How to manage thalamic pain syndrome?

@wnasholds glad to hear that you found a neurologist who had a useful background for you, and I'm sorry that you lost her as a healthcare provider. I'm glad to hear you reached out to your primary care doctor and that they advised you on the gabapentin.

Will you be seeking another neurologist at a different practice, going with your primary care provider's guidance till your former practice hires a new neurologist, or something else?

@lisalucier yes,I will seek new neuro at same practice tho last I heard they were having difficulty finding new hire. Seems to be a problem in my area with specialists in different fields

@pmorgigno Hi, could I ask, how does the RNS differ from the DBS device ?

Does it still connect to the same damaged areas of the brain ?

I had a thelamic stroke last year and it is my right side that has very similar problems as you. I have tried everything and still can't play sports I have been playing can't run sleepy all the time - fell a couple of times because of balance. Hip area is not very useful. Pain 24 hours a day. Doctors all tell me there is just not information on thelimac stroke. Very frustrating. If anyone knows how to deal with thelamic pain syndrome please let me know. thank you, larry

@22krut unfortunately Larry, as I have found out when told, "you know there's no cure". I was a bit in shock.
When I was told I was thinking, you are joking. This was in 2024, you hear of all of these medical advances, yet for those thalamic strokes, about a third that lead to this horrible pain, there isn't a known cure.

It appears more manageable if you can tolerate higher dose of medicines that have pain relieving properties. It does seem odd to be taking an anti epileptic drug when you don't have epilepsy and an anti depressant when you don't have depression but these seem to be the only medicinal help that's commonly available. They are hit and miss. About 1 in 8 people will get a real benefit of 50% pain relief and above.

It's like a lottery and you just have to hope you are that 1.
Best of luck

@22krut if you have the chance of hydrotherapy, warm water pool, that I find is very helpful as is heat in general.

Avoiding cold, stress and unexpected touch on your stroke side also helps

Thank you, larry

Just the opposite for me. It seemed to switch off my sub conscious breathing while I was awake. Spent 2 days having to consciously breathe, absolutely exhausted.

Have used a combination of pregablin and amitriptyline and then pregablin and duloxetine.

Another common and seemingly quite effective combination is lamotrigine and duloxetine. Lamotrigine does come with the chance of a rash. More common in children. This rash can on the odd occasion be very very serious.

Personally I would suggest to everyone to see if they can be investigated for underlying spasticity. You might think, all my pain is CPSP but from the research I have done, it seems as though cpsp and underlying mild ish spasticity are very closely linked. They share many of the same triggers and feed off each other.
Mild spasticity is apparently very difficult to identify. It only takes a little shortening of a muscle to fire off no end of nerve signals which the brain will interpret as or believe are pain.

Ai thoughts on cause of cpsp

I have Complex Regional Pain Syndrome (CRPS). There I lots of info and several co-sufferers here. What interesting is its very clear everywhere you read, that crps can result from a stroke. And your symptoms of extreme burning, discoloration, etc are the same as CRPS I've never heard of "Thalamic Pain Syndrome." I wonder is it is really the same thing just renamed to make these cases related to stroke more real. CRPS is a still little known ad under diagnosed. Having it an officially connected might be fewer drs will say its all in your head. Do some research here and elsewhere on CRPS.