
Machine within weeks not months
A better quality of health service

What are the Cons?
Money
Money
and......
Money

To be completly blunt. If you can afford it, do it. If you cannot afford it, do it. As its your life we are talking about

I hope you get sorted soon.

Grumpy

I forgot to include some info (I'm half asleep, sorry)

Anyways, I was told that a direct referral from the GP is near enough as quick as going private. With the direct refferal I should hear something within 2 weeks of the refferal being made (which was one week ago)

So, if anyone is considering going private, it may well be worth speaking to your GP about a direct refferal first and see what happens.

thanks, most people dont seem to understand (wont say any more on a public forum!)
I'm still pinning my hopes on this direct referral and keeping my fingers crossed X
If nothing happens though I'll have to look at an alternative i.e. private.

Hi, no66y,

My mother was having real trouble this week and so we took her to A&E, where they are obliged to treat you. I took advice from a staff nurse/friend and she said to say she was too scared to go to sleep as she was terrified she wouldn't wake up again. She has a slightly different form of OSA called OHS. The first hospital did not perform the relevant tests, but the second hospital (we chose because it has a sleep clinic) has kept her in and it looks like they may well not let her home until she has been fitted with the appropriate machine.

I don't know if this is of any help. But if you get desperate, you could try it!

Also, if your Saturated Oxygen levels drop below 90% (as they are obviously going to!) you are considered to have hypoxia. You can find articles which state that this can be a serious condition.

If you trawl through the web you will find loads of articles on OSA. (I'm not a medic and this may not be the best advice, but it has worked for us). We printed off relevant articles, especially ones that say it is serious, life-threatening and can cause death etc. When the doctor tried to say it wasn't a serious condition and that my mother would be fine, we showed him these and said could he guarantee her health until her appointment? If you are not safe, they will find it hard to discharge you. Especially at an A&E with a sleep clinic attached to that hospital.

We found that even consultants did not always know enough to make informed judgements about the condition.

Well, I have had the machine now for 2 weeks. So how am I doing?

Oddly enough I dont feel all that different, but it is the little things. Like I had to by some carpet on Saturday and had to work out the square footage of the amount of carpet I needed. I worked it out in my head very quickly! If I had done the same thing a few weeks ago I would never have worked it out in my head!

So I started looking at other "little" things that could be going on. First off my complextion is better, I am starting to loose the dark lines from under my eyes. I dont feel like I have got more energy but that may take some more time.

I am sleeping pretty much through the night with the mask on, the only problem is initially getting to sleep as I find it hard with the air blowing. I have opted to set the machine to full power straight away as I found my self waiting for the ramp to start!

So, the final challenge is getting the specalist to sign off that I am a wide awake human being. Once that done I can send off to the DVLA and look at getting a car again.

I notice now this topic is starting to go off topic, so this will be my last post on this topic (unless other questions come up), as I would like this to remain on the topic of "Going Private For A Sleep Study".

Thank you all for your contributions. It is a good feeling when you know there are others in the same boat.

I will be looking in on the forum regularry. So see you out there!