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Elizabeth Howard
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Elizabeth Howard's Discussions
BREATHING PROBLEMS WITH VENTILATOR
6 Replies
I use a nippy 3+ ventilator as I have scoliosis. I also use oxygen, 1 litre. I am 48 years old. A few weeks ago I started with a cold, was given nothing for it by another Dr in a different surgery, I…Continue
Started this discussion. Last reply by Elizabeth Howard Dec 14, 2014.
NIPPY AND OXYGEN
1 Reply
Not sure if this came out on my original post, as no record of it. I am 45 years old and have scoliosis with respiratory failure. I have had 3 operations for scoliosis, I was told when I was very…Continue
Started this discussion. Last reply by Kath Hope Nov 28, 2011.
Elizabeth Howard's Page
Profile Information
- Treatment Being Used, if any?
- Other
- If Machine Being Used, What Make or Model?
- Nippy ventilator and oxygen
- If Mask Being Used, What Type or Name?
- Full face mask for nippy 3+ and nasal cranula for oxygen
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Latest Activity
"Hi Nick thanks. Does it do the job and could you camp with it?"
CPAP Total Face Mask
I was curious whether anyone has used the CPAP Total Face Masks and could pass on their observations? I've been using an Airfit F20 for years which is fine apart from the permanent red mark on the bridge of my nose, and have recently tried the…See More
"I've been using the Resmed Airmini for about 5 years when travelling - overall lightweight and small and can be controlled by an App, but it does produce a loud whistling/wind sound for me which hasn't been reduced by an inline filter or…"
"Hi
It sounds like you need to have more conversations with your sleep clinic. There's little point in having a high pressure if it means you cannot tolerate the machine. There's an interesting video here…"
Pressure waking me up. Belching and wind
HiI'm using the prisma smart max machine. Initially I was just on a nasal mask, this changed as I was sleeping with my mouth open. I then went to face and nose mask and complained of bad wind and belching. Sometimes the pressure in the night was…See More
"Just to tidy this up, I finally had an in-person review by my sleep clinic yesterday, who agreed the ResMed AirSense 10 was "wheezy" and replaced the machine."
"thank you jonathan,i did get the it pack so tried the small and still struggled but i was sat up in bed so will try lying down great suggestion "
"Hi
My first thought is "don't panic"! We're all a bit different, and there are many things that can be tweaked. I took to CPAP therapy like a duck to water, but I've had friends who say they can't cope, but…"
1st time and I’ve failed the mask leak test
Hi everyone, today I received my rental kit - prisma smart max, plus a Philips dreamwear mask which I’ve been wearing unconnected to try and get used to it. I just did a mask fit test using a medium mask and got a constant red/orange leak warning…See More
Are every small CPAP machines any good?
Travel sized, micro - any good?See More
"Ha well it lasted a couple of days but started howling again. But it's a step in the right direction, just needs a bit more work."
"Nope, I just accept that some people's throats tend to close when they sleep, due to a loss of muscle tone during deeper sleep. Back when I was diagnosed, the sleep lab just filmed you whilst you slept, stuck an O2 meter on your finger,…"
"Did anyone tell you exactly what the anatomical issue is, Jonathan?"
"Can't say I know about this."
"So I tore some fabric from one of the filters and glued it over the holes - and it worked!It was dead quiet, and the air was still flowing freely.It was quiet all night then after a few hours a bit of whistling until I gave it a wipe.Vast…"
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One last though Elizabeth . I have no caffine after 5pm (unbless socializing). Instead I drink camomile tea. This approach has definately helped me.
I really am going now !
Phil
HI Last comment and I will go away. Honest.
My consultant at Papworth says that sleep A is rarely an entity is its own right i.e. there are often conditions running along side it.
I have read dozens of books. The best is by my consultan Dr Schneerson, which you can get from the British Library. A heavy going medical book, most of which I do not understand, but the most informative by far. He has three hundred publications.
Phil Earl
Hi again
Also, I bought a belt with inflatable bags in the back to stop me sleeping on my back when I am somewhere where I cannot use CPAP. I also bought a sleep apnea pillow from Resmed to help reduce air leaks and a tempur pillow to keep my neck aligned.
I will leave you in peace now. The last thing you want is these sort of emails on a Sunday, but I know how confusing it can all be.
Phil
Hi Elizabeth.
I have a Remsatar M series contant pressure and from what I have read would not want a non constant pressure machine. I have tried three Resmed masks and prefer the full face mask to nasal mask as it has less side effects to deal with. My top tips. Buy a CMF50, so you can change diet/ lifestile/ pressure settings to see what gives you the best results. Print your results off for comparisons, noting weight, if stressed, what you eat and when etc. Buy a hose lift from Kath. Makes a massive difference in trying to sleep and reduces some air leaks as the hose does not drag over the bed. Hospital checks are to far apart. Use 'OUCH' sainsbury's microporous tape if your mask rubs your nose. Better than anything else I have tried, including special hospital plasters and comes off easily. The CPAP spray, wipes and face cream hope to sleep sell work well. Go to bed and get up same times. Buy a daylight alarm clock.
Hope this helps. Anything else you want to know please ask.
Good luck
Phil
Suffolk
Hi Elizabeth,
I actualy live in Gosfield which is near suffolk.
Where do you live in suffolk?
Regards Joe
Hi Elizabeth and nice that you've joined us on here, especially as you use the Nippy Ventilator, as hopefully you'll be a good source of help to others on the same treatment. Hope you'll find the forum to be beneficial for yourself too :)
Best Wishes
Kath