Quick update on my own recovery and CPSP. So today I’ve been back to the stroke unit at royal stoke hospital for an appointment with stroke consultant about my CPSP. Very strange being back there where I spent a couple weeks last year while they got me medically stable before I got transferred to a rehab unit
So I’ve been put on 2700mg of gabapentin a day and see how it goes, and if it doesn’t work to get in touch with them in few weeks and get it upped or changed.
While there they checked my blood pressure which is good and affected left side movement which is good but in the coming weeks I’ll be getting some sensory physiotherapy.
Just wondering if anyone on here has had any and what is and did it help?
Thanks for listening and keep your fingers crossed for me that the CPSP subsides, cos until it does I can’t really move forward to returning to my old normal life
There’s a guy on IG who had pain issues for more than a year and took gaberpentain & lots more inc. cannabis but I think it’s passed the worst now. He’s screen name is walking on the beach at night. He’s got several accounts that are variations in the name - one has a real rollercoaster account over a few months of his daily meds and how he felt. He noted the time he took what. reviewing would be a struggle I think but could be insightful . Maybe reaching out through his IG he may have lived experience he’d share?
Cheers. They’re trying to get my pain manageable below a 5/10 It’s currently about 8/10 every day but without the gabapentin it’s a 10/10 so so they do take slight edge off the pain.
They want to keep persisting with the gabapentin cos I’ve had no side effects, so far with them. The also mentioned about the possibility of introducing something else like amytryptoline with them. My gut feeling is that that’s what I’m going to need. Because I’ve been taking gabapentin for a while now, been told I only need to give it 2 or 3 weeks to tell if they’re working or not, and if not to get in touch with my gp to change it and try something else
This paragraph suggests it’s not the stroke itself that’s directly to blame but effectively the repair job that is the cause.
That pain usually
develops weeks or months after the stroke, suggesting that it is
a result of subsequent maladaptive neuronal processes rather
than an immediate electrochemical consequence of neuronal
injury.
None of the historical studies I could find have looked at Cannabis and I think that was because it was illegal at the time. The one widespread review of pregablin suggested it was no better than a placebo.
Amitriptyline is often considered as a first line drug…well not for me it wasn’t. That anti depressants are better than anti convulsants.
It also mentions that higher doses not very well tolerated by stroke survivors. That I can whole heartedly agree with.
One bit mentioned was that one drug might be useful for the ongoing pain and another for the intermittent sharp pain.
One other item to look at is repetitive transcranial magnetic stimulation (rTMS)
Transcranial magnetic stimulation is a noninvasive form of brain stimulation in which a changing magnetic field is used to induce an electric current at a specific area of the brain through electromagnetic induction. An electric pulse generator, or stimulator, is connected to a magnetic coil connected to the scalp
Every day is a school day.
The Walton centre is in Liverpool
The vast vast majority didn’t go on the the invasive procedure which to me, suggests rtms must have provided decent results, all be it you need monthly sessions it seems.
Not heard of any of this before. Analgesia is pain relief.
On rTMS
An interesting observation is
that repeat rTMS alone can maintain the level of analgesia in
early responders without recourse to invasive eMCS. Quesada et al.29
showed that initial beneficial effects of rTMS could be
maintained in most responders over 1year with repeat
treatment, namely, that of the application of rTMS on a monthly
basis. The experience at the Walton Centre is similar, with the benefit extending beyond 2years. Of significant note is the
observation that when asked, only 1 of our 18 patients with
neuropathic pain responding to rTMS was prepared to consider
the more invasive eMCS, the rest preferring instead regular
visits to the Pain Clinic for the relatively simple and non-invasive
rTMS maintenance therapy. The experience to date from our
and other centres is that these patients in general are motivated
to persist with this treatment and report stable levels of pain
control and no significant adverse effects
I’m same as you Nigel. Amytryptoline wasn’t any help for me
I’m still currently taking 2700mg of gabapentin. Its been hit and miss so far. But been told to leave it a bit longer( been on that dose since 27th May) before trying the maximum dose of 3600mg cos it could possibly make the stroke pain worse
It seems the search for the right solution for us both continues. Let’s hope we both find it soon👍
Yeh it seems that way.
I have got some acupuncture booked in for late July to see if that helps.
There seems to be some evidence it might help so got to be worth a chance, no risk involved. Historically I think there was a bit of a dismissal of Chinese medicine as much because it wasn’t western medicine.
The medicines it look like both of us are trying/tried don’t half take a long time to build up to a decent dose and then a long time to come off.
It looks from what I can glean that a mixture of medication does work better than one as one deals with the constant and one with the sharp pain.
There are alternatives to amitriptyline.
Do you find your pain is different when stressed ?
No not really. My wife would say I’m always stressed
What I would say is that I do find at times if I get engrossed with something on tv I don’t notice it as much.
I do find it hard to stay positive and look forward to a day when I can wake up and just feel like I used to prior the stroke
Even as I’m typing this, the pain is easing slightly but then it can just kick in full pelt at any time
Fingers crossed for you the acupuncture goes well
Yeh I’m the same, if my focus is on something else. I notice it initially on my exercise bike but not after a while.
The ms charity who are helping me with the acupuncture at reduced rates, also offered hypnosis but unfortunately the person they had has left.
I was thinking, if at times we don’t notice it, it’s is possible for it to be pushed into the background. is it possible hypnosis could be used to try to push it into the background all the time ?. Reprogram my brain so it doesn’t equate this sensation as urgent danger but something less severe. We know it’s going on but it bothers us less.
My brother had hypnosis for heights/sheer drops and he no longer has a fear of heights, and that was a very powerful sensation. Felt sick, fear, legs don’t work properly etc
Unfortunately for now I will have to wait to find out
I’m in Bristol Loraine. I included that link,although it was in the USA as it seemed a fairly straightforward explanation but it does look like there is the non invasive magnetic option before then.
I’m in South Gloucestershire which seems to be one of those slightly made up regions which fits between Bristol and the county of Gloucestershire.
Bristol really is the leader in healthcare almost for all the South West, over to Bath or even Gloucester.
Easier to say I’m from Bristol, it’s only officially a mile or so away.
