How to manage thalamic pain syndrome?

Had an Ischemic stroke 3 years ago.
Tried all meds - On no meds for Thalamic Pain Syndrome. Pain is 24/7.
Had DBS implantation off label use. It didnt help. Had it removed. Now I have had RNS implantation off label use. Tomorrow is my first modulation appt. Pain is the hardest to treat - thats why these are off label procedures.
Stay tuned
Paul

@lisalucier I realized right after I commented on the wrong one. Oops. It’s been a wild ride. In 2014 I had a hemorrhagic stroke that mainly affected my occipital and parietal lobes. I lost about half the vision in my right eye. Some memory, coordination, and speech issues. I have pain in the left side of my neck and shoulder region that pretty much never goes away. I used opiates for 10 years, but they stopped working or I always needed more. I’ve been exploring other options for the past year or so. I was on 30 mg for a couple months, then 60 mg. 30 was not enough. 60 seemed to help. I just started taking it again after stopping for 6 months. We shall see.

Hi, @brycebaker09. Welcome to Mayo Clinic Connect. Thanks for the suggestion for @whinnie65.

I do actually remember a family member mentioning that duloxetine (Cymbalta) was not "kicking in" fast enough for her when prescribed it after an orthopedic surgery. How long did you find it took to have an effect?

Have you also experienced other lingering symptoms after your stroke?

I’ve dealt with nerve pain from a stroke for more than 10 years. Have you tried Cymbalta? It takes a while to start working, but it helps me a decent amount.

wildeharpe ..... I also had a thalamic stroke about 9 months ago. I was very lucky that my right side was more or less still working along with my speech. Left side had slight numbness but didn't cause pain. At about 6 months my left side started getting hard and painful and I felt like someone poured cement inside me and now everyday it feels worse and worse and harder to lift my left arm and like you my left leg causes me to wobble and how my hand, leg and foot feel numb with stinging pain. I do not like taking drugs and yet I have tried Gabapenten and Lamotrigine (generic for Lamictal) and they have not helped with the pain. No one seems to really know what to do for the pain even my neurologist who says I will just have to live with it. Well I have 10 acres and there is always so much to do. I am outside almost every day and it makes me feel better emotionally but the darn pain doesn't let me get done a lot of things. I am doing PT (and have been to several pain doctors) but it isn't even as hard as just my everyday work around here. Looking for answers.....

Hello,

Suffered a stroke 2 yrs ago and I have severe chronic pain - full right side - Thalamic Pain Syndrome .
Had DBS brain implant in attempt to ease the pain. No success yet.