Central post stroke pain, again sorry

Hi all
Another post from me about CPSP again sorry.
Just wondering, of those who’ve suffered from it and managed to get it under control, how it felt and happened?
So since Tuesday I’ve been taking 2700mg of gabapentin a day, upped from 1800mg. The last 3 mornings I’ve noticed that when I wake up there’s no pain, nothing at all for first 10 mins or so,then gradually through the day the pain/ severe pins and needles starts to kick in
Could those first 10 mins be sign that the upped dosage is starting to work?
After 7 months of this and nearly a year since the stroke, I’m desperate for a glimmer of hope and solution to the stroke pain

Joey

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Thanks Loshy
All down my affected left side obviously, but in particular in my hand/fingers foot and left side of my face. Don’t have any problem sleeping thankfully
Does the CBD oil make you drowsy or any side effects?
Haven’t even been able to wear my wedding ring for last 7 months or so due the CPSP and swelling in my fingers
Any tips on reducing on swelling?
My wife says I’m not allowed to take ibuprofen cos of current meds I’m on

Cheers

Joey

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Hi @stokiejoey
I am 8 months post a bleed at the age of 54 centred on right thamalus (and extending into mid brain) and have had CPSP in exactly the areas that you are describing since the end of week 1.

Gapatentin didn’t help me (got up to 3600 before giving up) so transferrred to Pregabalin on Christmas eve which is now at max NICE recommended dose of 600 and is at least allowing me to sleep better than I did on Gabapentin (did try a sneaky small dose of self prescribed amytriptaline between coming of gabapentin and starting pregabalin however it just knocked me out - best nights sleep I’ve had since my “brain fart” though).

The CPSP is always there and was really hindering my recovery (couldn’t wear wedding ring or watch either) however about 4 months ago I saw an article which descibed some parts of my pain exactly and attributed it as hypersensistivity (made sense to me as of course I had lost all true sentations with the trashing of my old pathways from the thalamus, no surprise that CPSP used to be called thalamic pain).

Based on this self diagnosis of hypersensitivity ( I have no consultant/physio support) I decided to treat it myself by almost continually stimulating the affected areas. I use a nail brush up and down my arm/leg/trunk/hand and a toothbrush on my face and between my fingers. At first it hurt like hell (it stilll hurts but to a lesser degree) but I’ve kept on with it and about 2 weeks in I was able to put on my wedding ring (again this hurt like hell initially but I just left it on and grew to accept the pain and now I hardly register the pain unless I move the ring).

I still haven’t been able to wear a watch on the left so that is staying on the right at the moment.

The other key trigger to pain that I have is temperature (cold winds being a killer on my face especially) so again in the same manner I have taken to keeping a fan blowing on me for quite a bit of the time which is helping and I’ll keep going with it.

As far as how this better control of pain is helping my recovery, before I started my hypersensitivity training is could walk about 400 m outside with a single stick. This morning I’ve just walked 2 miles carrying a telescopic stick (which I’ve never used in anger since I bought it but at least I have it in case and also people spot it and give way occasionally). Now I’m not saying that I’ve found a cure here, whilst I can walk quite a way now the actualy gait is still far from perfect and sometimes could be described and falling in a forward direction and catching myself each time.

CPSP was just one of my challanges so the other key thing that I’ve been doing is about 1.5 hours of exercises every morning with other exercises during the day (morning based aroung balance predominantly and other exercises in day focusing on dexterity/touch etc.)

Rich C.

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Thanks rich and all the best with your continuing recovery. Sounds like you’re doing really good :+1:
Having seen a stroke consultant last week. He is organizing some sensory physiotherapy for me which sounds similar to what you have been doing

I can walk unaided and we live on a steep bank and Im capable of walking down it to get a newspaper, though the walking back up tires me out :grin:
I’m trying all different things in my exercises. Just bought some boxing gloves and pads. Got hand gripper, resistance bands and wrist weights
My biggest problem is my eagerness to drive again which. I think I’m close too if I can get the stroke pain under control
I’m seeing my doctor in couple of weeks for a GP review and perhaps he will up the dose or add something to it
I hate the fact that me and wife and daughters can’t plan anything for the summer cos of my condition and the uncertainty of my progress in the coming weeks and months

Joey :+1:

Hi Joey @stokiejoey,
I think that I’ve now got every bit of exercise equipment that amazon sells :grin:

Great to hear that your independantly mobile, I found that to be the first hurdle and from there it was just adding on a bit more distance each day not matter how much it hurt. I dug out an old “smart watch” that I had from the days when everyone was saying that you should walk 10,000 steps a day and just made sure I was doing more each day without really caring about how far that was initially.

I hope that the appointment with the consultant goes well and that you get some profession assistance that helps.

I too was eager to get back to driving, not only for the ability to get from A to B but also because I just like driving as I’m a bit of a petrol head.

I did the right thing with regard to informing the DVLA at end of the first month but really wish I hadn’t due to the time that it wastes in getting back to driving. Throughout the whole process I kept checking the status of my licence and it always said full licence held.

DVLA asked the GP to fill out a questionnaire which he did in December and finally in March DVLA wrote to me saying that I needed a “medical examination” with my GP.

