PSP Association

Medication advice

Hi all you fantastic people on the group. Mum's anxiety along with constant howling/screaming is becoming unbearable😢 when asking her what's wrong ( we are worried she is in pain or something) she always replies 'nothing ' I'm sure it's involuntary and she can't help it but it's very difficult to deal with. Seeing the GP next week but just wondered if anyone can advise on something she could take to calm her down. Thank you ❤

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Is she taking an anti-anxiety medication? Or anti-depressant? In terms of medications, those would be the first steps. A super heavy-duty medication is quetiapine, an antipsychotic. There is a black-box warning about this medication in the US. But some have reported that the medication solved the screaming.

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Dear Careen,

I hope your Mom's doctor will prescribe something strong and effective to calm her as Robin suggests. How can you be a constant carer with non-stop howling and screaming? God bless you, but that would have me running to the nearest care facility begging them to take her!! YOU will need an anti-psychotic..

Good luck - please keep us posted: you need some relief. Hugs to you ❤

Anne G

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Hi '

My wife was diagnosed with PSP 2/2011 . We had exactly the same problem. we even had to stop the grand children from staying as the wailing/howling/crying was frightening and very upsetting even for me.It would fill the whole house. It was so bad that she was initially sent to a psychiatrist and misdiagnosed with a form of Post traumatic stress disorder (2009)

It took a while but the Doctors finally supressed it with Amitriptyline 150mg per day and Duloxetine 60mg per day. This is a high level of these drugs but it was not until she got to this level that this extreme emotionality was overcome. She has been at this level for some years now. We have tried to cut back but the emotionality just breaks through again.

I have obviously been close to this illness for 7 years and I have not come across another PSP sufferer where symptoms like you describe have been reported. I was beginning to think my wife was unique. You have my considerable sympathy. PSP is bad enough without that little add on!!!

I hope your GP can sort it out. Ours referred my wife to the Neurologist who recommended the drugs and the doses to the GP.

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There is a daughter dealing with the same thing on Facebook - so sorry for you😬

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Another suggestion is Lamotrigine. My hubby is on Amantidine and Lamotrigine. this was because of Behavioral changes that were quite challenging, thankfully for us, he never screamed as you described. Feeling for you both. Take care

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I can empathize with you but do not know any solution.My late husband with PSP did not scream or howl,but his breathing was so loud you could hear it throughout the house.More like a loud groan than breathing.It caused me much anxiety and I could not get away from it as I had to stay close by to care for him.I am wishing the best for you and hope you can find something to help the situation.

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Hi Careenh

I'm sorry you are having to deal with this it must be gruelling.

A good first step might be to try one of the first tier anxiolytics referred to as SSRI's. They are not a 'heavy drug' and they don't often have much in the way of side effects.

I would say about Quetiapine: It used to be popular in Elderly Psychiatry. It is very effective at calming people. However is is very much a last resort. It often causes too much sedation and those I have worked with who have been on it say it is very deadening. Like seeing the world through a thick sheet of glass. An artist I knew who was on it said that his paintings were dead, the medication had flattened him too much. For me it would be medication of last resort.

Another route might be benzodiazepines. You might know some of them with names like Valium ' Diazepam. Our neurologist suggested Clonazepam because of its long half life - about 36 hours. They do create a dependency and often cause drowsiness.

Of course as with all of these things - Discuss with doctor.

Wishing you the best with this,

Kevin

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What helps my husband is soft music. Perhaps you can try that for your Mum. My husband seems relax and calm down listening to it.

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