Hi Kath I've being using a cpap machine for over 3 years the res meds one and full mask the last few weeks I have been getting bad headaches and dried sinuses making me feel horrid . I've got pressure on 7 a wooly cover for hose humidifier, I'm running out of ideas I did use a nasal spray at nite but was told to stop this I've joined today many thanks
Hi Kath, thanks for the welcome. Having just started therapy after a 2 year struggle to get diagnosed I have a bunch of questions but I'll try to see if they've been asked and answered on the forum first before raining them down on everyone.
Thanks Kath, I'll wait until Marion's able to reply. I don't want to disturb while she's poorly - it can wait for now. Thanks once again for your help x
Hi Kath, thanks for the comment about Marion and sorry to hear she's not well. I've added her as a friend and am waiting for her to accept. I'm not sure where I should copy/paste my comment to her though as it already appears to be there? I'm not familiar with the forum set-up yet - that's my excuse anyway! x
Interesting ... thanks Kath, I'll take a look. I've also been using mine for years - 15 in fact and get along with it fine now (after a load of teething problems!). What I do hate is the weight and bulk of it. I'm worrying about how me and my husband can get away for a few days in the summer as he's just had his driving licence revoked due to ill-health and I can't drive. I guess I'll be pleading with Papworth again when I go in a couple of months to test me on other (smaller) machines - usually to no avail!
Hi Kath, thanks again for the useful info. Firstly I did wonder if it's some natural oils coming out of my skin; I always wash before bed and use no creams. You mentioned the change in temperature during the night, well, my face often gets hot and I wondered if that could cause the mask to slip as well as a drop in temp.
I clean my mask every day, wiping with a little washing up liquid then wipe/rinse with clean wet cloth.
The hospital tried me on APAP but when the pressure rose it caused leaking so they change it for me.
I have a medium size mask (the hospital fitted it) and although I have a small face I have quite a big nose lol.
I visited the sleep clinic last June/July at St James Hospital in Leeds, when I was given the CPAP machine. I haven't been asked to go back yet; they only gave me one spare filter. How long would you expect a mask to last and how often should I change the filter?
NB I have just order some items from your website which may help me too; the cleansing wipes, the cream to help sore skin etc and the card (in case of emergency).
I almost always get off get off to sleep with no problem at all; my mask appears to fit quite well, however, after maybe two or three hours I wake up; mask leaking usually from around top of nose. Trouble is when I awake I then want the loo, anyway, I have realised that if I wipe my face and mask with a damp cloth (I have this at the side of bed) after I've done faffing, I can sometimes go back to sleep for another hour or so, but, sometimes at this time I just cannot get the mask to fit without it leaking; then I give up.
Thank you Kath it's nice to be here. I was diagnosed with Sleep Apnea about 5 months and have just about mastered the equipment, however, on some occasions I struggle and unfortunately ,I have to sleep without using the machine all night. I found this site when someone on Health Unlocked recommended it
Thank you so very much for reply especially on a Sunday when Im suree you must have better things to do!! I managed in between the torrential rain, to get in an hours walk with the dogs and theyve had a good grooming session today!!
I am so very sorry to hear of your losing your mum at such a young age. So terribly sad and I do feel for you but what a testament you are to her memory in what you are doing here! So many people don't know about this illness and lots of people just laugh at me when I tell them as they don't undertsnad how dangerous it can be.
I have been sitting here in floods of tears reading through all of this as I feel at last, as though maybe someone now can help? It's true, it is a very isolating experience and I have felt so alone in trying to cope with it and so ill all the time as nothing seems to have worked over the past 3 years. I so need to feel more positive and energised and maybe with your help I will.
Hi Kath. Thank you for your message. Yes I am the proud owner of 4 collies and a GSD x collie plus I sponsor a deaf and blind collie too. Love my dogs and have owned and worked collies in agility for 30 years!!
I was diagnosed with OSA 3 years ago. I tried the CPAP machine for over a year but found it wasn't helping and was in fact so uncomfortable and waking me up more than I was waking up without it. I am under Papworth Hospital but apart from getting me to try several different masks, none of which were any better (I sleep on my side and breathe through my mouth) they have been pretty unsympathtic to be honest! A year ago a nurse suggested I try a mandibular device and I tried this for a year. In principle I like the idea as the CPAP is just so awful for me. However I have been becoming more and more ill in that it really wasn't doing its job and half the time was falling out of my mouth and spending most of the night under my arm!!!! Papworth discharged me in January as I wasn't using my CPAP anymore and they said I was wasting their time!!
3 weeks ago I went back to the CPAP and have asked my doctor to refer me back to Papworth and I have tried to be a lot more patient and to change my mindset on this horrid thing but it leaks all the time, is noisy and wakes me up every hour, and, despite having the humidifier, I have such a dry cracked mouth all the time and my nose is so pinched and I wake up and go to work with great bug "tram lines" down my face - not very attractive! Plus I feel so blimin awful. Am normally a very upbeat person, have a lot of hobbies but nowadays I seem to feel so down, have no concentration and feel exhausted permanantly and fell asleep driving once!
