Yes it does help; hair doesn't get tangled but I put mine in a high ponytail anyway; I cover the light up on mine with a book; it's fine getting up to loo;02 easy to connect & disconnect;I've just got a new 1+ it's not as heavy;it's not noisy like 02 concentrater;no,don't get electricity refund.You'd prob need to be an in patient for a couple of nights initially. Usually see ventilation team ea 6mths,sometimes more
Hi! Yes, I don't think I would be here without it. I have come down from constant O2 to ambulatory only. I don't use O2 at night anymore either. When I did, it was fed through an inlet to the machine, so not difficul to pop to the loo!
Mine is extremely light and I have a carry case for it, for if I go away or when I go for check ups (every 6 months) where mine gets a service too. I find it very quiet and mine gives off no light. As Pat has said, a high ponytail deals with hair, but I would say it's worth persevering with the masks. I had a real steroid "moon face" when I started, but have a thinner face now and I am finding it more tricky to find a mask that fits.
Well worth any disruption, in my opinion. My specialist has mentioned to me that some people are prescribed these and just don't bother with them!! I cannot understand why anyone would not take up an offer of better quality of life!
All the best with it, please ask if you need more help 😘 xx
Yes they're a life saver Leo60.ive type 2 respiratory failure & have used it for many years.my new one even has a carry handle.i use in day whn tired too.the masks are available in various sizes leo- could you try a smaller one? Mine is very comfy - it goes under nose and over mouth.i find it better thn full ones which irritated my sinuses x
Yes, I have type 2 also. I haven’t had to use mine during the day yet, but have been told that if I’m feeling below par to have a couple of hours snooze with it!
I am in the process of trying different masks, but you have reminded me that I have one like yours which they gave me for after my cataracts were done 🙄 I will give that one another try! Thank you!
Definitely a lot to take in when you are first confronted with it all! Xx
Changed my life. Took some getting used to at first because I found masks uncomfortable but niw I've found a nasal only mask it's great. I take it wherever I go. I only need it at night or when sleeping but wake feeling well ventilated ready for the day. Its not noisy or bright and simple to use. Can be a bit daunting to get used to but stick with it, I've never felt better. I've had it fir 10 years. Good luck
I have a V-PAP which connects to my concentrator for night time use.
It makes no noise. It gives off no light. It’s not heavy. No refund for electricity.
I now wake up feeling more refreshed. I no longer fall asleep in the afternoons.
If I need the loo in the night, I turn off the ventilator, take off the mask, go to the loo, put the mask back on and turn the ventilator back on. It makes no difference to the readings.
My mask slips at times and makes farting noises! It’s a small size so not sure what to do. The straps don’t get tangled in my hair, but I hoick my hair out over the straps at the side.
I have been back to the hospital once for an overnight sleep study in 2022; I started using the ventilator in 2021. I have 6 monthly phone consultations.
I’ve been using BiLevel for 8 years, I was diagnosed with Type II Respiratory Failure in March 2017 caused by Scoliosis, which stops my lungs functioning properly and affecting the gas exchange in my lungs, so I retain CO2.
When I was first admitted to hospital I was put on Oxygen 24/7, I was also told I would probably have to use a BiLevel NIV for the rest of my life, I used it most nights when I was in hospital, but when I went home after 10 days I was just sent home on Oxygen 24/7 which was okay, but because I was also a CO2 retainer I could only use Oxygen on 1 litre flow rate at rest, going up to 2 litres for walking and because of this I couldn’t really do any exercise.
I was eventually given a BiLevel NIV for home in January 2018, after being admitted back to hospital on New Years Day 2018 suffering from Pneumonia, I was first admitted to the HDU for 2 days then to the Respiratory Unit, where I was put back on BiLevel at bedtime and after 5 days I was given my own BiLevel NIV and discharged home and I can honestly say I haven’t looked back since then I have completed a 8 week of Pulmonary Rehabilitation and within a couple of months my oxygen use went down to 15 hours a day including 8 hours at bedtime, after about another 12 months I was just using Oxygen ambulatory for walking and exercise and 8 hours at bedtime with my BiLevel NIV and then 18 months ago I came off my Oxygen at bedtime, I now only use my BiLevel NIV at bedtime and couple of hours in the afternoon whilst on my PC.
