Dry mouth

[richmond1]

My mum has late stage psp unable to mobilise, she wakes up regularly throughout the night needing a drink, she says her mouth is that dry it's painful, does anybody know if this is part of the psp, she takes Madapor

[NannaB]

That must feel awful. My husband is the opposite, dribbles so much his top is always wet in the morning. Have you checked the side effects of the drug or drugs she is on? My husband takes medication to reduce his saliva but they don't work very well for him. Everyone is different. I hope you get a solution for your poor mum.

X

[Amilazy]

Hi richmond1 my wife is also on Madapor but also on Glycoperonate. She complains of dry lips and mouth when going to bed which we counter with bioxtra gel and mouth spray. She complains of dry mouth even though drooling and choking. So I think it must be something to do with PSP blocking receptors. Looking at the possible side effects on the drug sheets, Madapor does not seem to cause dry mouth but can cause sweating so your mum may be dehydrated. May be worth discussing with your mum's GP. Best wishes Tim

[richmond1]

Thank you for your replies mum used to have excessive saliva constantly wiping her mouth cause of dribbling she still produces a fair bit of saliva during the day but not as bad as it used to be but its at night time when she's in bed her mouth becomes dry, I will try the artificial saliva

[peterjones]

HI RICMOND 1 FOR THE PAST WEEK I HAVE HAD A VERY DRY MOUTH AND MY TONGUE HAS LITERALLY STUCK TO THE ROOF OF MY MOUTH I ALSO TAKE MADOPAR I HAVE BEEN ON IT FOR ABOUT I MONTH NOW MY GP GAVE IT TO ME IN THE HOPE THAT IT MIGHT STOP SOME OF THE FALLS I HAVE BEEN HAVING NOW UP TO 59 SINCE APRIL THE 5TH MATEY BUT I DO NOT THINK ITS WORKING ON ME . MY BALANCE IS UP THE CREEK WITHOUT A

PADDLE MATE BUT NEVER MIND SORRY I CANNOT BE OF ANY HELP TO YOU MATE TELL YOUR MUM TO HANG IN THERE MATEY SEE YER BEST WISHES PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER I WAS GOING TO SUGGEST CHECKING UP ON THE INTERNET BUT I AMLASY HAS ALREADY DONE THAT FOR US AND IT SEEMS LIKE ITS NOT THE MADOPAR

[vsm0001]

I understand that some meds can cause this problem. My husband has the opposite too. Too much saliva at times that he has choked. He does get dry mouth. The dentist gave me a syringe that I fill and am able to rinse his entire mouth.

[formercarer]

Hiya,

We bought a water hydrant from "hydrate for health" it is a water container attached to the bed, with a long drinking tube and a valve which releases water when the valve is bitten. It worked well, even with thickened water.

here is a link to the company.

hydrateforhealth.co.uk/

I hope this helps.

[cabbagecottage]

Air believe even though they drool it is still call dry mouth , same with eyes . .

I use to but the mouth spray .. some people chew gum I believe , that is if they are able

[Hidden]

if your mother is in late stage I would question the taking of Madopar although, as with everything else connected to PSP, each individual sufferer is different. C took Madopar from diagnosis in March 2013 until August last year. By that time it was clearly making no difference whatsoever despite regular dosage increase. Since then he has tried taking it again on neurologist's advice but again it made no difference. I think our neurologist feels very badly about the fact that she cannot precribe anything that works so she suggested trying Madopar again. C is now more orless drug free in the day time but takes effective sleep meds at night. At least this way we know things that happen are due to the PSP and not drug-related side effects. But everyone is different and some drugs do seem to work for some people.

[richmond1 in reply to Hidden]

Thank you pattz I was talking to mum about this yesterday, she takes Madapor 5 times a day mum is also peg fed and has all medication down the peg, there has been no improvement in mums symptoms since taking the Madapor, if anything things are deteriorating she is unable to communicate or mobilise I was going to speak to the specialist nurse about decreasing the Madapor because it's one thing less for mum to have to take. We have been told that mums late stage psp xx

[Hidden]

If she is being PEG fed I would say she is definitely in late stage which makes taking Madopar even more confusing for me. C is still walking with support, eating 'wet' food and talking. The Madopar did make a difference when he first started taking it, especially in terms of helping balance. However I can honestly say he has exhibited less cognitive confusion since stopping but as each sufferer is so different what do my opinions matter. I do believe health care professionals share our neurologist's attitude of feeling they have to prescribe something whereas C and I long ago agreed that he would only take things that clearly helped him and not have any intervention that will merely prolong his far less than ideal life. He will not have a PEG fitted for example. Good luck with your doctor. I should also tell you that both times he stopped taking Madopar - and first time he was also on 1500mg per day in five doses - he has just stopped with no reduction in dosage over time and both times there haven't been any observable side effects.