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Jasmin1
1st March 2015, 17:40
Hi my mum was diagnosed with bulbar MND 15 months ago, although she had the symptoms a year before.
Her carbon dioxide level is dangerously high and she should have been sleeping with the nippy 3 breathing machine for the last year, but she absolutely hates it.
She has been told that her levels are so high now that she has no other option but to use this machine.
I have got her a hospital bed with air mattress because she was sleeping downstairs in a chair.
She is still not really sleeping with the machine, she hates the mask and feels clostriphobic - anybody else suffering in the same way?

Trevorhb
1st March 2015, 17:55
Yes, it is not easy to get used to. Which mask has she got, the full face or the nasal? I found the full face difficult because I drool a lot, so use the nasal mask which just covers the nose. If necessary I hold a tissue over my mouth if I start to drool. The thing to remember is the Nippy 3, which I also use, matches your breathing rate, so if you put it on and.breathe fast, it will do the same. My advice would be to relax to start with, take your time and try and slow the breathing rate, the machine will do the same. Good luck.

Ellie
1st March 2015, 18:03
Hi Jasmin,
What about a different mask? There are nasal pillows which probably wouldn't feel claustrophobhic, although they are not suitable for everyone.
Ellie.

Jasmin1
1st March 2015, 18:03
Thank you. Mum has tried all different masks. The biggest and only problem is she just doesn't like it, she says that she just can't get off to sleep and so after a while she gives up and doesn't bother. We have all tried talking to her, my dad included. She is back to papworth tomorrow.

Ellie
1st March 2015, 18:13
It's more of a "mind over matter" issue for her? If she could just give it a chance, she'd feel the benefits.
Easier said than done!!

Trevorhb
1st March 2015, 18:59
Has your mum stayed overnight at Papworth?

Springtime
1st March 2015, 19:56
Hi Jasmin,
It's a difficult one, but a decision only your Mum can make. My husband also has high levels of carbon dioxide but he will not use a Bipap machine. This morning he had a dreadful job trying to wake up and stay awake. Again I asked him to think about using the Bipap machine and he was adamant it's still a no. I do feel for you all. X

Dabchick
1st March 2015, 20:26
I'm having the same problem with my husband. He doesn't have bulbar but his diaphragm is affected and his lung function poor. Doesn't want the Bipap, wants to sleep in the chair.....I didn't envisage these sorts of problems. :confused:

Jan
2nd March 2015, 14:35
my BiPap is causing me a problem I never envisaged, it sometimes leaks air throughout the night which get into my eyes causing them to puff up and dry out, there is never anything ever simple about this MND is there?

Springtime
2nd March 2015, 18:40
Sorry to hear that Jan, now somebody did mention Bipap leaking but I can't seem to find the thread. What sort of mask do you wear, is it the nasal pillows or the nose and mouth mask?

BlueEyesOhio
3rd March 2015, 03:33
Hi Jan,
I have had the same problem with the mask leaking air in different places. I use the nasal mask, not the nasal pillow. It's a triangle that fits over the nose. If you don't have the right size it won't seat itself right and will leak. Some use the full face mask. I don't think I'd like that one.

It took SO long and SO much aggravation to get used to using the bi-Pap. I do believe the Nippy is the same as the bi-pap. I have a lot more energy when I use it. When I don't use it I feel awful.

((((((((((((((((((hugs)))))))))))))))))))))
Lynne

Dabchick
3rd March 2015, 10:50
Hi again Jasmin, sorry it seems that many others have problems with the breathing aid - which doesn't necessarily help you or your your mother! We have just had a visit from the respiratory nurse, and like Lynne who posted above, she says my husband would have more energy and feel better if he were to use one. However, she also said "our aim is not to make life more difficult for you but to help you get the most out of what you have, and if you don't want to use the mask it is entirely up to you. All we can do is guide and offer advice". Which seem eminently sensible, and maybe you could put it in such terms to your mum. We are only at the start of what i hope (selfishly) is a long journey, if your mother is further on that journey I guess she has valid point of view however misguided it might seem to you and the doctors. Wishing you well and thinking of you. :D

Jan
3rd March 2015, 11:39
Hi Lynne and all, I have the nasal mask, tightened it up a little last night and it felt a little better, I am going to phone the nurse later and see if it would benefit more wearing it sitting up whilst I relax during the evening before I go to bed then not using it to sleep in, that way hopefully I won't get broken nights sleep and I can gain energy this way

willsandco
3rd March 2015, 11:43
let us know what she says, Jan. I use the full face one which does expel air sometimes and I tend not to use it. I am sleeping Ok without it and my breathing in the day is fine. I would wear it in the day but I cant get my glasses on the top and I cant read or watch TV or get on laptop................! Joycie xx

Jan
3rd March 2015, 11:45
Oh flip Joyce! Luckily I don't need my glasses for reading, I will let you know what they say

Trevorhb
3rd March 2015, 12:02
I think in general the nasal mask is better and it is just a matter of perseverance.

willsandco
3rd March 2015, 12:05
I am going to ask Sheffield. They may well put me one by and I will collect it on March 18th at my next clinic. x

Jan
3rd March 2015, 19:39
Could not get hold of the nurse but as I had a pre arranged appointment with the GP I asked him, he basically says whatever makes me comfortable and happy then got for it, so I shall

DaiTheDragon
3rd March 2015, 22:07
I have been sleeping with full face mask for over a year. Now I have to use BiPap 100% I now use a nasal pillow during the day so that I can wear my glasses but if I take a nap I put full face back on

David

BlueEyesOhio
4th March 2015, 02:39
Now that a good idea, David! I suppose I will have to go to the full face at some point. As I said it's worth working through the aggravations because it adds much energy and I will take all the energy I can get!

(((((((((((((((((((((((((((((((((hugs))))))))))))) )))))))))))))))))
Lynne

Seriouslypinkchick
4th March 2015, 14:48
Hi jasmin
ISorry to hear about your mum, my dad started last week with breathing and his carbon dioxide levels are rising to and has been using NIV for a just over a week they want dad to go on it all night but he hates it and only can manage a hour and 2 hours max at anyone time he says he can't wear it as night as he feels he can't cope with it, he having daily blood tests whilst he is in hospital but the levels are rising so the NIV is making no difference so they are now trying to encourage him to stay on for longer periods but 2 hours is the max he will stay on for.

I support my dad whatever he wants to do and he understands that if he doesn't use the NIV what it means.

My dad was diagnosed 25th March 2014 so not even a year and his breathing is effected he is unable to do anything now and is being peg fed but still eats puree diet for pleasure, it's so tough I know watching your loved one suffer I am just spending as much time as I can with dad as I know time is now limited xxx feel free to private message me as I feel being supported helps xxxx

All my love to you and your mum Jennie xxx

Jan
6th March 2015, 11:53
well I didn't follow through with my plan not wear the BiPap in bed, for the last two nights I seem to have got it in the right place (although I still wake with puffy eyes) and I have slept right through for 8 hours each time wearing it. I have to say it has given me some more energy first thing in a morning although I have noticed that the time I just want to sleep is getting more and more

Jasmin1
8th March 2015, 17:52
Once and she didn't like it

Jasmin1
8th March 2015, 17:58
Thank you jennie
Mum is trying her best, we have just come back from pappworth and she is trying to sleep with the machine fir at least the first 3 hours if sleep as requested by her doctor.
To me she still just hasn't got the energy to do anything. Mum hasn't got a peg at the moment, her appetite is getting worse along with her speech.
We all try to keep her mood up but I think she's just had enough - it's so hard to watch and I hate this disease x

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