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  • Newly Diagnosed

    Hi,

    My name is Sean,

    I have been newly diagnosed with sleep apnoea. I was referred to the sleep clinic at the Royal Infirmary Edinburgh by an ENT consultant. At the clinic I was given a home sleep test. I did sleep but not for much of the night. I received a letter confirming that I have sleep apnoea and an appointment for an overnight stay on December 16th to enable the hospital to commence me on CPAP. This has raised some questions that I hope someone can answer.


    Will I start on CPAP straight after the trial?
    What questions should I ask?
    How noisy are the machines? My wife is threatening to change bedrooms.
    I have read about humidifiers do you get these on the NHS?
    Is CPAP as horrible as it looks?


    Thanks in advance

    Sean

  • #2
    I can't only tell you what happened when I attended Edinburgh, but that is a long time ago!
    I was sent from Aberdeen Hospital to Edinburgh where I spent one night (think it used to be two, but home study would do away for the need for two nights) for a sleep study. The next morning I was told the results and was told to come back in the afternoon. When I returned there was a machine set up and waiting for me. I then had to go see the nurse to be fitted with a mask and get instructions on how to use the machine.
    Some hospitals you have to wait or they get funding approved. Don't know how Edinburgh is fixed these days but Sparticus I think went there so should give you a good idea. Machines are quite quiet these days compared to what they were. In fact I wouldn't worry about the wife moving into another bedroom. My wife can't sleep if I am not there, she says the room is to quiet! She will get used to it very quickly. The machine I have now is half as noisy as my first one and the newer ones are whisper quiet.
    When you go to be fitted for a mask take your time as the masks are where most people have problems. If you are a mouth breather your choice is more limited, but if you breath through your nose there is a choice of nasal masks and even nasal pillows that are easier for a lot of users but take a while for your nose to accept them as the pillows go slightly into your nostrels. There are a few versions and sizes so take your time and even lie down with it on to make sure it is comfortable. Even try it with the machine on.
    Humidifers: they used to not give you one as standard, I don't know what their policy is now as it used to eat into their budget. They would give you one if dryness is a problem, I had to get one as after two hours I couldn't breath for dryness. The nurses are there to ask questions of, so if you have any concerns feel free to ask them. They will answer as best they can.
    Best things is to write down all the questions you have because as suter as water is wet the question you forget to ask will be the question you really wanted to ask.
    Was there anything else I forgot to answer?


    Anyway, any questions just ask.
    Come back to let us know how you get on.

    There is even a mask that combines nasal pillows with a mask that covers your mouth, so ask to see a range of masks and take your time choosing one.
    You may be offered a CPAP or an APAP or just given what they have. If you get a choice ask how both work. Some have a sensor that reduces the pressure when you breath out, if you are offered one of these ask how to adjust the relief pressure as no two people like it set the same.
    Good luck, there is nothing tof worry about as far as the sleep test goes, just wires on your head with sticky pads and on your chest and a sensor round your chest to detect when you stop breathing and a clip on your finger. Just try to sleep as best as you can.
    S2S - Sleep2Snore

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    • #3
      CPAP takes a bit of geting used to, but a bit of persistence and you will get there.
      You will get a humidifer on NHS if you need one.
      They may try you without one first.
      You will have to let the DVLA know as well as your car insurers, also your work if it involves driving.
      Write down any questions you have no matter how silly they may appear as there is no such thing as a silly question.
      S2S - Sleep2Snore

      Comment


      • #4
        Thanks for that. I'll let you know how I get on

        Comment


        • #5
          Do you have to stop driving as soon as you tell the DVLA?

          Comment


          • #6
            I would stop when they tell you to. However, read the small print on your insurance, they may not cover you.
            Hopefully by the time they suspend your licence you will be compliant with your treatment and get the ok to drive again. Meanwhile, be very aware of tirdness when driving, stop at the first sign, it's not worth it.
            You do not suffer from Sleep Apnoea until you have been to hospital for tests. At the moment it is only suspected you have it. Once you have the results from the hospital, they will advise you that you should not drive.
            S2S - Sleep2Snore

            Comment


            • #7
              One thing with driving; you should never drive when knowingly tired. It doesn't matter if you have had OSA confirmed or not.

