Pain Poll Results

[Kevin_1]

Hi folks.

Thank you for your great responses.

It's horrid to see that many are suffering pain on top of everything else. It must be distressing for both cared for and the carers.

Please keep replying to it if you haven't yet done so - I am still gathering info.

healthunlocked.com/psp/post...

So much for the article in "Neurology" that PSP folk seldom suffer pain!

It is apparently more common with CBD because of issues with the Basal Ganglia. I will post information on that when I have finished reading up.

This is a distillation of your responses from here and elsewhere on the forum. Each has a clinical basis for treating pain:

Dopamine 'management'

Massage and physio

Minor pain killers; Paracetamol; nonsteroidal anti-inflammatory drugs (Naproxin, Aspirin, Ibuprofen.)

Anxiolytics and antidepressants.

Botulinum

Benzodiazepines

Strong pain killers opioids etc

(As well as the odd thing like Amantidine - Which treats tremors and rigidity - and the Medics aren't sure how it works - but it often does)

Baclofen pain and stiffness commonly used in the treatment of MS.

There will be more.

It's clear that what works for one person does not necessarily work so well for the next person. Additionally it appears that pain in PSP/CBD can have different causes. (More on that when I have done more reading).

Now, I am not playing Doctor here. In the same way I would not expect you to fly in a plane I had just fixed using my copy of "Fix your Airliner for Dummies".

What I am going to try and do is read up on these interventions and then try to give simple descriptions and efficacy based on research papers. Hopefully that might give us all a bit of a pain vocabulary to use in discussions with our Doctors.

It will take a week or two.

Any comments or suggestions would be most welcome.

Thanks again.

Best to you all

Kevin

[Bargiepat]

Your work is going to be so useful..........

[Kevin_1 in reply to Bargiepat]

Thank you - It also feels a little daunting.

There is such a dearth of material on Pain and PSP/CBD. PD has a lot of material on the different causes of pain and its treatment. So a lot will come from there.

[Satt2015]

Clever clever friend! ❤️ X

[Mikey12345]

Thank you so much for your time and efforts.

[Hidden]

Hello Kevin

I've noticed that PSP persons take Parkinson and was wondering if there might be a connection to pain and did a bit of reading.Why are neurologist still telling PSP person to take them? We were told that the parkinsons meds would not change or help a PSP.

Atamet, Parcopa, Sinemet, Sinemet

sweat more, urine, or saliva appears dark in color, such as red, brown, or black. This is not a harmful side effect, but it may cause staining of your clothes or bed sheets.

restless muscle movements in your eyes, tongue, jaw, or neck;

worsening of tremors (uncontrolled shaking);

high fever, stiff muscles, sweating, fast or uneven heartbeats, rapid breathing, feeling like you might pass out;

seizure (convulsions);

painful or difficult urination;

severe nausea, vomiting, or diarrhea;

uneven heart rate or fluttering in your chest;

confusion, hallucinations, anxiety, agitation, depressed mood, thoughts of suicide or hurting yourself;

chest pain or heavy feeling, pain spreading to the arm or shoulder.

Less serious side effects may include:

mild nausea, dry mouth, loss of appetite, heartburn, diarrhea, constipation;

headache, dizziness, drowsiness, blurred vision;

sneezing, stuffy nose, cough, or other cold symptoms;

sleep problems (insomnia), strange dreams;

muscle pain, numbness or tingly feeling; or

skin rash or itching.

[Hidden in reply to Hidden]

And thank you Kevin

[Kevin_1 in reply to Hidden]

Hi dw123456

You make such a good point and the more voices on this the better - thanks.

By the time I got to the bottom of that brilliant list of side effects I was reaching for kitchen knife!

However people seldom have more than some side effects and so they might feel it a tolerable trade.

This is one of the things I want to read up on. So much PSP literature treat it as almost diagnostic that if one doesn't respond the these dopamine agonists then it rules out PD and points to PSP and that PSP does not respond to them.

However my initial sketch reading of the material points to the Basal Ganglia as being a key issue in PD in terms of dopamine issues and of course CBD involves the basal ganglia too.

Finally there are a number of folk who might have been mis-diagnosed say PSP when they might have PSP with elements of CBD, or even CBD entirely. Yet still CBD may not have issues with dopamine.

Since I lack eight years medical training I don't know how far I am going to get with this and my key rule for myself is to stay with facts from published research. I expect there will be a lot of ' I Don't knows'.

All I can do is dig and see what comes up.

Best to you

Kevin

[raincitygirl]

Good work Kevin. I wonder if there's any way to quantify the responses - e.g. Of X Respondents to this Informal Survey, Y affirmed the experience of ongoing pain with their (family member/patient). Then it might be interesting to write a letter to the Editor of Neurology and present your finding. Of course they wouldn't publish an article unless it was full-on research methodology, but maybe they would find a Letter to the Editor interesting??

It certainly will be an interesting string for the historic record of H.U!! Thank you, as always

Anne G.

[Kevin_1 in reply to raincitygirl]

That's a great idea.

The problem with quantification is that everyone would need to do a pain scale ideally before treatment was started. We might manage something subjective. The next issue we face are the very different treatment regimens used in the States. So dopamine agonists might well be managing pain as well as preserving function.

I can certainly do a head count for each treatment.

I'll get the first part out of the way and then see what can be done.

Kevin