Hyoscine

[jzygirl]

Just a quick question is it best to have the patches or the tablets I have read the side affects of both and I'm worried that I will be doing Brian more harm then good with the patches. I did get him some tablets but they seem to make him sleepy and vague and I think he is coughing more with lack of Swollowing his spittle. Janexx

[cabbagecottage]

Hello jzgirl I don t want to put you off because everyone isn't the same . My husband seems to be particularly sensitive to a lot of medication.

He is quite bad and had been housebound and hoisted over the last three years . Has his ups a downs like everyone else . . He has been having dreadful drooling which is more or less constant and it seems to take over for him .

I am ready to still try anything to help what is there to loose lose . Yesterday the Gp

nrang me and suggested we try the Scopoderm patches . I was very apprehensive but put one on at lunchtime as time went on he became more sleepy and more by about 6 pm he couldn't talk or even suck and swallow or wake up .

I removed the patch straight away . On top of that of course his head was dropping forward a lot mor and the carers were very very very late in coming to help me get him into bed . I was pulling my hair out until they arrived at 12.15 am . For goodness sake they are here in the morning at 7.30 .

I slept downstairs with him and this morning he has managed to drink a little . I will ask them to leave him in bed and if possible come back later . I can actually manage to get him out on my own .

It's worth a try for you I am only speaking for my husband .

I have read others find it useful . Good luck

[puyella in reply to cabbagecottage]

hi casbbagepatch please try dark grape juice its only a few dollars to buy and it might work worth a try anyway nothing to lose if your husband is a diabetic check sugar content first just in case mate peter jones queensland Australia psp sufferer to and try he neck brace or something like it to keep hes head up good luck ith that mate

[cabbagecottage in reply to puyella]

I have tried grape juice pineapple juice yuo name it I have tried it , I have a neck cushion but he is short necked . The thing I have found most helpful is to tilt his chair backward for a while or give a sweet to suck . When possible to sing . They all help for a short while .

[Hidden]

Hi Jane,

My wife has been using scopoderm patches for over a year to good effect and with no serious side effects. They have enabled her to reduce and control her saliva and therefore her tendency to cough and experience breathing difficulties while trying to sleep. They have not adversely affected her ability to swallow. It is beginning to look as though we will have to increase the dose, with her doctor's advice, perhaps by augmenting her single 72 hour patch with a second patch after 48 hours.

We have found that they can leave an angry red mark for a few days which means that it not always possible to place them behind the ears as recommended. Elsewhere there is a tendency for them to move which reduces their effectiveness. A fresh patch is required.

Isn't it extraordinary how PSP sufferers can react differently to the same medication? For instance, my wife has had to come off Baclofene which is supposed to reduce spasticity in the arms but which we have found seems actually to increase it! We are still trying to find a replacement.

Best wishes to you and Brian,

Christopher.

[MOMBCD1]

I have a lot of droolimg and I lean forward because I cannot hold my head up any longer if you have any solutions for these problems let me know cabbagecottage

barbara daughtry

[e-mail]

[cabbagecottage in reply to MOMBCD1]

if I come across anything will do so . The only thing I find helpful is to keep him tilted back in his chair . it only helps a little . I know it drives him crazy . it's the only time he ever complains

[puyella in reply to MOMBCD1]

hi cabbagepatch I wonder if a neck brace would keep your husbands head up mate I think it might be worth a try peter jones queensland Australia psp sufferer

[denmob]

My husband use Hyoscine patches for a while and they worked really well except he got red patches and very very dry skin behind the ears. To reduce this we put them on for two days and left them off for a day or two, this reduced the dryness and still seemed to reduce saliva. However the neurologist suggested Atrovine .2 drops under the tongue at night. This is much much better. Less dryness of the facial skin but still reduces saliva.

Hope this helps.

Denmob

[zuzanka2 in reply to denmob]

Hello, thank you for those comments! Is that atrovine? Is this for balance? Thanks a lot

[cabbagecottage]

It seems to dry eyes and mouth up

[puyella]

hi jy girl I would give the dark grape juice a go mate its fairly cheap

and quite pleasant to drink I think it might help with hes drooling

anything is worth a shot mate just check the sugar content if your husband is a diabetic I take It myself but I know that two people are not alike with psp but give it a go you have nothing to lose and let me know how you get on will you by the way you can get it atn supermarkets or grocery stores if you are interested and also it is not drugs so thats another bonus peter jones queensland Australia

psp sufferer to\\

[puyella]

hi jsygirl I would try dark grape juice for hes drooling mate its worth a try and its not expensive you can get it at supermarkets and grocery stores and its not a medication I take it myself I know that two people are not the same with psp but I would give it a go mate peter jones queensland Australia just check the sugar content in case your husband is a diabetic I have no shares in ts dark grape juice I was put on to it quite a few years ago I to have psp

[jzygirl in reply to puyella]

Hi Peter we have had grape juice and pineapple for the last two years or more and has never been that successful for him. We think it is now time to medicate. Community matron visited yesterday and she talked me thru the pros and cons of the medication and yes the 1st couple of days we did have some strange reactions but we seem to have settled down.

It seems strange that this time two months ago he was on so many tablets 9 sinemet... 2 ropinerol plus all the high blood pressure tablets. The 1st to be stopped was the blood pressure tabs because he kept passing out due to low blood pressure. Then the parkinsons meds because they was doing so much harm. At the time the neuro stopped the meds he was unable to stand/walk or do anything for himself. He can now stand walk a few steps and we can get out useing his wheelchair. So that is the reason I'm scared of using meds on him. We have lost over 2 years due to the wrong meds. Janexx

[puyella in reply to jzygirl]

him jane im sorry the dark grape juice did not work for you or pineapple but the the way it goes its strange how things work for some of us and not for others i am glad that he has been able to stand up etc even if it is for a short while now but who knows what he will do in the future mate maybe run a marathon we must all hope my specialist has never never offered me anything only advice I am glad in a way I do not want to become a human guinea pig for the medical profession just yet not till they all learn more about this psp take care best wishes to your husband mate peter jones queensland australia psp sufferer

[daughter_Julie]

Hi there, just wanted to add my comments. My dad used these patches for some time. Initially we got our dad back, his balance was improved and he started to talk for the first time in two years. It was amazing. He was being really funny and jokey and was clearly a bit high. After a couple of weeks the really good effects wore off and we got in to a cycle of needing the patches to help dad swallow and move. When they were withdrawn (even for a day) he went terribly downhill. He developed really nasty red sores which got worse and worse eventually looking like burns. Removing them caused him to become catatonic. So it was administered via syringe driver in huge doses, but this wasn't practical either. My mum and I both think he was suffering from withdrawal symptoms when it was taken away. It was in the long term, not a good move and led to many hospitalisations., but, who knows how things would have been without.

Barnacle, my dad's hospice recommended the use of an asthma inhaler on the skin first to avoid the red marks. This did work for a while. It somehow reduced the allergic reaction which they argued wasn't the drug, but the adhesive.

Good luck all.

P.s dad also had botox in his salivary ducts towards the end. That worked amazingly well, but had serious repercussions at his death with dry mouth.

[MOMBCD1]

I did not leave the comment above

[MOMBCD1]

mor the onr above that

[laila123]

my husband on that and all he does is sleep since going on it