Thalamic pain syndrome and pregablin

[Monkey101992]

Hi all. I had a stroke 9.8.22. Had some nerve psin in affected left shoulder and arm. GP prescribed gabapentin gradually increasing upto 3600mg per day. Had some effect but still had some nerve pain in shoulder and arm. Pain clinic weaned me off this and onto pregablin. Im gradually increasing by 26mg every 7 days. Now on 225mg x 2 per day. But I now have awful nerve pain down left side, head, face, neck, shoulder, arm, hand, fingers. Leg and toes. Fingers feel like they're in a vice. Any suggestions welcome

[Bevvy]

How long have you been on pregablin ? I would be going back to pain clinic and saying this new drug simply isn’t working and you are worse off than previously. There are a number of medications that can be tried and it’s a very individual thing to find something successful. I take duloxetine and find it helpful. I would say that whilst these drugs can help, on the whole they will not eradicate all pain especially if it’s caused by nerve damage. However in your case it could be helpful to try something else.

[Monkey101992 in reply to Bevvy]

Thanks everso Bevvy. Useful tips. I've been on pregablin since 19 March. early days maybe but never had this much pain on gabapentin. We'll see

[Tourk]

Hi Monkey you need to talk to your doctor/ pain clinic straight away. You shouldn't be getting side effects like that. I've never taken pregablin, but it obviously doesn't suit you. I took gabapentin for over ten years with no problems. Pain killer and anti inflammatory. I still keep so for if I have a flair up.

I've been in chronic pain since early 80s so have tride many different combinations of pain killer's. So made me ill, others didn't work. It's not always as simple as one pill cures all. For myself I've found a combination of pain killer's citrophan and creatine monohydrate makes things bearable.

Hope this helps

[Monkey101992 in reply to Tourk]

Thánks. Hhats really helpful. Ill see what pain clinic say on 10th may.

[colourpassion]

Hi, so sorry to hear you have Thalamic (CPS) following a stroke. This happened to me too in 1999 when i was only 45 and i know how debilitating it is. Mine too is in the whole right side of my body. In those days i tried every drug (and there was a lot of crazy stuff available...nothing worked...they put me on Fentanyl but after a few months i knew i was on a rocky road so stopped that(stupidly) and learnt what 'cold turkey' was!! I tried hypnosis, acupuncture, massage therapy, etc etc. I was on Gabapentin but was changed to Pregabalin years and years ago. In 2001 i was the first person to have a Deep Brain Stimulator fitted, that i reckon gave me a 30% reduction in pain. But since 2019 they have refused me a new battery, everyone not just me but that's another story.

This pain is very debilitating and little help available, i know they are trying to move gabapentin users on to pregabalin (less addictive? less negative side effects?). Unfortunately the nature of the beast we live with is that it can change, areas affected, days of pain, intensity, type of pain, etc which is why it's so hard to treat. Sadly the increased area may be nothing to do with the meds but more to do with your distress, depression etc. I began with smaller area but it did increase to the whole of my right side.

To be honest the drugs will take the edge off (but not always) but never stop it. The thing that worked for me was distraction, i am a painter/weaver/maker/reader/thinker when i get involved in a subject it takes me away from the pain, it's always there but on the periphery instead of controlling my life. But this can take a little time and you are only at the start of this journey. But if you have a passion or an interest i beg you to throw yourself into it and see how much that can help you.

I think it took me some time to accept this was with me for life too, at first i believed accepting is giving in, but i was wrong about that. I also had many other stroke issues to deal with, loss of sight, loss of walking, unable to read and write, unable to speak....so i had a massive rebuilding task ahead of me as well as the pain.

Sorry my post not more positive for you.

[Monkey101992 in reply to colourpassion]

Wow. Some story. Whilst on gabapentin i didnt have these severe symptoms or side effects. I dont know if its due to withdrawal off gabapentin or mot used to pregablin. Either way it sucks. Ive a meeting with pain clinic 0n 10 may. Lots of questions to ask.

[Monkey101992 in reply to colourpassion]

Hi again colourpassion. So, how are you today. Where abouts are you. I admire your escape from pain by way of distraction. I'll try.

[Macblank]

Trapped nerves.

I suggest you get a nerve conduction study.

They "wire" you up, and send tiny tiny buzzes of electric to various nerves, and they can tell which is having a problem.

I get lots of nerve issues in my hands, and am having an op to release a nerve ... Let's hope it's better than 10 yrs ago when they first did the op ...

I often get extreme swelling sensation, with pain feeling like my hand is going to explode. ... That's amongst a couple symptoms I get ... I get lots of pins n needles too.

Am waiting and waiting, so hopefully I'll have the op before I reach a year on the list

[Monkey101992 in reply to Macblank]

Interesting. Feel for you. I wish you luck with op.

[Jaff1]

I take amitriptyline 20mg daily. I have trigeminal neuralgia and they totally stop the pain. When I first started suffering I was eventually put on amitriptyline 10mg daily and that worked for a few years. I went onto pregabalin when the amitriptyline stopped working. Again once I reached a certain dose, it stopped all the pain. That also worked for a few years although it did space me out a little. I went back on amitriptyline after the pregabalin. Ask your doctor about amitriptyline for your nerve pain. I don't get any side effects from amitriptyline. Hope this helps.

[Monkey101992 in reply to Jaff1]

Thanks. I'm on 30mg amitriptyline and 200mg pregabalin. Still not touching pain. I was on 3600 mg daily of gabapentin its the max. No side effects. But I still had some nerve pain so they switched me to pregablin. Wish they hadn't.. I feel awful just now

[Jaff1 in reply to Monkey101992]

Unfortunately I don't have any other answers. I do hope they sort out your pain. I don't know what I would do if my medication didn't work. I wish you all the best for the future. I consider myself very lucky as far as medication goes and I sincerely hope they find something that works for you.

[Monkey101992 in reply to Jaff1]

Thanks. I hope anf pray I find something