My pain is not terrible. It’s there but I can deal with it for enough time to exercise or do some things I need to do. I do take Duloxitine 60 mg, as well as Gabapentin. I have been going down in dosage on G, because I don’t like the extra fog and dizziness I get from it. I hope to get rid of it completely in January. The D is prescribed for anxiety/depression, it definitely works for that and for me without issue unless my strange dreams are from that. They are strange, but not unpleasant. I don’t seem to have any side effects from the D.
From my standpoint, it is still hard for me to read for long, however the catch 22 is that I generally need the long version to ensure I correctly understand. I just stop when I can’t read it anymore and pick it up again during the next good spell.
Well today I’ve put my wedding ring back on. Hopefully a good sign that swelling in my fingers has gone down. The stroke pain is hit and miss. There’s time during the day it isn’t too bad. I’m also doing what I was told by sensory physio to run my hand thru hot or warm water then run it through cold. I’m finding cold water doesn’t hurt like it used too. Hoping it’s a good sign that the amytryptoline are slowly working
After watching my favourite YouTuber today videoing his holiday to Menorca, I think need to set up go fund me page so I can have a holiday abroad
Hi Joey @stokiejoey ,
great to hear that you’ve managed to get your edding ring back on, hopefully it’s not causing too much pain (mine still causes a bit of pain if I move it but generally, after a few months now, it’s almost unnoticable). Been wearing a watch for about 1.5 to 2 months now on the affected side and although it is more painful than the ring it seems to be following the same patternd so I’m keeping it on (to be honest I’ve now got a very noticable tan line from the watch so I have to keep it on ).
Spotted that you mention that cold water isn’t affecting you so much these days, do you think that this is down to anything specific that you’ve done? Would love to know if it is as anything cold still causes me loads of pain.
Thanks Rich
I’ve only just noticed that im taking 20mg of amytryptoline a day. Seems a low dose but just wondering if anyone knows if there is still the possibility of taking a higher dose if need be combined with the 2700mg of gabapentin I’m on? Been on the amytryptoline for about 4 weeks now. I do feel like there is some benefit but know I’ve got give it a few more weeks before I can contact my doctor again but hope I’ve got that possibility of getting a higher dose which would/could reduce the pain further and make it possible for me to be basically pain free.
Cheers👍
Joey
Thanks Nigel. To be honest it’s hard to know where I’m at. Earlier today I was watching some episodes of the new Full Monty programme and got completely engrossed in it and didn’t notice the stroke pain( well worth a watch. Very strange but fascinating) but then I get up to go in the kitchen and can feel it burning in my lower leg. I just don’t know anymore. Got more physiotherapy tomorrow so I’ll just see how that goes and try get some advice from them as well
Oh and just to add I know what you mean about “handbag arm” I’m trying to make conscious effort to correct that and my poor posture
I’m loving that term for the arm, that’s exactly it isn’t it
@stokiejoey I did a lot of carrying weight around with me to help pull my arm down. Because we were in lockdown at the time, I did a lot of carrying anything weighty while out on our walks. Sometimes we’d have to get milk on the way, so I would always carry one of those 2+ltr cans and gradually over time, started doing bicep curls with them all the way home
I nearly always worse a wrist weight or two on my stroke arm at home. Particularly as my arm tended to creep back up to “handbag arm” position as I climbed the stairs or when I’d forget it. Coming down was another matter as the banister was on my right stroke side, so I’d just sit on my butt and shuffled down again. The weight was good reminder, kept me aware of it and what I should be doing for it.
I’ve always had poor posture and been very round shouldered. Think it stems from lack of confidence when I was a kid. I had to explain to the physiotherapist last week that this standing fully upright with shoulders back is something alien to me but I have been trying really hard this last week or so.
When I eventually do go back to work, they’ll never be able to call me Quasimodo ever again!
