Miracle repeated!

Thank you so much to all who have replied to my recent Pregabalin dose question & I appreciate info about the vision issue which I certainly didn’t know about.

So, I started Pregabalin which I swore I would never take agsin, 4 nights ago - immediate effect which is not what most report but which is what I found 11 years ago.

I’m still tinkering with the dose & timing, when to take, how to split.

3 nights I’ve ended up taking 3 x 25my, last dose around 2am after a typical RLS wake up needing to pace, have a bath etc but them this am I slept till 9am which is s blessed miracle.

I still feel a bit spaced out though so 2am is too late but i’ll have to work out what is best.

Last time when each dose effect wore off I ended up taking 150mg & it being ineffective.

This time, knowing how truly dreadful it can all become I plan to accept not full resolution as long as I can get some decent sleep.

I suppose I should have some days without ..... but the last few days have been such bliss!

I also found my last ferritin was only 44 so zi need to get that up again.

One of the things I think my experience shows is that we cannot all be dealing with the same condition, just the same symptoms or maybe just different metabolism.

I have familial RLS but also peripheral neuropathy. I presume it must be the neuropathy aspect that means Pregabalin works so quickly for me.

The recent post about buprenorphine was very heartening. With any luck that will be more mainstream in the UK when & if Pregabalin effect wears off again. As I said I plan to accept non total resolution but just some decent sleep.

[Hidden]

Happy for you Alison, tinkering with doses rather than just what has been prescribed by doctor i think is better for the individual . I wouldnt advise every one to do that, i think it comes from experience of taking what ever med it is. I have done much tinkering with my meds to try to get to a point that they will work better for me.

[Hidden in reply to Hidden]

Yes I agree and a good point that I shouldn’t encourage anyone else to tinker about with doses - though I think we are all so individual that one size definitely doesn’t fit all.

I have felt quite ‘slugged’ all day though so if someone advised me to put up that dose I wouldn’t - sort of stotting around ( good old Scottish word ) appearing somewhat drunk!

Tonight’s plan is to try to keep to 50mg and take it early say around 8pm

[Hidden in reply to Hidden]

I agree one size does not fit all, i could never take what others take dose wise i would be in a coma, my tolerance to all meds it very low. Good luck for tonight. report back.

[Quiltingmum]

Hi Alison7

I have been on Pregabalin for about 9 months now, gradually increasing until it worked. At first I was falling asleep all over the place, but that soon wore off. Have gained about 8lb in weight which I hate, but I do sleep better which is the trade off. I take 250mg around 10.30pm as a single dose - one of the London hospitals recommended the one dose idea. It took a while to settle, was like you up and down a few times in the night, but generally now I can go to bed around 11.30 and sleep until 5 or 6am and then go back (these dark mornings) and sleep some more! I get very few symptoms in the evening now, and enjoy life almost as a normal person, though of course dependent on the drugs!

Hope all goes well with you. X

[Tscrutton in reply to Quiltingmum]

Hi how long were you on 250 pregabalin before it became effective

[Quiltingmum in reply to Tscrutton]

Hi Ts

I guess it took 5-6 months to reach the really good effect I have now. I would get some (interrupted) sleep before, but now, though not 100% I generally sleep well.

I hope it becomes effective for you, hopefully at less than 250mg, as the less you take the better and the less weight likely to gain.

Best wishes