Nippy and sleep. Masks. Any tips?

[Ellie]

Hi Pink,

For most people, the greatest benefit in using a BiPAP / Nippy machine is to be had whilst sleeping, as O2 levels tend to decrease when lying down and CO2 levels can increase if the breathing muscles are not strong. The BiPAP lessens the load on your breathing muscles, so even if you don't "feel any benefit" from using it, your muscles do benefit from it.

It's shameful that your consultant is negative towards the BiPAP and advised you to use it until it became intolerable A mask, any accessory, nor the machine settings should ever be intolerable - there are numerous variables which can make using a BiPAP machine a comfortable and positive experience.

... gone down from 29% to 26% ... I don't know what the numbers mean...

An FVC of 26% means that for a given gender, height, weight and age, you are at 26% of predicted outcome with respect to a healthy peer.
BUT... a poor lip seal can affect the test (that applies to most of us) and the SNIP test is seen as a better test, which many clinics now do, rather than the "blow test". They are just numbers - meaningless on a day-to-day basis - what is important is managing your symptoms to allow you live the best life possible.

(FWIW, my last FVC was also 26%, that was over 4 years ago)

Love Ellie.

[Terry]

Great instructions, normally they say use it over night but it's a good idea to try to get used to it for a couple of hours during the day time first.

They do seem rather vague about the whole thing.

Love Terry

[Pinkelle]

I don't know those terry. I was given the nippy about 8 months ago now but didn't feel any benefit from it. I will use it now as I feel it could help. The consultant said just persevere and take it off when it becomes intolerable. He said I will probably get used to it in time.

[Terry]

Hi Pinkelle;

What did the nurse say about using the Nippy?

Do you know what your blood day time CO2 and oxygen level were and also your over night oxygen levels?

I can't blow much to order but I can at other times and I have the ability to do a good cough.

Love Terry

[Pinkelle]

Hi. I went to mnd clinic yesterday. Did the blow into the tube test and its gone down from 29% to 26% the nurse said that's a fair bit since last time (4 months) I have noticed in the last couple of weeks it's a slight effort taking a deep breath. I don't know what the numbers mean. What is normal? I've been given a nippy machine but only been using it sporadically in the day time.

[Ali_Chris]

Good to hear Chris. They're good masks.

I'm all for getting and using "stuff" to improve my quality of life!! Whatever's on offer, I gratefully accept

Ellie.

Same here. And BOGOF

Got my PEG assessment tomorrow and I will have that as well

[Barry52]

That's great news Chris. It just goes to prove that one aid can improve 2 functions, in your case breathing and eating. Pleased you have also found new energy.

Best wishes,
Barry

[Ellie]

Good to hear Chris. They're good masks.

I'm all for getting and using "stuff" to improve my quality of life!! Whatever's on offer, I gratefully accept

Ellie.

[Terry]

Well do Chris;

It's best to start with a low expectation and build it up. Ellie always says it makes so much difference and it is nice to know that it has worked out so quickly for you.

Love Terry

[Ali_Chris]

Thank you all for your responses. And I wanted to give you an update on how I got on.

Nearly 2 weeks ago I got issued a Nippy 3+ and Amara View mask. I started out just an hour at a time and quickly worked up (over a few days) to having it on all night. From around 10:00 PM until around 5 AM the next day some 7 hours.

This NIV has transformed my life. I had low appetite and I was very tired at the end of the day. I am now actually hungry at dinner time and can my meal with ease. I am not nodding off at 7PM in the evening and can make it all the way to bed time.

So for me its a positive change and I am glad I have it now.

[Jobowray]

Hi my husband uses a mask that covers his nose and mouth. We also have to use a chin strap as he naturaly sleeps with his mouth open. As for getting used to it, mick has been using it throughout the night for a year now and we still often have nights when he cant stand it on so i take it off for him. The benefits of him using it have been massive. He had no appetite at all due to not exchanging his gases and had gone from 12 stone to 7.5 stone. He was experiencing hallucinations when awake and having terrible nightmares his voice had nearly gone. He didnt sleep properly and throughout the day would drift in and out and suffered terrible headaches. Since using the mask he has gone up to 9 stone, regained his appetite his voice is nearly back to normal and the hallucinations have stopped. If he doesnt manage a full night on it he suffers the next day so if you can possibly get used to using it. It is well worth it. I know that if my husband stopped using it he wouldnt be long on this planet.
Thanks
Jo

Hi Ali and Chris,

You might find this website helpful http://niv.mymnd.org.uk It has some people talking about their experiences of using NIPPY (often also called NIV).

The MNDA also have a helpful few leaflets on Breathing problems, breathing support and tips and hints:
http://www.mndassociation.org/wp-con...g-problems.pdf
http://www.mndassociation.org/wp-con...ne-disease.pdf
http://www.mndassociation.org/wp-con...ng-for-niv.pdf

Hi Ali and Chris.
My Trevor had very bad problems with drooling from very early on in his MND journey. Unfortunately we never did manage to find a solution for that that suited him for one reason or another. I think I he tried everything!
This meant that when he used a Nippy the full face mask was not successful for him as saliva collected in it. The nose mask was much better, with tissues under his chin.
As for my sleep ... I found the gentle rhythm of the Nippy quite soothing. I found that I tended to breath in sync with Trevor and dropped off easily. I was only disturbed if he woke to need the loo or something but the Nippy itself caused me no strife at all. It was good to feel that he was having some intervention that seemed to help him despite the fact that he couldn't manage full nights with it.
We did find that he needed a humidifier along with the Nippy. I think that's often the case.
I do wish you well. It's do good to see a couple both using the forum. We did too but in fact we caused a good bit of amusement from time to time when we were having communication problems so some friction. We were "in it together" but despite this MND did test us. Don't worry if this ever happened to you. It's nice if it doesn't but not surprising if it does.
May the good times out weigh the other bits. All the very best to you, Nettie

Hi Calum,
I can't believe you waited so long for a nippy while you struggling.
I'm not sure if I could use a nasal mask because my nose always feels blocked and I breath with my mouth open?
I bought a finger oximeter, to keep an eye on it, it seems to be 91 or 92
Mags xx

[Calum]

Hi guys,

My first sleep study pre-NIV was oxygen dipping down as low as 65% and CO2 levels of as high as 9.5 - i had been living with these levels for a few months before eventually getting access to a Nippy. To keep an eye on my oxygen levels i use a basic oximeter:

https://www.amazon.co.uk/Oximeter-Di...eter+fingertip.

In terms of a good mask to start with - i'm currently using a Philips Dreamwear mask at night and i am finding it the best I've come across:

http://www.eu-pap.co.uk/dreamwear-fi...2qYaAjDj8P8HAQ

Another tip from my perspective is to use as light weight tubing as possible as this will limit the drag on your mask - the best tubing i've come across is;

https://mysleep.resmed.com/GB/en/Sle...imLine/p/36810