Central post stroke pain, again sorry

I have sent some details to Andrea who has confirmed she has sent them on to Tracey.
Hopefully things will progress from there. Ideally a future presentation and possibly finding out why rTMS has never expanded beyond Liverpool.
30% success rate for a condition which NHS consultants in Bristol greet you with “there is no known cure”. Lets see what Tracey can achieve.

In addition, Andrea mentioned the feedback option where if we identify stroke association pages which can be improved, to drop them a note. So I have sent off details there on
CPSP and in particular
rTMS if you are in the NW of England
Psychological help
How severe the outcomes might be and stressing depression help

and

Sleep Apnea
Again stressing how important it is to try to resolve given it’s linked to having a stroke, high BP, diabetes, daytime sleepiness etc. even dizziness it turns out

With something like this, suggestions could be given a ticket number, a date when you will get a response by and a named contact who will review the change.
Cheers
Nige

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Yeah I agree the metrics to monitor a responce- good idea

If you have the time and want to learn much more (in a nice straightforward way) Tom the expert here is well worth a watch.

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Ah! I’ve seen a number of YouTubes with Hugh Preston’s group :slight_smile:
But 2 hours it’s going to take making a scheduled opportunity to sit and listen to that

Thnx fro sharing
:slight_smile:

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Given the sparsity of information on living with the condition, I really hope Tracey can work some magic and get him to present and take some questions.

Yeh it’s definitely one to break up into bits given it’s nearly two hours

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How is it going? It was nice to ‘see’ you again!

I hope the Duloxitine is helping. I am very happy with my 60 mg. My Neurologist wanted me to go to 90, but I didn’t follow directions. He saw me on a bad day after a load of good ones. My anxiety was up in direct relationship with the anxiety he causes in me, and others. As in he is super bright, to the point of brilliant, not very patient, and scared both the cardiologist and ICU doctor to the point at my last hospitalization, even in Cardio Critical Unit, he took over my care from them. He didn’t ask, he just did it. So a bit intimidating. I cried and he assumed I needed more. I knew it was circumstantial and that I didn’t need more.

I so hope it is working as well or better for you than it is for me, and hope to run across you again. Message if you like.

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My mother’s doctor caused me a lot of anxiety.

If doctors have the way, it might be best to switch doctors. But I understand fully that sometimes you just cannot do so.

Take good care.

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Thankfully, although he can be very anxiety provoking, he is also very thorough and has been great at getting me the help I need. But I do agree with you, if there is a problem, change to a better fit if you are able.

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