I came off pramipexole and started on gabapentin, currently 200mg.
In the last couple of weeks it doesn’t seem to be working as well and I sometimes need to take a paracetamol/codeine during the night.
I can’t think of anything that has changed in that time (other than I may have slipped a little on iron supplements)
I know I can increase to 300mg but wondered if anyone else has found that help from gabapentin has tailed off? Of course I am back on gentle iron every other day.
Thanks
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Lapsedrunner
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I've not really experienced Gabapentin longer term. I've been on it about 9 months now. I haven't noticed any tailing off, but my RLS tends to vary anyway.
I currently take 300mg, which is considered quite a low dose. Last year I was taking 900mg. I have read that if you take me than that, you increase the risk of side effects.
It may be then, that you're simple not taking enough, certainly 300mg isn't a maximum.
I started on Gabapentin back in March. I got up to 600mg (of the possible 900mg I could take) but found that had side effects (extreme tiredness and awful RLS in my left arm) I'm now taking 100mg at 6pm and 400mg at 9pm. However, I also need 5mg Oxycodone at 9pm and 60mg codeine phosphate in three doses at 6pm, 9pm and usually around 2.30am. I am intending trying to come off either the oxycdone or codeine but circumstances have so far prevented me trying.
Anyway, I would agree with Manerva that 200mg Gabapentin seems very low but presumably it depends on how bad your RLS is! All of us have to see what works best for us as individuals. I hope you sort it out OK!
Have you looked into Horizant? It is a slow release gabapentin. I am currently taking it but adding 200mg gabapentin capsules at noon , early evening and bedtime. I am sleeping well with minimal side effects.
Since posting I’ve had a perfect nights sleep and one when all I’ve needed is a caffeine tablet (I’m one of those people who reacts favourably to caffeine!!)
I know my gabapentin dose is low but it’s largely effective at that level.
I do find occasionally that a single paracetamol+codeine tablet deals with a bad night (I assume it’s the codeine that helps but you can only buy it combined in the UK)
Alcohol/caffeine doesn’t seem to affect things, I take gentle iron, Vits B+D and some Mg.
I eat a healthy diet and try to avoid dehydration as I think that affects me. I’m not going down the extreme diet route, I’m not a sweet tooth, eat fewer carbs than I used to.
Now that I largely sleep ok, with what I realise is minimal medication compared with many on here, I consider myself fortunate.
Yes, I agree! This syndrome is an expert at being unpredictable!! I think it's wonderful that you're doing better overall! I think that's the best that anyone could ever ask for! I'm glad that you avoid dehydration and eat healthy, as I have found that doing both of those helps my RLS as well.
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