Hope2SleepGuide

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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Hi Chris pleased to see you hear I'm also new to this and in my case a mask change helped me no end couldn't get on with the ones hospital gave me and they did try bless them so I bought one of Hop2Sleep site I'm not suggesting you do this but stick with it all will all come eventually.
Remember this your in charge not the mask and there is nothing stopping you from wearing it in the day time with or without the machine I've cooked in mine done the house work watched tv as Tesco likes to say every little helps
Steve
Thanks for the words of encouragement, I will stick with it and keep trying different masks until I find one that's good for me because I'm on my knees right now with it.
I think the auto pilot I've been working on for years has just about given up.
Thanks again, I'll keep you posted unless I have a really good sleep and I might just have a lie in.
I also suffer from claustrophobia so I understand the issue very well, I started off with the nasal mask but I'm a mouth breather so I went to the full face mask, it's a mirage Quattro. I couldn't get to sleep at all and so my g.p gave sleeping tablets and I was able to sleep for 8 hours with the mask on. I tried without the tablets but I still can't several years later. Sleeping tablets aren't recommended if you have osa but they work for me and I have not taken my mask off in a few years now. The tablets I take are zoplicone 3.75mg. Everybody is different and what I do might not be for you but the more information you have, the more options you have. Dont give up though, one you get it right, the feeling is wonderful./>

Chris Mabbott said:

Hi Eveyone

I’m new to the site and to the CPAP machine, I have been suffering with Sleep Apnoea for years and been going to the doctors with constant tiredness. Unfortunately they only ever treated me for the symptoms and never the cause. A friend of mine told me while we were sharing a room on holiday that I stopped breathing in my sleep so I googled it. That’s when I went back to my doctor last September and demanded a referral to hospital, I had my overnight sleep study in October and got my results on the 16th of February this year when I was given my CPAP machine. It turns out I have it quite severe and wake 60 times an hour…that might explain why I have been so tired for years.

I really can’t get on with the mask and so far 4 hours is the longest I have gone but I was wide awake the whole time. Do you ever get used to the claustrophobic feeling? I have been back to the hospital to ask for a different style of mask and I am waiting for that now, I also asked about lowering the pressure as I was struggling to breath. They won’t do that without the consultants consent.

I think I feel more tired than I ever have since picking up the CPAP, I think it maybe the fact that I actually know I have a problem now.

Living in hope that this will eventually work

Hi Chris

My mask is Phillips Amara View, It doesn't go over the bridge of my nose and does feel less enclosing

http://www.respironicsonline.co.uk/PublishedService?pageID=9&it...



Chris Mabbott said:

Thanks for the words of encouragement, I will stick with it and keep trying different masks until I find one that's good for me because I'm on my knees right now with it.
I think the auto pilot I've been working on for years has just about given up.
Thanks again, I'll keep you posted unless I have a really good sleep and I might just have a lie in.

Hi, thanks for letting me join. I recently moved to a new area, where the hospital provides a cpap machine, where as before i had to purchase my own. Funnily enough i am being supplied  with an older model then i had and can't use my newer model as they are unable to read the data from the sim card.... but never mind, not much difference and mask is the same so that's all good, and i never extracted the data to analyze anyhow. 

I've been a cpap user for over 4 years now, and took to it like duck to water, suffering from mental health issues i actually found it to be a good comforter to take me away from perils of everyday life.

I've never had any problems with what i hear about rain out, etc. I do use a humidifier as my nose was getting dry... i did at first purchase a nasal water spray in a canister, but that felt like it was washing my brains out, so happier with a humidifier thank you very much.

Anyhow that's me, Hi

Hi Kim, and I did sent you a welcome email I'm amazed to hear in this day and age you were with a hospital that couldn't supply a CPAP and especially bearing in mind the NICE guidelines that CPAP should be provided!  Good to hear you're on good therapy and I'm sure you'll sell your S10 machine, although I personally would keep it as a back up for emergencies, but I like to be over-prepared lol, as one night with bad therapy is enough to finish me off!

Kim Hunt said:

Hi, thanks for letting me join. I recently moved to a new area, where the hospital provides a cpap machine, where as before i had to purchase my own..................

