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.
1 Like
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.
1 Like
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
1 Like
That is a much stronger dose Helen than I could ever tolerate. I was on 3 x 75mg Pregablin, increased one to 100mg and I was like a zombie. Totally detached.
Now I’m on 1 x 50mg, 2x75mg and 25mg of amitriptyline. I don’t think it makes any difference but if I reduce one I suffer.
I’m 16 months on from mine and unfortunately for me the cpsp seems to be ever increasing. On a good day I can slow jog but those good days seem fewer and fewer.
I can’t find any logic for it but each day around 4.30pm for a couple of hours, it seems to reduce a bit.
I’ve had a few days when I wake up and I’ve thought, no way, it’s gone … And then I move and it fires into life.
I am hoping acupuncture can help as not sure what options I have if it doesn’t. Will try hypnosis just to see.
1 Like
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
1 Like
Hi
Can I ask how you have been of late ? Have you found anything to help ?
I’m into my 22nd month post stroke and 19th month after the post stroke pain started.
I’m finding that day after day the pain is gradually increasing in severity.
I don’t really understand why this is the case. Will this continue… Even when I think it must have reached a peak, it seems that isn’t case.
I have managed to get a neurology appointment tomorrow and I am going to try to get as much info as possible.
Cheers
Nigel
1 Like
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
2 Likes
Hi Helen
My meeting started today with, I wish it was different but I can’t do anything for you. I knew that was really the case but to be told to your face doesn’t feel good. Got me a bit.
However as the meeting progressed, going through the medicines I was on, it was, oh that is a low dose to pretty much everything.
The medication change today was to substitute nortriptyline for duloxetine which seems to be very favoured in the US and Canada. The only obvious downside with this seems to be that it will increase blood pressure. At 200mg perhaps by 5.
As this dose will be far lower, think I will risk it.
The discussions led on to deep brain stimulation. That seems to carry a risk of infection on reading up on it. Have you ever been approached about it ?
Agreed to have a further chat but it did make me think where I have got to. I am awaiting surgery on a faulty adrenal gland which caused the stroke in the first place, that and some stress.
My mobility has been pretty good but has slowly and continually declined. No aids of any sort. That is due in part to the rehab unit who tried throughout for me not to have anything. I had worked up to a slow jog last Christmas but now can’t at all and walking tops is may be 50-100m.
I actually thought 4 months after the stroke that I was going to beat it but now it looks like it’s beating me. I can’t quite understand why this is happening and progressing. It’s like the stroke effects just don’t know when to stop.
I am hoping for some psychology help for living with this long term. Little bit like being trapped in a faulty body at the mo.
Cheers
Nigel
2 Likes
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
2 Likes
I was 54 when I had mine as well Helen, must be a dangerous age.
I had high blood pressure for some time, 5 years from 2014 which they couldn’t find the reason why. Turned out I had something called Conn Syndrome which is when you have a growth on an adrenal gland. You can imagine my feeling when you hear growth and gland. Feared the worst, got very down for a bit. Fortunately the later MRI scan and tests showed it wasn’t cancerous. Awaiting surgery now for it to be removed.
That growth for me mucks up the gland and the control it has on blood pressure. Part of the gland produces adrenaline and the outer produces a hormone which controls things for you. As part of this I have learned things I wish I never knew !
And one day with a bit of stress on a phone call working from home was too much for the controlling medication. Lucky it was a day my wife wasn’t working. Up to 80% chance you don’t survive with my stroke so pain now is better than the other outcome.
We do have a good local charity called Bristol after stroke but all my contact of late is with the stretched NHS. GP has said pain wise it’s beyond his abilities. Have asked for 2nd set of home physio but it’s perhaps 8 weeks away.
Got to hope my recent medicine change helps. Getting a bit stuck at home but with this level of pain, not many options. “Learning” to deal with it will be a challenge.
Cheers
Nige
2 Likes
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
2 Likes
*that was meant to say "good evening "
1 Like
Hi Helen, good morning 
Yes potentially the surgery for 20% of people means they don’t need any blood pressure medicine.
It seems though that if you have high blood pressure for some time, there is a fair chance the body has become so accustomed to it that it will maintain it.
Whatever the outcome, I am hoping it might open up the option of cannabis oils. I can’t consider at the moment due to the medication controlling the adrenal gland output. That medication will cease on surgery. Have you tried cannabis oils ? Any benefit ?
The pain clinic gave me a tens machine. Felt quite nice with it on but found the pain was slightly worse afterwards, do you find that ?
Cheers
Nige
1 Like
That’s quiet a thread (that I hadn’t previously read)
One qn that’s a long way from the thread core but @im72 & @Nigelglos would you to know about standing up a docker installation on a digital ocean droplet? (And apologies to everybody who does what that means)
@RuOxley - have you read this thread? I don’t know if it will tell you anything new but I’m checking you are aware of it because I know this is a topic of concern to you
Do you think you guys are at the limit of the knowledge that your consultants are trying to bring to bear? That is to say Do you think you’re at the stage where you can judge their competence as a discipline (not as individuals)
Also you’ve all been discussing things like distractions in the abstract have you tried sharing what distractions you actually use? Combinations etc You might cross fertilise ideas with each other? Or timings EG when you use hot and cold or movement or some of the things that bugger all talked about in the other thread such as the air blowers in his car. Are there any dietary correlations maybe Can you predict ways that make it worse and then translate to strategies that might make it better?
2¢
2 Likes
Hi Simon, welcome back.
By all means, I don’t know what that is.
I had a discussion recently with the surgeon who I hope will take out my faulty adrenal gland. I didn’t feel I was an equal but I would like to think that it was the best two way chat they had been in for a while.
I have had those chats though at other times, what about this ? You haven’t heard of it… really…
So much gets pushed back to GPs in the whole support set up but they have neither the time or the skill set. The NHS is staffed for occasional referrals but is needed like a GP.
The bit I find odd is with all of this, who is busting a gut to change things. Plenty of people saying there is no cure, have to learn to live with it. Where is the drive to make things better …
In my work role as an analyst, if someone came to me and said, we have been told X can’t do this. I didn’t just go, yeh shame isn’t it. See yer. I made sure that was the case but also where I could, here’s 2 alternatives and 1 of those is better than X ever was.
I wanted “oh I wished we had spoken to you 6 months ago”. The difference perhaps is that I was given the time and some freedom. I didn’t have to maintain the status quo. The team was assured of its position so we could say, ignore what I told 2 months ago, we have discovered…
Not sure healthcare is like that
2 Likes
Hi I’ve been prescribed Pregabalin but still get nerve pain & pins & needles. No idea what to do next to help.
Hi Michelle
There is quite a long chat on central post stroke pain on the forum. This may give you further information and links for investigation.
https://onlinecommunity.stroke.org.uk/t/central-post-stroke-pain-again-sorry
Are you working with a pain clinic currently or just a GP/Neurology?
You could request your health professionals look into amitriptyline to supplement Pregablin.
Unfortunately 80% of us may not respond to medication.
Depending where you are located
Hope this helps
Nigel
Hope this helps
Nigel
2 Likes
Thanks, I’ll take a look.