I arranged that as soon as I could and answered the questions he asked like “could you perform an emergency stop?” answer “of course I can, my right leg is not affected” GP looks at me and says “good point!”. So the GP sent back his findings that there was no impediment to driving as he agreed with me that the pain is self limiting i.e. if it hurts to much then I’ll stop and have a walk around.

DVLA finally wrote back to me about 4 weeks ago, after I chase a few times, saying I was good to go with the normal proviso of "you are reminded that if you are aware of any impediment to the safe operation of a motor vehicle you must not drive " but of course this is the same proviso that applies to every holder of a licence.

So now was the time to decided what to drive as I have 5 cars, I did warn you that I’m a bit of a petrol head.

Sat in my primary car (Manual Alfa 159 sportwagon) and decided that the clutch hurts a fair amount (on the foot and in the calf/thignh and that perhaps an auto would be better. That narrowed the pool down to one car. And that car is probably the most most awkward to get in and out of being a smart brabus roadster (low 2 seat softop).

A few practices and I worked out how to get in and out so did a few local 1 or 2 mile trips before trying a longer drive around the local area for about 50 minutes (I set this as my test limit as I know that it would take about that time to drive to either the office or the local hospital in Southampton for the voccational therapy that kept being offered to me and then cancelled). It hurt to sit for that long but I just accepted the pain.

As luck would have it, the days after trying this longer duration the hospital contacted me a offered me another slot an last Tuesday I drove over there for my intro session with them and will be going each Tuesday for a lkittle while. the drive itself was great as the route takes me straight through the New Forest and with it being such a sunny dy I even managed to get the roof down for the drive back with really did mentally blow some of the cobwebs out.

We have scrubbed any plans for this summer (we don’t generally plan too far ahead anyway) and if things improve faster then I realistically expect then perhaps we will be able to get somewhere but if not then we’ll just enjoy the weather here.

Take care

Rich C.

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Fantastic that you back driving again. Love the new forest, stayed at Bashley park in the past.
We bought a new Peugeot suv last year just prior to my stroke, so I’ve hardly driven it!( Basically my wife’s car now :wink:) 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

Oh and I’m already taking on board your advice from previous post about touching the affected areas of my body where stroke pain is strongest with different sensations

Thanks again

Joey in Stoke :+1:

so glad CBD helping you out, loraine

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@stokiejoey wow it is a small world, I’m less than a mile from Bashley Park :grinning:

Moved down to this area from south wales (hence the screen name, read it backwards and you’ll note that it’s not actually welsh) when I was about 5 so I used to sneak into Bashley, Naish and Hobure Parks with my mates during the school holidays to use the arcades and pools. Eventually ended up working in all three of them from the ages of about 14 to 16 in the early/mid eighties

I hope that the “road sense” kicks back in for you, I too was a little worried about that so i drove the car up and down the drive a few times whilst I was waiting for the final letter from DVLA and then the first trips out were both short and timed for quieter times (i.e. avoiding school kick out times etc.). I found that everything just clicked back in within minutes although I’m probably not driving with quite as much “panache” and aiming for the apexes of the bends on B roads as I used to but that is just down to the fact that pushing on too quickly means that there is more seat bolster to torso pressure in the corners which hurts more. :grimacing:

@Loshy great to hear that the CBD is working for you, It’s something that I’m keeping in the back pocket at the moment so if I do need to try that route then I’ll reach out to yourself and @pando as you’re clearly the site gurus now :woman_superhero: :man_superhero:

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llareggub, We used to holiday at Bashley in Sway with my parents and our touring caravan. Then me and wife bought a caravan few yrs back and went there with our daughters. Took them to Brockenhurst, Hythe ( we saw the QE3 moored up in Southampton), Bournemouth, Southbourne etc. Beautiful part of the country where you live. I’m jealous! :wink::grinning:
I’m finding your replies and recovery very helpful inspiring and motivating

Thank you :+1:

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@stokiejoey [quote=“stokiejoey, post:11, topic:34560”]
I’m finding your replies and recovery very helpful inspiring and motivating
[/quote]

Glad to hear that I’m still of some use :laughing:

You’ll get there, just got to keep plugging on cause no one else is going to do it for you

Take care

Rich C.

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This isn’t directly related to cpsp but this is looking at a refinement of cannabis oil and it does mention nerve pain and chronic pain Early days though.

After all, pregablin, amitriptyline etc were not produced for cpsp either

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Hi Rich
Right thalmus for me to at age 54.
CPSP started in march 22 3 months after stroke with bit of face tingling, more the day after. Complete loss of sensation down left hand side on two separate days not long after,nothing found.
Sensation is often now significant pain, it’s morphed on from tingling to burning to a sting. No aids when walking, pain and stiffness in the hamstring/top of calf is biggest obstacle.

With what you have done, has the pain plateaued? Being honest, I’m not sure where mine is going. The journey direction is not good
Cheers
Nigel

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Its first start on Diet Exercise blood pressure and cholesterol levels

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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 :blush:); 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 :joy:. 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.

