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.
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! 
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 
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 
)
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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!
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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.
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@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 
)
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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
Hey Joey,
Like most meds that we are being prescribed for neuro pain, they are also used for other conditions (the ones that we’re talking about predominantly being used for epiliepsy, fibromyalgia sand restless leg syndrome).
Amitryptaline is indeed a tricyclic antidepressant, gabapentin is a muscle relaxer and anti-spasmodic and pregabalin is an anticonvulsant ( both of the last two being Gabapentinoids) however all three have neuropathic analgesic properties (to a higher or lower amount dependent upon the individual).
Let us know how you get on with your new cocktail once you’ve had a chance to see how it goes.
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Hi Nigel @Nigelglos ,
I was really bad on Saturday too until about 14:00 when I realised that I’d missed my morning dose of 300mg pregabalin, got a bit better after that so at least I know that it is still doing something.
Was there any reason given to you why the doc hadn’t followed the below NICE recommendations regarding Pregabalin doses and instead went for the amitryptaline as an add on and did you see much of a benefit when it was added?
Peripheral and central neuropathic pain - Adult - Initially 150 mg daily in 2–3 divided doses, then increased if necessary to 300 mg daily in 2–3 divided doses, dose to be increased after 3–7 days, then increased if necessary up to 600 mg daily in 2–3 divided doses, dose to be increased after 7 days.
I assume that you’re on baclofen as a muscle relaxant rather than for its uses associated with alcohol use disorder 
(just checking as I’ve had a fair few good nights out in Bristol in the past, and almost an equal number of bad mornings to be honest). Do you think that it has helped with any of the muscle pains? (you know, the ones where it feels like someone has put a strap around you bicep or thigh or calf and is slowly but surely tightenning it)
Rich C.
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Yep I’ve got something like that but I look nothing like that when I’m using it (usually I’ve got my forehead wedged in the corner of the room to try and avoid falling over!!, oh yeah and I don’t wear the same leggings and crop top either).
With regard to relaxing/meditating, I’ll quote one of my previous posts in the hope that it may be of help:
My OT recommended that I try some guided pain meditation which, to be honest, I initially resisted as I had always perceived mediation as a bit “new age hippie” for me (I’m an engineer by training/birth so I’m very logical rather than spiritual/emotional) however after a bit of looking around on youtube and trying out various offerings I found https://www.youtube.com/watch?v=Fdr-jK4XrrM which I use when the pain is ramping up. I liked this one as it leans toward exploring/accepting the pain rather than trying to block it out.
Rich C.
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I see this as a good thing…experiencing something new to you, in a different way than your old norm. I am finding myself more direct, more decisive, and demanding more. I hate to use the word demanding, but before I would never ask for anything, but I often had to advocate for myself in the hospital, quickly while I still had someone nearby, so I guess I learned new skills there.
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Hi @DeAnn ,
totally agree that trying something new is a good thing, for me my stroke is an opportunity to reflect on what I was doing before and what I want in the future. Prior to the stroke I was far too focussed on work, which probably had a major influence on my bleed.
Hi @Nigelglos ,
another technique for the muscle pain that I have used occasionaly is progressive muscle relaxation.
Loads of stuff on youtube for this of course, the one I started with is: https://www.youtube.com/watch?v=912eRrbes2g
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I used be on that a long time ago
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I don’t remember how long ago it has been since your stroke. I know this will be very hard to hear, but please do not feel useless. I often feel that way and have a rough time controlling it. We are not useless and there is much hope for that fog lifting. At nearly 2 years now mine has subsided a bit for 5 or 6 hours a day…usually only 2 or 3 hours at a time, but many others have said theirs went away in 2 or 2.5 years. I pray yours will subside soon, and mine, too. For now, I will just be happy for the good hours, and sleep through many of the bad ones.
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Please know I only hope to be helpful in some way, so excuse me if I am repeating something you have already tried…I use a heated blanket that helps after it gets my leg and arm warmed up, but run an overhead fan to try to keep from sweating on the rest of me. I also wear a thick wool lined slipper stocking on my bad foot for warmth. I look really silly, but better than being miserable. I will say the pain is worse with exercise but getting much easier to use regardless. Mine got worse once I was actually up and walking, but so did the brain fog. Seems worse after using it for awhile. Without any proof, I really do believe it is because I am actually healing, otherwise, I would give in to it and quit working to move and think better. If I am wrong, what is the alternative. I would rather be moving and thinking but in a bit more pain than being stuck in bed with a bit less pain… unless they want to keep me completely sedated so I don’t feel a thing. Then I just won’t care. Been there, don’t really want to go back to that. Some people have mentioned having decent results from CBD oil or gummies. I can say I tried, but just once. All it did was make me very hungry. I think once is not enough, but I also think my mind is resistant to it because I have spent many years convincing people to stay away from it. My daughter uses it for pain for Crohn’s disease, and it works for her, at least as well if not better than the other choices she has which are morphine, demerol or lortab. I am not the person to ask about this choice as I tend to stay away from alcohol and drugs, but I am not adverse to medical use when other choices for pain have far worse side effects. It is always a matter of weighing the benefits against the side effects, and in my case the cost. If I use prescribed medication it is covered. Self medicating is expensive.
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Hi @Nigelglos ,
Although the incidence of CPSP is low unfortunately for the two of us (part of the lucky few that survive an intercerbral bleed) then the probability of ending up with CPSP is much much higher than other stroke types that only gets further increased if the bleed is on the right (both of us), involves the thalamus (both of us, remember that CPSP used to always be referred to as thalamic pain afterall) and occurs at a younger age (both of us being 54 at stroke makes us young for stroke, even if the “youth of today” think we’re past it).
Sorry to hear that the fog has been rolling in, I get this occasionally and have found that what works best for me is to just sit in a fairly darkened room and listen to some music as that seems to give me something to gradually bring my focus onto which then gradually pushes the fog away.
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I use music a lot with different tempos for different walking speeds, different moods for different tasks and ever since I’ve been working from home (since Covid first hit) I’ve been sticking vinyl back on instead of digital format to make sure that I get up and move position regularly (i.e. at the end of each side).
Well at least there is a bot of “good” news in the above that at least we’re not alone with some 38,998 in the UK putting up with the same 
make that 39,998!! fat finger syndrome tonight for some reason