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Sleep Apnoea Forum Bringing Help + Support to the Patient
Welcome to our Forum - Feel Free to Introduce Yourself Here.
Welcome to the Hope2SleepGuide Forum, which is a service run by the Hope2Sleep Charity founded by Kath Hope with a marvellous team of trustees and volunteers.
Kath herself has severe sleep apnoea and hypoventilation/hypercapnia, and has used CPAP for several years and is now on non-invasive ventilation. Our trustees and volunteers are all either sufferers of sleep disordered breathing or clinicians/medics working in this field, and most importantly, we are all passionate in supporting (with empathy) others and raising awareness to help people live healthier and more energised lives.
Whilst we do not give medical advice, more often than not, with support, tips and knowledge, people can overcome any problems experienced with our therapy, and there is a whole page dedicated to this on the website http://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-or...
Please come and join us, and don’t feel obligated to use your ‘real’ name if you prefer to remain anonymous as this is a public forum. Don’t be shy in posting and sharing, as we’re all in this together and to help each other.
Best Wishes for good sleep!
Kath
Views: 13125
Replies to This Discussion
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Permalink Reply by Kath Hope on
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Good idea to get your questions written down before you go Dee, and by the way I've not forgotten your query with Respironics, but they're just away at conference so will probably be early next week.
I also felt I wasn't getting better sleep when I was first on therapy. Of course, this isn't really true because the sleep we get on CPAP is safer even if it's not as long as untreated sleep, but I get your point totally!
Hopefully, once you get onto good therapy the depression will start to lift. Hang in there as you're on the right road, but have just hit a bump!
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Permalink Reply by DeeNJai on
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Questions to ask the Tech
1. Why is the machine changing modes between APAP & Bi-Level as this machine is a series 60 (561 P) model so it’s not Bi-Level as this would be (761 P).
2. I am feeling a lot more tired again as I feel the treatment isn't working as well as did at the beginning.
3. At times I have problems with large leaks.
a. Currently I am swooping masks every couple of days to protect my skin as I was getting a lot of eczema around where the mask was touching the skin.
4. When it is on Bi-Level mode I feel a lot better and I don't always need a nap during the afternoon which is a good thing.
5. I would like to have a new machine as I don't trust the machine I have at the moment.
6. What is the difference of APAP against Bi-Level machines as I have said in question 4 I feel better when on Bi-Level.
7. Would it possible to have a trial on Bi-Level to see if I get a better nights sleep for three months and then review it.Please do change the questions if you feel that they need changing.
Dee
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Permalink Reply by 99 on
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1 a bi pap has higher pressure
2
3 some masks are not suitable for higher pressure
4
5
6 a bi has higher pressure
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Permalink Reply by Terry Vella on
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DeeNJai, welcome, good points by 99, Bi-Level machines are mainly for pressures above APAP's and central sleep apnea. I would be getting them to check your data like your AHI which should be as low as possible but below 5, your leak rates and monitoring them to make sure your therapy is working correctly. Once you know that is under control and working, it may be your other illness's or meds that are affecting you. What machine are you on at the moment and what are the pressures? Do you know what your AHI was at your sleep study and what it is each night?
The Bi-level machine maybe what you need but you need to make sure your therapy is currently working.
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Hi
I have just calculated the average hours a sleep for the last three weeks I have been a sleep more than 13 hours a day which isnt good as that mean I am a sleep more than a wake. I dont know what the AHI levels for the two night study I did only the average oxygen level but I will ask that on Friday. Over the last month and bit it has arranged from as little as AHI's have been between 2.5 - over 10 events. Also my snoring has increased over the last couple of months.
Dee
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Hi
I was wondering if there is anything to help keep my neck in the right position when I sleep as my neck muscles arent that great a sleep or awake. I know that my head leans forward most of the time so it makes the back of mouth area even more restricted. My back muscles have been weak since I was young after I had a bad fall as a 3 year old. I so get a lot of muscle pain in the neck and sometimes I do wear a neck collar and back support to help with posture as I cant keep my back in the right place 24 hours a day/
Dee
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Dee, it sounds like your CPAP treatment sn't working correctly, with CPAP you shouldn't be snoring. I think they really need to have a look at your data, your pressure may need to be adjusted or you may be have mask leaks and not getting the proper therapy. Depending on the brand and model of CPAP you have, you can download free software called Sleepyhead and you can look at your own data. If you let me know the brand and model I can send you a link for the software if you want to try it, but I would definetly be asking all those questions.
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I have a REMStar system one Auto with A-Flex (561P) machine. from the 1 December until last night the snoring has ranged from nearly 50 to as little as 5. Yes I download my data every couple of days and then I put down the most of the data so i can see what was going on. Also my RERA has increased over the last few months since the machine has been playing up. I use sleepihead.
I am going to ask for my sleep study data to see what it was like before i was getting treated for OSA.
Dee
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Dee, the snore rates seem very high compared to mine. Mine are alway below 1. I think they should check all your data especially your AHI, leaks and now your snore rate. It's sounds like your therapy isn't working correctly. Let us know how you go.
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Dee, I've just heard back from Respironics and you definitely have the 60 Series REMstar Auto (APAP) and, as I suspected it is not possible for it to switch between BiLevel + APAP so it sounds like the SleepyHead is getting confused and messing up your stats. Whilst SleepyHead is a good free resource, the Encore Software is always the most reliable - same goes for any of the different manufacturers software. I use SleepyHead for speed, but check on any inconsistencies or surprises on my Encore. Perhaps your clinic can look at the settings on your machine too when you go back this Friday.
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Hi Just got back from the sleep unit and she noticed that I am having a lot of central sleep apnoeas so now I am waiting to have a full sleep suit done it should be in the next six weeks. Hopefully they will then change the machine to a Bi-Level machine to treat the CA problem
Dee
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