Niv

[KK64]

Hi, my husband was diagnosed on 28th May and my once full of life, funny, brilliant man is now already a shell of his former self. He has lost such a lot of weight, is unable to walk unaided and struggles to raise his arms. Very recently he has at times been unable to feed himself. It is so sad seeing him deteriorate so quickly.
He has an NIV which he uses during the night and also if he goes for a sleep after lunch. I was just wondering if anybody has the problem of the mask blowing loudly? Some nights I struggle to try stop this and have to remove it and adjust it several times. The mask is fit snug against his face.
This is so frustrating (for us both) as there have been many nights he would have slept through had it not been for this.
It is so hard seeing him struggle daily with the everyday things we take for granted without him now suffering through the night not being able to rest and get a good nights sleep.
He recently had a seizure and they suspected it was due to carbon dioxide levels, although this hasn't been confirmed yet. The respiratory nurse came out and adjusted the NIV settings and it seems to have been worse since then. The nurse said this shouldn’t have made any difference and thinks it is a positional problem.
If anybody has experienced the same and has any advice I would be very grateful.
Thank you

[LindaB]

Hi KK64 & welcome. So very sorry to hear of your husband's diagnosis and progression. I'm not able to offer advice on NIV - hoping to start that for myself in the next couple of weeks. I know you'll get lots of advice from forum members and you'll see lots of previous threads about NIV and various issues with masks and settings.
Not very helpful from me but when I read your post I had to say a hello and glad you're here to get some support. Best wishes to your husband too - 'funny and brilliant' as he is.
Take care 👍🤗

[KK64]

Thank you for your reply Linda. I will take a look through the threads.
I know there are different types of this awful disease, we haven’t been told by anybody which type my husband has.
I hope you go on ok with your NIV and it works well for you. Take care xx

[LindaB]

Thank you for your reply Linda. I will take a look through the threads.
I know there are different types of this awful disease, we haven’t been told by anybody which type my husband has.
I hope you go on ok with your NIV and it works well for you. Take care xx

Well my thoughts are the diagnosis report should definitely include 'type' and if you haven't got that then get back in touch with the consultant. So difficult to process all the information but use MNDConnect too for advice and support if you haven't already. Good luck 👍🤗

[Lynne K]

Hi Kk64, I don’t have a NIV yet so I’m sorry I cannot give any advice. But I wanted to welcome you to forums and wish you and your lovely husband good luck with sorted this out quickly. Adequately sleep is very important for both of you. Plus excuse me if I’m ‘trying to teach you to suck eggs’ as the sayings goes. Love Lynne x

[Gordan1111]

Hello KK64 . I haven't had to use a NIV yet but as Linda say there are lots of previous on here about other people experiences with them. Love to yourself and husband x

[Mary C]

Hi KK64,
I struggled with the NIV and had it adjusted remotely by Walsgrave hospital. Coventry.I also had mask replaced.I had problems at night wearing the NIV because on movement the seal loosened and got a blowing noise so hubby was constantly readjusting it.I also had coughing fits when wearing it.Then every timeI coughed I felt the need to take it off.
I got to dread going to bed as every night was so unsettled for us both.
I have stopped using it for a while and respiratory nurse will come out in 6 weeks to see if I want to try again and she will adjust settings etc.I know stopping using the NIV is likely to impact on my breathing so that’s why I am thinking I might give it another go soon.

I do know there are members on the forum who greatly benefit from it and sleep well.Maybe they will have some advise.
Good luck
Mary

[Ellie]

KK64 A warm welcome to the forum - sorry to hear about your husband.

If I may ask some questions!?
Does the issue only arise at night?
Is your husband's head elevated either by a raised head of the bed or by using extra pillows and, if it is, is his neck constricted in any way by his head position? (e.g., is his head drooping)
Does he sit in a chair for his post-lunch nap?
Does he wear a nasal mask or full face mask?

The respiratory nurse came out and adjusted the NIV settings and it seems to have been worse since then. The nurse said this shouldn’t have made any difference and thinks it is a positional problem.

Seems an odd coincidence, right 🤨😏 Have you any idea what settings the nurse changed and/or any idea what current settings are and/or any idea what previous settings were?

I'm sorry that he had a seizure, it must have been very scary for you to see... Prior to that, was he showing any common signs of CO2 retention - e.g. drowsiness, headaches, confusion, difficulty waking up?

Again, apologies for the questions, but it irks me how some respiratory specialists don't give a hoot about uncomfortable air torrents or that it's impossible to get much-needed good quality sleep.

Love Ellie.

[matthew55]

I don't use it anymore and my oxygen stats are in the 90's when I wake up. Having said that I did oversleep until 11am the other day! 🤔🤗😆🧐xx

[KK64]

Hi Ellie

its mostly at night. Hubby has hospital bed and he has it raised behind his head, also uses a V pillow so head position is ok.
After lunch for a nap if he goes, he is in the same bed, same position. His mask goes over his nose and mouth. I just dont understand it!
Im not sure what it was reset to, I think it was set at 16 before.
Apart from feeling sleepy no other signs.
Fingers crossed for a better night tonight.
Thank you for your reply
Kath xx

[KK64]

Hi Mary C
I hope your next try with the niv is more successful for you and you are able to tolerate it.
Best of luck
Kath xx

[Piglet]

Hi KK64

My husband uses NIV at night but his mask just covers his nose and has no problems with this. 77DBB4D5-C3D1-452F-9B69-CB9FD057802C.jpeg
I hope you get the right support as once you get the NIV right it really helps with the right ratio of oxygen and carbon dioxide.
Not sure if the photo is of any use. It is a very difficult time with new diagnosis and everything appears overwhelming. Don’t worry about asking all professionals with your worries until your satisfied for your husband. Take care.x

[Ellie]

KK64 Forgive my comparison, but is the noise like spluttery farts in the mask itself? 😳😳 Does it start soon after he gets into bed, falls asleep or a while after? Also, presumably his mouth doesn't change shape at night because of mouthguard or not wearing false teeth, nor does he take any meds at night which may interfere with his breathing?

If the IPAP was increased much over 16, it could be just too high for him.

Honestly, if tonight is no better, the nurse needs to address it. If your hubby's CO2 levels are that high, he needs his NIV to be comfortable. xx

[KK64]

Ellie, I was wondering if it was set too high. If tonight no better I will get onto them again tomorrow.
Thank you
Kath xx

[KK64]

Thank you everybody, much appreciated xx