Y’all are confused! Football 
soccer or Futbal 
1 Like
At the moment going to a live game is a no go.
I actually live about 10 min walk from Port Vales ground but started following stoke cos a few family members on my mums side are stokies. My wife and daughters not keen on football but one of my eldest daughters middle names is Victoria after our old victoria ground ( a place i used to call home)
I love non league football and used to watch my local club Norton utd fc when I could before they went bump a few years ago. Their ground still exists though and is home to Stoke City ladies team now and is about 500 yards from my house.
I think I might have turned this into a football thread now 
Will keep an eye out for Gloucester City’s results when I buy my non league paper every Sunday
All the best mate, except when Ipswich play us! 
Stokie-Joey👍
1 Like
Hahahahaha… I thought that was the one with horses. Lol. Then I remembered that is Polo, like that lovely smelling men’s cologne from Ralph Lauren. That stuff could make me fall in love!
2 Likes
Now I’m going to have to check that one out next time I’m out shopping 
2 Likes
Watch out…the scent is addictive if you like spicy, musky scents! Giorgio or Karl Lagerfeld are close, but not quite the same.
1 Like
Hi there, I was keen to contribute to the forum in the beginning but got very depressed post stroke and more depressed when I read between the lines of the great contributors who want to cheer us all up. It seems that we are all on a minefield for which there is no map only nasty surprises. My stroke was last September the day the Queen died, and it has been a real rollercoaster for me, from absolute positivity “I can conquer this too” to a realization that things are actually not going to get any better, I will just get used to them. What is so annoying is that some days I do feel almost normal and am quite cheerful and coping, then there is a hiccup for no known reason and something else evinces itself (this week it has been deafness…how could I get an ear infection and from where?) and bashes my upbeatness back to hopeless. When things are good I am so positive but then this morning not only am I deaf, but the incontinence seems to have returned, something I had controlled but yesterday and today the urge to pee is no longer working, result leaking. I am completely deaf which is just frustrating (I need to say here that I wear a hearing aid and have done all my life, one ear doesn’t work at all, hence the complete deafness bit.). we have two ears but in my case one never worked so infection in the working ear is terrifying. And there is the head job which so many people share…waking up with a grand drama going on in the head, mental noise causing such panic and inability to cope. Physically my arms and legs vary in ability from week to week from completely normal to wobbling around and pain in the legs. What is so strange is that we went on a cruise to avoid the heat (!) and I was perfectly normal the whole time we were away (3 weeks) except for the fatigue which I have always had. Get home and things fall into a messy heap with ear infection, incontinence, pain and panic. I think the body/brain just likes a quiet routine even if it can rise
to the strangeness of a trip. So I am just rambling which is why I haven’t felt I could contribute much to the forum which I find so helpful…just reading about things much worse than mine makes me snap out of the pathetic pity me loop. The stroke was such a shock, I am 80 but never realised! Life was great and I didn’t think I was old as I was in prime health and never sick. The stroke devastated my husband who never had to do anything in the house…he has aged dramatically and now shuffles around uselessly.
We have left it a bit late to start looking for care…a lesson to be learnt for all. I have a very supportive daughter who gets me to snap out of my gloom and just get on with what I can do nowt about.
The Forum keeps telling me I haven’t registered but I have…not sure what I need to do to sort this. All the best to everyone on the stroke train, what can one say except that there is comfort in like minded community. AnaV
3 Likes
This is something I am very interested in.
1 Like
Hello again all.
So I’m constantly up and down with the stroke pain.but today I’ve sat in our car, pressing the clutch and using the gear stick and handbrake and I’ve noticed the stroke pain intensifies and then coming into the house noticed that my ankle calf and fingers were starting to swell. Is it muscles contracting causing my stroke pain?
I’ve got docs appointment on Wednesday and got some questions to ask. I’m also going to ask if I can have the pain management injection cos the CPSP is now the only thing stopping me from returning back to normal life and I’ve now had 10 months of this and feel that it’s been mismanaged
Joey 
3 Likes
Hi Simon @SimonInEdinburgh and Nigel @Nigelglos ,
Hope that you’re both keeping your peckers up (con’t wait for our non-UK readers to try and work that one out 
)
Using air con in the car and a nail brush/toothbrush for regularly “over stimulating” the pain has been helping with the hypersensitivity all down my LHS now being slightly less painful/distracting than it was.
My rationale for starting this was that the brain needs many many repetitions to understand what’s okay and what’s not so I thought that, rather than waiting to encounter stimulus in normal life, I would instead “hit it hard” to try to both initiate neuroplasticity and reduce the length of time that any recovery I may get will take.
2 Likes
Hey Simon @SimonInEdinburgh
Doing okay thanks, nearly back to full time (currently on 5 days with this week being 6 hours/day, next week being 6.5 …)
I’ve generally avoided the wet stuff hence I’ve only had the delights of Barrow once when I stood in for a joyful meeting being told why we were wrong and BAES were right (fortunately I managed to use the “Farnborough taxi” so at least I was in and out in a day and avoided a fair fews hours drive).
We are still doing a lot for the guys up there on both A class and new and with my change of role more of it will come under me however I’m far from being able to travel anywhere for work ATM so my guys and gals will be the lucky ones 
1 Like
Hey Simon,
My mantle piece is cluttered with composer busts, Japanese figurines, metronomes, dolphins, a red arrow and … an astute class submarine. Many years ago, I used to be a flight simulator fan (and I’ve flown a few GA aircraft & gliders in real life, just for fun). That lead to an interest in naval warfare, and computer games with submarine simulations by Sonalysts, Harpoon, and what is today known as CMO or Command Modern Operations. Oddly enough, since my stroke I’ve been too “keyed up” to relax and spend time playing the “Northern Inferno” scenarios. I had reached the “Goblin on the doorstep” scenario where I have to clear a path for a Resolution class sub putting out to sea.
That’s about it. Ciao, Roland
1 Like
Yep, RN have followed the normal naming convention so what used to be known as the successor programme is now known as Dreadnought following the naming of the first in class (about 6 or 7 years ago from memory, although with my memory it could have been anywhere between the mid-80s and last week TBH)
2 Likes
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
Joey in Stoke
5 Likes
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 
2 Likes
I have alot of Nerve pain of back head
1 Like
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.
Cheers
2 Likes
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 
3 Likes
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!)
3 Likes
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! )
2 Likes
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
3 Likes