Hi all, thought I would show my face on this thread for first time in a while, as I’ve already explained to Nigel, I changed my phone recently and can’t access my login on it and have to use my old phone every so often pop on here. Considering I spent 7 years repairing mobile phones I’m useless on them!
Anyway on Friday I saw my doctor and he’s taken me off gabapentin and put me duloxetine along with amytryptoline I’m already on. 30mg a day for a week then up to 60mg after a week of need be. I’m hoping anti depressant meds is the way forward. Strength wise I’m coming on leaps and bounds after being discharged from the ataxia physiotherapy and being given some daily excercises to do.
All the best and I’ll try and pop on here as often as I can
These last ten days I seem to have developed internal tremors in my biceps mainly but also in my leg,back, neck. It’s a bit of an odd one as I can feel it very clearly but to the touch, I’m not at all certain I can. My wife can’t.
Ah the joys of stroke said no one ever.
I am caught currently in a lack of support.
Asked if the home physio team could revisit but 12 week delay. Apparently physio might help.
GP told me last week he is out of his comfort zone and wanted the hospital functions to pick it up.
The pain clinic have pushed me back to neurology.
The neurology team had an 8 month waiting list to get first appointment and it’s not obvious how to get an appointment with them again.
Cpsp can take ages to appear. Apparently the tremors can take 1 to 4 years. I tried replying to one of the tremor threads on here but no reply. I think I will have to get some physio via the local ms charity centre. Given what they look after mainly, they might be best placed as it turns out.
Hi,
I’ve been suffering with CPSP since 2016, its got worse over the last 18 months, but im not sure it thats just me getting less resistant. When i eventually got it confirmed by my neurologist which took a lot of googling and reading around and then telling my IT, GP and neurologist - they didn’t seem to be willing to accept it. Anyway, after a search i discovered thst there are pain clinics throughout the country - i told my GP i wanted a referral and that was fantastic! The specialist totally understood the condition, put me on tramadol and i did a pain management course - it really helped me. I’m on Pregabalin and codiene now as was getting a bit addicted to tramadol and i just use the skills/tricks from the course to manage it. I’m in pain all day everyday but it’s way better than without the meds. I don’t think it will ever go away (but i try not to think about it because i fall into my dark hole if i do). I find distractions help me. Meeting friends. My hobby. Reading anything yo remove my mind from thinking about the pain.
Find a pain clininc near you and get a referral. I actually recently saw some utube videos about a Dr Edward Tobinick who claims to be able to get tid of the pain - hes in New York - I’ve yet to understand how he does it.
Ill say this to end. Although i don’t think it can disappear, the pain becomes part of your life - which still sounds rubbish, but if you can accept that it massively helps. Find a clinic though, thst was my saviour. Keep me informed of your progress
Hi all. Quick question about pregabalin.
So last Friday I was swapped over to pregabalin(3,50mg tablets a day) from gabapentin. Felt like there was an immediate effect and I’ve had 4 great days where the CPSP eased a lot. Today I’ve woke up and it feels no different than when I was on gabapentin and the pain is back. Am I worrying about nothing cos I have been told to give it 4 weeks to let them kick in? I’ve felt so good up until today. I know I’m on a low dose and there’s scope for higher dose if need be in a few weeks time.
I think mate that cpsp is a bit variable in nature. It’s a bit variable in terms of where it feels it is on any given day (so that impacts to a greater or lesser degree) and severity.
I feel it is going to go up and down irrespective of any medicine. Then hopefully the effects of the medicine are overlaid on top.
From what I have read, this pain is like a feedback loop. A trigger, it might be a touch, cold, stress can start it. It then amplifies each time and results in the pain sensation.
The most natural thing in the world is to tense up with pain which produces more sensation. That tense feeling prolongs the sensation production.
So the key would seem to be, can you super relax the area and break the cycle ? Does this work ?
Is it possible that sleeping does this without you having to think about it ?
Is it possible to break the chain by creating a new sensation? That sensation overrides the pain.
Hi, I did use a pain clinic. Very disappointed. Unfortunately the NHS is so stretched that it was more, get seen, one suggestion and then discharged back to the equally stretched neurology.
No follow up, no check to see if medication works.
Am waiting on the pain management course but not got a start date.
If you are anywhere near Liverpool, you could contact the Walton Centre to see about rTMS.
Hi there,
Nigelglos is correct about the loop, the pain is unlikely to ever stop, because as far as the brain is concerned there’s still something amiss because the nerves keep telling it so. But, the pain can be managed, and unless you’re very fortunate, you’re pain meds will just make the pain less and more managable.
It’s a case of working your way through the different meds available and deciding which have the least unpleasant side effects for you. I’m now on highest does of pregabalin (because brain fog and balance was less unpleasant for me on this) and I use codiene on my especially bad moments. You’ll find the right meds for you but its good for you to try other things to - im talking to Strokejoe, sorry, i cant remember the nsme on the message header.
