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cpap since dec
I have been on CPAP since Dec and I have never had more than 4 hours a night sleep with it. In fact having 4 hours is a good night and I normally manage about 2 hours. I put my mask on to go to sleep - sometimes I get to sleep quickly and other times it takes a while, but when I get to sleep I only sleep for the longest 2 hours. I have no idea what wakes me, as when I do not use the CPAP I do sleep for longer, but yes, I still wake up. However, using the CPAP has made me worse sleeping, though I did get 2 good nights sleep when the sleep clinic gave me an APAP machine for 2 nights. I am going to see the specialist again soon but I am at the end of my tether with it all, and I know I need to use the CPAP as I am a nurse.
Kath has been supporting me and has been a great help, but I've still not managed. I've tried different masks, but I do not think it is the mask as I am ok with it. I have no leakage and I've even taken sleep relaxing tablets. In fact I have tried everything and I am not someone who gives in easy, but the last week I've stopped trying with the mask. I do not know why i am posting this really but you never know.... someone my have some other ideas to try .
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Replies to This Discussion
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Permalink Reply by Kath Hope on
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Totally agree Snoreyhead. Gina can't accept the bullet to her head option she was given yesterday. I'm sure she needs time to take all this in, but knowing Gina she'll be bouncing back soon and ready to pursue things further. Are you listening Gina? LOL.
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Permalink Reply by Christine Woods on
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Hi Gina
You are getting the best support and guidance from all on the forum.
In case you did not know there is also the http://www.patientopinion.org.uk website for offloading and telling your story. This website is reasonably new and I have told my story as a sleep apnoea partner on it. I got excellent written feedback regarding my issues thanks to Patient Opinion, this website is also read by many health professionals.
gina said:How an appontment to the sleep specialist can change your life !!!!!!!
I walked in to see the specialist and he asked me about falling asleep all the time. I told him I do not fall asleep all the time - only if I read and I can't get past a page, and if I am in a car as a passenger. He said my GP had wrote to him saying about just falling asleep all the time, so I told him I've never been to see the GP about falling asleep. I told him how I happened to have a sleep study due to having the brain scan !! (mistake 1). Mistake 2 was I said I'd not used the machine the last 4 weeks, and straight away he said (without catching his breath) "well I hope you have got the CPAP with you to give back!! I told him I had really tried and had used the CPAP up until then, as much as I could cope with, but because of waking up and not sleeping more than an hour, it was so hard (mistake 3 ) because if I had tried I'd have managed it!
He said that it sounds as if I suffer from insomnia as well as sleep apnoea and CPAP will not help with sleeping, so I discussed about the risks etc., and was there any think else that I can try like APAP etc., operation or any thing else. He looked in mouth and said I have large tonsils and large tongue, but cos I was so overweight it would not help. He said he will just discharge me and to bring machine back. I said I'd try again as on leave in a few weeks and he told me not to bother !!!I
I am so cross of with it all!!!! Nothing I can do now seeing as I have been discharged - no choice!!!!! Sod the NHS - what a rubbish service !!!!
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we want a name and shame discussion of consultants and hospitals
this doctor does not feel you pain
compassion means
your pain in me heart
i feel your pain
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Permalink Reply by gina on
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Dear all
i have had all my support from this forum kath been a rock to me !!!!and yes kath i am listening !!one day may be i will look in to getting a second opnion but at the moment i feel to let down and cant take any morex
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Permalink Reply by Roz B on
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Hi Gina, i really feel for you. In December I said i didnt want to use a CPAP and opted to try a mandibular device, but after doing some research and realising that being diagnosed with severe OSA with an AHI 9d 63, the MAD Device wasn't really going to help at all and the only thing that would help me is the CPAP.
So i made another appt to see the specialist and he was more than happy that I had changed my mind. i have been using CPAP since 20th January. Initially it was horrendous and I ended up having panic attacks during the night, although I still hate it I have got used to it and ca use it all night long.. i have to admit that i have worked my way through various masks…. I just worry about who is paying for them as in my consultants words…."" You may have to kiss many frogs before finding your Prince…and they will supply the Frogs!!!""
It was a lovely way of looking at it. i havent counted the number of masked I have tried, but I have just been give Philips most lates model, the true Blue Nasal mask. Kath sells these in her online shop, but I count myself extremely lucky with the service I have received. Although mentally i am finding it very hard i am managing things very well and have it all under control with my AHI down to a very respectable 3 or 4 on many days.
Finding a well fitting mask and getting used to the whole routine of the cleaning etc and seeing it by my bed each day has still very hard for me, but but I am very proud of myself for coming so far in such a short space of time…. I have other health issues which seemed to have prevented me benefitting from the wide awake feeling in the morning! But getting my apnoeas down to a 'normal' level has been the best incentive.
I sleep flat out on my back (Due to hip problems) so having to stop my masks leaking I was laying still all night so was waking even more stiff than normal. No one ever told me the mask was going to cause me more pain!…. but I am getting there, the new mask is so much easier to move around in.