I am hoping I may find out more inforomation and get some help as I am at the end of my tether now.
No sorry I'm using cpap at the moment but not getting on very well
I'm being fitted with a dental devise in November for mandular mouth guard in the hope that this will work very well just had enough now so tired
Hi Kath
Thxs for your message , glad to be on board , so sad that you lost your mom at such an early age but one thing you can be sure of Kath is she will be very proud of what you have achieved with your website helping & assisting others as they cope with the problems encountered with sleep apnoea, keep up the good work & well done
kath im sorry but i had computer problems with emails yesterday and could not get on site. iregistered as a new member to get back on.i think i finally sorted the problem. i hope you are well
The only pain is the filters need changing evert 18-21 days. The hospital are complaint as they send out only 3 at a time and want you to make them last 3 months. I'd I don't change them every 18-21 days the alarm keep going off much to our annoyance
Thank you for your kind comments my boy has aspergers and other disabilities so I speak on his behalf. He has mild to moderate communication problems but overall a happy pleasent young man .anyone know if there is anything I could use to clean the insides of the hose, can't use water as it doesn't dry
Thank you so much for this site. So pleased to find it and know people are going through the same as my son. We have had lots of trouble with masks for Peter he know has one that's been ok till the very loud whistling and squeezing starts the noise is sometimes horrendous . Glad to find cleaning wipes and dry sore skin cream on this site too. The hospital have been somewhat helpfully regarding bacterial filters back and front and with masks as well that's about it really. Thank you for this website looking forward to buying more stuff
"Oh that's very sad to hear Chris. In fact I seem to recall the name and if it's the same consultant he was ENT. Good to hear you've got through to the clinic though."
"Hi,
Managed to get through to the hospital on the phone, it seems that my original consultant a mr. Haranhi has died from coronavirus recently which is a great shame as he was well thought of. Reviews are now carried out over the phone when they can…"
"Normally a consultant's name would be on the diagnosis if you got it in letter form. It's difficult at the moment to reach all the clinics, so try sending an email as those are usually picked up."
Hi,I have just realised I have never had any follow up appointments since being given my resmed autosense 10 in January 2018. Dvla wants to know my consultant but I don't have one. Phoned hospital but they are blank. Should I be having one?Chris See More
Hi everyone, I have been hit by Universal Credit cuts and problems whilst in lockdown, I also can't go into shops as I'm still shielding. I'm not sure if my sleep apnea is working or not as I only seem to get my machine checked out once a year. I…See More
"Hi Stuart. Reading what you say, you had sleep apnoea, you are being treated, and therefore you are now symptom-free. Perhaps your social worker doesn't know what sleep apnoea is, and is simply covering their own backside. Do…"
"They have now suggested my wife should give up her well paid job and becomes sole carer for my children. With many jobs becoming scarce, I don't consider this to be an option. Am I being unreasonable?"
"At the moment I have a problem with Social Services, because they believe my sleep apnea effects my ability to care for my two children. (Who are aged 3 and 4) I have been using a Dream Ware Mask, and a machine that records my sleeping on an SD…"
"At the moment I have a problem with Social Services, because they believe my sleep apnea effects my ability to care for my two children. (Who are aged 3 and 4) I have been using a Dream Ware Mask, and a machine that records my sleeping on an SD…"
"Stuart, I would also recommend you removing your comments of your account on our charity's website as I've just looked at the 'login' link you've copied and if people click on that then they will have your email…"
"Stuart, you haven't been a member of this forum before until you joined yesterday and there are no previous posts from you on here due to you not existing on the forum so there was nothing available that could have been deleted. The text…"
"Hi All This is the second time Ive joined.... See below Apr 13, 2017, 7:08 PM
I had to join again because my posts were Deleted. I hope they will all be put back now? I posted an item that I thought was relevant to all. Please look and…"
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Hi Kath, thanks for the welcome. Having just started therapy after a 2 year struggle to get diagnosed I have a bunch of questions but I'll try to see if they've been asked and answered on the forum first before raining them down on everyone.
Thanks Kath, I'll wait until Marion's able to reply. I don't want to disturb while she's poorly - it can wait for now. Thanks once again for your help x
Hi Kath, thanks for the comment about Marion and sorry to hear she's not well. I've added her as a friend and am waiting for her to accept. I'm not sure where I should copy/paste my comment to her though as it already appears to be there? I'm not familiar with the forum set-up yet - that's my excuse anyway! x
Thank you for adding me, already I've received so much support and information, and it's very much appreciated!
Thanks Kath!
