Page 1 of 2 12 LastLast
Results 1 to 10 of 13

Thread: Increasing breathlessness

  1. #1
    Forum Member Julip's Avatar
    Join Date
    Aug 2017
    Posts
    28

    Increasing breathlessness

    My lovely husband was diagnosed with Bulbar onset MND 18 months ago. Symptoms began 2 years ago. He is experiencing increasing breathlessness at random time but it is worse at night. BiPAP helps a little but has no effect on Sats which are around 95 to 96%. I'm concerned that now might be the time for his just in case box of medication to be dispensed. Does this seem premature to you?

  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,214
    Hi Julip;

    I'm not experienced with these maters but Sats of 96% are good. I do get moments of breathlessness at times of light stress etc. If he is anxious about things then Lorazepan might help.

    Love Terry

  3. #3
    Forum Member MNDConnect's Avatar
    Join Date
    Mar 2016
    Location
    Northampton
    Posts
    135
    Hi Julip

    Sats of 95-96% would be considered normal and are not worryingly low. Is you husband lying flat at night or is he sitting propped up? Has he had a recent respiratory assessment? If not and he's experiencing breathlessness then it might be worth contacting his respiratory team as it may be that the settings on the BiPap need adjusting.

    It's really never too early to request a Just In Case Kit. The kit is for exactly what it says "just in case". You can have the kit in your house and never need to use it but it's there just in case you do. When someone becomes breathless it is common for them to feel panicked and this can then make it harder to breathe. Having a medication to calm someone down can be really helpful. Even if you never need to use the kit, it can be reassuring to know that it's there.

    If the kit would be helpful, speak to your husband's GP. The GP should then contact us here on 0808 802 6262. We would then send the kit to the GP so that they can prescribe the medication for the kit and then they will give it to you and explain each medication.

    Please do feel free to give us a call if you need to on 0808 802 6262 or email us at mndconnect@mndassociation.org

    Best Wishes
    Rachel
    MND Connect Adviser

  4. #4
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,653
    Hi Julia,

    Sorry to hear about Mike’s increasing breathlessness.

    (I’ll presume his lungs have been checked and are clear.)

    As Terry said, stress could be triggering the episodes. I know you say they’re random, but has he tried using his BiPAP for a while for daytime breathlessness? Sometimes eating/digesting or a change in sitting position can cause breathlessness, and even the simplest task/movement takes more exertion than you’d imagine!

    Don’t expect the BiPAP to increase Mike’s Sats, that’s not its purpose - 95-96% is perfectly acceptable - but if you don’t think anxiety is an issue at night, the BiPAP settings may need tweaking.

    Also consider his sleeping position - head raised? And mask - air leaks? Mask type - nasal, full face?

    I think it’s a good idea for everyone to have the “Just in Case” meds to hand. In Mike’s case, it sounds like an ongoing issue, rather than an emergency situation? More BiPAP hours may be needed, his Respiratory Team or maybe the MND Nurse can advise.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  5. #5
    Forum Member Julip's Avatar
    Join Date
    Aug 2017
    Posts
    28
    I'm always amazed by the quality and volume of advice I get from this forum. Thank you so much for your help xx

  6. #6
    Forum Member
    Join Date
    Nov 2017
    Posts
    145
    We have not been told about this just in case kit.

  7. #7
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Location
    England
    Posts
    348
    Hello Jaxx
    I have not been told about the kit either - first I heard about it was on this thread today. I have found this info on MNDA website (says info is for professionals but that is only info I could find)
    https://www.mndassociation.org/forpr...t-in-case-kit/

    I would have thought that the kit is something that we should have automatically be informed about at some stage (by the MND nurse or other health professional) - or maybe it is something that is left to us to enquire about if we happen to read about it on this forum/MNDA website?

    I have been thinking about your daughter, I hope she is managing OK. (I know that OK is probably the wrong word to use because MND can make every day a struggle or challenge. I just try to take one day at a time now and am doing the best I can to have a good Christmas with my family,)

    Best wishes and thinking of you all,
    Kayleigh x
    Last edited by Kayleigh; 20th December 2018 at 00:23.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  8. #8
    Forum Member Julip's Avatar
    Join Date
    Aug 2017
    Posts
    28
    I think there's a squeamishness in most health care professionals about end of life discussions. As a nurse working in the community I found it really difficult to get GP's to carry out anticipatory prescribing. They would rather wait for a crisis and react ,often poorly and frequently out-of-hours so the patient's own GP wasn't available.

  9. #9
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,653
    Hi Julia,

    Just wondering if Mike has a Palliative Care Nurse and/or is linked into a hospice service?

    I find these Nurses excellent and readily both discuss end of life care & meds with sensitivity and pragmatism.

    I recommend everyone has contact with Palliative Services and they are NOT just for end of live care, but also for those living with conditions such as MND.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  10. #10
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Location
    England
    Posts
    348
    Hi Julia and Ellie.

    Many thanks to you both for your extremely helpful advice. I had not heard of the 'Just in Case' kit before yesterday, and it sounds like it may be something that I will need to request if I want it rather than something that will automatically be offered to me. I am grateful to you both for posting about this issue because it is debatable whether I would ever have known about the kit if I had not read about it here.

    Thank you Julia for kindly sharing your experience. I will keep in mind that I am likely to have to request the kit if I want it, as I think it is unlikely that my GP is going to be pro-active in asking me if it is something that I want. I hope that your husband's breathing has improved and that he is feeling more comfortable today.

    Ellie, thank you for the really useful information about hospices. I will take your advice and contact mine.

    I hope that you both have a happy and peaceful Christmas. Love and best wishes to you and all your family.

    Kayleigh xx
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

Posting Permissions

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