Non evasive ventilation

[LesleyJ]

My Mambwas diagnosed with bulbar at the end of November. She seems to be getting worse very quickly. We had an appointment yesterday and the consultant has arranged for Non Evasive Ventilation which is coming on Friday. Her breathing isn’t good so hoping this will help. Any experience or advice about this would be fab. Thanks

[LesleyJ]

That should say ‘my Mam was’ - lol

[Lynne K]

Hi Lesley. Sorry about your mum's diagnosis. Bulbar MND is horrid. If you need to talk to anybody the MNDA phone people are great. I don't know their Christmas work shedule but worth a call. They're details can be found on this site.

I hope that your mum's non invasive ventilation helps her sufficiently.

Take care, Lynne

[LesleyJ]

Thanks Lynne, it’s still all very new to us so might give them a call x (non invasive? Apologies for my daft error lol)

[Ellie]

Hi Lesley,

(It's called Non Invasive Ventilation, NIV, for which you'll see many references. Unfortunately the search function needs a minimum of 4 letters, but you can search for 'Nippy' and 'BiPAP' and find lots of info)

Your mam should find using NIV helpful. The most popular brand is Nippy, which will be set up for her breathing needs, so it's a 'plug in & play' machine.

Getting the mask right is key, so if she doesn't get on with the first mask, there are plenty more to try! Sometimes the machine settings need to be tweaked too, not by you you'll be happy to hear!

Usually NIV is initially used overnight and later, during the day, if needed. But it can be strange getting used to it, so perhaps she can wear it watching her soaps on TV or other relaxing times, just for an hour or so.

Many of us, including me, use it so there'll be plenty of help on the Forum for you both. And take a look at this website, maybe with your mam after you look at it? https://niv.mymnd.org.uk/

Love Ellie.

[LesleyJ]

Ellie thank you so much. I have seen references to this but didn’t know what they meant. We need next Friday to come quickly, she is so tired and breathless with headaches in the morning. x

[Ellie]

Her headaches should go using the machine Lesley and it should boost her energy/appetite/resolve.

Whilst waiting for Friday, if your mam doesn't have a profiling/hospital bed, she may find it better to sleep slightly propped up with a few pillows.

If she doesn't have such a bed, it's worth asking her community nurse for one - yes, I know it's yet more 'stuff', but it's one good thing to have! (it makes my life easier, for sure)

Love Ellie.

[LesleyJ]

Mam has just had a slight panic attack because she couldn’t get her breath. Our normal breathing exercises together didn’t work at first. She appears to have a blocked nose so was struggling to breathe through her nose. any suggestions for a blocked nose? Decongestant? Olbas oil? Vicks?

[Ellie]

It's usually a combo of things to clear a blocked nose. I use saline spray from the pharmacy, rolled up kitchen roll (to get wet and dry snot out), a decongestant and a nebuliser.

If I use Vicks or similar, it catches my breath and sets me coughing.

If she has another panic attack, it's best to stay calm (hard though that is in the moment!), give your mam space, open a window to give a waft of air (calming) and sit her up if laying down.

There is a 'Just in Case' kit available on prescription for panic attacks due to breathing, which contains meds to relax the person. If you want to discuss it with her GP, here is the info for the GP https://static.mndassociation.org/ap...et-for-gps.pdf

Love Ellie.

[LesleyJ]

Thank you Ellie, I was hoping you would respond. Think I am going to rely on toys bit. She has calmed now so will try your nose tips.

[Hayls]

I had a very similar problem, sudefed nose unblocker nasal spray works very quickly to keep it clear which was a life saver for me, hope it works for her

[LesleyJ]

Thanks Hayls

[Ellie]

Hi Lesley,

I wonder how your mother is getting on with her NIV?

Love Ellie.

[LesleyJ]

Hi Ellie, how kind of you to ask. She is doing ok, she has a sore nose and it hurts the back of her head but I have added a think strip of cotton wool stuck on with Vaseline. her breathing is deteriorating and she had a very bad panic attack last night and I had to ring 999 as she couldn’t breathe. She has a prescription for some lorazepam that she is to put under her tongue when she has an attack but I cannot find a pharmacy that stocks them (I think I could do with one!). The nippy is good so hopefully things will improve. I hope you are ok Ellie and thanks again x

[Ellie]

The DIY solution of a cotton pad and Vaseline sounds good Lesley, if your mam's skin tolerates it and it doesn't cause air leaks. It's best not to let the Vaseline touch the mask rubber or it'll degenerate.

Her community nurse should be able to provide dressings for her sore nose, if needed - something like Comfeel Plus are good for healing already broken skin, or Duoderm Thins/Extra Thins for cushioning.

Is the strap bulky or crossed over at the back of her head or too tight, I wonder. They are usually comfortable, so your mam may need to just try different strap size or type?

She is lucky to have you!

Love Ellie.