              That's one thing we often hear, is people say "I'm always tired, but I don't want to do a test as if I have OSA they'll stop me driving". Knowingly driving tired is a finable offence in itself, and if an accident occurs your insurance is unlikely to pay out. It's basically a ticking time bomb, so it's always best to get tested and get treated, than ignore it and hope for the best!

              In our experience, very few lose their license for longer than a week. As S2S said, the periods overlap so that by the time they suspend your license (if they do at all), you can usually show that you are using CPAP and get it back shortly after.
              Tom @ Intus

              You can now follow Intus on Twitter!

              Comment


              • #8
                Thanks for the info I'll let you know how I get on on the 16th

                Comment


                • #9
                  Hi Doc, I to am at Little France (Edinburgh) You will be given your machine for a week or so and it will be an apap to work out what your pressure readings are. The apap is a machine that adjusts the pressure while you sleep and will record what pressure you need then your machine will be exchanged for a cpap machine which is about the same as the apap but it is manual and the settings will be static.

                  Welcome to the forum

                  Comment


                  • #10
                    Is that how Edinburgh is doing things now?
                    I suppose it is handier in some ways!
                    S2S - Sleep2Snore

                    Comment


                    • #11
                      Originally posted by Dr Potato View Post
                      Hi,

                      My name is Sean,
                      Will I start on CPAP straight after the trial?
                      What questions should I ask?
                      How noisy are the machines? My wife is threatening to change bedrooms.
                      I have read about humidifiers do you get these on the NHS?
                      Is CPAP as horrible as it looks?
                      Sean
                      Hi Sean, Just with ref to a couple of the above.....in my case the machine is a heck of a lot quieter than my snoring was (audible 2 doors down in a hotel corrider on one occasion), by contrast my machine (Gail-as in gale force) is a baby purr with the occasional whiffle and Cpap is great, been on it about 2 years now and the difference such a simple treatment makes is incredible. From permanently sleepy, frequently forgetfull, sometimes irritable (usually with myself) I have turned into a normal 50 year old, 2 stone overweight balding, mildly unfit version of a human being . And it makes a great Halloween costume. Gail and her little sister Baby Gail (travel cpap) are my best friends (with apologies to my wife) and I can't imagine life without them (despite the occasional hiccup when they blast wind in my eye-not saying my wife occasionally hasn't done th.....oh, too much detail)

                      Comment


                      • #12
                        I asked the Sleep Clinic Doctor about the noise from the CPAP machine. He said "You snore don't you?", "Well yes..", "Loudly?", "Well yes..", "Then I think your wife will find it a welcome relief!". And he was absolutely right. The CPAP is practically (amazingly) quiet, and nowadays so am I!

                        I discovered I needed a humidifier after the first night of CPAP, but they don't come as standard, you have to ask for one, and then they might take weeks to arrive (mine did).

                        Comment


                        • #13
                          Originally posted by Sleep2Snore View Post
                          Is that how Edinburgh is doing things now?
                          I suppose it is handier in some ways!
                          Im not sure if its changed its been a few years now since I started out but that's how they did me except I hated the cpap as it felt different to apap and as I was use to apap I asked to keep my first machine and they said it was ok. Ive been on apap since.

                          Comment


                          • #14
                            Just got back from my CPAP titration test. I was shocked to find out that my AHI was over 46. I was put on APAP overnight and sent home with a CPAP set at 12.4 this pressure reduced me down tp 7. I didnít have a fantastic night sleep but feel no worse than I usually do.

                            Comment


                            • #15
                              Originally posted by Dr Potato View Post
                              Just got back from my CPAP titration test. I was shocked to find out that my AHI was over 46. I was put on APAP overnight and sent home with a CPAP set at 12.4 this pressure reduced me down tp 7. I didnít have a fantastic night sleep but feel no worse than I usually do.
                              Stick with it, the first few nights are probably the worst.

                              Comment

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