He was quite clear it was a brain issue and wrote to my go with two possible brands, having now tried them I have used all available and nothing really works, a consistent use of paracetamol built up aids a good night sleep but that the only help until my brain work s out my revised sensory cortex that was damaged in my right brain side hence the left issues.
1 Like
I’ve now got appointment on 25th. Will post on here when I’ve seen him 
2 Likes
Hi stokeyjoe I had the stroke in January 2031 and was back working in august of the same year, it helped my brain and sense of worth but eventually was made redundant as I couldn’t attend site on a regular basis and the manager required me on site. Oh well their loss the whole department imploded and left the boss was made redundant too, oh dear.
4 Likes
We don’t want to overlook any of this information
Hi Joey
I have started reading this recently. Loads in there about medication from an NHS doctor.
Cpsp is more likely it seems if the stroke is on the right side of the brain and if you are younger. He describes it as a home alarm with a faulty sensor. It’s going off when it shouldn’t, going off too often etc
If you know it’s a sensation and not actual danger, can you convince yourself to ignore it ?
Has helped me to under stand the possible medicine journey.
Interesting the nocebo effect. The more you are told about side effects, the more likely you are to experience them.
Thanks I wil look into it.
Cheers. Kind of makes sense. I was only 47 last June when my stroke happened. A right hemisphere ischemic following on from a TIA, which I wasn’t aware of the day before. I’ve had CPSP now for 7 months. Got an appointment with my old stroke consultant on Friday, and fingers crossed it will finally get sorted in the coming weeks
I’ve been trying to describe to my 2 teenage daughters, what it feels like, and it’s either really bad pins and needles or burning sensation like someone is stand to my left holding an electric heater
Cheers
Joey
3 Likes
It’s quite difficult I have found to describe it. In the end I thought the burning was something like sunburn, almost like a sting like in feeling.
Up until around 2 or 3 months ago, this fast pins n needles and sun burn changed so that at times it has become proper pain. The pain in the biceps in particular
I can’t find an answer to this, this is dead cheeky, wonder if there is any chance you could find out for me ? Much obliged if you can.
Does the severity of cpsp keep increasing? Will it plateau at some point ?
3 Likes
I would describe the worst of mine as burning cold, or freezing hot. Like going into very cold water for a swim.
1 Like
Hi, has yours changed in severity at all over time ?
Face wise mine never seems to be in the same place or severity two days running. Today it’s round by my ear and neck, sometimes as far over as my eye
2 Likes
I don’t feel the tightness and heaviness nearly as much or as often. The tingling has not subsided, I just overlook it as much as possible. Weird thing, someone here suggested wearing ankle weights to get stronger as I walk around the house. I have been trying it, and strangely, that seems to give me a little more balance and relief from some of the tingling in my left leg.
1 Like
Thanks balance is something I’m okay with it’s more left leg sensory or left arm internal cold feeling and facial numbness.
2 Likes
You could try wearing them on your wrists too to see how it helps grounding your.
I wore them on right wrist to help with bringing my stroke arm down from my chest to my side. And then it helped to keep it down whenever it had the urge to return to my chest.
2 Likes
Keep smiling, stay strong, and I know this might sound stupid, but I sometimes think “in another three seconds I will have forgotten what I was thinking about & if I sing a song/read a book/try doing something new, I’ll be okay again for a while.” The other year I read every page of the old and new Testaments of the Bible. I would read a chapter (if not too long) each night. I don’t remember it, but I know I’ve actually read it. I also bought a guitar and learnt how to play (in a fashion). Think of something - a challenge - and plough on. If you’re not patient, how about learning a new skill? Perhaps the concentration will take your mind of other things? I have a peaceful room where I meditate at night and have crystals etc which are very peaceful I hope you find your bit of peace too @mrfrederickson 
take care, John
2 Likes
Every since I had my tias it really changed my settings
1 Like
Yes absolutely, you are changed irreversibly, and lose the sense that you are carefree. Your body is broken your mind struggling to comprehend what has happened and how long it’s going to take to recover, a bit of an overwhelming process. Take care
2 Likes
Creature is our all minds
1 Like
A really beautiful and supportive reply to this post. We need more people like you in this world.
3 Likes
Hi @Lindareast - what a lovely thing to say! Everyone on here has some ‘golden nuggets’ that they can offer to others. I have found that this group of stroke survivors have been the best support for me personally that I have known, and I know we will always be here to help each other. Take care John aka Bert
3 Likes
Where i live at people are ignorant says they hope it won’t be her or him
1 Like