I have a heated blanket which I find really helps, to get wrapped up and keep my pain warm.
Like Nigelglos said really practising relaxing - meditation, listening to music, yoga - whatever you can find that works just to distract you.
I swim, because its an exercise that doesn’t hurt and it completely removes my mind from the pain.
It might sound bizarre but, if you have hypersensitivity where you’re pain is too, I use a faux fur cushion to lay on as I have pain in my face and head - that sooths me. If I lived somewhere warm Id lay naked wrapped in a faux fur blanket
Thanks for the replies. Today it’s not been as bad as yesterday.
When I last saw stroke consultant, he told me to measure the pain on 1 to 10 scale, and 5 or below is acceptable. So yesterday I’d say it was about a 7 and today about 5, but the previous 4 days I’d say it was a 2, and that’s why i felt so good and yesterday was a bit of a shock!
My incredible wife keeps telling me to be patient( never have been and never will😄)
So as well as the 150mg of pregabalin I’m also on amytryptoline and duloxetine and still strength building on certain areas of my affected side.
Once again thanks for the advice👍
This forum and the people who use it have been a God send at times!
Joey, still at home in Stoke , close to Port Vale FC ( I Follow the proper team in this city though!)
Hi,
I switched from Gabapentin to Pregabalin a few months ago. I’m not on max dosage, but wasn’t sure it was having any effect and something is causing me to fall asleep during the day, so I reduced the dosage until I wasn’t taking any. What a nightmare! I had no sleep for a week and my spasticity increased dramatically (the wet/cold weather didn’t help). I started taking it again yesterday and actually had my first night’s sleep in ages.
Now I suspect the culprit may be the Tizanidine (it’s surely not still post stroke fatigue after 9 1/2 years! )
Hi, it’s hard to give up the medication and then separating the withdrawal effects from the loss of any benefit.
I am giving up nortriptyline at the moment with a view to moving to duloxetine. Still on a low dose of pregablin as well but like you, found when I started it just made me so sleepy. The length of time before the benefit seems very long…if indeed there is a benefit at all.
Hi Joey, i would be very interested to hear anyone else’s replies aswell. Ive been up to the maximum dose of gabapentin, also was changed to pregabalin. I do get the 10 minutes respite in the morning but as you’ve said it then gets progressively worse as the day goes on. Finger’s crossed x
Hi RuOxley
I am so pleased i read your post. I too have the pain tingling etc. I have been trying to get my doctor to refer me to a pain clinic. I want to come off or reduce my gabapentin (3600mg)a day as they don’t seem to help. I wanted to go on tramadol to try and manage the pain. Like you i do a lot of distraction which helps a lot. I too don’t think it will ever go away, but managing it better would be amazing x I hope you continue to improve x
Thank you for your message. I really hope you get a referral soon - keep pushing your Dr on it! As soon as I saw my pain consultant she totally understood and it felt like “Huzzah! It’s not my imagination” she prescribed Tramadol straight away and signed me onto a pain management course - when you get to the pain clinic remember to tell the pain consultant that you also want to attend pain management course.
I don’t think pain clinics are at every hospital, so be prepared to travel (but hopefully it’ll be local for you).
Good luck. Keep me informed
Hi Helen, I started off on low levels of gabapentin earlier in the year without finding much relief eventually got put up to maximum of 3600mg a day. It made the stroke pain worse, to the point where I went for a drive and had to pull over cos the pins and needles was that bad I couldn’t feel my foot on the clutch. I haven’t driven since and aren’t going too until I find constant relief. Been up and down last few days with the pregabalin, but still early days being on it and I know there’s scope to ask my doctor for a higher dose in a few weeks.
All the best and hope you find the right solution that works for you
I have 2 points which I mull over with little progress.
I can’t work out or discover why my pain is increasing. There are items like cold, movement, stress, touch that drive it but why is the pain sensation now more than it was two months ago from the same stimulus ? If I felt now like I did 6 months ago it would be amazing. 12 months ago would be difficult to put into words. Mentally it would be daft to get used to how I am now because I might look back in a month’s time and wish I felt like now. If it settled, game on.
if this has no reasonable upper limit or I am still some way away from the peak, what will life be like. Will I be able to function in a meaningful way. Will ever stronger medication mean cognitively, that’s going to suffer. If I can get to a position medication wise that cannabis oil is an option, if that doesn’t work, what then.
Mentally things must be helped if some of the pain relieving medicine is an anti depressant. No matter what help they have with pain.
On a positive, part of me is thinking, human beings are incredibly resilient. People have legs blown off, survive being prisoners, survive any number of appalling events in really meaningful ways. So this can be done, it’s a skill I need to learn
and I’ll try and pop on here as often as I can
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