Withdrawal update

[cicek]

Tonight I have taken my last .25mg Roprinirole. I may do as one member on here suggested and begin taking just one half of that dose for another week or two. I am upping my Pregabalin tomorrow to 100 mg daily. I also take 4x50mg Tramadol daily. The maths of it all are going OK but when does this relentless RLS stop. It's been about 3 months now and I have not had one single night of peace. I have had a couple of breakdowns when I've thought I can't take it anymore and even been in tears but deep down I know I am strong and can beat this. It would make things a little easier if I knew when it was all going to stop. I know others have probably had it worse but it's so cruel. Merry Christmas to you all and I hope some, if not all of you, have a happy, peaceful Christmas.

[Joolsg]

Well done for getting this far.The 14 days after you stop that last pill are the worst. You will get little or no sleep for the first 4 days and nights and relentless RLS.

However, after the 4 days, you'll start to get an hour here and there. Sleep and rest whenever and wherever you can.

Have a friend or partner around for those 4 nights. I fell over badly several times. You HAVE to move but you are so exhausted.

I wish I could say it will be alright but for the next 2 weeks it will be horrible.

Once through it, the daytime RLS will be gone.

Hopefully the pregabalin will help but for many of us the Alpha2Delta ligands like pregabalin and gabapentin don't work.

Dr. Buchfuhrer thinks it's because yearson Dopamine Agonists have caused permanent damage.

If that happens and raising the pregabalin dose to 300mg doesn't help, you may need to see your GP and switch to Targinact, normal Oxycontin, oxycodone or Buprenorphine.

Don't give up- you have come so far and are doing brilliantly. You're nearly there and free of that constant, intense RLS.

[cicek in reply to Joolsg]

Thanks for the advice as always Joolsg. I have to give the current plan a try although I am not getting any relief at the moment. I think over the Christmas period I will continue with cutting the .25 Roprinirole in half just to keep myself "topped up". In the New Year I will stop it altogether and see what happens. There will be no pressure on me then if things get bad. I've been taking 50mg Pregabalin for 2 weeks and just increased to 100mg. I will continue in this vein and see what happens. Once I get to 300mg, if I see no change I will contact my GP again. No hope of doing that at the moment because as you know, we've been asked not to. Have a good Christmas.

[Joolsg in reply to cicek]

Remember the pregabalin won't make any difference until about 2 weeks after the last dose if Ropinirole.Have a restful Christmas.

[SueJohnson]

It, it can be difficult to cut the .25 mg tablets in half, but you can get .125 subliminal tablets.

[SueJohnson in reply to SueJohnson]

Whoops. I was wrong. I was confusing it with clonazepam which I was also withdrawing from.

[cicek in reply to SueJohnson]

😀😀. Don't worry, I had already cut them without a problem. I am always grateful for your replies anyway, you have been a great help. I hope you have a Good Christmas.

[Deeperside]

I’m sorry to hear you are going through this hideous withdrawal. I stopped Pramipexole in May this year using red vein Borneo Kratom, with zero side effects and the most relaxed my legs had been since starting pramipexole in 2008, and this continues to this day.

The reason I am mentioning kratom is, it may also get you off the tramadol, as it hits the same receptors apparently, so it may be worth a try?

Kratom is addictive,to what extent I don’t know, and I still take it daily, but it’s a godsend for me, and quite literally my restless legs hardly ever bother me now, so I’m carrying on with it as I prefer this over medications.

Hope things settle for you soon, as from my experience DA withdrawal is mentally and physically draining to put it mildly.

[cicek in reply to Deeperside]

You are right about DA withdrawal being mentally and physically draining. I don't know how much more I can take but I do know I have to be strong enough to get through it. It has been a gruelling experience and showing no signs of being over yet. Thank you for your advice.

[Tobias10]

As always, my prayers are with any fellow sufferers of this terrible disease. The good news is that if you are fortunate and have a good Neurologist who is willing to work with you and your meds you will have periods of time with relief. The bad news is that they are sometimes short lived with meds having to be readjusted and little chance of any dependable consistency. I started on Mirapex more than 20 years ago, was overdosed on it by more than one Neurologist, taken off cold turkey with 17 days and nights with no sleep at all and very bad thoughts and then finally switched to a new neurologist in another health plan who has been very proactive with monitoring and adjusting my meds. I now take Mirapex and Sinemet daily with an added Sinemet here or there as needed. I take Gabapenten 2-4 times a day x 2 300mg capsules and one Tramadol as needed with an occasional sleeping pill thrown in when I've had several bad nights and don't need to function fully the next day. The hardest thing for me to wrap my mind around is how you tell when you are having true symptoms with the leg spasms and jerks or when you have maxed out on one of your meds and are now causing augmentation. I'm just about at that point now as I've increased my Sinemet more rapidly than before. The only blessing when I almost died from Covid last December is that I was not aware of my restless legs at all for more than a week and I can remember the exact moment when I became aware and was ringing for the ICU nurse to get me my meds sooner rather than later. I also remember while going through withdrawal from Mirapex that my spasms started to occur in my arms for the first time and that terrified me. Fortunately, they stopped not long after and have rarely reoocured. My prayers are with you.

[cicek in reply to Tobias10]

Thank you for your kind words. I hope you are doing well at the moment. RLS is relentless and such a difficult thing to get others to understand. Thank goodness it is getting more and more recognised now and hopefully in the future more will be done for sufferers.