Central post stroke pain, again sorry

Do any of you believe that Gabapentin could be worsening your pain somehow? Just throwing that out there. I have relative (never had strokes) who claim it doesn’t really do anything – they’re simply addicted to it.

Hi Matthew. I’ve not been on here for a while. I still suffer from CPSP. I’m currently on 550mg pregabalin and 50mg of amytrypytoline.
I tried different levels of gabapentin last year. I tried the maximum 3600mg but quickly came off it as wasn’t so much pain, more numbness. I couldn’t feel my hand or foot.
I know it’s been mentioned on here about hypersensitivity to pain. I’ve had an issue for a while with sores on my skin. I’ve seen doctor a couple of times but she’s still not sure if it’s infection or allergic reaction to something. Currently applying daktarin( again) and dermol and a steroid cream. But the stroke pain has definitely hightened the pain on the most badly affected areas on my left calf, ankle and achilles. It’s hard to know how bad my stroke pain is exactly due to said sores.
I’ve actually just requested a higher dose of amytrypytoline. I’ve tried different levels of pregabalin and this is about as good as it gets with that. Has anyone had any success with a combination of pregabalin and amytrypytoline? I believe the maximum level of amytrypytoline I’m allowed is 80mg unless anyone knows any different?

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Friend, so you went off gabapentin because it made you lose feeling too much? Okay. It was your decision or the doctor’s? Just curious.

I don’t know anything about those other drugs you’re referring to. If I did, I’d chime in for sure.

I hope things get better for you – I really do. Please keep us informed.

Take good care of yourself.

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It does seem that addiction is a very real thing with Gabapentin which makes it hard to give up.

On the one hand, if it’s felt Gabapentin is doing nothing, that might suggest the pain changes are independent of the medication?
Cheers
Nigel

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Thanks Matthew :+1:. It was my decision. I went straight off them to low levels of pregabalin( both similar drugs)
I’ve twice gone a day or two without them, due to running out and not getting prescription in on time. Withdrawal symptoms are awful

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It is…I have relatives on said drug who take it simply because they are addicted to it. They say it doesn’t even help them (they didn’t have strokes; they use it for neuropathy, back pain, etc.).

Again, I am not telling anyone what to do. If you want to be on the drug, that’s up to the person. But I don’t hear very good things about it in general.

Take good care.

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This is just a study piece for anyone who does consider the deep brain stimulation route.
Disappointed to read the current treatment with a continuous pulse had a benefit which diminishes over time.

We drill a hole in your head, plant electrodes, 31 % success rate, 3% risk of stroke, 7% risk of infection. And the success we have is time limited.
Must be pretty desperate and in a lot of pain to consider those odds… Well, yeh

As time has gone on, realise the forum isn’t the ideal place for this, even with the search facility.
We could do with subject matters with folders which any one of us could add to over time to build up a library. Perhaps add agreed tags to posts by showing current tags in use with descriptions, add new tags with descriptions.

Perhaps a hierarchy of folders and sub folders

#DBS - Deep Brain Stimulation
#CPSP - Central Post Stroke Pain

I am going to give this a go. It’s 20 mins a day and unlike many other you tube videos, this one is very short.

My interpretation of the video is that you really concentrate on the feeling and then concentrate on reducing the sensation. This is perhaps a skill to learn but I think it comes from relaxation and control.

Be interesting if a few of us tried this and shared what worked and what didn’t

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What do you mean?

Perhaps you mean that with a little community coordination (a community coordinator role? Wonder what qualifications you need for that? Imagining how to extract value as one of them?) then the information that we are generating and know individually could be collated and stored for retrieval?

Discourse’s preferred retrieval vacancy mechanism is actually hashtags .
since they were never introduced to the community most the content on here is not hashtag - that doesn’t mean we cannot make progress - although the most obvious solution would be to run a machine learning algorithm across the free text data lake that we have already created

I for one am happy to talk about what we can do…
Caio
Simon

If we were thinking a bit long term, say a couple of years down the line, what would be the easiest way to find information?