Interesting ... thanks Kath, I'll take a look. I've also been using mine for years - 15 in fact and get along with it fine now (after a load of teething problems!). What I do hate is the weight and bulk of it. I'm worrying about how me and my husband can get away for a few days in the summer as he's just had his driving licence revoked due to ill-health and I can't drive. I guess I'll be pleading with Papworth again when I go in a couple of months to test me on other (smaller) machines - usually to no avail!
Hi Kath, thanks again for the useful info. Firstly I did wonder if it's some natural oils coming out of my skin; I always wash before bed and use no creams. You mentioned the change in temperature during the night, well, my face often gets hot and I wondered if that could cause the mask to slip as well as a drop in temp.
I clean my mask every day, wiping with a little washing up liquid then wipe/rinse with clean wet cloth.
The hospital tried me on APAP but when the pressure rose it caused leaking so they change it for me.
I have a medium size mask (the hospital fitted it) and although I have a small face I have quite a big nose lol.
I visited the sleep clinic last June/July at St James Hospital in Leeds, when I was given the CPAP machine. I haven't been asked to go back yet; they only gave me one spare filter. How long would you expect a mask to last and how often should I change the filter?
NB I have just order some items from your website which may help me too; the cleansing wipes, the cream to help sore skin etc and the card (in case of emergency).
Thank you so much for your help, glad I found you
I almost always get off get off to sleep with no problem at all; my mask appears to fit quite well, however, after maybe two or three hours I wake up; mask leaking usually from around top of nose. Trouble is when I awake I then want the loo, anyway, I have realised that if I wipe my face and mask with a damp cloth (I have this at the side of bed) after I've done faffing, I can sometimes go back to sleep for another hour or so, but, sometimes at this time I just cannot get the mask to fit without it leaking; then I give up.
Thank you Kath it's nice to be here. I was diagnosed with Sleep Apnea about 5 months and have just about mastered the equipment, however, on some occasions I struggle and unfortunately ,I have to sleep without using the machine all night. I found this site when someone on Health Unlocked recommended it
June
.
Thanks fro the welcome kath i can see this site is going to be veryhelpful for me
Thank you so very much for reply especially on a Sunday when Im suree you must have better things to do!! I managed in between the torrential rain, to get in an hours walk with the dogs and theyve had a good grooming session today!!
I am so very sorry to hear of your losing your mum at such a young age. So terribly sad and I do feel for you but what a testament you are to her memory in what you are doing here! So many people don't know about this illness and lots of people just laugh at me when I tell them as they don't undertsnad how dangerous it can be.
I have been sitting here in floods of tears reading through all of this as I feel at last, as though maybe someone now can help? It's true, it is a very isolating experience and I have felt so alone in trying to cope with it and so ill all the time as nothing seems to have worked over the past 3 years. I so need to feel more positive and energised and maybe with your help I will.
Thank you so much. xxxx
Hi Kath. Thank you for your message. Yes I am the proud owner of 4 collies and a GSD x collie plus I sponsor a deaf and blind collie too. Love my dogs and have owned and worked collies in agility for 30 years!!
I was diagnosed with OSA 3 years ago. I tried the CPAP machine for over a year but found it wasn't helping and was in fact so uncomfortable and waking me up more than I was waking up without it. I am under Papworth Hospital but apart from getting me to try several different masks, none of which were any better (I sleep on my side and breathe through my mouth) they have been pretty unsympathtic to be honest! A year ago a nurse suggested I try a mandibular device and I tried this for a year. In principle I like the idea as the CPAP is just so awful for me. However I have been becoming more and more ill in that it really wasn't doing its job and half the time was falling out of my mouth and spending most of the night under my arm!!!! Papworth discharged me in January as I wasn't using my CPAP anymore and they said I was wasting their time!!
3 weeks ago I went back to the CPAP and have asked my doctor to refer me back to Papworth and I have tried to be a lot more patient and to change my mindset on this horrid thing but it leaks all the time, is noisy and wakes me up every hour, and, despite having the humidifier, I have such a dry cracked mouth all the time and my nose is so pinched and I wake up and go to work with great bug "tram lines" down my face - not very attractive! Plus I feel so blimin awful. Am normally a very upbeat person, have a lot of hobbies but nowadays I seem to feel so down, have no concentration and feel exhausted permanantly and fell asleep driving once!
I am hoping I may find out more inforomation and get some help as I am at the end of my tether now.
Sorry for long post - just fed up with this!!
I'm being fitted with a dental devise in November for mandular mouth guard in the hope that this will work very well just had enough now so tired
Thxs for your message , glad to be on board , so sad that you lost your mom at such an early age but one thing you can be sure of Kath is she will be very proud of what you have achieved with your website helping & assisting others as they cope with the problems encountered with sleep apnoea, keep up the good work & well done
Hi Kath
They say a little knowledge is dangerous just like me looking at all those wiggley lines!!
Phil
kath im sorry but i had computer problems with emails yesterday and could not get on site. iregistered as a new member to get back on.i think i finally sorted the problem. i hope you are well
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