Hi Nigel @Nigelglos
Well it sounds like we have had very similar “events” but different experiences as far as sensations and CPSP goes so far. Sorry in advance for the long response but hopefully it is of some use.
With my “event”: I woke at 2.00 a.m on the 28th Sept 22 with what felt like someone shoving a red-hot poker through my right eye right through to the back of my skull. I pretty much knew straight away what was happening so got my wife to do the usual face droop (none), smile (normal), arm drop (normal) so I got up to take some paracetamol (like that was going to help!!!) and within a few steps my left leg went and I started slurring (like I was a good few pints in).
My wife phoned 111 who asked for the same checks (which my wife immediately responded to) and they said an ambulance was on its way (it’s a 20 mins drive, without blues and twos, from us to A&E). By the time the ambulance arrived, 5 and a half hours later!!, I had absolutely no feeling on my entire left side. It meant that I couldn’t even sit on the edge of a bed because, as my brain was getting no sensation feedback from my left hand bum cheek, it thought that there was no bed there – result - I would fall onto my left side. I could however still command my limbs to move, with no strength differential between sides, but just didn’t know where they were (so proprioception was also shot by then).
At the end of the first week in hospital (lying entirely on my unaffected side to stop the continual sensation that I was going to roll out of bed) the pain started. Initially around my ribs, then over the next week it extended down the rest of my trunk, into bum/leg/foot; shoulder/arm/hand; neck/face. Whilst this seemed pretty miserable initially I decided that, well if pain is the only sensation that I’ve got then lets use it to try and sense the world. So I started working with the physios using the level of pain feedback that I was getting to gauge if, for example, my foot was on the ground and if so was it bearing weight (did the same with hand/arm exercises). By the end of the third week I was able to “walk” the 10m distance that I knew was the “get out of jail” test using a quad stick.
Once back home the pain continued to get more intense (couldn’t really sleep for more than about 20 mins naps) so various drug swaps and dose variations got me to Pregabalin at 600mg that is at least taking the edge off enough to sleep and keep pushing on with the rehab.
Worst areas of pain for me, and what I’m doing to try and desensitise are:
Always burning and sharp pain to touch: head (up back of neck then over back of head in a hand shape), face (up front of neck, through ear and radiating around both eye socket/forehead/cheek and mouth extending into gums and teeth) – massage with “vibrating personal massager” (hint - if you order one from amazon then add the amazon packaging as otherwise you’ll get an odd look from the delivery driver 
); have a fan playing on areas when sitting (now that I’m driving I’m being even more cruel to myself and have the A/C blowing full blast on me as I know that the cold really does heighten the pain): use Sensodyne toothpaste.
Always aching/tingling/stabbing and sharp pain to touch: torso (strait down lats and around ribcage and up into pecs/shoulder blade), arm (each end of biceps/triceps, both sides of forearm and anywhere on hand), leg (top of thigh at rear going into glutes, knee, calf and anywhere on foot except toes where I still have very little feeling) – vibrating massager, brush with nail brush (toothbrush between fingers and toes), massage with moisturiser (heightens sensations), walking (I always have one ear bud in listening to music when walking to allow me to concentrate of something else, in a similar manner to your looking at the clocks trick or the water cup technique that others have suggested – one ear bud only because it hurts too much in my left ear anyway and it allows me to still hear traffic noise/cyclists coming on the path behind me).
All of the above is being done in conjunction with the usual exercises for balance, proprioception and stereognosis (2nd physio suggested that I move the stereognosis exrecises on from a bag with random things in it to identify to placing same objects in my pocket until she realised that I couldn’t even find a pocket with my left hand 
. Also, who invented buttons? what a ridiculous idea they are!!)
So why am I doing all this desensitisation? well my theory (that I hope is a little better than the monty python dinosaur theory – they are thin at one end, fat in the middle and then thin at the other end) is that the stroke took away all of the pathways that I had previously spent years developing regarding sensations/pain/proprioception. I know that the new pathways are being established (they must be because I had absolutely diddly squat a few hours after the bleed) but as these new pathways don’t come with any experience then the brain is just playing it safe and trying to protect me by routing all of the signals (be they driven by external factors such as touch/temperature or internal proprioception signals) to the pain centre.
So it is these new pathways that I have to both encourage and teach, for example at what level of pressure does touch become pain? Or what temperature is too cold/comfortable/too hot (think goldilocks here)? Or is this an externally driven signal that I need to worry about rather than an internal proprioception signal that isn’t really pain and that, whilst I need encourage and be cognisant of, can be suppressed into my sub-conscious (I really do believe that some of the pain that I am feeling within my muscles are actually proprioception signals as I also “feel/sense” every muscle movement on the left but not on the right).
Now the difficult question of is it working for me and is the pain decreasing/plateauing/rollercoasting – I think that it is working and that the pain is decreasing but there is still a hell of a lot of pain and that on the current trajectory it’s going to take many many more months to supress it to a level where I don’t notice it, whether at rest or moving, let alone consider dropping the meds down (that I know are supressing that pain). I of course have no external reference that I can use to prove this, yes my wife says my walking is better and my smart watch is telling me that I’m walking further (2.5mile walk this morning), and there may be so sort of placebo effect going on, in that I am doing this because I think it will help, but after all it seems to be working and it’s not that any of us have actually got anything wrong with us – it’s all in our heads!!
Rich C.
) it’s a manual, so I’m going have to see how I get on, when I do start again. I’m hoping after a year of not driving it’ll all come back to me and 30 yrs of driving experience hasn’t gone out the window
