Very similar to me. 12 months on( 21st June) from right hemisphere ischemic stroke and my CPSP started in about September last year and I’ve tried amytryptoline and gabapentin which I’m currently on and just taking the edge off, but I defo need more pain relief
It’s positive that you can drive and work a little despite the CPSP.
Sorry for being nosey but do you mind me asking how old you are? and are you driving a manual or automatic car?
Joey in stoke 
No I don’t mind. I am 55, and I drive an automatic
Thanks for the reply.
I’m 48 and unfortunately we’ve got 2 manual cars . would love an automatic but just weeks before my stroke we bought a new car and not in a position financially at the moment to buy another car.
Wishing you all the best with your continuing recovery 
Some crazy prices on 2nd hand cars. We had a manual VW transporter, adapted to carry my daughter,had it for 2.5 years, was 4 years old and we sold it via motorway for the same price we paid for it.
Had an ex demo Ibiza, manual, not sold it yet as Mrs P likes driving it, 6 months old when we got it, 3 years old now just, and we were offered £500 more than we paid for it.
Did like motorway, apart from the need for loads of photos, doesn’t half make selling easy when you are less mobile as it’s collected from you. Can always put it back into their auction if decent price not achieved first time.
Has anyone suggested rTMS to you ?
What’s rtms?
But you’re right about car prices being crazy.
We’ve currently got a new( ish) Peugeot 2008 and old Ford ka. In an ideal world I’d love to get rid of the ka and get a medium size auto hatchback.
I happened to come across this. It’s where they create a magnetic field around your head with the idea that it may ease your pain, if it works you might need monthly top ups. Another one of those not certain things.
Are you able to get a referral for this ?
Pain management was mentioned a while back but there’s a massive waiting list.
I’ve messaged my docs today asking for higher dose of gabapentin or adding something like amytryptoline.
I wait for a response in the next 48 hours
Fingers crossed! 
Yeh massive wait down in Bristol as well. My referral was in Feb and no idea when I will be seen.
Think it’s worth getting referred to them though as they are the pain specialists. They may be able to offer solutions not available elsewhere. That’s what I am hoping anyway.
My pharmacist is happy to prescribe dose changes but it feels like she would like them to take it on further as well.
I was advised by my own doctor at start of the year it wasn’t worth going on the waiting list. Having seen him last week I now have to message through the medical centre I’m with to get an added medication or dose and even they could turn round and say no.
Don’t know about you but it feels like I know more about CPSP than my own doctor does. I want to try the amytryptoline with the gabapentin I’m on to see if that works, but I think he’ll advise trying higher dose of gabapentin on its own or leave it longer on what I’m on at moment,which I know my own body and it’s not working.
Again wishing you all the best
Yeh I agree. From what I can gather, pain following a stroke is common but cpsp is not. So it’s likely that many of the people you see have little or no experience of it.
One of the things that seems odd by its absence is there is little documentation to help you understand the journey. I have found something by a very recognised group though. It’s one of those things, it didn’t make great reading, do you want to read it ?
I would say definitely go down the combination route. I had a call with my pharmacist today and we were talking about only take medication if it’s doing you some good. The only way to know if it was of benefit is move to a lower dose and see. My own experience is you will know pretty soon. It doesn’t take the time that a new medicine takes to be effective.
This is from the web bit further below
1-So less side effects of two low doses than one at much higher dose. You also get the same benefit from two low doses as one much higher dose.
2-they target different types of pain
1 Combining pregabalin and amitriptyline at low doses proved to be equally effective but more tolerable compared to individual higher dosage monotherapy
2 Amitriptyline and pregabalin have two different targets of action to reduce the hypersensitivity of NeuP.
Cheers
Nige
What is pain syndrome i never heard of it
Hey up again Nigel. I’ve just had a message from docs saying he’s prescribing me small doses of amytryptoline to be taken at night to go alongside the 2700mg of gabapentin I’m currently on.
The search for the correct combination continues
Joey in Stoke ( or am I Joey in Stroke 
)
That’s good news. Yeh nightime is best, think 8pm or before or it might make you feel (initially) a bit groggy the day after.
Hope it does you some good. I am on 25mg at the mo, two whole tablets and one cut it half. I think I went up to 40mg at one point but that was too much and I was zombie like. Everyone different tho.
Joey in Stoke/Stroke made me laugh
Cheers
Nige
Having just properly read this whole thread I realize how lightly I got off with my stroke!
My best wishes to everyone who shared here for your continuing journey
Hi Simon. Just shows how everyone is different how their stroke affects them.
The lady from stroke association who spoke on my behalf when my work manager and HR came to see me last year, summed it up perfectly. She said everyone on Joey’s street could suffer a stroke and everyone would be different with how it affects them how they recover.
A few wks ago when I was up hospital seeing stroke consultant I was chatting to a lad( in his 30’s) who’d suffered a hemorrhage stroke, but within 12 weeks he was back at work and normal life had resumed for him
We’re all the same but different if that makes sense. I just wish my own recovery was quicker! 
Joey in ( always sunny!) 
Stoke!
Hi @stokiejoey and @Nigelglos,
Could you just remind me whether you’re both on gabapentin and whether either of you have been on pregabalin.
Reason that I ask is that even when I was up at 3600mg of gabapentin it did diddly squat for my pain whereas at the current 600mg of pregabalin that I’m on at least it dulls it down enough to get some sleep but I would also like to reduce the prgabalin dose if I can by perhaps moving to a combination with amytryptaline as the time that I tried a sneaky half tab from my wife’s stash for her MS, when I had come off everything else, I got the best nights sleep since the event that shall not be named.
All the best from the sunny south coast
Rich C.
@stokiejoey and @Nigelglos,
Forgot to say that I’m still pushing on with the desensitisation (nail brush, toothbrush, flannel, towel etc) on the affected LHS and I’m sure that I am still seeing some, glacial, improvement.
Also moved my watch back to left arm about 3 weeks ago and after about 2 weeks of it feeling like a burning ring of thorns it is slowly improving too (I’ll have to stick with it now as when I take it off there is one hell of a tan line 
)
Hey up rich. I’m currently on 2700mg of gabapentin. My doctor did say upping it to 3600 could make feel worse and that’s possibly why he’s now prescribing me amytryptoline as well. I’ve never had pregabalin. I started on low dose of amytryptoline on its own originally, which I found was just taking slight edge off and nothing more, then after a while I was put on the gabapentin. My wife thinks they should have kept me on them and upped the amount instead of changing me over. They’re different meds though aren’t they. Gabapentin is for nerve pain. Amytryptoline is a anti convulsant/depressant
Hi Rich
I’m on pregablin, 50mg in the morning and 75 around 1.30 and evening with 25mg amitriptyline evening and 1 x 20mg baclofen three times a day. Is it working, I don’t know, last Saturday my face and biceps hurt so much I couldn’t believe I was on any pain killers. Been bit easier since but still feels like my face on the weak side has walked into some nettles.
I was originally on pregablin from the recovery hospital days and thought a few months on, this isn’t doing much good and switched to gabapentin. Around that time, the top of chest on the weak side had with hindsight the cpsp spreading. At the time I didn’t know what it was but had a day and a half with every breath being a conscious one. But scary. Called an ambulance at one point but after 5 hours it hadn’t turned up, symptoms eased and we cancelled it. Hasn’t come back since.
Was it a reaction or just coincidence. Anyway gave it up.
Tried to go up to 40mg amitriptyline but couldn’t do it, total zombie, so spaced out and now