Over 40 Years of RLS

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Yankiwi
Posts: 390
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Over 40 Years of RLS

Postby Yankiwi » Wed Jan 27, 2016 4:43 am

Hi Stainless,
You are relishing your good night sleep last night, but since you augmented with Carbidopa/Levodopa (Sinemet) you might (will probably) also augment with Ropinerole. It's the same as Requip which you already tried.
I thought my first few nights with Ropinerole were a miracle but I augmented after a few months. I had been taking 2.5 tablets (.625mg) and gradually cut back to 1 tablet. I get up at least once a night for a half hour, often twice and on a bad night three times.

Here is a link to a paper on augmentation prepared by a combined task force of RLS experts:
http://irlssg.org/wp-content/uploads/2015/05/Summary-of-recommendations-RLS-Augmentation-13Aug2015.pdf

In part 3 b, its says "The lowest possible cumulative daily dopaminergic dose should be used to control the majority of bothersome RLS symptoms. … the goal of treatment is not to completely eradicate symptoms, but to ensure they do not interfere with quality of life …"

When starting on a dopamine many people feel so good they increase the dose, their doctor tells them it is okay, but it often ends badly. That's why I don't mind getting up in the night to read and stretch. I can then usually get back to sleep fairly easily, if only for a few hours. Good luck.

Stainless
Posts: 145
Joined: Tue Dec 01, 2015 9:30 pm

Re: Over 40 Years of RLS

Postby Stainless » Wed Jan 27, 2016 2:34 pm

Yankiwi, Thanks for the response. I agree with your assessment completely. I am concerned my doctor started me out on too high of a dose Ropinirole at 2 mg.

I was only on Sinemet for a few weeks, did not get relief and did not like how I felt so I quit everything. I was going through Clonazepam withdrawal as I had finally tapered off a few weeks before and that was in the mix. Before and during tapering and withdrawal I was on Gabapentin and thought I was augmenting with that after 11 months because my RLS got so bad.

The article you included seems to say you can't have augmentation on Gabapentin. "The physician should consider a therapeutic trial with alpha‐2‐delta ligands (i.e. gabapentin, gabapentin enacarbil, pregabalin), as these are alternative, effective first‐line treatment for RLS without risk of augmentation.” That is what my doctor wants me on and I'm good going back on Gabapentin if I can get relief.

Do you or anyone else have a comment on this?

ViewsAskew
Moderator
Posts: 15821
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Over 40 Years of RLS

Postby ViewsAskew » Fri Jan 29, 2016 8:44 am

Hi Stainless, you will not augment on gapapentin (or similar drugs). If it works, definitely a good option.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

Stainless
Posts: 145
Joined: Tue Dec 01, 2015 9:30 pm

Re: Over 40 Years of RLS

Postby Stainless » Fri Jan 29, 2016 1:00 pm

I just went two nights on one 2 mg. dose of Ropinerole. I'm going to try to get a lower dose. I've never seen anything work so well but the side effects seem worse than Gabapentin.

I intend to try Gabapentin again, maybe starting today. Last time I started I was on Clonazepam and at the end of my Benzo taper it quit working. I stayed on it for over a month after that and increased dose with no relief. I thought Augmentation but I guess not.

Thanks for everyone's responses while I sort this out.

badnights
Moderator
Posts: 5340
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Over 40 Years of RLS

Postby badnights » Sun Feb 07, 2016 10:04 pm

I'm going to try to get a lower dose.
You don't need a prescription to lower the dose right now. Why don't you just lower it, to see if 1 mg controls you? It's been days since your last post; maybe you already have lowered it. The recommendation being made by experienced WED/RLS specialists now is to start at 0.25 and increase after a few days if it's not covering off most of the symptoms, to a maximum of 1 mg.

The danger of starting high and decreasing is that augmentation may set in before you can lower the dose to your minimum. If it does, you won't be able to tell what your minimum is because everything will be getting worse. I augmented in 3 days on ropinirole. Most people don't augment so fast, but I'm concerned that you're on 2 mg for more than a few days.....

Have you had your ferritin checked? Ropinirole shouldn't be started unless serum ferritin is over 75, or preferably 100 - - augmentation is more likely otherwise.

Maybe a combination of gabapentin and ropinirole will be good for you; the ropinirole will cover the symptoms better than gabapentin alone, and the gabapetin will help you keep your ropinirole dose low. However, I am sooo leery of ropinirole and pramiexole - those meds are very scary for WED patients.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Icnflms
Posts: 15
Joined: Thu Jan 14, 2016 3:09 pm

Re: Over 40 Years of RLS

Postby Icnflms » Tue Feb 09, 2016 5:43 pm

sleepdancer2 wrote:Not sure if this qualifies as holistic, but it is non pharmaceutical. I have severe PLMD and went through years of various meds and augmentation. For 5 years now I have successfully treated my nighttime legs issues solely with a TENS Unit. I use it before bedtime as prescribed for low back pain, having found it calms my legs for several hours.


Hi Sleepdancer2,

I am contacting you on behalf of Icon Films, a production company based in the UK. I am currently working on a new documentary aimed at lifting the lid on RLS and we are looking for volunteers who might want to share their story. We are looking for sufferers that also have PLMD as these conditions often exist together. I would love to talk to you further about your RLS. If you think your story can help illustrate the frustration and misery that RLS brings to so many people please get in touch via rls@iconfilms.co.uk.

Many thanks

Laura Sunnucks

sleepdancer2
Posts: 212
Joined: Sun Jun 29, 2014 7:46 am

Re: Over 40 Years of RLS

Postby sleepdancer2 » Wed Feb 10, 2016 9:44 am

Laura, I will contact you. As to the PLMD, seems even the docs don't agree on terminology. Some doctors are of the mind that limb movements in the presence of another sleep disorder are not to be termed PLMD. My limb movements have always been classified as PLMD even in the presence of other sleep disorders, and that's by numerous specialty doctors. I really think many on here experience the same things I have, but their symptoms have not been termed PLMD. At any rate, I will be in touch.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

ViewsAskew
Moderator
Posts: 15821
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Over 40 Years of RLS

Postby ViewsAskew » Sat Feb 13, 2016 1:04 am

Yes, that is an issue, Sleepdancer. My PLMs were extremely high - I cannot remember if the neuro at the time said PLMD or not, though. But, I think of them as PLMS because I have read the works by Lee, Buchfuhrer, Hening, et. al that use that term instead. My grandmother had them - her doc called them nocturnal myoclonus up until she died in 2005. My guess is that few docs agree because it isn't well studied. But, just a guess! I also get the feeling that some of the sleep disorder organizations see it differently than the neuro-focused orgs. I went to a sleep doc once who was part of one of the sleep disorders orgs - she had never heard of Buchfuhrer, Hening, Silber, or Earley. To us, they are minor gods :-).
Ann - Take what you need, leave the rest



Managing Your RLS



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.


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