Central post stroke pain, again sorry

Thanks for sharing Nigelglos. Are you going to try hypnotherapy? If so it would be really interesting to know what you think of it.
I’m going to find that book :smiley:

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I don’t know a lot about the detail as yet but it seems to be one is about the brain taking on a suggestion from someone else (hypnotherapy) and the other it taking it on as a result of your own actions.

We are all a little bit lazy at times and it describes medicine as passive. We take and wait to see what happens. Apart from swallowing it, not much more to do. This is suggesting more of a move to active pain management by yourself.

The aspect that puts me off hypnotherapy is human beings really. £80 a session, not available on the NHS so presumably not proven and if it’s your livelihood, how many sessions does a person need, 1, 2 or 10.
I tried it before for something else or at least I thought I was but it turned out to be more like counselling than what I expected. Yet it did cure my brother of his fear of sheer drops. It doesn’t feel quite regulated enough for me. No one advertises success rates.
How likely is it that it will succeed.

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I share your concerns, even scepticism .

I guess you’ve googled it? When I did I got

Which has a link that led me to

Which had some links that looked encouraging and I would explore further

Ciao
Simon

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Thanks Nigelglos, thats interesting stuff :+1:

Thanks for the links SimonInEdinburgh :+1:

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I assume you guys have seen

Ciao
Simon

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Hi all. Just wondering, but for those who got the better of CPSP. Did you get rid of the pain completely or was there a certain level of discomfort you still have to live with?
Feeling like I need to get mine down enough just to be able to drive then there’ll be enough of a distraction for me to return to pretty much normal again in time. At the moment my pain level is varying between a 7 and 8.
I’ve got another docs appointment in a week and hoping I’ll be put on the next level of pregabalin.currently on 150mg a day.
Cheers :+1:
Joey

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Dunno What do you have seen this one or not?

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@Nigelglos et al

Might be of interest

I got it by searching

Lefaucheur JP, Drouot X, Menard-Lefaucheur I, Zerah F, Bendib B, Cesaro P, Keravel Y, Nguyen JP. Neurogenic pain relief by repetitive transcranial magnetic cortical"

Which was reference 68 in a academia.edu paper -

Ciao
Simon

Cheers Simon

“In conclusion, these findings suggest that rTMS provides analgesic effects in patients with neuropathic pain in the upper limb, but not in the lower limb or face”

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If it’s partial relief then the two rays of sunshine are a potential for adaptation to be wider and the potential for better understanding to suggest mechanisms that are more beneficial

From small beginnings ?
Ciao
Simon

Two sites to investigate

https://clin.au.dk/dprc/news-and-events

And specially worth a look

@Nigelglos @llareggub @stokiejoey @RuOxley @Mbhope (I think I’ve got the right group of affected folk but please flag to anybody else)

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I tried those Simon, had you found something in particular?

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There are lots of references to research articles that I thought would give a clue to current research and the names of people to reach out to

I didn’t find any specific therapies

Not sure how many times a day this happens.

Me) Hi Brain how you doing ?
B) not bad, just chilling. Whoa, what the hell was that ?
Me) I just put my hand on the kitchen worktop
B) we’ll get it off, it must be - 180 degrees. No one can surely survive such crazy temperatures. Not even penguins could live there.
Me) It’s ok, no danger. It is just the worktop.
B) you are not listening, right I’m going to give severe tingling in your hand and just to remind you, pain in your face, arm and leg.
Me) Brain, what are you on about, right I’m going to touch it with my other hand, there you go, panic over ?
B) ah that’s much better. Perfectly normal, Stand down the red alert, no need to think about leaving the house for safety
Me) Ok, all good then. Can we turn off the pain and tingling ?
B) no
Me) Go on, it’s really annoying
B) sorry I don’t know how to
Me) so you can turn it on but off is at random ?
B) Yep, sorry lost the instructions

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This latest video from Elise mentions cpsp.

This is the site she recommends for evidence based rehab.
http://ebrsr.com

I asked her a question in the comments. In theory with an incident/contact injury, the further you are away from the date of the damage, the easier it should be.
Why with cpsp does that logic not apply. What is going on to make pain levels increase.

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The section on cpsp provides this as a summary of reviews carried out.

Conclusions
A wide range of pharmacological interventions are available for the treatment of central pain post
stroke, including anticonvulsants, antidepressants, anesthetics, and narcotics.

The majority of these require further research to determine their effectiveness in pain reduction with

Gabapentin, Lamotrigine and perhaps Amitriptyline showing the most promise; narcotics are a
treatment of last resort.
Repetitive transcranial magnetic stimulation may be effective in reducing central pain post stroke
when delivered at higher frequencies, although further research needed.

Note
The latest review is 7 years old and many reviews are over 30 years old. There is clearly little interest in this in the wider health community.

Lamotrigine on the NHS web pages has no mention of pain relief which presumably is why no one has mentioned it ??

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We really should be lobbying on this topic then

That document reconfirms others in that rTMS can offer some benefit but isn’t available outside one centre in Liverpool and even that may close once research funding ends.

There is no doubt cpsp is a bit of a poor relation but stroke itself is. How has the MS charity been able to fund/purchase? large buildings+car parks and offer heavily discounted services ?

Are they really much more heavily funded ?

I don’t know about the MS societies funding as they bought a lot of cars?