As some of you know I went through RTMS treatment in December for my post stroke pain. I was due to have 10 sessions of 15 minutes over 10 days. After my 5th sessions I was so unwell I had to stop. The treatment itself was painless, but I was so exhausted that I fell out of my car and scared myself stupid, car was parked luckily and I wasn’t driving.
I haven’t had any let up of the pain, probably because I didn’t finish the sessions, but I didn’t want to put my poor brain through any more trauma. I’m super disappointed as I was hoping this would be a breakthrough. It may well be that it was just too early after my stroke ( late April) for the treatment and possibly waiting until my brain recovered a little more would have been more sensible.
It didn’t take me long to get over the extreme fatigue but it certainly frightened me a bit. I had visions of ‘One Flew Over the Cuckoo’s Nest’ before I started, it certainly wasn’t like that and I’m sure for some people, it would be of benefit. The clinic I used in Oxford were highly professional and only agreed to treat me after my neurologist’s sign off. They had not treated a stroke patient before, it was new ground for both of us. As I said, I was disappointed but I had to give it a go. As an aside, I’ve found turmeric as a supplement, has helped to a certain extent with my CPSP. Certainly a lot cheaper than RTMS !
Sorry to hear this treatment didn’t work for you. You never know unless you try though. I’ve never tried it myself but a few people i’ve met take tumeric supplements & are happy with it.
Hope you didn’t hurt yourself falling out your car.
I’m sorry to hear that you didn’t get the result you wanted or indeed to follow through as you had hoped. I am responding because I recognise the question of whether it was well timed?
I purchased a private therapy intervention of constraint induced movement therapy. I’m now 3 years post and I think it would be of some benefit now. I am also of the opinion now that at the time it wasn’t a suitable intervention but I didn’t have the perspective to make that evaluation. Now I do although in case of CIMT I now know how to conduct it without paying somebody else to instruct
I have started to use British Supplements for the many supplements I use. With the turmeric (Clean Turmeric) it wasn’t until I’d run out for a couple of days that I realised I’d had a spike in my pain. Within a couple of days after taking it again, the pain was down by about 70%. I don’t take any ‘proper’ medication for it as I’ve heard it makes you even more woolly headed. I now think that it’s inflammation that makes symptoms worse and I have adapted my diet accordingly. I’ve come to the realisation that the CPSP won’t ever go, it’s hot wired into my brain now. All I can do is manage it.
If you do use British Supplements, the guy that runs it is bonkers. but they are by far and away the most effective ones out there. Well worth the money and not stuffed full of talc like some I have used. I contacted them with my needs and their suggestions were very helpful.
Hi Nigel @Nigelglos ,
hope you’re as well as you can be.
I had a look at Tumeric in the past too and, aside of any potential drug interactions, it’s clear that it really should be avoided by us “bleeders” as it shares many similar outcomes to the use of asprin. But it may be beneficial for some “clotters”.
Hi Rich
I have started with the local stroke support team on the first steps towards mirror therapy. It initially involves imagining activities and some activity using the good side. Remembering how that feels, picture it in your mind.
As part of it I have also downloaded an App called recognise. Cost a £fiver and involves looking at right or left hands and indicating which is which. That sounds easy but it is timed and the pictures are often at odd angles.
They did say it could be exhausting as takes a lot of brain power and they were not wrong. Total thick head and so knackered after.
Hopefully it might lead to some pain reduction. I think I may be so tired as it’s using part of the brain not used a lot until now.
Cheers
Nige
Hi Nigel,
glad to hear that there are some new avenues that you’re getting support in, let us all know how they go. Would be interested to explore mirror therapy myself but guess that I would need to get a Consultant first!!
I bought the mirror set up then couldn’t find anyone to show me how to use it properly. It is now being used as a handy shelf. I’d be interested to see how you get on with yours.
He is just a character. In this world of suppliers having to kowtow to their awkward customers, he tells it as it is. The replies to the poor reviews he gets occasionally (because his customers are mostly in the wrong) are just hilarious. He is also not a fan of the big Pharmas. I agree with his views 100%.
I’m sure you know that the idea of it is to trick your brain that the faulty side is operating normally.
These first two phases are easy to do without any specialist help. It’s actually my physio who is taking me through this although she is part of the wider stroke support team.
The idea of the first phase is just using your imagination and hopefully this will start the rewiring process. I can’t see this working for the face but arm, hand, leg etc seems feasible.
You move your equivalent good side, really concentrate on that feeling, air on your skin, how the muscles feel, smooth, pain free, easy to do. Try to remember it and lock it away.
Then picture in your mind your weaker side moving in the same way with the same feelings. Can you imagine your weaker side doing it ?
The second phase is using the Recognise app. There was a free one but it wasn’t available on my version of android.
I tried over two separate periods to make it useful for capability development - not pain management - But I couldn’t care that magic spark that I have seen some videos where people have had significant phantom limb pain resolved - sounds like a fruitful avenue to explore
finding it more difficult to imagine actions on my left hand side
finding that recognising left hands is more difficult than recognising right hands in the App.
Since I have used the App, I have got 100% twice recognising right hands. Not managed that with left hands. Often it’s hands at funny angles and sometimes you cannot see a thumb.
I have found it a good test, quite enjoyable.
The app shows you how you have done recognising right/left in each test and over time. I am pleased my recognition is showing an upwards trend.
Don’t do too much though, I was truly wasted when I did a few all at once.
