Methadone?

[loudupuis]

Hi, I'm new here. I was diagnosed with RLS summer of 2021. I have a movement disorders doctor. I am on 3 mg. Rotigotine (patch) and 600 mg. Horizant taken with dinner. I also take 325 mg. ferrous sulfate with 100 mg. Vitamin C in the afternoon. I have struggled with chronic insomnia for years (even before the RLS) and take 3 mg. Lunesta at bedtime which doesn't help much. The leg jerks/foot tappings are not controlled. My legs hammer up and down. I have to put a pillow down on the floor when I eat dinner with my family so as to not drive them crazy with my legs pounding on the floor. The worst is when I sit on the toilet (female). Haha. I guess I have refractory RLS. My legs jerk all day long intermittently, sometimes just one, sometimes both. They both tremble when I stand. As you know, it's hell.

I am considering a low dose of methadone. What is usually the starting dosage? Also, can it be taken at night to help with sleep? Thank you for your suggestions.

[Rustsmith]

Your current treatment sounds a lot like mine was before I augmented on dopamine agonists (pramipexole or rotigatine). My doctor switched me to methadone and it provided almost immediate relief. I started out on 5mg and was told to increase to 10mg after a week. Several days after increasing to 10 mg, I started to feel drugged and hazy, so I dropped back to 5mg (which is the smallest dose made).

Two things about methadone. 1) it is a 1/day pill because it has a long half life. This makes timing when you take it very flexible. 2) some of us experience what we call "alerting" when taking opioids. This means that instead of causing sedation like the do for others, the opioid actually causes us to not be able to fall asleep. When that happens, it usually works to simply shift the time that you take it to mid-day so that the "alerting" side effect has worn off by bedtime.

[badnights]

Hi loudupuis
Welcome. I'm sorry you're having problems .

I noticed that your description of your leg issues doesn't sound like RLS/WED. It sounds more like something involuntary, like Periodic Limb Movements of Wakefulness. The movements of WED/RLS are voluntary ones (unless we're restrained, then they become involuntary).

It's not usual for legs to tremble on standing, either, though from your description I can see why they would, after all that activity.

Who gave you your diagnosis, was it the movement disorders doc? and how much experience does that doc have with WED/RLS? Does he/she know about augmentation?

You are currently on 3 mg rotigotine and 600 Horizant. What did you start with? Were there increases in the rotigotine dose, and why were they recommended, if so? You are already at the very highest recommended dose, and it is quite possible that your symptoms are being exagerated by augmentation, or maybe even that PLMs are being caused by augmentation. Augmentation is a worsening of WED/RLS by dopaminergic medications. Most doctors STILL don't know about it. The only long-term solution to augmentation is stopping the dopaminergic medication, which causes temporarily even worse WED/RLS.

For you to have WED/RLS, (1) you must experience an urge to move, usually accompanied by horrible sensations (usually something indescribable, but sometimes pain). The movement that results is voluntary - the legs don't jerk by themselves.
(2) The movement relieves the urge and calms the sensations (at least partly).
(3) the urge is worse in the evening and night.
(4) the urge is worse when you're sitting or lying down, at physical and mental rest
Do you recall if all of these criteria were true when you were diagnosed in 2021?

[loudupuis]

Hi, badnights,

Thank you so much for your response. The movement disorders doc I see was actually recommended to me by the RLS foundation. There was an increase in the rotigotine dose because the jerking legs were not controlled. You are right about the leg movements being involuntary. I've told the doctor that I never had an URGE to move my legs because of the sensations; they just move involuntarily. I've never had creepy, crawly, wormlike sensations. My legs just jerk uncontrollably. A recent polysomnography showed no PLMS. I am looking into PLMW. It's all pretty confusing. I guess I will make an appointment with the doc to see if she thinks some augmentation might be going on. The foot tapping at rest during the day plus leg trembling while standing are a pretty strange way to live. Thank you again. I appreciate the support.

[badnights]

Hi loudupuis
It's probably best to keep an open mind about your movement doc, no one knows everything and there is such a shortage of WED/RLS specialists. Even though s/he was recommended by the Foundation, he might have missed the diagnosis. You've never had the urge to move; that should tell your doctor that you don't have WED/RLS. I wonder why he is sure you do have it? That probably should be the topic of your next conversation.

Good luck!
Beth