Appointment success

I've described my perilous journey through the medical world seeking a fix for my 36 year long ever-worstening rls, and how I had an appointment-fail with a neurologist who admitted she knew nothing about rls and acted as though she knew everything. Subsequent to this I saw a lovely GP, the only one at my large practice who understands rls. Sure enough, she resisted Tramadol, which I wanted, but prescribed Pramipexole at the lowest dose, 0.18mg. I gave it a go, thinking I'd get Tramadol from a private doc. But no need - the Prami worked!. I can't believe it. For one whole week I haven't had convulsive, needle-sharp night-long torture routines. But sleep. I'm not celebrating because I don't want to annoy the Fates and the Furies. I'm coming in under the radar. But thank you, thank you, thank you to the people on this site who advised me. And to HealthUnlocked. Before I signed up, I believed the 2 ruinously stupid doctors at my Practice who said there'd be no relevant treatment for another 5 -10 years. Not anymore. I know who my friends are.

16 Replies

  • Congratulations, may you have many many nights restful sleep.

  • Thanks raffs, and thanks for your support!

  • Fantastic to hear that. Many people get a long term of relief from Mirapex and I certainly hope that you do too.

    Down the line , if it starts not to be as effective (many years from now ) do not be tempted to increase the dose. Come back here and the latest advice will be available. 😎

    Delighted for you- may you enjoy and be happy for many years to come.

  • Thanks! Good advice. I've cut my 0.18 tab in half. Is this a good idea do you think? I did this after my first night in a full tab. It is working. Or should I do as my GP said and take the 0.18?

    Thanks for you support and advice.

  • Should be ok- it's not a slow release drug. And the lower dose you are on that works the better.

    I cut tablets in half when I was coming down of it and that worked fine.

    Go slowly and enjoy each day.

  • Thanks!

  • Really gladly to here that the Pramipexole is working for you and at a nice low dose too. Don't be tempted to up the dose if it stops working as that is where the problems start. Enjoy your good nights sleep you deserve them after your long struggle. ..Pipps x

  • Thanks pippins! I actually cut my 0.18 tab in half. It works, but is it a good idea? I thought doing this would leave wriggle room to up it to the full 0.18 if necessary. But maybe that would be a mistake.

    Thanks for your help and support!

  • If you get away taking half a tab - TAKE HALF A TAB :)

    The less drug you take the less chance for side-effects and the longer you will be able to increase the dose and therefore maintain relief.

    I am on a smorgasbord of drugs and vitamins and this past week or so I slept for an hour or so a night until last night, (passed out at 11 and didn't wake til 8 - go me :) ), with lots of restlessness most of the day :( . I am delighted that you are having relief and for all who despair OK there is difficulty getting a break from it but they do come and they are sublime; keep the chin up and know things can be better.

    Oh yeah great advice form madlegs1 about coming back here for the latest info.

  • So pleased for you. I remember after years of RLS I was prescribed my first (at the time) Ropinerole and woke in the morning realising that that night had wonderful, people cannot understand if they do not have the condition...and I find my info here as well.

  • Yes, it's an extraordinary feeling. Other people take it for granted, of course.

  • Yes rkatt, I wish you the best. My rls is under control now but I only get a few hours sleep at a time, but I rest...still a work in progress, but OK.

    All the best to you.

  • Rkatt I am just querying your dose as you say it's the lowest dose. Actually 0.088 is the lowest and 2 of those are recommended daily dose. Anyone good with Maths? ×

  • Good point pippins. I'm useless at numbers but my live-in maths advisor tells me 0.18 halved is a tiny amount more than 0.088, but only a few grains. So I think I'm ok. rkatt x

  • Don't want to stop you being happy but soon you will need 3 a night, then 4, and max 5. What do you do then? That's where I am at present. What do I take now, has anyone got an answer.

  • I agree the dosage is v. hard to understand. My new ones, prolonged release (PR) Pramipexole, are .26 mgs...which I take one of daily...? Asked the chemist if that is more than I was taking before which was x2 .088 and he said only a little...?? What nonsense is this , even my doctor cannot understand it...?? Anyone??

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