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March 20, 2011 at 1:15 pm #77950Re: POLL – Non-invasive Ventilation
Thanks for the ideas. I get allergies and nasal congestion so that combined with not fancying a chin strap at the moment, so had trouble with a nasal device.
I have tried it twice in bed just for ten minutes and am working through a few things like I will have to connect up before going to bed because it’s difficult for hubs to place the head straps etc when laying down (and the main connect button is the side that is pillow down!). One thing I do find is that the bridge of the mask either goes over the corner of my eyes (the cuff does but not air which feels odd especially when I want to move my eye or blink!), and if I pull it down to a more natural position the cuff then closes off my nostrils and the lower part of the mask cuff is almost off my chin! It’s like my face needs to be longer as it fits hubby fine!! I wonder if my little pumpkin head shape needs a paed mask or something!!
So, some things to sort out! Mastering some communication and a trip to Maplins means hubs will make me a buzzer which can travel on me so I can use in other situations when I need to call my PA etc where a phone won’t do.
March 23, 2011 at 6:38 pm #77951Re: POLL – Non-invasive Ventilationcriptic
always had a problem with mask fit, a resp nurse told me once that they are primary designed for larger males.
its funny thou as ive only every meet small ladies I harrassed a rep at clinic once about the limited number of sizes.What mask do you use?
currently using puritan bennett breeze mask but Im waiting on a mask called sleepweaver. its a cloth mask that inflates itself arround your nose creating a seal. theres a cool video of it on the sleepweaver.comI normally put my headgear on just before lying down as I cant breath at all lying down without vent.
March 25, 2011 at 5:30 pm #77953Re: POLL – Non-invasive VentilationHi Cat,
have seen them before online and always wondered if they would be of any use. Not sure what they are made of?? Am going to have a look. Am having trouble with pillows at the moment.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
March 26, 2011 at 2:31 pm #77954Re: POLL – Non-invasive Ventilation@catatude wrote:
criptic
a resp nurse told me once that they are primary designed for larger males.
Yes, fit hubs great! I am using a flexifit mask – 431 (version 432 and a newer one exist).
Still can’t get it to comfortably sit on my face without holding in with my hand to find a spot that is not pressing so hard on my nose bridge which makes me feel queasy! So still fiddling with adjusting the strapping but as some reviews of the mask say, the tighter you do up the strap on your neck the more it digs in and chokes you or cuts your skin! Then my head flops on knocks it all out of place lol. So, nowhere near trying to sleep yet.
Cloth one looks interesting! Don’t you wish there was like a naidex of all things vent related aimed at users that you could go round trying out different things! Hygiene wise how that would work I don’t know but that would be cool. I’d pay for things myself if they were super useful!!
March 26, 2011 at 2:45 pm #77955Re: POLL – Non-invasive Ventilation@catatude wrote:
just doing a spot of ebay shopping.
Have any of you guys ever tried or seen a vent contour pillow.
ebay Item number: 120645023023
Hi,
I’ve seen four types and was discussing this, this morning with hubs. Have seen the one in your photo, plus this similar one which comes in two sizes and two foam types and I have a link that describes the material etc. Not sure if links can be posted on the forum but here is a piccy. I’ve always had a problem with head role and prop up the side of my head on rolled up flannels – but overnight they go flat and my head turns to the side and sinks into the pillow. Now trying the mask I find this happens much quick so I might try a shaped pillow.
March 26, 2011 at 6:34 pm #77956Re: POLL – Non-invasive VentilationDon’t you wish there was like a naidex of all things vent related aimed at users
totaly that would be ideal. try before you buy. even holding it would give an idea of fit.
with regards head gear fit. I know its tempting but try not to go too tight as this makes leaks worse. There is this cool looking comfort pad on ebay to go on the bridge of your nose ebay number 320626032779 looks like the jelly party feet you put in high heels ment to ask my vent nurse about it but forgot.
I had a mask years back, like the one you posted. I found it helpful to put a spacer under the plastic part on the forhead section. it lifted the mask a away from my face at the top of my nose. giving mask a better angle.
Did the Respiratory dept only give you the one mask to try???
March 26, 2011 at 6:37 pm #77957Re: POLL – Non-invasive VentilationI’ve seen four types and was discussing this, this morning with hubs. Have seen the one in your photo, plus this similar one which comes in two sizes and two foam types and I have a link that describes the material etc. Not sure if links can be posted on the forum but here is a piccy. I’ve always had a problem with head role and prop up the side of my head on rolled up flannels – but overnight they go flat and my head turns to the side and sinks into the pillow. Now trying the mask I find this happens much quick so I might try a shaped pillow.
Have you still got the link?. Is it a UK shop? its really the shipping from the USA that bothers me as its as much as the pillow. and the fact that it may or may not make it past customs. I tried buying a mask and velour mask straps once, and didn’t get them as they were counted as unlicensed medical supplies.
I end up either holding mask(out of habit, mostly fits now I’ve customised) or with my hand under my head all night to keep jaw inline.
also got a bed sore on my ear that just wont heal.
March 28, 2011 at 2:26 pm #77958Re: POLL – Non-invasive VentilationWell, I’m trying a link – if it gets taken off then will pop it up elsewhere.