Hi, I'm a middle-aged woman, diagnosed with sleep apnoea about a year ago, mixed obstructive and central. They started me on CPAP and switched me to BiPAP after a couple of months. Once I acclimatised to the feeling of air being shot down my nose, I found it a huge difference. I never sleep or nap without it! My husband has OSA as well, and has been using CPAP for years, so we look a right pair getting ready for bed.

I came looking for a place like this because I have two concerns at present. One is that I'm having a lot of difficulty finding a mask that works for me. The other is that I have a long haul flight in September, my first since diagnosis, and I'm trying to work out everything I need to do to prepare to sleep on board. 

It's so nice to find a site that's UK based!

Cheers!

Happy

Hi, You don't say what type of mask you are using at present and what specific problems it is causing you? As for your long haul flight you will need a letter from your doctor, sleep clinic etc. to say the pump is medical equipment and that it needs to be carry on luggage. It is also a good idea to download a copy of the manufacturer's disclaimer that the pump will not interfere with the aircraft's instruments. I am not sure if they will let you use the pump on board the plane. On both my trips to the USA I was allowed to have it as an extra piece of carry on luggage but not allowed to use it in flight.

Rgds,

Iain Noble

British Airways says I can use it, but they highly recommend a battery because they can't guarantee the seat power points will actually have power. So I'm not worried so much about allowed to use it as how to use it - trying to manoeuvre the machine and battery and hose and mask and me in a premium economy seat with the least disturbance to seatmates and flight crew. It just seems like it's all going to be a bit awkward.

My mask saga: I started with nasal pillows, which I loved, but when I switched to BiPAP, the nurse said they wouldn't work and took them away to replace with the Wisp. That one worked, ish, but I kept having jaw pain, right where the plastic hinge hit me. I complained about it and the nurse gave me the Amara View, which I tried only one night, and realized the Wisp wasn't so bad after all. But now the Wisp has fallen apart and I'm using the Amara until my appointment next month. I'm not sure if I want to go back to the Wisp and try padding that hinge, or maybe using the SleepCap, or take my chances with a fourth type of mask in a year's time.   But knowing I have that trip in September, (where I'll be away from the NHS for four weeks as well) makes me think I should play it safe and get the Wisp rather than trying something untested.

What I haaaaaate about the Amara View is that I can feel hard plastic digging into me. It feels like the curve of the mask doesn't match the curve of my face. I get the burping type of leaks out of the sides, and the only way to fix them is to tighten it, until eventually it is making my head hurt it is so tight. I don't hate it enough to not wear it - I've only had a couple of nights without therapy in the past year, and every time I do, I regret it. 

Welcome to the forum Happy, although shame you're not 'happy' with your masks.  It can take a while to find the 'right' one for us.  I'm not sure why the nurse said the nasal pillows wouldn't work with the BiPAP as there are lots of people who use them with one.  If the Wisp has broken and you got it from the NHS they should change it for you so worth giving them a ring.  Might also be worth trying a smaller cushion with the Amara View as I've known a lot of people be given a size too big.  If people measure on the border of 2 sizes it's best to go with the smaller one. 

Good to hear British Airways have confirmed you can use your machine on the flight as not all the airlines allow this.  I have no personal experience of this and might be worth starting a new discussion for people to see.  Meanwhile, check out the old travel blog I wrote a while ago as there may be some other tips on there for your holiday http://www.sleepapnoeablog.com/travelling-on-holidaysvacations-trip...

Hi Kath and all other members, my name is Pete Turpin, I've just been diagnosed with Sleep Apnoea, I picked my Cpap up yesterday for a weeks trial, thought I will get straight on with it without a problem, yeah right I live and learn, the pressure was set at 11, I ended up reducing the pressure with the 20 minute reduction button down to 4, still had difficulty trying to sleep. I have never suffered from Claustrophobia, but had a couple of bouts of it during the night, then my nose blocked up and had to breathe through my mouth, I felt like throwing the mask across the bedroom, but didn't and persevered, the one saving grace was that my wife said I never snored all night, which is a good thing for her, I am hoping it's easier tonight with the mask.

I have been reading up about Sleep Apnoea, but it's good to look at the Forum and see what others with more experience of it have to say and I have learn't more about it, obviously I am am new to Sleep Apnoea and don't know a lot about the masks and machines so am reading everything I can with great gusto, which maybe good or bad, I don't know, anyway I will see how I get on tonight.

