Neuropathic pain relief

Dear Stroke survivors
You may have read some of my posts on left side post stroke pain, especially in my foot.
Well having been experimented on by the nhs I’ve tried all the usual medications to little effect, progabaline, Nora and analtryptaline
And nothing made a difference to my discomfort

At last gabapentine has solved the issue to a greater extent

Just had my gp review ahead of increasing the dosage from 300mg three times a day to 600mg three times a day in a gradual build up

Here goes nothing the lower dose wore off too quickly so here is hoping the higher dose does the trick.
Still not very high could go as far as 3600 mg a day bu would like it to be less.
Good luck everyone.

My update

I have reduced my dose from 1800 to 300 mg a day of gabapentine

The pain levels vary but are more noticeable in the morning half of the day

I find this dug adds weigh and dulls my body down far too much never felt myself.

I intend to totally come off eventually and rely on paracetamol for pain relief if needed

It may work for some but not me seems to do more harm than good and doesn’t make conditions consistent to foster good walking.

Good luck everyone.

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Good luck to you @mrfrederickson !!! I hope it helps more and more!!

K :wink: :polar_bear:

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@mrfrederickson I hope it works well for you. I was afraid of this drug due to the fact that it is very hard to wean off, but so is baclofen and tizanidine. Keep in touch and let us know how this is working for you.
Nerve pain can be worse that muscle pain.
Best of luck.

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Thanks Outlander, I feel the addiction already as the initial small doses have meant I’m getting ready for the next dose as the previous one waries off.
I’ve got to the stage that the relief is worth the risk as I’m not going to be able to get about without it and that would be worse than the addiction. I’m waiting on the new higher dose as I type and could really do with my missed midday dose. Oh well I’ll see how it goes take care.

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There is a suggestion of not having a high dose of any one single medicine but a lower dose of two medicines.
Less severe side effects and hopefully easier to come off if need be.

In the US, Duloxetine seems to be the 2nd medicine of choice, providing no BP issues.

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Yes agreed currently on a very low dose moving to increase it as gaps in pain easing between doses.

To top it all I’m waiting to the pharmacy delivery as I’ve run out and am suffering for it hopefully later this evening or tomorrow morning.

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@mrfrederickson i hope this provides you with the relief you’re looking for.

Thanks hopefully it will especially as I’ve gone 4 doses without having my dosage due to a pharmacy delivery issue. Back on the correct medication and preparing to come off cold turkey and get reduced pain levels.

Not a good night Wil ramp up slowly once in rebalanced with the recent blip in my normal dose and frequency.

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Hope it gets better one step back but 3 forward by all accounts!! I’m always impressed with your stoicism @mrfrederickson

K :polar_bear: :wink:

Thank you the air was blue my poor wife I was in full rant.

Thankfully she is a calm person with oodles of patience.

Should be back to the status quo. Soon.

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That’s your decision to make, friend. I just want you to feel better. If you know the risks, etc, then more power to you. You do what you need to do. I’m glad it works for you. I do have relatives who take Gabapentin who are highly addicted. They say they need it, and so be it.

My mother had no luck with any medication. They all made her mind crazier. She didn’t have a lot of the physical issues that many of you have - she was just very mentally ill from her stroke. Nothing was going to help her. God bless her!’

Take good care!

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Hi Mathewson know they are addictive as the recent delay of 3 doses due to poor pharmacy delivery had me on edge.
If I don’t find something to let me walk without pain my quality of life is greatly reduced and the burden on my wife even more.
Hoping to get walking soon and reduce my dependency

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You have no explanation to give me: you need to do what you need to do. I don’t have your pain - you do. If they help, they help.

I would have given my mother anything to make her calmer, but nothing worked for her.

Sorry to hear that you are having walking. I hope the sun shines for you again.

Please take care of yourself.

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Additionally the build up to 1800
A week
Will be slow the build up and firstly getting some normality for a week after the unfortunate withdrawal due to pharmacy shortages.

The max dosage per week is 3600 mg I’m only going Togo to 1800mg.

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That’s tough to handle when you don’t have it.

I have a few relatives who’ve been taking it for years. They don’t get too much effect from it now, but they cannot do without it because they are so addicted. My aunt told me that it helped really well for the first year, and then it started to lose its effect. But, she cannot do without now, even though it doesn’t help much.

Are you worried about more shortages?

Where is most of your neuropathy located?

That’s good that you’re only doing half the maximum dosage.

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Hi my problem is my left leg and in particular the left foot which will not take my weight on it without a lot of pain plus swelling which is made worse inab enclosed boo and AFO that I wear to stop the ankle doubling over and the foot curling under
Th initial 400mg a day three time a day works but not for long and a recent cold Turku forced on me by lack of supply and poor pharmacy delivery has put me back to the beginning.

Now returning to 300 mg three times a day for a week until I can inch the dose to 600 3 times a day

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You surely don’t want to break your ankle!

You had a right-side stroke, affecting the left side your body?

I was reading that right-strokes are less common and present with different issues sometimes than left-side strokes.

Take good care

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Is this of any use ?

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Will do misses my left arm inadvertently gets involved with me pulling my trousers up but as yet grip is hap hazard
My wife is currently narrowing down the local option a goes to church every week getting a lot out of it she also has carers meetings but they are more caring. Her father’s decking health is not helping he has all but captured my wheelchair.
Thanks in advance for any pointers
Mark. x