Nerve Pain from Stroke killed "Sensory Feedback" loop

Hi, @steveschem, and welcome to Mayo Clinic Connect. Nice to hear you have full motor skills after your stroke. The hyperactive nerve endings on the left side sound challenging to deal with.

I'm tagging @scottrl, @zerodas, and @joriahenry to see if they have any ideas about dealing with burning nerve pain.

@steveschem, you said your life with pregabalin is not good. What have you experienced with taking this medication?

I'm sorry you have nerve pain from the stroke! I hope you can relief!! I had several small strokes and I have my hands shake and upper body has quivering in it.. My balance is not great yet. It was not good a couple months at all. I was walking like I was drunk 🥴 My speech is much h better , but still have issues at times not being smooth from one word to the next. I still forget words I need to get my point across.

Hi, @taylor - having several small strokes sounds like a lot to recover from. Glad to hear that some effects from it are improving.

What do you feel has helped you in your recovery process?

Steve @steveschem,
1 moth post ischemic stroke - pain on side of body started. 1 year of entire pharmacy of Rx's failed.
Gabapentin, Seizure meds, along with epilepsy meds - no success. 1.5 years post stroke doctors performed D.B.S. brain surgery ( off label use ) because electrocution pain and burning flesh sensation was finally labeled as;
Thalamic Pain Syndrome. This condition is the hardest pain to treat. 2 years post stroke and I can use my right side but any use is punished with increased pain. Electrocution like pain and burning flesh pain is 24/7.
Modulation of brain implant is still a work in progress. Implant is not in the motor complex area as it would be in Parkinson treatment. It was placed in sensory area. There is talk of another brain surgery that would place sensory "paddles" this time addressing the motor cortex area. As with D.B.S. surgery for pain is "off label" use the 2nd surgery would be even more "experimental"
I say all this not to scare you but to inform you of whats out there. If your current Dr's are not trained in performing D.B.S. surgery and the required post surgery modulation for pain; your insurance carrier can refer you out-of-network to another facility that is qualified - as was my case.
No one understands the torture of 24/7 pain and how isolating it can be.
Know there is another person walking along the path with you.
Make informed decisions.

61 male prior HBP controlled with meds.
I am one mo Post syncope and collapse that resulted in about 5 minutes of unconsciousness, multiple fractures at C6 and C7, bruising of spinal cord, and some connective tissue damage.
After about 8 hrs in the ED I began to feel a pain in my arms below the elbow and including all of both hands that I had never experienced before. Hypersensitive to the point that having a sheet or a provider’s scrub brush against me felt like a hit from a strong electric fence.
Stayed in ED for another 9 hrs and transferred to a PCU bed. 4 day hospital stay.
I’ve regained significant motor skills and some strength and the nerve pain has improved but is stil significant in left forearm and the 3 smaller fingers.
I’m feeling positive about the progress in OT and will continue to work hard. My major concern is the nerve pain. I’d appreciate hearing of other’s experiences.

Your damage seems more of a Physical issue... than Brain ... so you may get improvement

My stroke killed the sensory feedback to my left side.
Since the brain could not "see" my nerves on left side, the brain made everything on left side hyper Active. Pin's and Needles... 24 hours a day.

Left side is a little numb.... but always tingling

Sort of like the guy who loses a leg.... but the leg still itches all the time.

I am told my condition will NEVER improve or change.