Page 1 of 3 123 LastLast
Results 1 to 10 of 28

Thread: Non Invasive Ventillation

  1. #1
    Pepper
    Guest

    Non Invasive Ventillation

    Hi Everyone,

    I was wondering if anyone is using a BiPAP machine. My husband has been given one to use at night as his CO2 levels while normal during the day are creeping up at night. I know it can take 3 or 4 nights to get used to it however he can't seem to get past one or two hours with it on. His arms and hands are very weak now so I fit the mask and get the machine going. I thought this might make him a bit anxious, not being able to remove it when he wanted to however it seems that it is more to do with a dry mouth. Colin has bulbar symptoms as well so is wearing a full face mask. The respiratory team have advised that they have a humidifier which can attach to the machine which may help and hopefully they will get back to us about that next week.

    In the meantime we wondered if anyone had any pearls of wisdom they could offer.??? His chest has also been a bit sore after using the BiPAP which we think is due to the work out his chest muscles are now getting however he wondered if this will pass or if it is just something else to put up with!

    If anyone has any experiences they can share it would be fab.

    Irene x

  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    8,067
    Hi Irene;

    No experiences but if you put "humidifier" in the Search box in the top right corner of this page and you will come upon some very useful threads on the subject.

    Regards Terry

  3. #3
    AP1978
    Guest
    Hi Irene. Mum had the bipap with the humidifier. Took her a while to get used to but it became part of her routine very quickly and she didn't mind it then . Mum had the nasal mask with the chin strap to hold her mouth closed but it did at times make her nose and mouth dry, never complained about the chest though, everyone is very different though. I don't really have any tips to give apart from has he tried the synthetic mouth spray? it can help the dryness in the mouth. We used to wet mums mouth quite often with swabs soaked with water. She couldnt win though, it would be dry at night and uncontrollable in the day! I hope he feels more comfortable with it soon. Annette x

  4. #4
    pete
    Guest
    Hi pepper,

    Just an idea Jangobie alias Diane her hubby Ed is using NIV ,I am certain if she knows about humidifiers she will reply to you, alternative you could send her a PM ,very nice person,, certain if she can offer advice she will.

    Regards
    Pete

  5. #5
    magic
    Guest
    Peter is dependant on NIV. Not bulbar, ALS. It took a good while for him to get used to it. We built his tolerance up slowly but he was able to remove it. He did try a humidifier but did not tolerate it. Just a thought Irene, could he operate a signal/ alarm that he could activate when he needed help to stop the equipment?

    Magic

  6. #6
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Location
    Newark on Trent
    Posts
    2,450
    Hi all,
    Not sure if everyone is aware of a current clinical trial taking place nationwide but if you click on the link you will see details of the study. Whilst they are not accepting new patients it does give hope in the future for those with breathing difficulties. Take care all.
    Barry
    http://sitran.dept.shef.ac.uk/clinical%20studies.htm

  7. #7
    DaiTheDragon
    Guest
    I have been on NIV at night since I was diagnosed 6 months ago. I seemed to get used to it straight away. It did take me a while to find the right mask though.
    I seem to to have trained myself to breath though my nose while I am sleeping and that prevents dry mouth but if I breath through my mouth it can gat very uncomfortable. I was going to try a humidifier but some times I dribble in my sleep and the cold air being pumped in makes the water very cold and not very nice.

    David

  8. #8
    Jangobie
    Guest
    Hi Irene, Ed has been on NIV since he was diagnosed 18 months ago. You definitely need a humidifier that will help but nothing actually cures it. Like David Ed got used to it literally overnight he had to as his breathing was so bad. Ed is ALS not Bulbar and as Pete says they are all so individual. To help with dry mouth Ed has used Biotene which is in gel, toothpaste or mouthwash. What does help for Ed is Boots own dry mouth spray which is in the Toothpaste area of Boots, it is only £2.55. He regularly washes his mouth out with a general mouthwash.

    Also puréed pineapple helps to clear the mouth, must be fresh though not tinned. Most of these tips I have picked up from the lovely people on here. Please pm me if you want to talk further about NIV.

    Push for the humidifier from the people who supplied the bipap machine.

    Barry have looked into the diaphragm pacing and if you are already on NIV I don't think you are eligible. We live in hope that something may be developed soon.

  9. #9
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    8,067
    Hi Irene;

    It might be worth contacting the supplier, as the pressure is often adjustable, and it might help lessen the stain on Colin's chest muscles till he gets used to it.

    Just a thought, Terry

  10. #10
    Jangobie
    Guest
    Hi Irene, Terry is dead right, Ed had his settings reset at Christmas. He had been really unwell and was struggling to wear the bipap for as long as he needed during the day. Our lovely respiratory team from St Thomas's hospital came out brought a nebuliser with them and adjusted the settings.

    Give them a call, don't worry about bothering them it does sometimes take a few goes to get the settings correct.

    Good luck. Diane
    Last edited by Jangobie; 15th February 2014 at 10:49. Reason: Spelling

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •