Congestion

[Lizzie]

I am puzzled about the problem I’m having with my chest when I wake in the morning. I have bulbar onset, diagnosed 2 years ago. I’ve mentioned before that I’m having a lot of problems managing secretions. During the day I struggle with the secretions but my chest feels clear, but when I wake I have a horribly rattling crackling chest. I’ve never had chest problems in the past so wondered if this is a common problem with bulbar onset, and if anyone else can identify with the problem.
I was recently in the hospice and nothing new was done about it so I’m assuming it is to be expected. Has anyone else experienced this? 🤔

[matthew55]

I have difficulty breathing out in the morning. This is why I get up. I know it's because I gave up NIV. I keep hoping each night is my last. 😉😁👌🤗xx

[shelly21]

I am also bulbar onset. I find i also if flat in bed wake up a bit of a rattle. Are you on carbocisteine? My respiratory consultant put me on it. It thins down secretions on the chest. I am still able to drink water and find it helps again in thinning down secretions.

[matthew55]

I have been on Carbocisteine since day one.

[Lizzie]

Yes Shelly I am on Carbocisteine - 15mls 3x daily

[DeeH]

HUsband is on carbocisteine 2 x 375mg tablets twice a day.

Thomas finds pineapple juice and the over the counter Broncostop losenge (comes in syrup) helps with mucus, as well.

[Ellie]

Lizzie Do you sleep with your head raised?

A saline nebuliser is good for loosening secretions too and can be used in conjunction with carbocisteine but, whatever you use to loosen secretions, are you then able to cough them up or do they sit on your chest all night? If you can't cough them up, you may benefit from using a cough assist machine.

I don't think you use NIV?

Love Ellie.

[John D]

Although I have a strong cough and can cough up secretions, the Respiratory sleep/breathing team from my local hospital left a cough assist machine with me after a home visit to practise with in case I need it in the future. I do use it every day because I think it opens up the airways and helps undisturbed sleep at nights - toilet visits apart.

[Lizzie]

You’re right Ellie , I don’t use NIV. I do use a nebuliser but nothing seems to clear my chest. I have contacted my GP today and he has prescribed antibiotics today, just in case. Thankyou all for your replies.😘

[LindaB]

My cough is increasingly weak...just wondered about a cough assist machine and if people have one for any 'just in case' moments?

It's pretty scary not to be able to cough up any secretions....although (touch wood) I've managed up to now.

I've mentioned to the community hospice nurse who is discussing with respiratory hosp team.

[Doug Carpenter]

Yes, i was given one as a standby.

Doug

[LindaB]

Thanks Doug Carpenter 👍🏻

[Ellie]

LindaB It can depend on where you live as to the availability of a cough machine, sadly sometimes even for those in dire need of one.

The MNDA can help if yor area cannot. 🤞🤞😘

[LindaB]

Ellie thanks...I wondered if they were standard to those of us with weakened cough. I'll chase it up. I had one bad episode but not dire...thankfully...although everything feels worse at night when you're alone. I know poor me🎻😇😘

[Ellie]

From the MNDA website:

"MI:E is often referred to as CoughAssist. This device supports and enhances the ability of weakened inspiratory and expiratory muscles in order to improve a person’s cough and aid secretion clearance. Use of MI:E has been shown to reduce the incidence of chest infections, and furthermore reduce the likelihood of emergency hospital admissions. However, the benefits may be limited for someone who has severe bulbar impairment.

MI:E may be started once a person has experienced repeated respiratory infections. Once MI:E has been set up, people are advised to use the device on a daily basis to get maximum benefit and to prevent the onset of further respiratory infections.

MI:E is used with either a tight-fitting face mask, a mouthpiece, tracheostomy or endotracheal tube. Additionally, MI:E can be used in different modes, which helps to improve synchronisation between the patient and the machine, improves patient comfort and therefore treatment effectiveness. A respiratory specialist will be able to prescribe the exact treatment regime needed.

Training should also be provided to the person with MND and any family/carers who may operate the device. The provision or loan of MI:E machines varies from region to region and sometimes servicing and maintenance can be problematic. If problems are experienced, contact the local MND Association Area Support Coordinator (ASC) who may be able to help."