Tags in forum posts for sure. What if we just wanted to share information, a bit like the best you tube channels or the best videos. A folder for all videos and then sub folders for categories. Post your entry in the appropriate folder. May be a score on how useful it was and briefly why it was useful ? Something pre formatted?

I watched you tube today. One posed the question, what if chronic pain is simply a learned behaviour. Last time this “cold” event happened, brain produced this sensation. The brain does it next time and the next until it’s perfectly normal for the brain to just keep repeating.

The key point, how to make the brain unlearn it’s response ? Could you equate the sensation to something else, maybe a joke or comedy sketch ?
Needs a bit more research.

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@Nigelglos

I watched you tube today. One posed the question, what if chronic pain is simply a learned behaviour. Last time this “cold” event happened, brain produced this sensation. The brain does it next time and the next until it’s perfectly normal for the brain to just keep repeating.

This is long but I managed to watch about half of it this morning. I found it interesting. You may have already seen it, of course :grinning:

(5) The BEST WAYS To Heal Chronic Pain & Trauma WITHOUT Medication | Howard Schubiner - YouTube

Folders and the tags are (almost) entirely equivalent (they should be). It’s our thinking that differentiates them, probably because the visual presentation may have differences depending on the name.

There is a pool of posts. when not looking at their content (attribute raw ) every single post is identical. none stands above or below the others. Now give the posts an attribute called containing folder (actually ‘topic’ see here permissions allowing) and give the folders an attribute called category and now you have a parent child relationship - one in which a child can only have one parent but a parent can be a child of one of its own children! - thus these analogies begin to break down

Give posts a list of containing folders and they are hashtags - but the designers did not consider hashtags as containing hashtags which is a shame because they imagined a library shelf or a physical filing cabinet and built limitations to both folders and hashtags that were inherited from the physical world and did not belong to the digital.

We see exactly analogous limitations imported into the forums operation and the medical professions perceptions of what is possible and those are unhelpful outmoded and people seem generally to hang on to the limitations rather than embrace the possibilities

Thanks Trace
Like you I was part way through this, managed 42 mins a little while ago.
It’s a bit off-putting being that long, feels like a slog.

Found this one which at 8 mins is more attractive just due to its length.

I feel that when you start a journey like this, it’s easy to assume there will be a magic pill. There hasn’t been a time in my life where there hasn’t been a solution.
Now for the first time, there isn’t any guaranteed way forward. In fact odds are against me and everyone else. If there was a solution with a 50 - 75% success rate, everyone would be doing it.
The medical world seems very focussed on operations and medication. The psychology aspect feels like a poor third. I am more convinced than I have been that this pain is a learned response and so is the increased severity.

Psychology feels risk free. Can my brain unlearn this acquired behaviour.
Cheers
Nige

“A habit is a neural circuit in the brain that is learned through repetition, becomes almost automatic, is triggered in certain situations”

Sounds very much like learned movement or learned pain post stroke.

Stress/cold event…Basic caveman brain thinks “what did we do last time” Pain. Did we survive ? Yes unharmed. Ok let’s do the same response this time, obviously the best solution.
Fire up that pain, we need to react to this “danger”.

Basic brain trumps rational brain. Rational brain might have thought, it’s not too cold. Am I in danger, nah not really. Let’s process this. Yeh fine, we are ok.
Basic brain in the meantime wants to keep us alive and needs us to react. It can’t tell us, it can only flag an event to us.

I am not really convinced that end user tagging really works. Can I be bothered, will it be accurate, how can I remember all the tags, I haven’t done this before.

May be as my work role involves maintaining a hierarchy, strongly influences this view. Having no audit capability for folder creation or a change log may have added to it. Would be an inaccurate mess in no time.

Keyword and auto allocation? Possible.

You could end up with a spiders web or if capacity allows considered duplication or manual links for end user simplicity.

For example, a top folder could be Pain, nothing sits above it. There might be a separate folder on thalamic strokes which may have a link, see pain but it’s not directly linked.

The approach is really to make it easy as possible for navigation. For that you need to understand how end users will use the data or if you are an admin+end user, so much the better ?