Too much Saliva

[Stonehengeman]

I was diagnosed with Progressive Bulbar Palsy in Jan 2018. I had a RIG inserted in Aug 2018, but I haven't used it other than water. My biggest problem is that I have excess Saliva. I am advised that I don't produce more than a normal person, but it is my inability to swallow. I can still swallow thickened drinks and puréed meals.
In-between feeding/drinking excess saliva collects in my mouth. I carry around a jamjar so that I can spit excess into. I have tried all the quick ways eg patches, Atropine, Botox or its equivalent but none of them are successful.
Now it is suggested that I have Radiological treatment try to reduce or destroy the saliva glands. I have four of these ( I am given Botox or its equivalent into four glands).
Has anyone had this treatment and if so to how many glands? Then please "Was it successful?" There is a danger with the treatment of my mouth drying out and then have to keep it moist with a cotton bud style foam top which can be used to moisten my mouth.

[Ellie]

Stonehengeman Gosh, you're having a tough time with saliva, aren't you 😪

I know that matthew55 had RT to reduce his saliva output but no idea on how many glands, so hopefully he will reply and let you know.

He still uses glycopyrronium to reduce saliva, I know that much. xx

[John D]

Stonehengeman I had radiotherapy about 2 years ago. It worked well for several months until my lip muscles weakened so I couldn’t make a tight seal. Saliva started to escape again but would like to think it would be much worse if I hadn’t had radiotherapy which was done at local centre of excellence cancer clinic.

Assume you know what’s involved eg being fitted with a mask and 5 consecutive days of zapping but let me know if you want more detail. No doubt consultant will explain which glands will be zapped and whether to stop Botox which as you probably know, only lasts a few months and has to be repeated.

Using Hyoscine patches and ironically, now considering Botox after discussion with my palliative consultant at King’s.

Hope you find a satisfactory solution.

[Ellie]

John D Did you get both sets of glands zapped John?

🤞🤞 for Botox working, if you go ahead with it. xx

[Hakuna]

I also have Bulbar Palsy ALS, diagnosed September 2021. I had a PEG fitted December 2021 and use for all feeds and water. I am still drinking thickened drinks. I find that saliva increases dramatically after drinking and is very thick at the back of my mouth but constantly dribbling as lips very weak. I take Glycoperonium but it only makes my throat dry which makes me cough. I wondered if Botox in the lips might help get a better seal. I shall be interested to hear what is suggested and whether it works. It is a big problem and very unpleasant.

[John D]

Ellie “targeting both submandibular glands and at least half of the parotid glands on both sides. These are the major salivary glands” according to my Clinical Oncologist consultant’s letter.

[Ellie]

John D Thanks John, they're the ones 👍 Radiotherapy obviously doesn't completely stop saliva production, which puts many potential candidates off the procedure, but it lessens the output?

Given you previously had RT, does that mean if you proceed with the Botox, a more conservative dose will be injected [into the parotid and submandibular glands], at least initially? xx

[John D]

Ellie As I’m sure you know, RT permanently reduces amount of saliva but not completely whereas Botox is temporary. I am waiting for a referral appointment from Kings for an initial assessment for Botox so don’t know yet how they will approach it.

Will just mention even though I use Biotene gel before going to bed, I get a dry mouth at night as I did before RT but not during the day.

[matthew55]

Radiotherapy is not permanent as advertised.

[Stonehengeman]

Thank you Ellie for responding. You are such a wonderful lady responding to almost everyone who contacts Forum. You do not deserve the awful disease that affects you. I feel for you as my only affect has been to swallowing, speaking and saliva. In some ways I am fortunate but who knows I may go downhill in the future. I have also tried glycopyrronium but without any benefit. I had Botox in the four glands (Thank you John D for the names of the glands) over a year ago and that was quite effective, but Botox is not now available and the alternative I have had is not effective (how does one measure effectiveness?).

[Stonehengeman]

Thank you John D for your reply. I have no idea of what is involved with RT, so could you let me have more details. I have not discussed it in any depth with my Neurologist, the only other solution he has mentioned is where the District Nurse has to come daily and give me an injection, but you can imagine that does not appeal to me.
I am not sure whether you can contact me direct if I put my email on here. Perhaps that is not allowed

[Stonehengeman]

Thank you Matthew55 for your response but I do not understand your comment that "Radiotherapy is not permanent as advertised". Can you please elucidate?

[Stonehengeman]

Thank you Hakuna for your response. As I have said earlier I am fortunate in some ways. After reading all your posts I appreciate my fortune all the more.

[Ellie]

Stonehengeman You are very kind, thank you, but everybody's woes are relevant and relative, difficult to bear.

Botox is not now available and the alternative I have had is not effective.

Oh, I wonder why it's not available? Perhaps there is a supply issue in the UK, or England (?), shortage of Botox (Botulinum toxin type A) - do you know what you were injected with instead?

Really hope RT is the solution to your issue. xx

[Ellie]

John D Sorry to keep badgering you! But... you've obvs spoken with King's recently enough - was there any mention of (the right type of) Botox perhaps not being available? Thanks. xx