Hi all i am 1 year post stroke. I have been on gabapentin now pregabalin but stil suffering with hypersensitivity and tingling constantly. Has anybody been through this and any yideas what helps
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Thank you. I will definitely talk to him. Someone else mentioned amertriptyline x
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Hi Helen
Yes, this is possibly the same as what I am going through
I am 7 months post stroke and have numbness + tingling in arms and feet (and other areas)… it’s sensation / awareness / touch coming back
I think it’s possibly a very good sign ; not something to fear
When did your sense of touch return? if it did return.
Good luck, Roland
ps. I actually encourage the sense of tingling with vibration guns and boards
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Hi, I’m currently 10 months post stroke and suffering from CPSP I’ve tried amytryptoline and currently on 1800mg of gabapentin a day( which isn’t really working to be honest
Thanks to help from the stroke association, I’m being referred back to my old stroke consultant ( is that an option for you?), which I’m hoping will finally sort me out.
Best wishes 
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I was on the highest dose of gabapentin and didn’t think it was making any difference until i weaned off of it to go on pregabalin. I am still under a consultant who i am meant to see every 3 months but its usually more like 6 months. I do use a flannel to rub my arm but still no better. I do use a lot of distraction techniques. Also is central stroke pain the same a hypersensitivity.x
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On May 6th it’ll be 6 years post-stoke for me - and I get a bank holiday to celebrate that fact!
Anyway, last year I took amitriptyline for around 5 months, 10mg for 3 months and then 20mg. Unfortunately, it did nothing for my CPSP/neuropathic pain/paresthesia/neuralgia but, wow, did I sleep. The trouble was that I was waking up really tired too, which I hated.
I was aware of some sort of numbness after my stroke, but the CPSP/neuropathic pain properly kicked in a few month after and got progressively worse over a period of 2 years or so. I had been living with the pain it but found that it was grating me last year. It’s a constant and incessant pain (a tolerable 3 to an unpleasant and distressing 4) and gets worse (an intense 6) at different times of the day whether I’m sitting still, standing or walking. In other words, even the constant and incessant pain flares up and gets more intense, and during these times I have to take time out until the pain (an intense 6) passes and reverts back to a tolerable 3 or an unpleasant and distressing 4.
Nevertheless, I stopped taking amitriptyline and have chosen to live with my pain and try and find ways to distract myself from it. And as I write this the pain has hit an unpleasant and distressing 4. Epic. Time for a distraction methinks. Perhaps a short walk to the pharmacy to get my clopidogrel and statins.
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No, no different. When I first took it I thought it was easing the pain, but I think I was more hoping/believing that it was doing so when it actually wasn’t. So I found it ineffective.
No, the pain levels haven’t stabilised. Either it’s a tolerable 3 or an unpleasant 4. But it’s when it flares up to an intense 6 at different times of the day that’s the worst. Have you ever had pain and needles in your foot so bad that if you tap the foot there’s that intense, rushing feeling where you just is as still as possible, wide-eyed, until it passes? That rushing sensation is that intense 6 for my leg (from just above my knee to my foot) for around 10-15 mins each time before it settles back to either a tolerable 3 or an unpleasant 4.
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Yeh, my right side feels slightly anaesthetised. I get pain in my hand and forearm, too, like shooting pains and dull aches, but paracetamols and massaging and playing with it occasionally brings relief.
I haven’t tried anything else. If pregabalin or gabapentin cause drowsiness / sleepiness like amitriptyline then I won’t take them. That’s not to say that you shouldn’t take them - you do what works for you. But I found amitriptyline was bad enough.
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That’s a great question.
Not sure how I manage it, if I do at all.
Distraction kinda works. I’m not working at the moment * and am ridiculously thorough on job applications, OCD-like. But when an interview has been scheduled, which can be anytime between 1 week to 1 month away from the application, I tend to spend the time playing lots of potential questions and scenario-based questions in my head. They’re full conversations played out in my head. I’ve also turned these conversations into scripts. I’ve got pages and pages of questions that I have been asked in unsuccessful previous interviews so I can have a better answer next time I’m asked the same, or similar, question. Also, as my background is in IT (infrastructure/cloud as opposed to software engineering/programming), I try and keep up to date with the latest technologies and trends, so I’m always learning and trying to maintain some sort of relevance, even going over what I’ve done in the past to freshen up on those skills. So I’m busy being busy maybe for the sole purpose of being busy.
In between this I maintain the house the best I can (my partner does the things I can’t: stuff that involves arm movements that are controlling and smooth and not shaky, jerky, clumsy and uncertain like my stroke affected side), go on walks occasionally, and maintain my physio and resistance programme at home.
