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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
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Replies to This Discussion
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Permalink Reply by Sandy K. King on
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yes Terry the guy i saw wednesday set it on c-flex and I did fine today on a nap. We will see tonight when I go to sleep. I will call the DME tomorrow for sure. I didn't manage to get to my bed last night because my rat had 7 babies, which I was excited and anxious about any of them dying, but that is a subject not for me to discuss here.I fell asleep in my chair and woke up in it the next morning and crawled in the bed and didn't have the c-pap back out of the carrying bag and was too groggy with the seroquel to set it up. So tonight we will see how it go's. I am doing very well with the compliance numbers and it was 90 days to get to the requirement, not 30. So I am doing good there and I do plan on wearing it every night all night as I want to feel better. I could have had SA for years and not even known it. I often would wake up with the covers kicked off even if it was winter and cold in our room. I mean the bed look like a tornado went through the blankets! lol! Anyway, thank ya for writing. Have a great day!
Terry Vella said:Sandy, I think the suffercating feeling maybe coming from what is called EPR or the Pressure Relief on Exhale, there is a setting on your machine but I'm reluctant to change it, can you ring the DME and ask them what it is set at and how you can change it? I have looked up the manual fpr your machine and it looks like the C-Flex Setting which has off, 1, 2, 3.
It is difficult for me because I use a different brand of machine, it basically gives you more comfort when you exhale, mine was turned off and I felt like I was suffercating, each night I changed the setting up one and finally I prefer mine on 3. You really need to get them to assist you, it's really hard trying to assist via the internet, if you don't get anywhere can you speak to your sleep specialist between the to of them they have to get you set up properly or you will never use it. Let me know how you go, Terry
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Permalink Reply by Terry Vella on
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No worries Sandy, it possible has caused some of you other illness's I was diagnosed with depression from it and that has gone and I'm off all meds now. I have had mine all my life even as a baby I couldn't sleep, I wish I had of known 48 years ago, Terry
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Permalink Reply by Colin on
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Hi everyone!
Looks like I"ll be relying on you guys and gals to help keep me straight (if I may be so bold) having got confirmation of my CPAP trial in Mid May! I'm a little shell shocked at moment with loads of questions and may be I'll put a post on elsewhere summarising my experience so far when I get my head round it all!
Regards
Colin
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Permalink Reply by Kath Hope on
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Hi Colin
Glad you found us and can get prepared for life as a CPAP user, and I wish this help had been around when I started off on my lonely journey. The good thing is that if you come across any problems, it won't be anything that some of us haven't experienced before, and for now, shock at getting diagnosed is common. I actually was convinced my sleep study would prove I didn't have it, and the consultant had to show me my medical notes for me to believe him (thought he'd muddled me with another patient lol).
Check out a blog I wrote how I came to terms with it http://www.sleepapnoeablog.com/is-cpap-a-blessing-or-a-curse/ and you can also see my brief story over on the shop website http://www.hope2sleep.co.uk/page/my-story
Look forward to speaking with you on here, and good luck.....
Kath
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Hi there, thanks for the welcome, to clarify my situation, I had an appointment with a consultant at a sleep clinic the other week where I was weighed, had my height measured and my blood pressure taken and I played him a recording of my snoring/breathing made by an iphone app. He recommended I had an oximetry test done asap so I took a wrist device(pulse oximeter) home and returned it the following morning.
One week and half later I have letter telling me I have severe obstructive sleep apnea and been put on waiting list CPAP trial. Following day have letter confirming CPAP trial appointment with CPAP nurse for a week trial in mid may! ( By the way the letter said I had 68 breathing interuptions throughout the night ) I have not been able to relate this to any other scale as others refer to AH index! (incidentally I am a gadget geek so have invested in a CMS50F)! Having read through alot of other peoples experience I have been surprised not to have been referred for a hospital sleep study and, or given a physical examination before being referred for CPAP trial!
