Very Severe RLS/PLMD & Violent Leg Kicking

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Gersen
Posts: 1
Joined: Wed Aug 14, 2019 11:10 pm

Very Severe RLS/PLMD & Violent Leg Kicking

Post by Gersen »

I'm new to the forum. I've had RLS / PLMD for years. It is absolutely wretched. The only medicine prescribed some years ago was Neurontin (gabapentin) which unfortunately failed miserably. The problem has advanced to the point that I don't "voluntarily" move my legs when the crawling, electrified sensation reaches a certain point. Instead the sensation ramps up very rapidly and culminates with severe kicking and jerking of my legs. They are so violent that I'm almost thrown off the bed. It is completely involuntary and I'm helpless to stop it. If you imagine someone standing off the side of my bed with an electrified cattle prod, touching my legs every 20 - 30 seconds, you would have the picture.
Sleep is impossible. On the rare occasions when I sleep a little, I'm still exhausted when I awaken. My nerves are so bad from all this that I sometimes lose my voice and can only whisper. I've tried high-potency iron supplements with vitamins to help absorption, with little or no result. Do any medications exist that can possibly grant some relief from this? Anything that would reduce the sensations and the violent kicking would be welcome.

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

Re: Very Severe RLS/PLMD & Violent Leg Kicking

Post by ViewsAskew »

Welcome - I have PLMS and RLS/WED, also. I have both the traditional wiggly/jiggly/icky/electrical feeling that makes me need to walk, and also the involutary movements as you do. That build up, as you've described, is horrible. Can happen even when standing.

The ONLY thing that completely controls the PLMS is a dopamine agonist (of those things I have tried). Except that caused a lot of problems - and can/does for a lot of us. I only need a tiny dose, though, and have found ways to deal with the issues.

Start with iron - get your serum ferritin and iron levels tested. I need my serum ferritin to be over 250/270 or so (not exactly sure) to reduce symptoms and reduce augmentation risk. I've had multiple iron infusions to maintain that. I also find that a dopamine agonist works - but would never suggest taking one unless your serum ferritin is at least 100, maybe more.
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.

wesleepbetter
Posts: 10
Joined: Sun Aug 20, 2023 1:21 am

Re: Very Severe RLS/PLMD & Violent Leg Kicking

Post by wesleepbetter »

Hi ViewsAskew,

What qualifies as a tiny dose? perhaps 0,125mg per day?
I have PLMD at the moment, and my GP prescribed Sifrol 0,125mg per day before sleep.

Also, are you taking pramipexole on a daily basis?
My GP doesn't recommend taking it on a daily basis because he says it could lead to augmentation.

How long have you been taking pramipexole?
Do you see any concerns for taking it a long term?

Thanks in advance

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

Re: Very Severe RLS/PLMD & Violent Leg Kicking

Post by Rustsmith »

First off, Sifrol and pramipexole are the same thing. In the US, the smallest dose of pramipexole is 0.25mg, but many of us snap the pill in half to be able to take 0.125mg. In the UK, I am not sure but I believe that the 0.125mg pill is the same as the 0.25mg pill in the US. If you can snap it in too (yes, they are tiny), try that.

As for augmentation, that is pretty much a given for any of the dopamine agonists. The only question is how long. If your ferritin level is "low" (below 100), then augmentation occurs quicker. I am not sure, but I believe that the history says that 8% of patients on a dopamine agonist will augment each year. That means that about 90% have augmented by year 10. Some (like Views) augment within a few weeks. I lasted almost a year. But following your GP's approach of only taking it every few days helps delay things and avoids the need to go only opioids to manage the post-augmentation symptoms.

The other thing to be aware of is that it causes Impulse Control DIsorder (ICD) in about 15% who take it. ICD involves things like compulsive gambling, eating, shopping, hypersexuality and something called punding, which is a compulsion to do a task repetitiously. You will not be able to see this in yourself, so ask someone close to you to watch for changes in your behavior.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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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