But in terms of mental health, we’ll, I still get really cheesed off that I’ve had a stroke becuase I probably haven’t fully accepted it, even after 6 years. Cheesed off that I’m not working, so much so that the following day after I hear or read the words ‘on this occasion your application has been unsuccessful’ I weep while taking a shower. Cheesed off with my struggles and scuffles with aphasia. Cheesed off now having written this. I think finding work will help a lot, but I need something flexible and hybrid, and definitely something that doesn’t involve talking all the time or going to clients’ sites most days.
- I was made redundant 15 months after my stroke so I chose to take a year out and learn more about cloud tech stack, but shortly after my year out the pandemic swept the globe, which didn’t help matters.
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That’s a good work scheme, fair play.
PIP is not means-tested and can be issued whether you’re working or not providing you have a long-term illness, disability or mental or physical health condition.
That’s a good story and makes sense. Focus can become so intense that it distracts from other things. It’s just a shame that it’s seemingly impossible to maintain that level of focus 24/7.
Yeh, I saw an article about that study. A larger study is needed to determine its findings.
I never gave acupuncture a thought. I’ve got a TENS machine but it makes no difference. But acupuncture, huh? Hmmm…
Hi I’ve tried acupuncture (10 sessions) i didn’t find it helped. Maybe i should try it again now im 13 months post stroke. I 1st had it after 3 months but couldn’t really feel anything.
Yes i have been reading about these findings. I am on 600 mg of pregabalin and 25mg of Amitriptaline. I am probably going to wean myself off them as the CPSP is still bad.
I am trying different distraction therapies.
I have only seen my doctor once since my stroke, its all done over the phone. Which is very annoying as he cant see how swollen and purple my hand is over the phone.
Keep us updated if you find any more research results please x
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Hi Nigelglos
It doesn’t seem to affect me in any way. Maybe I’ll feel the cpsp worsening as i reduce it.
A friend of mine is going to try hypnosis, i will see how they get on.
Also i am going to try an EMS muscle stimulator.
Very strange that you feel it reduce at 4.30. But i do exactly the same as you when i wake up. If only. Maybe 1 day eh.
I will update you on all of the above x
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Hi nigel, i am sorry to hear that you arent feeling any better. I know exactly what you mean. So since my last message a lot has changed not for the better unfortunately.
I am now on 3600mg of gabapentin 75mg of Amitriptaline and 60mg duloxetine. I don’t think my consultant can do anything else. She has told me that she thinks i will always have CPSP and we’ll try and manage the pain with medication. I am going to try and start weaning myself off some of this concoction of tablets. I have been reading that the medications i am on don’t work for everyone. I have yet to meet anyone that it has worked for. I still find distraction helps to a degree. Like when excersing, chatting with friends and doing some housework, etc, helps but a soon as i try to relax its back again. Please let me know how you get on with the neurologist.
Can i ask if you were or still are using osthetics, also how is your mobility
Best wishes
Helen
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Hi Nigel
I hear you completely. I feel like they are using me as a guinea-pig sometimes 
I haven’t heard of deep brain stimulation! Sounds scary.
Have you joined any clubs for stroke survivors?
I’m not sure where you are living, but i am in Milton Keynes and have joined a group and a swimming group which helps a lot. Just to meet up with people who understand what a struggle it is.
I never had any walking aids either. I have been thinking recently that i should have gone down that road as i have drop foot.
What happened to your adrenal gland to cause a stroke.? We just dont know what is going on in our body.
People ask what its like having a stroke and all i can say is that it is like hitting a brick wall, and life as i knew it has gone
My theory about the medication is to take what my consultant recommends if it doesn’t work then i will gradually come off of it. I dont look too deep into side effects as i would prefer quality not quantity atm.
It does seem i take 1 step forward and 2 backwards some days. I was 54 when I had my stroke. Have you got any kind of support?
Keep in touch
Helen
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Good
Yes indeed 54 ia a dangerous age it would seem.
Wow you really have been through the mill.
Yes i have had experience of this waiting game while waiting for the outcome of biopsies. Very stressful.
So when you have surgery will that improve things. (Blood pressure etc) ?
I am pretty much at that stage re doctors /consultant. I am no longer having face to face appointments with the consultant just a 3 monthly phone call.
I have started using a ten’s machine when the tingling gets too much. It is a bit of reverse psychology although the machine is tingling it distracts from the neuro tingling/pain. I also use a compression glove which helps.
Have you heard of a charity called different strokes? It has been great for me. I go to a group where we do gentle seated exercise then a cuppa and chat. I have met some amazing people. They have groups all over England. I cant recommend them highly enough.
I look forward to hearing if your new medication helps.
Fingers crossed 
x
Keep in touch
Helen
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*that was meant to say "good evening "
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Hi I’ve been prescribed Pregabalin but still get nerve pain & pins & needles. No idea what to do next to help.
Thanks, I’ll take a look.