RLS Trial & Error

[Peterhyates7]

It strikes me having read the majority of posts most days, that there is no definitive solution - what works for one, either does not work for another, or may even make things worse!

I am currently in a relatively good position, I was taking Modifinil (100mg) early am & lunchtime for Sleep Aponea & pramipexole (.09mg) 4pm, 7pm, 10pm, but the conflicting side effects were causing problems, so I stopped the Modifinil & only take 50mg just before a meeting or evening out & have kept on with the pramipexole & it seems to work for me. I also take 1mg of diazepam & half a Nytol one a night immediately before I go to bed & am not experiencing any sleep problems or bad RLS, unless I forget to take one of the pramipexole.

I also have a vibration foot plate, but have not found it particularly helpful for RLS, but do use it as it has other benefits.

I would love to come off Pramipexole, and am seeing a new Neurologist in London in the New Year who treats RLS & Sleep Aponea, so will see what he comes up with & will let you know

[rkatt]

Please do let us know...and the name of the consultant if she’s good with RLS. I’m looking for someone I might see privately if needed, soon. Good luck and I hope the system you have in place continues to deliver.

[BoldMove]

You are exactly right. There is no consistency.

[Tapir]

I absolutely agree. In previous posts I have listed a number of, what I hoped, were helpful suggestions of things to try. All of them have worked for me sometimes, but not always. There are obviously a number of triggers for RLS and it does not seem to be a well understood condition. I have been taking cannabis oil for about a month now and have been free of daytime RLS. I even went to the theatre and managed to sit through the performance! I have been able to halve my dose of Pramipexole at night but I am not confident of being able to eliminating it altogether.

[Hidden in reply to Tapir]

Hey, that’s awesome! Was that the first time you’ve been able to sit through a performance?

[Tapir in reply to Hidden]

Yes, pretty much. I will not go to the theatre unless I have an end of row seat booked so I can leave at any time. Also, I normally leave the theatre in the interval to walk outside for as long as possible.

[sookie53]

hello everyone

I feel for all of you believe me, I have RLS for 25 yrs now, I started with 1 pramipexole a day 0.25 mg and now up to 6 a day after yes of taking the same medication eventually it don't work, I asked my Dr. if he could change the medication and he said I can't just stop taking the pramipexole that I need to slowly get off and then change or up the pramipexole so they is why I am taking six a day well it is getting better but hate the thought of taking more of it but I am so desperate so I am taking them because I have it day and night now, if any suggestion please help me. I wish you all well and hopefully they will find the right medication for RLS.

[Hidden in reply to sookie53]

Hi!

Am I correct in saying that your RLS is worse («...because I have it day and night now»)? «Now» as in «this is new»? If so, dopamine agonists (of which Pramipexole is one) can eventually quit working and make things worse. It took 4 years of mine working like a charm before bam! Augmentation. If you haven’t heard about Augmentation before now, please look it up. This is not to scare you, but to inform you.

I don’t want to give medication advice since everyone is so different, but I will tell you that 1.5mg of Pramipexole is very high.