20 consecutive nights without ropiner... - Restless Legs Syn...

Restless Legs Syndrome

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20 consecutive nights without ropinerole and have extreme agitation in the evening…

Abby2525 profile image
7 Replies

My doctor is prescribing 350 mg pregabalin and that does the trick for me now. After 15 days without ropinerole, I began increasing the pregabalin from 200 mg until I got to an amount that works and that’s the 350. And I’m eating my last meal between 4 and 4:30 in order to have not much food in my stomach when I take the pregabalin.

I’m noticing that from about 4:30 pm until about 9:30 pm (I take the pregabalin about 8:30 pm and it kicks in about 9:30), I am experiencing severe agitation, anxiety, and worry. Do you think that’s due to the withdrawal from ropinerole? I’m thinking that’s it because I’ve only had 20 days without it now. After the pregabalin takes effect, I don’t feel the agitation and anxiety until the following day around 4:30 or so. That’s the time when I used to take the ropinerole.

Thank you to anyone who responds!

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Abby2525
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SueJohnson profile image
SueJohnson

Yes - that's a common symptom of withdrawal from dopamine agonists like ropinirole.

Abby2525 profile image
Abby2525 in reply to SueJohnson

Thank you, Sue

Hi Abby, in a word, NO, I do not think the anxiety at 4:30pm is from the DA withdrawal. I think it’s your brain waiting for the Lyrica. Other people have experienced the same thing with Lyrica who were never on a DA. It’s a good enough drug and has allowed you to get some much needed rest. If I were you, when you’re good and ready, start drawing down on it ever soooo slowly. There’s no reason to be in a hurry. Plus, there’s a very old drug called Trazodone which in low doses is anti-anxiety and sedating. It comes in 50mg tablets, but 1/4 to 1/2 should do the trick if you get anxiety as you draw down on the Lyrica. Of course, all this has to be discussed with your doctor.

How did the iron work for you? As you probably know, the ferrous bisglycinate is all I need to control my RLS. I don’t think you’re there yet, but I believe one day you will be. Plus, you may want to revisit the possibility of taking berberine in the morning-500mg. I had greatly worsened RLS after having Covid about three months ago (why exactly it worsened I’ll never know). Over the past week I’ve been taking Berberine and now my RLS is back to baseline. Prior to the berberine I was taking Kimchi (a fermented food with loads of probiotics) every morning for a month to no avail and I was convinced it would do the trick. I’ll continue with the berberine and see if maybe I can get off the iron. Doubtful.

Anyways, my point is “careful is when you get hurt.” (From the movie -Fast & Furious # 9). Staying on the Lyrica is the careful thing to do, but may not be the best thing for you in the long run. The careful thing for me to have done with my worsened RLS was to just keep taking double and triple my normal dose of iron. But that’s not who I am, so why fight my natural instinct to always find a better way.

One thing I learned from my foray into probiotics is that even foods and common herbs can be quite potent. I can’t be certain, but I believe the Kimchi caused a herxheimer reaction, no different than an antibiotic can. Nothing like being sick as a dog for 3/4 of a day to straighten out a laissez faire attitude. I have a feeling berberine has the same potential to cause a herxheimer reaction. “What doesn’t kill you simply makes you stranger.” (From the Batman movie).

EDIT: Ahhh hah! I’m not so crazy. Simple, comforting article and I LOVE the quote at the very top:

culturedfoodlife.com/the-he...

“Your own healing is a healthy contribution to the healing of everyone”

Abby2525 profile image
Abby2525 in reply to

Thank you for taking the time to write such a thoughtful reply. Yes, I agree with you that I need to gradually come down on the Lyrica and that’s my plan. Right now, though, I’m gradually reducing the clonazepam. I’m down to 1/8 mg and I’ll do that for a month or so and then stop.

I had oral surgery recently and my RLS has increased. I don’t know if it’s because I can’t get the physical activity that I need or because of the antibiotics or because (sorry if tmi) of some gastrointestinal bleeding that has been occurring for the last couple of months off and on. I’m afraid my iron stores may be depleting again). I want to get tested for ferritin levels soon.

Anyway, the agitation and anxiety I was experiencing between 4:30 and when I take the Lyrica decreased and is almost gone so I’m not sure if it was in anticipation of the Lyrica or not. Perhaps a small level is but it doesn’t bother me because it’s so much less than it was.

After I’m off of the clonazepam and after any withdrawal effects are gone, I’ll try decreasing the Lyrica. But I want to check on the iron first and take care of that first.

in reply to Abby2525

Your response reminds me of my two favorite substances. One is ferrous bisglycinate. It stops the RLS in one hour. I take 25 to 50mg on an empty stomach before bed. It will be a nice addition to your regimen. Plus, the glycine in the bisglycinate is likely to make you sleepy as it does me. My next favorite is zinc carnosine. There is nothing better for stomach ulcers. Not sure about bleeding elsewhere in GI tract. My favorite brand is Nature’s Lining. Your stomach can’t be completely empty when you take it, or any zinc product for that matter, even Cold-eze throat lozenges.

Abby2525 profile image
Abby2525 in reply to

thank you, again! I ordered the bisglycinate without added vitamin B today. I’ll check into the zinc product you mentioned.

Abby2525 profile image
Abby2525 in reply to

oh, and yes, I do agree that herbs and other supplements are very important and can make a difference.

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