Restless Legs Syndrome (RLS) Discussion Board

I started this thread over two years ago and have had fairly good success with taking one ropinerole cut in two before bed and being willing to get up and stretch and read for a half hour or so a couple of times a night. Last night I woke up with fairly bad symptoms only an hour and quarter after going to bed. Then after two more then two more then when the alarm went off at 6.30. I even got up and stretched then to glean an extra hour of sleep.
When I went downstairs in the morning I noticed there was still 200ml of water in my supplemental liter bottle. And, uh-oh, there was my second half of the tablet right next to it.
What I learned from this: if I wake up after less than my normal first two hours, I'll go down and make sure I don't still have half a pill just sitting there.

nasty way to learn a lesson, isn't it

I had a somewhat similar experience about a week ago. I woke about a half hour after going to be with the worst symptoms that I have had at night for a very long time. I also had a strange feeling in that stomach that was about half way between being very hungry and somewhat nauseous. After about an hour of walking around, I guess that I awoke sufficiently to start thinking about whether I took my methadone pill at lunchtime or not. I kept thinking about it and finally decided that I would take a pill. If it doubled up, well I would rather have the drugged feeling that the early stages of withdrawal. I took the pill and about a half hour later my stomach felt fine and I was able to go back to bed. So, now I know the symptoms of missing my meds.

Hi ALL---

I recently tried to get an appointment with my Neurologist to consult. My augmentation is at a point where I KNOW it has to be time to GET OFF THIS ROPINIROLE. I can only get several hours of sleep after going to bed and then I'm up walking around. They say it's called Rebound when your medication isn't effective all thru the night, quiting in the wee hrs. of the AM. I am lucky that I get about 5 hours of sleep (not much of it is DEEP sleep I'm guessing). I've never been sent to a sleep Lab so that I'd be monitored and so I and the doctors would know what my nights really look like).

Anyhow, when I called to ask for an appointment, the woman there said that I already have one for Aug. 2017--- I interrupted her to say I can't wait that long! She gave me one for June 6th. So I have mailed a letter to my Neurologist asking if she can fit me in sooner. She knows that I was getting close to the time when I'd be taken off Ropinirole. She had never mentioned the NEW warning about doing it very slowly IN ORDER TO AVOID NEUROLEPTIC MALIGNANT SYNDROME. That scares the heck out of me! Does anyone know by how small an amount one would have to cut their Ropinirole doses AND how often, based on the new warning?

I know she will eventually respond to my letter, but I want to have an idea about how this must be done. I have read the horror stories about going off certain medications "cold turkey"--- all at once--- but evidently that would be unwise with this new warning out there! I've only been on this drug since Aug. 2016.

Sorry if you've mentioned this in a post elsewhere- -what is your current dose of ropinirole? that will dictate how you stop it.

badnights---

I began Ropinirole in Aug. 2016 at 1 mg per evening; as it began to be clear that Augmentation was happening, I didn't consult with my Neurologist but decided to cut the tablet in pieces and "get ahead of things" by taking a little at an earlier time. Never went to a higher dosage. Also taking Gabapentin at intervals...TOTAL of 400 mg per evening. That's IT.

Hi Sleepy, sorry so long to reply, I've had a bad week

I looked up neuroleptic malignancy syndrome last week after I read your post, too bad I didn't save the link but I learned (or would have learned, if it had stuck in my brain) that stopping DAs can lead to something similar to NMS but with a different name.

I found it again at rxlist.com:
Withdrawal-emergent Hyperpyrexia And Confusion
A symptom complex resembling the neuroleptic malignant syndrome (characterized by elevated temperature, muscular rigidity, altered consciousness, and autonomic instability), with no other obvious etiology, has been reported in association with rapid dose reduction, withdrawal of, or changes in dopaminergic therapy. Therefore, it is recommended that the dose be tapered at the end of treatment

I don't know enough about this possible danger to suggest anything. You should discuss with your doctor how to safely reduce. People have stopped 1mg cold turkey without life-threatening issues (other than unrelieved intense RLS/WED, which is life-threatening in a different way). Others did the taper. Some of those felt it prolonged the agony, others guessed it was more comfortable than if they had quit cold turkey. It's a moot point if your doctor feels that 1 mg is too high to cold-turkey from.

But I want to add - - the warning is scary, but it's a worst-case scenario. The percentage of people reacting that way is - I couldn/t find the number, but I would guess it's very low, since they didn't even know about it for years. If only 1% of people ( think it's 1% ) react to a medication, they have to put that reaction on the list of possible side effects.

You don't want to downplay the possible dangers, but somehow balance that knowledge with a bit of optimistic realism.

I would add that Dr Buchfuhrer has written in multiple places that he stops DAs cold turkey unless they are very high for our dosages.

viewsakew : do you have the reference from dr buchfuhrer re: DAs cold turkey?

If you are a member of the Foundation, there are 2 webinars on augmentation that you should watch. One is by Dr B on Prevention and Treatment of Augmentation". The other is by Dr Earley of Johns Hopkins on Drug Holidays. Of the two, I think that are not a member, it might be well worth the $35 to join since they have a number of other talks and documents on augmentation. Their talk on Opiates is also very useful to those of us (including many doctors) who are not familiar with their use in the treatment of RLS.

fuz_mind wrote:viewsakew : do you have the reference from dr buchfuhrer re: DAs cold turkey?

Have you been to the site where he answers letters from patients? rlshelp.org - look for the patient letters - there are over one hundred pages of them and he has offered that advice many times. My guess is that you would find it there - you might be able to search for cold turkey or dopamine or augmentation and see if that helps - otherwise you just have to read through them. Not sure if it is in The Clinical Management of Restless Legs Syndrome or not. There is also a paper he published a few years go - it is in just Joined section in the Start Here post - here is a link to the post. viewtopic.php?f=2&t=1068

The paper by Buchfuhrer can be accessed here:
viewtopic.php?f=5&t=6532&p=61601#p61601
An extract from it:
For RLS patients with severe augmentation, based on
clinical experience, the dopamine agonist usually should
be stopped or significantly reduced. The medication can be
tapered down slowly or can be stopped abruptly. In either
case, a potent opioid (methadone, oxycodone, and so forth)
should be prescribed to cover the marked worsening of RLS
symptoms, which will predictably occur with the withdraw-
al of the dopamine drug. This exacerbation of symptoms
typically abates within a few weeks or months of stopping
the dopamine agonist, at which time the opioids may be
reduced. Anticonvulsant drugs (discussed as follows) may
be added to further reduce or eliminate the need for opioids.

They say pretty much the same thing in the little blue book (Lee, Buchfuhrer, Allen and Hening). There is an extract from it of the augmentation section, also useful, fourth or fifth link down,