nasal pillows

[Heather R]

I think I remember Ellie recommending these recently, but just can't find the post now. Now I am using my ventilator more in the day, I am having to face using it with other people, but I look pretty freaky with my over mouth and under nose mask, with a tube coming out of the top of my head. So I asked my respiratory physio about having nasal mask, she said I could try but sometimes it's difficult to keep your mouth shut. Wondered what anyone's experience of this is? Thanks x

[shelly21]

I'm interested so following. Although I don't need day niv yet I also think of how I'm perceived. Its not vanity but being a little more at ease when socialising etc x

[Hope]

I am not yet using NIV but am interested in this for when the time comes but I have trouble keeping my mouth closed now. I am not sure if that is down to being congested or another ‘symptom’. x

[shelly21]

I'm the other way Hope. I have my mouth closed all the time. On my nebuliser I have to remind myself to open my mouth. X

[Ellie]

... she said I could try but sometimes it's difficult to keep your mouth shut.

First of all Heather, you should definitely try a nasal mask (there is more than one type) and see how you get on with it.

My experience is: my jaw muscles are weak so when my head is on the pillow in bed, my mouth doesn't close meaning a nasal mask isn't an option for night use - the mask I use holds my mouth closed.

I tried them during the day when my jaw doesn't hang open that much and I could wear nasal pillows successfully, however, I didn't find it that comfortable at the time. (There are better nasal options available now)

As I said on the other post, sometimes the NIV settings are different for the day V night and it's not so 'blowy' for when a person it sat upright and/or using a nasal mask.

Hope it works out for you. xx

[Ellie]

Its not vanity but being a little more at ease when socialising etc

Let's face it... We need all the help we can get 😏 Anything which can lessen the elephant look or stop people thinking we're off on for a walk in space has to be welcomed 😉😁😘

[shelly21]

Ellie definitely 👍. X

[Ellie]

I have trouble keeping my mouth closed now. I am not sure if that is down to being congested or another ‘symptom’.

For me, it's because my jaw muscles are weak but a congested nose would do it too. xx

[Heather R]

Thanks everyone, I have asked to give it a go xx