Nerve Pain

Hi all, I am new to this forum.

I had a stroke three years ago which effected my left side. I have improved greatly but am obviously not back to my original self. After initial hospital physio I paid for private physio and have tried acupuncture. My main problem is the constant tingling/ nerve pain which effects the whole of my left side, and is unbearable at times.

My doctor has me on gabapentin which is really not alleviating my symptoms. I recently attended a specialist in pain management who was really not much help. I realise it may be a long shot but was wondering if anyone else suffers from this tingling/nerve pain and have you found/tried something that was useful.

Thanks.

 

 

Hello Kaz

I also had a stroke 3 yrs ago which affected my left side too.  This has improved to pretty much normal now but 12 months ago I started with numbness and tingling in my non-stroke leg after an injury at the gym. I stretched too far on the reclining cycle and felt something 'give' at the back of my right leg. 2 days later,my leg was tingling from the knee down and every time I sat down, my leg went completely numb. My GP gave me gabapentin like yours did.  I tried it for a month. It was great for knocking me out at bedtime but didn't do anything to relieve the numbness.  Coming off it was horrendous even though I only took it for a month.  It warns it can be addictive and can cause depression or suicidal thoughts! I did nothing but cry for a few weeks when I came off it and have never took it since.

I was sent to the hospital to have a nerve conduction test which was the most painful thing I have ever known. After waiting 3 months the verdict was no nerve damage.  I was then referred to the neurologist whose first thoughts were I had suffered a second stroke on the opposite side, something which never occured to my GP by the way!  After a full MRI head scan, the result was negative. It only showed my original stroke. She put me on amitriptyline 10mg to try for 3 months. Although it is an antidepressant, in low doses it relieves nerve pain and numbness.  I don't suffer from depression but it is not addictive and in low doses doesn't do anything for depression. It takes about 6 weeks to kick in (for me around 8 wks) but it has been a godsend for me.  Very occasionally, I still have private physio as the manipulation she does keeps things on track soI can live my life without the chronic numbness. I also go to the gym twice a week - a rehab gym where I am supervised to make sure I don't do any moves which will irritate it.

It may help you and is certainly worth trying in view of the fact that you have tried most of the other things on offer.  Let us know how you go on if you do give it a go. 

 

Amitripline 10mg ,also on it for pain on left arm . Stroke about 1.5 years ago , been on this approx 2 months . Still suffer from terrible fatigue, bed rest ,every day 3 hours . I wonder if this might ,encourage this , have also heard bad withdrawal. Do you suffer from this , thinking of stopping it .Thanks David. 

Hi David - I don't think it would be the Amitriptyline that is causing the fatigue through the day as it's meant to be taken at night. Fatigue is a major symptom of strokes which can go on for years.  I am 3 yrs post stroke and still occasionally have to have a little rest in the afternoon. Amitriptyline does cause sleepiness but because I take mine at night, it gives me a good night's sleep as well as easing the numbness.  

If you want to come off it, it has to be done gradually like most other long term drugs and you aren't supposed to stop it without speaking to your GP first. Some people think that because it's only 10mg, you can just stop and it won't matter. It does need to be monitored if you want to stop.  I would give it a little longer as it took 2 months for mine to kick in before it helped with the pain and numbness. Hope that helps.

Thanks for helpful advise. Thanks David. 

Hi, I had a stroke in 2016. I suffer horrendous post stroke nerve pain in my left side. I take 2400mg of gabepentin, 50mg of amitriptyline, 50mg of nortriptyline and I also have post stroke seizures so take 400mg of lometrozole for those which also acts as a nerve pain reliever. I also suffer myopic jerks spasms. I am waiting to get my appointment for magnetic brain therapy as a clinical trial, but due to COVID-19 everything is at a standstill.

hi i am nearly 1 year post stroke and had suffered tingling and numbness in both hand and wrist joints.i had this before the stroke mainly at night in bed.i rcently have encountered severe pain in the right joints like i broke my wrist.doctor gave me cocodamole for the pain.now its happening in my left wrist and hand ,does this sound what you areencountering .i dont want to start taking any more meds than i have to im more concerned whats going on.my stroke affected my vision not the usual strokes you hear about,i was wandering the best way forward with this if anyone can give any advice

Hi Kaz

I had a brain stem stroke almost 4 months ago.

I have very slight weakness in my right side, but my left is the real issue between the two. I had the feeling of ice cold burning over my head, face and left side completely down to just above my knee. Then about 8 weeks post stroke the pain really ramped up and I was diagnosed with neuropathic nerve pain.

I'm now on the max dose of Pregablin, 300mg x 2 daily. It's taken the edge off enough to help me get a bit more sleep at night, but really most of the time I struggle to know what to do with myself. I feel like I'm being branded with a burning ice poker much of the time. 

I'm disappointed to hear that the pain team were not that helpful to you Was I'm likely to be referred to them soon.

Have you tried Capsaicin cream? I was told about it and will be asking my Dr if I can try it on our next chat.

Has anybody been left with nystagmus and if so does it make you feel sick and disturb your sleep