Colin
Mary Zimlich said:Colin, welcome to Hope2Sleep. Have I got it right that your sleep testing will be done in mid May? If I have that right and you want some information on how to study for the test let us know. Seriously though we can give you some hints- things we've learned through the years to help you get a good nights sleep. The more data they have with you actually sleeping the better. As soon as you have questions there will be someone on the forum to help out.
Mary
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Most of us here in the UK don't get hospital studies or examined as to why we have sleep apnoea Colin. As more awareness and money is invested I'm sure things will improve in time, which is what the Parliamentary Reception this Tuesday is about - see this post http://hope2sleepguide.co.uk/forum/topics/help-needed-please-invite... Most of us have home sleep studies with oximetry and polysomnography, but I'm impressed your consultant was interested in your IPhone app. Which clinic are you with, as a lot of people from Scarborough are sent through to our hospital here in Hull.
Bearing in mind you've been told you have severe sleep apnoea I would guess that your AHI is 68 as 30+ is severe. This means you had 68 apnoeas or hypopneas per hour!
I hope you get a CPAP which shows you data of your sleep, with you being a gadget geek like me
Mine only supply basic CPAP with no data, so I've bought my own so I can keep a check on my therapy.Not long to go now before you'll hopefully be enjoying safe restful sleep and start feeling better in yourself, and more importantly protected from all the health conditions sleep apnoea is linked with.
Let us know how you get on and any tips you need.
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Thank you for your welcoming comments and after the initial shock of having being diagnosed I am look forward positively to CPAP treatment.
Infact I decided that I would phone up the sleep clinic this morning and enquire if there was any mileage in putting my name forward for being available short notice if any cancellations came up before my appointment in mid May. I was informed that there was in fact a list and they would put me on it. I am now highly delighted to say I received a phone call mid afternoon and am now going to start the CPAP trial this coming Tueday!
Now busy collecting a list of questions to ask!
Regards
Colin
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Well done Colin and glad you got in early, the list of questions is somethng I always suggest that people do as it can be over whelming, hope it goes well and let us know how you go.
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Great to hear Colin. Good luck for Tuesday and let us know how you get on.
Colin said:Thank you for your welcoming comments and after the initial shock of having being diagnosed I am look forward positively to CPAP treatment.
Infact I decided that I would phone up the sleep clinic this morning and enquire if there was any mileage in putting my name forward for being available short notice if any cancellations came up before my appointment in mid May. I was informed that there was in fact a list and they would put me on it. I am now highly delighted to say I received a phone call mid afternoon and am now going to start the CPAP trial this coming Tueday!
Now busy collecting a list of questions to ask!
Regards
Colin
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Hi. I've had a month using the CPAP machine, a ResMed with a Quattro full face mask. Im sort of getting used to it - I fit it OK, and get to sleep but wake up with it going at full blast and leaking old air into my eyes. I've tried the gel nasal pad but I think my nose is a bit narrow, as it kept sticking in my eyes. As anyone tried any of the gels that are advertised to stop leaks? Diane
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I used to have that problem with the Quattro Diane, as well as nasal bridge sores. Like you, I have a slim nasal bridge, but if everything else is ok with that mask it would be worth trying to make some liners, which will cost you nothing if you have an old t-shirt to use. Here's a link to how to do this on another discussion and let us know if it helps http://hope2sleepguide.co.uk/forum/topics/masks-and-air-leaks
Diane Finlayson said:Hi. I've had a month using the CPAP machine, a ResMed with a Quattro full face mask. Im sort of getting used to it - I fit it OK, and get to sleep but wake up with it going at full blast and leaking old air into my eyes. I've tried the gel nasal pad but I think my nose is a bit narrow, as it kept sticking in my eyes. As anyone tried any of the gels that are advertised to stop leaks? Diane
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I don't know if anyone else has problems with their face feeling (and looking!) "crumpled" around the eyes in the morning, since I started using the CPAP machine? I have found a little eye roll-on from "Simple" which is unscented, really cools and tightens the skin and costs about £5, about half what you pay for Garnier or other brands. Thought I would share my discovery. I keep it by a window that's open overnight, so it's really refreshing when you do small circular applications round your eyes. Diane
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