Thank you for this advice. Outdoor smells sounds like a plan. I was thinking some aromatherapy oils. Sounds like you’ve been through it too. It’s awful.
2 Likes
What I find frustrating regarding CPSP is the waiting. Waiting so many weeks to see if a certain medication is working. So in my own case today the stroke pain isnt too bad, but I know I could be different tomorrow. I’ve got another 3 weeks or so then I’ll kind of know for sure if what I’m taking is right for me and if it isn’t I go back to my doctor again and ask for a higher dose then the whole 4/6 week process starts again.
There’s no quick fix. If you have a migraine, you take couple of paracetamol and you know within couple of hours, your migraine will be gone. It’s trial and error with CPSP medication, which in my own case has been ongoing for the last 15 months
5 Likes
Someone visited me when I was in hospital for 3 weeks, they had picked a few leaves of sage which really “spoke” to me. The smell was bliss
3 Likes
@Fledge i don’t have CPSP but really feel for her & it must be so hard for you watching her in that much pain.
Maybe try some distraction techniques. Things she enjoys might help take her mind off it temporarily.
Push for a referral to a pain clinic too.
Sending my best wishes.
Ann
2 Likes
Hi Fledge
I have cpsp. Mine has built up slowly from 3 months. Hopefully this fairly quick summary will help.
As others have mentioned, there is no cure so the aim is pain management/reduction. As medical staff can’t test for the pain, they will ask for a scale of 1-10.
The medication used for cpsp was not designed for cpsp. There are two types used, both as surprising as it seems, were not initially for pain at all. It was later discovered they had some benefit for neuropathic pain also known as nerve pain.
1, anti epileptic. Often pregablin or gabapentin + others
2, anti depressants. Amitriptyline, nortriptyline, duloxetine + others
3, standard drugs such as paracetamol might not offer as much as they do for normal aches and pains.
4. These drugs in 1 and 2 take weeks to build up.
5. These drugs only work for a % of people and the evidence for helping with cpsp is sketchy. You may have to try a number of combinations of 1+2.
Baclofen might also be used for stiffness.
Could I suggest that as soon as your partner is near being out of rehab, ask for a neurology appointment via the rehab team or the GP. Look also for a referral to a pain clinic, mine is a department in the same hospital as neurology. Both for me had long waiting lists, wish I had tried sooner.
GPs, I have found offered little for cpsp itself, outside of their skill set.
If you have a dispensing pharmacist with a back ground in pain, they can help cycle through the medications and doses to find the right one/combination. Two lots of low doses 1 + 2 might have less side effects than a high dose of just one.
Warm is nice, cold is horrible. Stress, touch and movement can all trigger pain.
My 2 most used new items
Sit down (recumbant) exercise bike. Lots for sale on eBay but they are big and heavy.
Lightweight running trainers
You may find cpsp isnt widely understood by support teams like GPs and Physios. It will be referred to as chronic pain which is simply pain which lasts for a long time.
Hope this helps, wish you luck. My most valuable help in all of this, my other half for taking on the bureaucracy, chasing and getting to appointments and day to day things.
Cheers
Nigel
6 Likes
@Nigelglos - that’s a really good summary post of what I confidently guess has been many hours of research on a very tough journey
Do you want to add it to our list of best posts or shall I?
@clibbers1 - I’m so sorry to hear you developed CPSP 
- Do I accurately remember that your health insurance is covering your needs or have you found an NHS avenue to RTMS (rTMS?) ?
I know others have tried to find it on the NHS with difficulty. I also know that very many will be interested in how efficacious you find it. Fingers crossed on your behalf
@stokiejoey must be so frustrating
Wonder if you you’d benefit from the debugging skills of a programmer/ software tester to build a systematic search regime! I’d guess the two needs share some basic practises and as CPSP is so poorly understood medically maybe importing ideas from other sources helps?
2¢
Ciao
Simon
3 Likes
Hi Simon
Happy if you could. I wasn’t sure if this was separate or against an existing item. I know this is a longer piece but I thought I would pass on some of my findings.
Just to say I have followed up on a couple of your previous suggestions.
I tried linked in, searching on likely terms. Found a few people who seemed like they could add real value but not had a reply to any of my messages.
I also signed up to Academia. They send likely articles to you based on your search criteria. They also send some that don’t seem to apply. Turns out that another Nigel price is a publishing author and I get lots of items along the lines of, is this your work. Almost tempted to play along but I’m not sure it’s a site for humour. Most of the articles received are a good few years old, couple were interesting but haven’t really taken me forward.
Lots of Google searches and you tube. Very little if anything on living with cpsp. Mentions of depression, anxiety, cognitive decline. Something to look forward to…This is perhaps not unique to cpsp but chronic pain in general. Possibly treatment with anti depressants for pain helps combat that. I do wonder why I haven’t had more issues in that respect.
rTMS does look to have pretty good success rates. Within the NHS it only exists in the Walton centre in Liverpool. It still after several years seems to be only as a research item and might even cease at some point. Of all the things I have come across this must be the most frustrating item so far. Why continue as a research project if you are not going to take it forward. They have been going since 2011.