Your BiPAP will be a bit daunting at first, but once you get the right mask and get used to wearing the mask it becomes second nature putting it on, the BiPAP is fairly quiet compared your Oxygen Concentrator, since I have stopped using Oxygen with my BiLevel NIV I don’t even notice my NIV being on noise wise.
My NIV doesn’t really give off any light at bedtime, the screen comes on when you first start the machine, but goes off after a few minutes,
The Machine is quite light to carry around, I only really need to carry it around for travelling and it comes with a carrying case.
Unfortunately you don’t get any energy costs reimbursement for your BiPAP, which I do find strange because you do for your Oxygen Concentrator and they’re both needed for your medical needs.
The mask shouldn’t really mark your face, unless you really over tighten it, you can get a moisturiser for your mask from here hope2sleep.co.uk/cpap-moist... you have to be careful about what moisturiser you use because of your mask, you can’t use anything containing alcohol because it will affect your mask cushion.
You can’t quite easily disconnect your mask from the machine to go to the Toilet, I would advise you to not completely remove your mask, just disconnect it from the tube, otherwise you will have adjust it all again to get a good seal.
It shouldn’t really matter about removing your Oxygen, this is normally connected through the bottom of your BiPAP tube.
Since I was put on BiLevel in January 2018, I have only been to clinic about 4 or 5 times once after 3 months to see my NIV Consultant and a follow up about a year later, in between them times I had about 3 appointments to see a Respiratory Physiotherapist to see I was coping with my mask and to offer me new masks, but I haven’t seen anyone since September 2019 just before the Pandemic, I now have yearly Video Appointments with my NIV Consultant, I also go to the hospital about every 6 months to pick up masks and machine supplies in person.
Good luck Difficul, your BiPAP will change your life for the better if you give it a chance, perceiver and get used to it.
thank you everyone! I have just started with a v-pap 2 days ago which I was given on a home visit from the sleep clinic. I have spent time practicing putting it on and off, with just the oxygen running through and then turning the machine on (very small, comes with a bag)
I did 1/2 hour first night and 2 hours last night. It feels very strange almost as if it is re-teaching my body how to breathe but I will get used to it. I could even say I feel slightly better today.
Thank you so much for all these kind and very helpful replies. I am much encouraged to take on the 60 mile round trip to my nearest clinic. I have one more question at this stage - do you have to sleep on your back?
No, I’m a side sleeper and in fact if you sleep on your back your more likely to snore, I’m not saying you can’t sleep on your Back, I probably do part of the night, but generally I side sleep.
I’m in a similar situation to you with regards to your clinic, when I was originally admitted to hospital with Type II Respiratory Failure it was my local hospital Arrowe Park on the Wirral, which is only about 3 miles away, but when they said I needed to go on BiLevel NIV their Respiratory Unit didn’t supply them for patients to take home they only supply CPAP machines, the hospital I’m under for my BiLevel is about 20 miles away in Liverpool when I used to go for outpatient appointments I had to go by Ambulance because the appointments were always early to mid morning, so there was no way of getting there by public transport or taxi.
I guess it is because BiPAP is quite rare. I had this with another ailment that had to be treated in Leicester (30 miles away) with an operation in Nottingham (60 miles away) because the major hospital in Northamptonshire where I live (20 miles away) did not deal with that particular issue. My husband did most of the driving then though I did use the ambulance service a bit. I'm sort of surprised you could get hospital transport for a BiPAP appointment and also that you have been unable to get a later in the day appointment time. Most of the time, fortunately I can arrange to use outpatient services at my local cottage hospital (4 miles) away but I still have occasional checkups in Leicestershire. Even with the Inogen, exploring a different hospital will be a challenge for me and I'd rather not have had to ask my husband to drive into Leicester again, especially if it may become a regular thing. For a start, he's 6 years older now.
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Told need oxygen - please help
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