The good news for me this past week has been that my Consultant has agreed to put me onto Telephone consultations.. i can call them at any time if I wish to see them face to face, but after my appt last thursday I have already received my next ''appointment'' in the post. A date and time that they will call me. it certainly makes sense and will save me all the travelling every few weeks.
Kath, too has been a god send for me… she is certain;y the CPAP angel :) and always finds the time for us all xxx
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Permalink Reply by LINDA on
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hi, i was back at clinic yesterday, and now have resmed escape, set at 13.8 was also given a chin strap, so hoping it all comes together.
Kath Hope said:I was once called the 'CPAP Guardian Angel' Linda - bless! However, even angels have to sleep, so off now, but keep us posted. I would hang in there for your appointment that's coming up soon and hope you get the answers you need. Keep us posted + we'll all help with the next step if you're still struggling.
Glad you like the Hose Lift - I wouldn't be without mine, and I'm lazy so have a spare one packed for trips away, even though they only take seconds to disassemble LOL.
LINDA FERRIER said:Thanks Kath, you are an angel, don't know what I would have done these past two months without your help. The hoselift was a great idea, thank you. I will keep you posted
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I've decided i need to go back to my GP and ask to see another consultant but i will have to wait a while until I am able to talk about what happen at hospital with out getting upset. The first thing I am going to ask for is a copy of the letter from this consultant, as i need to see why he was so awful to me. I think because I said I'd not used the cpap for the last four weeks, but I did tell him how much I had really tried with it night after night, hour after hour. I think he had his hearing aid turned off !!! I am just worried about seeing any one else as need help not to be let down !x
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That's the spirit Gina :) Roz sounds like she has a great consultant not too far away!
For the sake of anyone reading this, Gina has tried so hard with the CPAP therapy and I have personally worked with her and fortunately she is local. We do have to accept that there are some people who for various reasons 'cannot' tolerate CPAP, which is different to 'will not.' I, myself, did not take to it straight away. I was hoping that Gina would have been given some support and other options. There are some people who have had to go down the route of a tracheotomy, which is far more invasive than CPAP, but for them they obviously had no other option. I'm not suggesting this for you Gina, until you've exhausted all other avenues.
Thanks to the lovely people on here who are supporting Gina, which is what this forum is about :)
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Kath, is it possible Gina could get referred down here. i know its a bit of a trek, but would certainly be worth it….. He comes highly recommended… as you know I was terrified of it all in the first place. i believe if it wasn't for Mr O, I wouldn't have continued…. He saw many a tears from me too and never lost his patience. i feel very privileged that nothing has been any problem for him.
He also arranged for me to have a mandibular advancement device made up ( at a private dental practice). Although isnt really adequate for severe OSA, he said i could use it if i needed a break from CPAP, but now has suggested using it along with the CPAP nasal mask as its keep my mouth closed and now not having to use a chin support.( Best thing ever to keep me quiet lol lol) I have a small recessed chin and nothing was staying put, so its been ideal. apart from my wisdom tooth has just flare up and the gum is all swollen. not sure i'll be able to use it tonight.
He did said that by treating us now, it would be making a saving on the NHS in the future. he must be doing welll as he has just opened a Harley Street Clinic… I think I'll stick to his NHS Clinic… its cheaper lol
I wish you luck Gina and hope that you find someone as understanding as i have. xxx
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Sorry to hear about the wisdom tooth problem and hope you managed a good night Roz. It's fabulous how patient and caring Mr Oko has been with you, and I hear lots of excellent reviews about him. It would be good if this were an option for poor Gina when she's had time to come to terms with things.
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Nearly missed this post Linda in the middle of this discussion....... good luck with this and let us know how you get on.
LINDA FERRIER said:hi, i was back at clinic yesterday, and now have resmed escape, set at 13.8 was also given a chin strap, so hoping it all comes together.
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Kath… I'm now 50 an they still havent come through lol not much chance now i think lol….and just as i thought once i started using the MAD with the Mask full time it would most prob aggravate the tooth..or part tooth. its been given me problems on and off for years, but never enough to go through having them removed. I'll chat to my dentist next tim ei go. I managed to sleep ok with it..all the pills I take must have knocked me out enough for it not to bother me :)
I do hope when Gina is ready that she is able to give it another go and I am pretty sure there must be something in the NHS's 'black book' somewhere that if she is willing to travel, then she can be seen where she likes. i would highly recommend him
Good luck Linda, hope this one works out. I couldnt get on with a chin strap, my chin just isnt the right shape lol, but prior to using the Madibular Device with the CPAP I was using one from Philips, but in the ened used one of those makeup head bands…(With teh velcro at the top….It didnt look great and must admit it was doing the job well enoigh, but i was finding it was getting a little warm, but it was helping to keep my mouth closed. :) xxx
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