Cushions/pillows and other BI/CPAP things for uk:
http://www.eu-pap.co.uk/March 28, 2011 at 4:11 pm #77959Re: POLL – Non-invasive VentilationI was interested in a new type of nasal pillow and had a little look to see how much it would cost – if I had been standing I think I would have fallen over
I too have to hold my mask in place sometimes, and nearly always hold the tube to stop the pull – you can tell as well, my index finger is the only finger on my left hand that extends properly because I use it at night to hold the tube.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
March 28, 2011 at 7:20 pm #77960Re: POLL – Non-invasive Ventilation– if I had been standing I think I would have fallen ove
yes they can be a little (alot) exspensive. Ive ended up on puriten benets mailing list. my head gear cost about £100 and its not all that sturdy. need about 2 a year cos I need to bend it a little to fit better they end up snaping over time.
too have to hold my mask in place sometimes, and nearly always hold the tube to stop the pull –
I got these little velcro clippy things off the nurse. (they used to come in the disposible tubing packs) velcro loops around tube and I clip it to me bed. really good with an electric adjustible bed as its a pain when I lower the pillow end and squish the tube Well I too Nearlly feel off my seat. on the eu.pap shop it cost,, wait for it, £19 to 2 little clippy things WOW
Does Mask and Head gear supply differ between health boards. My resp clinics always alright about letting me try new masks and Ive never been asked to pay :?: .
March 28, 2011 at 7:45 pm #77961Re: POLL – Non-invasive VentilationWell, I’m trying a link – if it gets taken off then will pop it up elsewhere.
Cushions/pillows and other BI/CPAP things for uk:
http://www.eu-pap.co.uk/thanks criptic
May 19, 2011 at 4:44 pm #77962Re: POLL – Non-invasive Ventilationat some point I seem to have ended up on Resmeds mailing list. got a flyer in today for one of the Patient Open Days!! Cant see anything about entry fees to event but it may interest someone.
Centre for Healthy Sleep – London
10th – 11th June 10am to 4pm
register attendance at http://www.realsleep.co.uk
Mask Care and Cleaning for demonstrations and advice
Latest ranges of masks and devices
Technical Services for device-related technical information
ResMed ‘Through the Ages’ masks and devices
SATA (The Sleep Apnoea Trust Association)May 20, 2011 at 3:23 pm #77963Re: POLL – Non-invasive VentilationThat’s interesting – I can’ t believe how there are so many mask types yet when you read from the various forums of vent users for whatever reason, the majority of people either have to hold it, stuff it, pull and poke their way through the night!
I liked my first mask because it tucked under my chin. However, the air was blowing out the nose sides and the whole thing shifting around all night. Anyway, I ended up with three pressure sores so had to add plaster and tea tree oil to the list of things to do at night. You can see some pics on my twitpic account below. I can’t tell you how sore it was.
http://twitpic.com/photos/crip_tic
So then I tried an eye mask to stop the air from blowing and drying my eyes but that was too thick and caused cheek leaks.
I tried cotton wool poked under the mask, just on my eye and taped versions – no luck.
Took apart the headgear which buckled only on the right (the side I lie so hubs struggled to clip it on and hold my head and mask at the same time). That is now on the left and I think is better but it meant actually breaking apart glued parts of the mask so it is now taped until we glue it.Anyway, then the hospital sent me a quatro mirage which was a good shape (smaller) but no chin tuck (mask rest below bottom lip) and because I can’t breathe without it on I was so tense that my jaw would drop out of the mask and I would die that I didn’t sleep much!! However, it also leaked at the cheek quite a lot – so back to the original mask I went…
Current set up consists of felt stuffing under the forehead piece and making the mask very clingy by washing it before bed – it is getting rather silly! We imagined we would just put it on a voila!! My nose seems to be permanently humped now as it all swelled up. What a to do. do any of these stay in the right place!!!
I wish I had a magic wand that let me try out loads of different types with lots of types of head gear – they are both fab sitting up but as soon as a lay down the dynamics / shapes / gravity sprung into action and caused problems.
So on we go…
May 20, 2011 at 3:51 pm #77964Re: POLL – Non-invasive Ventilationmy current mask is getting (not old) but lived in, and cause it dont fit all the great to begin with. when it gets abit lived in, it leaks and makes this really annoying farty sounds when the air excapes
Ive had the alien bumps and lumps, had one that looked lke a third eye for a time. got a cut under my nose that wont heal.
May 20, 2011 at 4:50 pm #77965Re: POLL – Non-invasive Ventilation@catatude wrote:
my current mask is getting (not old) but lived in, and cause it dont fit all the great to begin with. when it gets abit lived in, it leaks and makes this really annoying farty sounds when the air excapes
*nods* I can make quite impressive noises when that happens am always saying ‘it wasn’t me’
The only thing that has ever worked is sticky-backed towelling on the gel bit that goes round nose. However I am on the vent more at the moment and my nose is not getting much of break
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
May 23, 2011 at 2:33 pm #77966Re: POLL – Non-invasive VentilationDoes Mask and Head gear supply differ between health boards. My resp clinics always alright about letting me try new masks and Ive never been asked to pay :?: .
Well, so far I’ve been able to try two (or three if your count the nose one I had to get used to a vent sitting up). Flexifit 431 and the mirage. Both left me wondering if I should put in for a nose job. I find out that the models which are 2 above the flexifit have been improved with extra cushioning to avoid he nose dents – but are not available from my local NHS due to cost (asked today). I have also seen reviews that the nice soft bit breaks down So the only thing they can offer me now is cream basically to patch up my nose.
Did anyone get to try out a selection then? I wonder how spend on such equipment varies? I guess it’s cheaper to dish out barrels of cream and plasters than pay £100+ for a mask?
May 23, 2011 at 2:52 pm #77967Re: POLL – Non-invasive VentilationI am going for a 2-3 night stay to try out some new ventilators next month, I will make enquiries about masks and headgear available. Don’t think my nose can take much more.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
May 23, 2011 at 4:45 pm #77969Re: POLL – Non-invasive VentilationYup, I go to the Brompton. Bit of a trek, at least a two hour car drive each way but hoping it will help.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
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