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Pregablin and Central Post Stroke Pain

Nige

Simon I expect it’s prescribed as they feel as though they need to prescribe something. Cpsp, a neuropathic pain, let’s give pregablin/gabapentin. Does it work ? Who cares, onto the next one.

If something was no better than a placebo, it wouldn’t get through any trials ? Yet it’s still the medicine of choice it seems.
In all this time,not a single medication specifically for neuropathic pain let alone cpsp. Its like a very poor relation.
In the US, a common combination might be lamotrigine and duloxetine.
Lamotrigine doesn’t show on the NHS site as having any pain relieving properties.

Ruthy

Nige Duloxetine didn’t help relieve my pain, just helped with depression and anxiety. Never tried Lamotrigine, but perhaps it’s avoided in uk due to side effects?

Simon

Ruthy
Or cost?

Nige

Ruthy unfortunately, all of these anti epileptics come with the chance of quite severe side effects. My brother who has epilepsy, has been going through them to try to find one that controlled it for him.
On one he was paralysed from the waist down and another made him blind. There are also significant issues with interaction with other medicines.

So yes you might be right and others are more easily tolerated. But possibly not that effective, not today anyway.

Nige

Ruthy Hi Ruth, can I ask what are you on for pain relief ?
I often question what benefit I get but if I miss a dose, I do notice it pain wise. I notice it much more quickly than I expect as well given they are very slow to build up and give up
Cheers
Nige

Ruthy

Simon Absolutely!

Simon

Nige one he was paralysed from the waist down and another made him blind

Bloody ’ell !

Ruthy

Nige My God! That’s horrendous 😲

Nige

Simon even the latest one which seems to give some epilepsy relief, only 1 fit, he has at times become so light sensitive he couldn’t watch any telly or go outside in day time.
They border on really pretty dangerous it seems.

Ruthy

I’m currently on 600mg #Pregabalin and I use codiene and/or tramadol for bad days. It definitely makes the pain more manageable, like you I really notice the pain increase if I miss a dose and so first thing in the morning is my least favourite time of day.
I’ve tried Amitriptyline, Duloxetine, Gabapentin and tramadol only in the past but they either didn’t ease the pain or the side affects were too unpleasant.
They all make me constipated, dizzy, unbalanced, nauseated, brain fog. But Pregabalin won because it controlled the pain the best and the unbalance and dizziness is less.
My concentration has deteriorated but I don’t know if it’s worse or my brain is just so tired of the brain fog - I don’t like to drive if I can avoid it because I don’t feel safe to be honest.
Sorry for the long winded reply 😅.

Ruthy

Who’s tried #Lamotrigine? I think I’ve asked this before on the old WhatsApp group but I can’t remember.
I have my annual medication appt soon, so it might be an opportunity to ask about Lamotrigine if I get positive vibes from any of you here 🤔

Nige

Ruthy well it seems Ruth there is quite a split between the US and the UK in terms of what is prescribed most commonly.
This isn’t based on much US evidence but Lamotrigine and Duloxetine seem to be in favour in the US.
Here it’s more pregablin or gabapentin with amitriptyline.

I would like to come off pregablin as much as anything as I only get a 4 week supply each time, it’s not on repeat medication. It requires a trip to the Drs to hand in a paper slip to order it.
Same with duloxetine but for that I get an 8 week supply but this is only recently.

Phil is trying Lamotrigine so he might be able to update in a few weeks. The Lancet carried a report on it back in 2001. Just to put that in context, a 30% reduction with a tablet, DBS might average out at 50% although no one is quite sure. Osteoporosis is the negative with lamotrigine but it seems you can counter that with exercise. There is a danger of a rash which seems quite serious but it is mainly children impacted (my daughter was one) and you can avoid with low doses early on it seems.
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)71732-3/fulltext

Ruthy

Nige that’s a chore 😒. I get 4 weeks worth of Pregabalin each time but it is on repeat and just have to get an appt every year to check all is OK. So its much easier for me.
I’m going to ask for a neurologist referral (for both cpsp and migraines) and ask about lamotrigine at my annual review in March.
Will you come off Pregabalin and use something else in its place?

Nige

Ruthy I was going to see how Phil got on and then decide if lamotrigine might be a decent alternative. The difference between the US and UK is quite marked, there is no mention at all of pain relief properties on the NHS site. Yet it is well known to have some benefit elsewhere. .

https://www.nhs.uk/medicines/lamotrigine/about-lamotrigine/

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