Thick Mucus/Botox related?

[Martha]

Hi Folks
Can anyone help with a mucus query? Mum has bulbar palsy and has been having botox in the saliva glands every 3-4 months. It has been working quite well up until recently. She had an injection 2 weeks ago and her saliva flow is worse than ever plus her mucus is thicker than ever. She chokes a lot. She has been taking papaya and watermelon puree in addition to fortisip and calogen as we thought the papaya would help reduce the thickness of the mucus. Now we aren't sure if these are exacerbating the problem or if it might be related to the botox. Does anyone have any recommendations for meds or natural products which might assist with breaking down the mucus. She also is sick regularly as her suction machine often causes her to gag and be sick. Any advice would be much appreciated. Thank you in advance! xx

[Ellie]

Now we aren't sure if these are exacerbating the problem or if it might be related to the botox.

Sorry to hear this Martha, secretion mananagement in MNDs is one of the hardest symptoms to get under control, it's a constant balancing act...

The issue with thinning secretions, be it using meds or pineapple/papaya juice, is that all secretions are thinned, mucus and saliva.

Is she well hydrated with water? Water is also a vital component of managing secretions.

Carbocisteine is the 'go to' medicine for thinning secretions and regular use of a saline nebuliser can also help. (15mins, 2x day may give good benefit)

Love Ellie.

[matthew55]

I am unable to use a cough assist so I take 20 mil Carbocisteine five times a day. Does she use the suction machine herself? 😁🤗😊😍xx

[Martha]

Thanks v much Ellie & Matthew. Really helpful. I think actually Mum might not be getting enough water throughout the day so will try extra fluids. She did try Mucodyne a while ago which gave her severe tummy ache but i think we will try this again seeing as it's the go-to medicine. She hasn't been offered a saline nebuliser yet so will check with the MND nurse to see if she can try that. Thanks so much for replying to us. xx

[Ellie]

I think actually Mum might not be getting enough water throughout the day so will try extra fluids. She did try Mucodyne a while ago which gave her severe tummy ache but i think we will try this again seeing as it's the go-to medicine.

Ideally 1800ml+ per day, preferably 'plus', and increasing water intake is the easiest thing to try - I know your mum has a PEG. I understand getting to the bathroom can be quite the palaver, but good hydration makes such a difference to us. (I'm hoisted in and out of chairs and I know how tempting it is to restrict liquids but honestly, it's well worth it 👍👍)

I wonder if taking Lansoprazole would stop tummy ache with the Carbocisteine if she were to try it again? Lansoprazole lines the stomach but isn't suitable for everyone, but her GP will know. xx

[Martha]

Thanks Ellie. Yes Mum is already taking Lansoprazole every day, I think she just has a very sensitive tummy. We've established also during these last couple of days that her neck collar seems to exacerbate things. She is due for an appointment soon to try new collars which don't sit directly onto her throat. Thanks for the tip on water quantities...she's def. not getting enough fluids but we've increased over these last couple of days so hopefully she will see an improvement soon. Take care Ellie, thanks for your v helpful advice xx

[matthew55]

I gave up on collars and just let my head decide what's comfortable. 😉🤗😎😍xx

[Ellie]

We've established also during these last couple of days that her neck collar seems to exacerbate things.

I am the same - anything even merely touching my throat affects my not-so-great swallowing ability affecting how much saliva I can swallow.

My neck muscles are very weak, so I need a rigid cervical collar. I have one with a chin rest, meaning the actual collar part does not touch my throat because my chin rest takes the weight of my head. I've no idea if your mum would get on with it but, there are various collar types out there, hopefully she can find a suitable one 🤞🤞 xx

[John D]

My neck muscles started to weaken a month or 2 ago which I initially thought was due to my pillow. I have tried physio massage which helped a bit and I do exercises to improve range of neck movement. Hospice physio has given me 2 collars. Heads First is a soft collar that wraps around the neck and keeps my head up when walking but it does press on the throat. The other is a Vulcan Medicollar which I use when sitting watching TV. It’s rigid and doesn’t press on the throat and sounds like the one you use Ellie.

Hope I’m not confusing this thread but I have just obtained a mouthguard from my dentist to prevent grinding my teeth and biting my tongue and cheeks at night.I thought it would be less obtrusive than it is and hope it’s just a case of getting used to it. What is the experience of other mouthguard users?

[matthew55]

I wear a bottom mouth guard 24/7 I feel odd without it now 😁🤗😎😋xx

[Ellie]

Vulcan Medicollar which I use when sitting watching TV. It’s rigid and doesn’t press on the throat and sounds like the one you use Ellie.

Mine is made of rigid plastic John, with padding - it's a Thuasne Ortel C3.

What is the experience of other mouthguard users?

Mine is fairly small, slim and unobtrusive, so it's comfortable. Does yours go high up on the teeth or in what way do you think it's intrusive? xx

[Ellie]

Secretion Management and Head Position:

Incidentally, if my head is left drooping, my secretions can't drain properly and quite quickly I get snuffly and have excess saliva. When my head is in a 'normal' position, i.e. wearing my collar or when I'm in bed, the secretions drain as nature intended. 👍👍 xx

[John D]

Mine is fairly small, slim and unobtrusive, so it's comfortable. Does yours go high up on the teeth or in what way do you think it's intrusive? xx

Mine covers all my teeth in my upper jaw and I am conscious of it when I close my mouth and it makes contact with lower jaw. Hoping I get used to it over time.

[Ellie]

Mine covers all my teeth in my upper jaw and I am conscious of it when I close my mouth and it makes contact with lower jaw.

Blimey, does she/he think you're Hannibal Lecter?? 😉😍😘