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Interesting that you didn’t have those initial normal symptoms. This is my story.
I work from home and was on a call presenting to nationwide. For whatever reason I was very nervous about it and my underlying condition of conn syndrome means my adrenaline levels went nuts. The call had nearly finished and I thought I was having a panic attack. Some tingling down eft side of the chest,my arm slipped off the chair arm twice, hard to understand what is being said but not much else.
Came to stand up at the end of the call and couldn’t move my legs. Couldn’t hold my arms up. Shouted to my wife who fortunately was in. Still hate that chair 16 months on.
Ambulance was fairly quick.Sick in it, heinz tomato soup everywhere. Look like had massive trauma. Realise I knew next to nothing about a stroke, didn’t know you could die from it. In the ICU and a doctor asked me did I want to be revived ? All of a sudden I’m thinking, **** this is serious. Thinking if I do die,all the things I should have said. Lying there resigned to it. Full of drugs. Terrible arm pain, feels like it’s broken. More morphine, I just want a massage,more morphine.
Got moved to the stroke ward and it’s like the wild west. Understaffed and nurses getting threatened with violence. I’m lying in bed watching a real life horror film. One patient gets the metal arm of his chair and is swinging it at anyone he can reach. Swearing, shouting, offering to punch anyone who is near and the TV’s for the older nearby deaf guys is so loud. Look across and they are asleep and not watching it. Just great.
I saved a nurse from a beating by being alert enough to press the alarm bell on the handset for help to arrive.
So desperately tired, get fitted with these pressure legs to prevent a clot on both legs. Couldn’t sleep with them on. 4 days of no sleep,really low, desperately unhappy. Wife gets agreement to just be on numb leg and wow did I sleep.
Not been to the loo properly since the stroke. Nurse gives me enema and walks away. Lying in my own s*** for maybe ten mins, wow there’s a lot but strangely its nice and warm. Get a pipe tied to my cock, total waste, any kink in the pipe and bed gets soaked, never did work out where pipe went.
Get moved out of the Alamo (wow do nurses deserve a pay rise) and own room and recovery begins. Little itches as feeling comes back.Helped to take first steps holding hands but no where near enough physio. Finally make it to recovery unit after recovery unit agree to take me but in isolation in case I have covid. Was close to leaving 4 times but another COVID case would stop me.
Recovery unit doctor (why tell me this ???) Tells me I am really lucky, with my stroke, 25% die,25% so badly damaged end up in a home, 50%, never get told what happens to them but assume all ok and just get better, do they, no one seems to know or won’t say.
All goes well, loving the challenges. Physio brilliant,she seems to know what will make me fight it
In corridor and it seems to stretch for ages. “Do you want to walk back to your room, I think you can make it, do you ?” Feel like a real like science experiment as more and more feeling comes back. Walking on my own, not graceful but no sticks. Back down to earth a bit as bloke opposite dies. Second stroke. But for me, I have got this nailed, you can f off stroke I have got you beat…with this improvement going to be ok (no one mentions the 3 months thing) and then one day, for 2 hours tingling in the face. Next day 7 hours. Starts in arm and leg as well. Recovery team keep telling me it’s stress. No its not, it’s not there when I wake but starts as soon as I move my face. Anyone going to explain cpsp…no seems not.
Then one day, all feeling goes on left hand side, CT scan, nothing found. Leave the recovery unit in may 22 and by Aug 22, realise tingling,burning, stiffness very gradually increasing. Still improving though, can even do a short slow jog. Exercise bike going well.
Can live with this.
Early 23 difficult to breathe, realise not done a breath without thinking about it all day. Knackered, call an ambulance but none available, by time one is, 5 hours later symptoms eased a bit. Think much later it was cpsp spreading. Fortunately it goes away.
Cpsp just gradually increases. Biceps feel like trying to squeeze arm off. Hamstring so tight. Face feels like nettle sting or sunburn. Not so bad when round by ear but expanding round to and in the eye, horrible.

Of late, every day, around 6 ish cpsp not so bad. Often dizzy, hard to get out of bed in a morning. Hamstring so tight. Leg goes numb at times,head thick. Still not sure 100% where left hand side is but better. So tired, sleep every afternoon. Find out more about cpsp. what no known cure. Oh bollocks

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It starts with blood pressure and migraine

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I had a right sided hemorrhagic thalimic stroke and developed central post stroke pain a few months later. It has been a year and if anything, things seemed to be getting worse despite many attempts at remedies, meds, therapies, etc. I hope you find relief from the pain and stiffness. If you do please post anything that might work.

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You’ve had stroke pain for a year or a year since your stroke?
Have you managed to drive again or go back work or return back to a normal life?
This is the problem with strokes ( CPSP) everyone is different and recovery times are different for everyone. No set solution that would work for us all.

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The Left or right side of the brain

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I developed the pain syndrome four months after my stroke so it started in September. I was doing well before that. I am unable to work more than a few hrs a week due to the pain but I can drive. The more I’m moving, the less pain there is. Even though I am able to do some movement while working, the pain intensifies to a point where I can burst into tears. My symptoms are tightness like something is squeezing my left arm and leg, Right side strokes are more suseptible to development of cpsp.

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