Pete,

I know what you mean about the claustrophobia. I suffered the same when I first starting using a mask. All I can say is keep at it, the feeling will wear off and now I can't actually get to sleep unless I am wearing the mask.

If you are having problems with blocked nose/dry mouth you may like to ask them for a humidifier unit to go with the pump.

Rgds,

Iain Noble

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Latest Activity

Profile IconMatthew li and Stuart Wormleighton joined Hope2SleepGuide
yesterday
Marc Newman is now a member of Hope2SleepGuide
Wednesday
Profile IconJune Curtin and Frank Fartin joined Hope2SleepGuide
Mar 18
Lee replied to Lee's discussion DreamWear full face
"Well I turned EPR on and tried the mask again last night, but again I stopped breathing which woke me up gasping for air. It seems to happen just after or not long after I drop off, after the third time I changed mask back to original one and went…"
Mar 18
Kath Hope replied to Lee's discussion DreamWear full face
"Sorry for the delay as I managed to get myself locked out of the forum lol.  Please don't be messing with the pressures and contact your hospital if your wife has noticed you looking gray.  Perhaps go back to a different mask until…"
Mar 15
Edam replied to Edam's discussion APAP or BIPAP
"There is no link between the 95% pressure and the AHI. A few nights back my 95% pressure was 19.46 with AHI 0 Last night my 95% pressure was 17 with AHI 0 When the AHI does increase its normally hypopnoea,s So why does the APAP want to increase the…"
Mar 15
Lee replied to Lee's discussion DreamWear full face
"Hi thanks for the reply’s I will look at this as the wife said I was gray yesterday and after looking at the instructions again it says about the symptoms I had to not use and talk to my clinic so a bit worried. I used my other full face mask…"
Mar 15
Sleep2snore replied to Lee's discussion DreamWear full face
"I would say if you have the Ramp Start enabled to make it start at a higher pressure.  Check also if you are using a big enough cushion as this is a common mistake.  Same with Nasal Pillows, people tend too use a size to small. Check you…"
Mar 14
Sleep2snore replied to Edam's discussion APAP or BIPAP
"That is not impossible, even dust and mites can cause problems, even the mites that are so tiny you can't see them and they live on your body.  However, only you yourself can work out if certain food make things worse.  It could be…"
Mar 14
Edam replied to Edam's discussion APAP or BIPAP
"I am now finding that the pressure the APAP runs at during the night is dependent  on what I have eaten that evening. I have found that if I have bolied rice rather than chips with the evening meal then my 95% pressure can reduce by as much as…"
Mar 14
Kath Hope replied to Lee's discussion DreamWear full face
"Hi Lee.  Sorry to hear you're still having problems with masks.  It's not normal to feel there's not enough air with the DreamWear as that mask usually give people the opposite sensation of feeling more pressure than…"
Mar 13
Lee posted a discussion

DreamWear full face

Hi all I’m having trouble with my DreamWear full face mask,I’ve spent a long time getting the fit right but I have two problems 1. The bit between my nostrils somehow hurts it’s bearable but I would sooner not have the pain and 2. I have to breathe…See More
Mar 13
Sleep2snore replied to SleepyHead's discussion NHS or Private to get diagnosis to determine treatment
"How are you getting on, any progress?"
Mar 5
Sleep2snore replied to Edam's discussion APAP or BIPAP
"I was not off for a few days. The results were the same as when I started! Which I have to say was bad!"
Mar 5
Felicity Goodliffe is now a member of Hope2SleepGuide
Mar 5
Edam replied to Edam's discussion APAP or BIPAP
"It is my understanding that when a new sleep test is required you need to be off CPAP for a few days to get a accurate test. Is this correct The London hospital does not seem to be aware of this"
Mar 4
John Brown is now a member of Hope2SleepGuide
Mar 2
SleepyHead replied to SleepyHead's discussion NHS or Private to get diagnosis to determine treatment
"Thank you - that is very helpful"
Feb 26
Sleep2snore replied to SleepyHead's discussion NHS or Private to get diagnosis to determine treatment
"Private and will not be cheap!  London Sleep Clinic (PRIVATE) London Bridge Hospital  know nothing about this one. Sleep & Snoring Institute  Know nothing about this one either, If you are near London try getting to one of the…"
Feb 25
Sleep2snore replied to Edam's discussion APAP or BIPAP
"Sleepyhead YouTube.  Sleepyhead on YouTube"
Feb 25

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