I could have applied, chatted it through by email but the treatment requires you to have monthly top up visits. Just one visit to Liverpool would have been a huge effort.
The solution is using a magnetic coil placed on your head to impact the part of the brain which senses pain. To locate this, they use an MRI scanner. Once inside they send a signal and the MRI scanner picks up the part of your brain which reacts.
The website indicates they were working on a cap which would contain the coil for people to use at home. Now you are talking …only to find it was abandoned I think 7 years ago.
In terms of its pros and cons and not everyone is suitable so what the percentage is out of I don’t know. Looks like it’s 30% which in a world of few cpsp successes that doesn’t half stand out. A couple of people out thousands had a fit just after treatment, is that why the cap at home didn’t proceed. Not sure.
Why hasn’t this gone to other regional centres in the NHS. I wish I knew.
As a guide on how well received it is. There is a more invasive, can’t get much more invasive than drilling a hole in your head and adding an electrode to the pain centre. It’s fed by a battery placed under your skin. Only 1 out of 18 rTMS patients I think went on to have this more drastic solution.
I started out thinking this may help. rTMS is used more widely for migraine and other pain. Come on NHS make that leap…but it’s sadly going nowhere.
3 NHS consultants wrote about this in 2020 and their paper was one of frustration. Not only about this but the whole NHS just not being geared up to cpsp. One recurring theme in their paper and my experience is that you are treated in the same way as you might be for a contact injury. The paper mentioned how even pain clinics vary substantially in their understanding.
3 Likes
Hi @Nigelglos
I like to think that maybe in that case I have been of some small help in encouraging you forwards - a contrast from the accusations from admin that I’m a spammer who’s post will be deleted & Who had to be banned from a month 
I’m wondering if we as a community can be coordinated and motivated to give those who are capable support in making the case more strongly. I’m aware of people like Chris Bryant and also some professors / PhD supervisors, venture capital funded startups etc.
I would think if we all used our six degrees of separation we could turn up some influence . Let’s give it a go? I don’t have the stamina to do much - I am able to keep giving a spark if there is fuel and oxygen elsewhere
I’ll add your post to the consolidated best of the best
My own experience of LinkedIn is that it gives the reach to contact but a lot more is needed to make a meaningful connection.
My experience of academia is that since they are ultimately experiencing costs they need to raise revenue and that’s why they put tasty morsels in front of you that are both known to be to your palate and perhaps provoke other interests. It’s also why they have the old stuff for free because the new stuff has a prospect of a premium price.
If you can get into researchgate then it tends to be better but still not the most recent publications unless you have a subscription which is easiest done by connection to a university or research facility - I can’t blame them.
Ciao
Simon
2 Likes
This is the sort of company which might offer help in the future. Not a great investment until they get their funding resolved
The most likely organisation we could “target” for support is the stroke association ?
Support for us or support for people to come ? Organisations, NHS, whoever, should respond to the charity much more than ourselves ? How could we influence them to be more proactive?
A poll maybe across all the forum users, what would you like the association to highlight ?
Five things we want the association to seek answers to ?
Cheers
Nige
2 Likes
I’ll respond later to the above
- on a different note I’ve sent you a couple of chats I don’t know if you’ve seen them :-). No probs if they’re not of any interest, that will be perfectly cool
1 Like
There is no private medical cover for Rtms, my treatment will be self funded. As the clinic in Oxford, where I will go for treatment. have advised 30 daily sessions, it is costly. If it works, however, it will be worth it.
1 Like
fingers very firmly crossed
i know others will be interested
i was asked yesterday by a phd student & her supervisr “how much would you pay for a device aimed at upper limb rcovery?”
we all replied "petty much what ever you asked if it gave us back a woking hand - but nothing if its just another smoke & mirrors gizmo - its the risk/rewad equation thats skewd
once again good luck
ps must retutn to phone where i can use speech2text - left handed 1 finger typing sucks!!
1 Like
If anyone struggling with anxiety, this kindle book is free at the moment
https://www.amazon.co.uk/dp/B07MY8WD8C?smid=A1G3UP32AZJ14F&tag=pepperegc22-21&ascsubtag=2607937904
4 Likes
Thanx - downloaded it
Next Challenge is to read it!
1 Like
Here is quite a long article on the subject.
It must be incredibly difficult to develop this 6 years after. That almost seems ridiculous that it can occur so late.
2 Likes
Hi @Nigelglos
I don’t have anywhere near your degree of background knowledge and first hand experience - so I would be interested in your view of the completeness of the flint article .