Stand tall and walk with pride, you’re a stroke survivor now, a warrior It’ll do your back good for sure and the more you do it the stronger the muscles will get. And better able to support you naturally, so that you won’t have to keep reminding yourself
Hi @Nigelglos ,
One of the reasons why not all studies show the same results surely has to do with the fact that no two strokes are the same.
From personal ongoing experience of CPSP I know that for me Gabapentin did nothing but Pregabalin takes the edge of it even though “studies” show that Pregabalin is no more effective than a placebo (although these studies don’t give details of how many people saw relef from its use). As you mention above, Amitriptyline is clearly proven to be effective - not for me it wasn’t!!
Well at least the massive variety of our “events” and resulting experiences makes us all special
On the Amitriptyline front, I wasn’t formally prescribed but had access so in one of the periods when I had ramped down from Gabapentin I thought that I’d give them a go (took 1/2 a tablet from my wifes normal 3 tablet evening dose). It simply knocked me out and left me feeling like a zombie the next day (although to be fair it was the best night’s sleep I’d had but of course was not condusive to normal living).
I’ve maxed out on Pregabalin (600mg/day) so I know that the pain relief that I’m getting (enough to allow me to sleep, generally) can’t be increased however as pain is the only sensation that I have then I couldn’t function if I didn’t have pain so I wouldn’t want to get rid of it totally.
Hey up Nigel
I did PIP assessment over the phone. I had help from the lady from stroke association who was with me while phone was on loud speaker, and like already said, you have to say how it is on your worst days. Took a few weeks before you get the results of how it went.
Can’t remember exact award but I ended up pretty much getting full award for both
How are you feeling now Nigel after your acupuncture?
I’ve had my dosage of amytryptoline upped to 40mg a day along with the 2700mg of gabapentin I’m already on. I’ve also got more physiotherapy sessions next month for the ataxia I’ve got. I’m now exactly a year on since I was discharged from rehab/hospital
I would be very interested in anything that can help someone else with the pain. Yesterday, after only doing my usual two hrs a day of work, my affected arm was purple and the pain was excruciating. I deal with this and leg stiffness combined that has been diagnosed as additional central post stroke pain so i am unable to work more than ten hours week and am desperate to hear of something besides what I already tried (baclofen, gabapentin, tinanzidine, etc)
Hi Nigel. I’ve just had my amytryptoline upped by 20mg a day last week. Do you have to give it up to 8 weeks to see if it’s working? And can a higher dose go the opposite way way and make the stroke pain worse?
I’m so up and down with it at the moment it’s unreal.
I’m now approaching a year since the CPSP started.
Cheers
Joey
Thanks Nigel
I’m on 2700 mg gabapentin and 40 mg amytryptoline ( up from 20 mg last week)
I’ve got be more patient to see if it’s working or not. I’m lucky the pain doesn’t affect me sleeping. But when I wake up usually takes a couple of minutes for the pain to kick in. But since I was given the amytryptoline on top of the gabapentin 8 weeks ago, there’s defo been a change and it’s eased a little. That’s why I’m hoping the higher dose I’ve been given will ease the pain even more🤞
Infact my wife has just been telling me off cos I’ve got no patience and that I’m too quick to want everything to return back to normal. I’ve got more appointments of physiotherapy in the next couple of weeks for this ataxia I’ve been told I’ve got on my affected left side as well.
No side effects…yet. just see how it goes on the coming weeks on this high dose.
If I think on ill ask about hydrotherapy next week when I’ve got physiotherapy at one of our local hospitals. I try to use my affected left side as much as possible in normal everyday use but but I’m right handed and didn’t use my left hand much even before the stroke.
One positive, is the football season starts tomorrow and although I can’t go watch my beloved Stoke City I’ll have radio on and soccer Saturday on sky sports
).
It’ll do your back good for sure and the more you do it the stronger the muscles will get. And better able to support you naturally, so that you won’t have to keep reminding yourself 
.