New to Site but not to RLS

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Post Reply
Posts: 3
Joined: Fri Nov 03, 2017 6:38 pm

New to Site but not to RLS

Post by crackedvessel »

Hello! New to the site but longtime sufferer.

MY RLS symptoms have always been very intense, worsening with age as is to be expected, but fairly well managed for 20+ years now with a high dose of Requip and a side of Neurontin. But... in the last few months I have not been able to shake what I call "The Sleeping Sickness:" overpowering sleepiness at inappropriate times, sometimes for days on end, with narcoleptic intensity. I go for a sleep study in a few weeks but thought I would poke around here and see if anyone else has had this experience. I've recently been diagnosed diabetic but it is very mild, and though I'm told that can reduce your energy it doesn't seem anything like what's happening. I've already crashed a car, and frequently fall asleep during conversations even standing up, even when I'm the one talking. I know my body chemistry is changing and maybe what I've been taking all this time has simply become too much for me. Or maybe I've suddenly developed narcolepsy because one sleep disorder just isn't enough!

Thanks for letting me join your board.

Posts: 4820
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: New to Site but not to RLS

Post by Rustsmith »

What is the dose of Requip that you are taking. I experienced some of these symptoms, but not quite as severe, when I was augmented on pramipexole. We made an interstate move during that time and my wife had to do almost all the driving because I could not be trusted to stay awake for more than 30 to 45 minutes. This was significant because my wife has MS and the multiple days of driving were very difficult on her energy levels.

Augmentation Evaluation

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota

Re: New to Site but not to RLS

Post by SquirmingSusan »

That sounds terrible! I do have narcolepsy and have not heard of anyone developing it suddenly like that, but it's possible to develop secondary narcolepsy or idiopathic hypersomnia. For most of us, sleep issues started in the teens or early 20s. It didn't become obvious that I had narcolepsy, though, until I was about 40 years old, when I developed cataplexy.

Do you have a good sleep doctor? A neurologist? Make then really look into the underlying causes. Sleep apnea can cause excess daytime sleepiness, too, so a sleep study will evaluate that. I have a brother-in-law who crashed his car because of that.

Not sure if one sleep disorder is ever enough. :roll: I have 3 - narcolepsy, RLS, and DSPD (delayed sleep phase disorder). RLS seems to go with the territory when one has narcolepsy, though. Best wishes with it. I hope you get some answers.

Posts: 349
Joined: Sun Oct 16, 2016 12:29 am

Re: New to Site but not to RLS

Post by leggo_my_legs »

Welcome! That sounds very frightening to be falling asleep like that. I'm glad you are getting the sleep study. Hang in there.

Posts: 30
Joined: Wed Sep 06, 2017 3:46 pm

Re: New to Site but not to RLS

Post by Ladyslider »

I also had these same symptoms while on 4mg of Requip. I was in a drugged state all the time. I would fall asleep sitting at the computer, meetings, driving while stopped at stoplights, etc. I had terrible augmentation from Mirapex and Requip so I'm no longer on either of those drugs. I feel so much better now. Going thru the dopamine agonist withdrawal is no fun but my neurologist thankfully had me on Oxycontin for the 11 days it took me to withdraw from the Requip. I could not have worked or functioned had she not done this. I hope the RLS specialist can help get you on the right track.

Posts: 5721
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New to Site but not to RLS

Post by badnights »

Sorry I didn't reply to this sooner. Sleepiness can be a side effect of ropinirole and of pramipexole (as can insomnia). One of the major warnings for both meds is that some people actually fall asleep without any warning so you're not supposed to drive for a few days after you start taking it , until you know if you're affected this way. I don't know if that effect can emerge later, after time or after a dose increase, but I imagine the sleepiness could get worse with time.
Beth - Wishing you a restful sleep tonight
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Post Reply