Central post stroke pain

Share your story Caring for someone
21

I will have a nose at that and come back Simon. Wanted to share a medicine withdrawal which might show the benefit it can offer.

Aim
I hope this might help others with the type of pain or feelings that this or an anti depressant in general may help with.

Note pain with cpsp is defined as outright pain, numbness tingling, burning. All on stroke side. It’s not always outright pain.

Background
I wanted to share my experience of coming off of nortriptyline, very similar to amitriptyline. This is prior to duloxetine. I am still on 75mg of pregablin.
We are all different so no guarantees. I can’t rule out that I am changing in some way, this might not be 100% medication driven.

Timescale (very cautious, consultant suggested could have been 1 week)
Initial 25mg. Low dose but unable to tolerate much higher.
14/11 dropped to 20mg
18/11 dropped to 15mg
21/11 dropped to 10mg
23/11 dropped to 5mg
24/11 zero dose.
26/11 writing these notes.

So what’s happened Stroke side only.

  • Increase of pain was quicker than I expected. Quicker than it takes when starting medicine for the benefit to arise.
  • Early on 2 episodes of significant face pain. Lasted about an hour. Not experienced before or since
  • Much more numbness on stroke side especially the leg. This seemed to impact coordination as less feedback. This is my first major finding
  • Tingling. Actually became painful in stress conditions and after exercise. Slower, nerve type pain. Like a tens machine sort of feeling. Not comfortable at all, couldn’t watch football, very noticeable after exercise bike usage.This is the second
  • Resting Pain in shoulder and hand. Change from burning/tingling feeling.
  • Stiffness in hand more noticeable.
  • Burning feeling little change
  • The feeling you have before cramp much more noticeable and prolonged in one of my toes
  • Two withdrawal symptoms. Very slight headache and slight sickness. Not unexpected.
  • No real change in mood but life in general much harder. Much harder to exercise.
  • Less in the way if tremors but certainly not gone away.
  • Very heavy feeling lower stroke leg. Not had this extreme before. Much more foot dragging.
  • Brain fog seemed worse but I am driving it very hard trying to find black Friday bargains. Lot of research and looking through deals sites and webpages.
  • Took extra paracetamol.

Conclusion (so far)
Subject to me not changing, definite benefit.
More benefit than I expected.
It’s pretty unpleasant. Have got a 5 day period for it to be out of my system but read side effects from withdrawal may last week’s after.
If I was on an anti convulsant only, this seems to be a good thing to take in addition.

Thoughts
Is my dose of pregablin doing anything at all. If it is, life would be very hard if this could be worse.
Not had an increase in pain like this before
Can’t wait to get on duloxetine.
I would expect cognitive decline with this level of pain. Detached feeling. Inevitable in worse times and inevitable over time. Bit depressing, hope duloxetine works.

Suggestion
If you have significant leg numbness at times and are not on an anti depressant, perhaps ask your doctor?
If you have painful slow tingling and are not on an anti depressant, ask your doctor ?
Really if you are only only anti epileptic medicine and have any of the pain sensations mentioned, ask your doctor about anti depressant in addition?

Next update
Does duloxetine reverse and improve on the decline

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22

Here is a chain which I recently came across in a book.

The initial stimulus might be touch, cold etc. The chain is

Nerves
To
Brain
To
Pain
To
Stress Response
To
Increased pain

If you tense up with your stress response this drives more sensation which drives the loop.

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23

No one has mentioned anything like this to me. Has anyone else come across something like this ?

I looked for chronic pain rehabilitation after reading some of this book. This is going to make me think, mmmm could that work for me. Can you rewire your brain so that items that hurt are not considered as a threat. Could you give up some of that pain medication that has been thrown at you so far ?

https://www.amazon.co.uk/Chronic-Pain-Rehabilitation-Active-management-ebook/dp/B08BY2G2G1?ref=d6k_applink_bb_dls&dplnkId=92177671-37d1-4853-96b2-c95df85652b1

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24

Fledge,
I’m really sorry to hear that your partner is suffering with her pain. It must be horrible to feel helpless - but you’re not! Just by being empathetic can help. I was on antidepressants until quite recently (thought i could ween off) but im thinking of going back on. So, they could help her to just manage the pain - but she needs to chat about it with her GP and find which ones work best for her.
My heated blanket is my goto when my pain is really bad. Also distraction help, I use meditation apps and audio books, that way i don’t have to hold anything. If shes able, maybe a hobby - drawing (my husband bought me a colouring book when i had my first stroke, i enjoy it), jigsaws, play board games together (if you have time).
What is she taking? Are there any other nerve pain meds shes not tried - it took me a long time to find the right ones, the pain’s always present and can be horrendous, but I’m able to manage my pain day to day.
I hope the people on this forum have given you some food for thought. Let us know how you get on. :blush:

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25

Hi there. Last week she was injected with botox into her leg and arm on the side she can’t use in the hope it will relax the muscles and help her. Still waiting to see if this helps. She’s also gone onto anti depressants but she is still in rehab so I’ve not spoken to her GP but also taking Gabapentin and morphine but this doesn’t seem to help what so ever. I do like the heated blanket as the warmth does seem to help

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