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Hi all another success in blk 1777 coming off pramipexole WELL DONE ALL. Hope blk 1777 feels as good as i do after coming off, i didnt know at the time what HOLD the med had on me after being on the drug for 8 years give or take i,m a new person.In such a short space of time i,ve lost weight [ which has helped my back problems ] back on my bike i,ve always cycled to work but rode 3 evenings last week as well totaling a distance of 50 miles two 15 mile trips and one 20 mile trip not felt this good for years.I know this may be only short lived but i,m enjoying every day as they come.Sleep wise around 4 hours now but i can live with that. KEEP UP THE GOOD WORK YOU ALL DO FOR SUFFERERS EVEN THOUGH YOUR SUFFERERS I TAKE MY HAT OFF TO EACH AND EVERYONE OF YOU

34 Replies

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  • Hi Nick, congrats on getting sorted. Long may the new you reign!

  • 50 miles?!!! You're a work-out animal. I bet your legs are ripped ;) in a good way!

  • I hope the 4hrs of sleep will improve eventually. but some people can survive on 4hrs quite happily. Was it Winston Churchill who only slept 4 hrs at night. or maybe i am thinking of some one else. :P You sound a fit as a fiddle now, all that cycling wow. !! :)

  • As long as you can power nap sometime before 4pm you'll be grand! 😴

  • Don't forget Maggie Thatcher also survived on little sleep, you wouldn't want to end up like her!!!!

    But yeah I lasted for years on 3/4 hours of broken sleep. Its only since I developed M.E. that I can no longer do this.

    Also sleep during the day. Take a half hour or an hours sleep if you can to bolster the nights sleep. There is a sleep routine of a couple of hours sleep a few times a day and its meant to be very good for you, (if you can get to sleep that is!).

  • sleeping during the day i wish lol work full time

  • Well, if you go into work this week, walk up to the boss and slap him.her as hard as you can you wont have to worry about working for a while :) Are you able to get a bit of sleep during your break? I've seen me sleeping in the toilets at lunch time to get a bit of rest - must do is a great master as they say!

  • Nick, another piece of advice, unless you know what you ferritin level number is then dont take any iron of any kind until you do know your number. For RLSers, it needs to be 50-70 altho many of the RLS experts are now saying 100+ is better. Too much iron can be dangerous. I cant stress this enough, not just to you but ALL RLSers. Taking iron if your number is low can help SOME people when they get the number up BUT, it doesnt help everyone. Just like some meds work for some and not others.

  • thanks Elisse i,m in such a good place at the moment i,m not going to touch anything thanks for advice once again from a happy nick i,m almost afraid to talk about it in case it all back fires if you get by meaning

  • That good to hear. You should be fine now with the meds you are taking, but you may get blibs sometimes, most find that no meds work 100% all the time. Just a heads up, if you find it happens. Just dont get despaired. And you know we are always here for any help. Glad we have a happy Nick now. :) :)

  • Well done Nick. It is great to hear you sounding so chipper after such hard times. It is entirely possible that you will move to achieving longer sleeps also.

  • Hi Nick,

    Good to hear you are doing so well. You are on codein? Or pill free completely? Any vitamins?

    I must say I had terrible rls last night but managed to sleep somehow.. I did take iron bisglycinate before bed but I think the food I have eaten made it so irritable all over my body. That shows I must watch at all times what I am eating! :( I do walk regularly (5 times a week around 6k) and I feel that makes a huge difference too.

    I donate blood regularly but found that I was low on iron so my doctor did treat me for 3 months with extra iron which I got told that it was all gone back to normal level. I am going to call him tomorrow to get my ferritin level checked if I am going to carry on taking iron bisglycinate so I am on the safe side.

    I do feel great coming off pramipexole but I ended having a leg pain constantly coming from my back/hip bones. Do you have anything similar?

    Thanks for sharing and long it may continue.

    Bx

  • i am on 100mg of pregabalin twice daily along with two codiene phosphate just before bed working a treat i,m not turkish lol but got the name form holiday in turkey i tan easily and people thought i was turkish

  • I know you are not. I am :) I read that tanning somewhere:)

    Any side effects on the pregabalin?

    Thanks

  • no side effects at all ???? may be one they make me sleep for around 4 hours yippee lol

  • Well, I took no medicine route and doing well with iron tablets. Feel like a newborn :)

  • Hope you get more sleep soon.

  • i can survive on 4 hours sleep so i,m happy with that but its how i feel thats a BIG plus by kicking pramipexole in my view a nasty drug it had one hell of a hold on me and was dragging my under

  • Best decision! :) Keep up the good work!

  • Gerçeği biliyoruz :D :p

  • Haha! What is the truth Raffs? :))

  • Bkc do get the actual figure for your serum ferritin from the GP. They always say 'normal' but normal is a very very wide band and what's normal for normal people is not necessarily enough for an rls-er.

  • I see where you got your nick the Turk from:). BTW I am Turkish :)

  • ride on! yippeee love it Star-Rider :)

    just getting back on my bike now that the weather is holding up.

  • This is exactly what we need Nick. A feel good story to cheer us all up and give hope to all those going through a bad time on ropinirole and pramipexole. Hope everyone is inspired to get that Lycra out of storage and strut their stuff cycling or running. We need a Team RLS sporty Lycra kit now.

  • Great to hear that you are doing so well now Nick x

  • Wow Nick, you must be on cloud nine. :) It is brilliant+ after all that you have been through, to hear that you are enjoying life once again. You so deserve to be feeling happy/content. Live in the moment as you are doing. I am also sending good wishes to your family who must be feeling very relieved too. :)

  • Life seems better after that dark tunnel i was in doctors have now wiped pramipexole from my list of meds hopefully never to be taken again thank you for your support x

  • Your post is definitely a sight for sore eyes to me! I am beginning this journey with rls and having a very difficult time tolerating the meds I'm on. I feel like you did several posts ago and do I can say you are giving me quite a bit of strength today. Strength and hope that my Dr.'s will figure something out for me!

    Congrats!

  • Annejende all meds work differently for person to person when my doctor prescribed me pregabalin i thought to myself here we go again another med to add to my list of failures.With FANTASTIC help from here i beat coming off premipexole which was one hell of a fight but pregabalin along with codiene phosphate feel good better then i have done for years so please listen to advice from here about different meds etc etc there is relief [ may be short ] relief but searching for right med is the key stay with it and stay strong and don,t be afraid to ask for help there.s great people here that will HELP x

  • Hi Nick, glad things are still going well for you. Good to hear from you. x

  • Hi Nick,

    You are doing just great and it is wonderful to hear. Those that followed your very difficult journey, either quietly willing you on, or replying to you with help and guidance, or asking how you were, if you had not posted for a few days are, I am sure truly inspired by your sheer determination. Bet your family can hardly believe the remarkable change in you. I sense from your posting how "fabtastic" your life is now.

    Yes, another success in Bkc1777 too with the pramipexole. Forum stars. :)

  • Hi lovely Karina,

    It wasn't easy but I got there! I am sure Nick will agree with me. :)

    B.

  • well worth the fight

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