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 don’t want to dampen anyone’s hopes but my own experience was that this started about 3 months after the stroke, initially in the face, some considerable time after the sensation came back and it’s been ever increasing in intensity since. Gradually spreading to most of the stroke impacted left hand side.
If anything it blocks/masks true sensations with the pins and needles, numbness/burning/outright pain feeling.
It seems to be made worse with movement, lack of sleep, stress etc. If you can super relax the part of the body impacted you might be able to see a difference.
I don’t look on this as pain in the true sense but purely a sensation. As per another recent post, hypnosis or accupuncture might help.
Amitriptyline, gabapentin, pregablin haven’t made any difference. My pharmacist actively encouraged hypnosis.
What you are often not told with each medicine is a NNT score. This is how many people need to take the drug for one person to have a 50% reduction in pain. Gabapentin and pregablin are in the 1 in 7 range and amitriptyline is 1 in 3.5. so it’s basically a game of chance. Even paracetamol is around 1 in 2.
On you tube, the font of all medical knowledge (not really) but I have seen in different places recommending the use of vitamin B1. I cannot verify this though.
One thing I have found is pretty much any distraction is beneficial. If you concentrate on something else,it becomes background.
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Could I just add, this is my own theory really.
When you have your stroke, it’s the brain which is damaged sensation wise not your arm, leg, face etc
When you touch your arm and the sensation isn’t working as it should, as the brain cannot interpret the signal correctly, ie it doesn’t know for sure what has happened so it defaults to protection mode and gives you a pain or unpleasant sensation. In other words, better safe than sorry, I don’t know what has happened so let’s best avoid it.
My arm and part of my leg are hyper sensitive and don’t like being touched. After having a shower though they don’t seem to mind being dried at all. Down through the ages, cold and wet skin, the body hates that and is happy for that to be fixed. So this isn’t a clear black and white situation.
So my thought is, if you can over and over generate the sensation and the brain relearns it isn’t a threat, you may over time be able to dampen it down without medication.
I have noticed that if I rub my hand on a towel, initially it’s horrible, who knew they made towels out of broken glass but if I continue rubbing it, it gets slightly less unpleasant. Is that a case of learning? Who knows…
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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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I think the two come together as an unwelcome package.
The other bit I try is using my right hand to know how something feels and then use my left and try to think of the same feeling.
I have been in exactly the same boat thinking something makes no difference but how can you tell unless you stop. The annoying part is how long you take to build up a dose and how long you take to come off them.
I think it’s quite widely known that paracetamol makes little difference but my physio told me that for some that’s all they need. I suspect they don’t have neuropathic pain though. Would have been interesting to try day one though instead of going onto pregablin
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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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Did you find any difference in pain levels giving up the amitriptyline?
Did you find the pain levels stabilised ? Ie it’s pretty unpleasant but never got above a certain level ?
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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For me the sensations are worse in my face and biceps. Lots of time in the face it’s left hand side and my ear but now and again it moves across to being part way through my eye. No way can I ignore it.
I feel like a zombie currently,was hoping it would ease but seems to be getting no better with dizziness and being sleepy.
Going to reduce my amitriptyline tonight from 30mg to 20mg and see how that goes.
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Did you try anything else ? Pregablin or gabapentin?
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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Unfortunately not sure I have found something or a combination so far that really works for me.
Pregablin did cause me drowsiness initially but it doesn’t take long to wear off, few days maybe, seems your body tolerates it after a while. Much more difficult as the doses get higher, bit of tiredness initially with each dose increase and I was ok on 3 x 75mg. Took the evening one up to 100mg and I was like a zombie. Very detached, didn’t like that one bit.
My pharmacist also mentioned to me that there were alternatives to amitriptyline with reduced side effects. Couldn’t help wondering why she didn’t prescribe those for me initially.
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Can I ask how you have dealt with the mental side of things ?
It’s no fun currently experiencing increasing pain. The only relief I seem to get is around 4-6pm when the pain often eases before increasing again later in the evening.
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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Thanks for coming back. I worked/work for a company who have a long term sick scheme on 2/3rds pay for 3 years,so I have been very fortunate to not have that worry about pip or interviews,at least for now. It’s hard enough just functioning at times when the biceps feel like they are trying to squeeze my arm off.
I’m one year on the scheme. I was in a half IT half business role. Our team looked after the programming and admin of the telephony platforms and MI.
I think the distraction aspect is something I have found to be of benefit, most obvious on my exercise bike. The level of pain and numbness is increasing though
to the point where it is much harder to do things like walking. Especially if it’s with conscious rather than subconscious thought. Walking used to be so easy !
The distraction element I think reminds me of a story I was told about humans in caveman days, not sure how anyone knows this. It goes that if you were hunting an animal for food, you could run through spiky bushes, nettles etc, have scratches and cuts and not feel a thing. Your focus is so intense on the prey. Once you have caught it, shortly after you hurt big time. So we can turn off the thought of pain with a powerful enough distraction but the issue would be with maintaining it.
I have been researching central post stroke pain again today. I managed to find a summary review of multiple scientific studies, all of which needed to meet certain criteria, placebos, big enough sample, no bias etc to be considered.
It states that all solutions are for pain minimisation rather than cure.
Much to my surprise, one of the early statements confirms that the the anti epileptic and anti depressant medications do not work for cpsp. Bit of a wow moment as this rules out eplenerone, pregablin and gabapentin, the standard goto medicines.
What the review also looks at is the effectiveness of acupuncture and this it confirms is beneficial. I am going to pursue this as I quite like the idea of something that works and has minimal side effects.
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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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