I generally find that all the information on flint’s website is good. It’s a better resource than very many
The article you’ve included here it seems to me to give a very good summary of the key points and as such is a good sense maker or context orientation for deeper conversations around central post stroke of pain .
I also think this article uses three times as many words as are needed for the amount of information conveyed! As such if I get strongly motivated I will post a summary - hence my asking whether you feel it omits or miss describes any salient points?
Ciao
Simon
2 Likes
I will have a nose at that and come back Simon. Wanted to share a medicine withdrawal which might show the benefit it can offer.
Aim
I hope this might help others with the type of pain or feelings that this or an anti depressant in general may help with.
Note pain with cpsp is defined as outright pain, numbness tingling, burning. All on stroke side. It’s not always outright pain.
Background
I wanted to share my experience of coming off of nortriptyline, very similar to amitriptyline. This is prior to duloxetine. I am still on 75mg of pregablin.
We are all different so no guarantees. I can’t rule out that I am changing in some way, this might not be 100% medication driven.
Timescale (very cautious, consultant suggested could have been 1 week)
Initial 25mg. Low dose but unable to tolerate much higher.
14/11 dropped to 20mg
18/11 dropped to 15mg
21/11 dropped to 10mg
23/11 dropped to 5mg
24/11 zero dose.
26/11 writing these notes.
So what’s happened Stroke side only.
- Increase of pain was quicker than I expected. Quicker than it takes when starting medicine for the benefit to arise.
- Early on 2 episodes of significant face pain. Lasted about an hour. Not experienced before or since
- Much more numbness on stroke side especially the leg. This seemed to impact coordination as less feedback. This is my first major finding
- Tingling. Actually became painful in stress conditions and after exercise. Slower, nerve type pain. Like a tens machine sort of feeling. Not comfortable at all, couldn’t watch football, very noticeable after exercise bike usage.This is the second
- Resting Pain in shoulder and hand. Change from burning/tingling feeling.
- Stiffness in hand more noticeable.
- Burning feeling little change
- The feeling you have before cramp much more noticeable and prolonged in one of my toes
- Two withdrawal symptoms. Very slight headache and slight sickness. Not unexpected.
- No real change in mood but life in general much harder. Much harder to exercise.
- Less in the way if tremors but certainly not gone away.
- Very heavy feeling lower stroke leg. Not had this extreme before. Much more foot dragging.
- Brain fog seemed worse but I am driving it very hard trying to find black Friday bargains. Lot of research and looking through deals sites and webpages.
- Took extra paracetamol.
Conclusion (so far)
Subject to me not changing, definite benefit.
More benefit than I expected.
It’s pretty unpleasant. Have got a 5 day period for it to be out of my system but read side effects from withdrawal may last week’s after.
If I was on an anti convulsant only, this seems to be a good thing to take in addition.
Thoughts
Is my dose of pregablin doing anything at all. If it is, life would be very hard if this could be worse.
Not had an increase in pain like this before
Can’t wait to get on duloxetine.
I would expect cognitive decline with this level of pain. Detached feeling. Inevitable in worse times and inevitable over time. Bit depressing, hope duloxetine works.
Suggestion
If you have significant leg numbness at times and are not on an anti depressant, perhaps ask your doctor?
If you have painful slow tingling and are not on an anti depressant, ask your doctor ?
Really if you are only only anti epileptic medicine and have any of the pain sensations mentioned, ask your doctor about anti depressant in addition?
Next update
Does duloxetine reverse and improve on the decline
3 Likes
Here is a chain which I recently came across in a book.
The initial stimulus might be touch, cold etc. The chain is
Nerves
To
Brain
To
Pain
To
Stress Response
To
Increased pain
If you tense up with your stress response this drives more sensation which drives the loop.
2 Likes
No one has mentioned anything like this to me. Has anyone else come across something like this ?
I looked for chronic pain rehabilitation after reading some of this book. This is going to make me think, mmmm could that work for me. Can you rewire your brain so that items that hurt are not considered as a threat. Could you give up some of that pain medication that has been thrown at you so far ?
2 Likes
Fledge,
I’m really sorry to hear that your partner is suffering with her pain. It must be horrible to feel helpless - but you’re not! Just by being empathetic can help. I was on antidepressants until quite recently (thought i could ween off) but im thinking of going back on. So, they could help her to just manage the pain - but she needs to chat about it with her GP and find which ones work best for her.
My heated blanket is my goto when my pain is really bad. Also distraction help, I use meditation apps and audio books, that way i don’t have to hold anything. If shes able, maybe a hobby - drawing (my husband bought me a colouring book when i had my first stroke, i enjoy it), jigsaws, play board games together (if you have time).
What is she taking? Are there any other nerve pain meds shes not tried - it took me a long time to find the right ones, the pain’s always present and can be horrendous, but I’m able to manage my pain day to day.
I hope the people on this forum have given you some food for thought. Let us know how you get on. 
3 Likes