best timing for restex medication

[casualuser]

Hello, im 23, and have been diagnosed with ADHD and RLS for a few months and am currently trying to find the right time to take the RLS medication in the evening. My problem is that I currently only feel the effect of the levodopa at least 90 minutes after taking it, and then wake up around 4 o'clock and my legs start to tingle again. I'm currently trying the Levodopa retard, but I lie awake for about 2 hours or more after taking it, as the effect takes a long time to appear. For example, if I want to go to sleep at 21:30, I take the levodopa retard around 20:00 and am still waiting for the effect when I try to fall asleep. As the half-life of the retard is 8 hours, I also wake up around 04:00 and can no longer fall asleep. I am currently on 2 tablets of 100mg levodopa, I nearly had no effects with only one tablet, but I notice that when I use levodopa to fall asleep, I tend to sweat at night and wake up often. Should I discuss the dosage again with my neurologist or consider switching to a different medication?

What is the side effect profile of medications other than levodopa, are they comparatively stronger or more?

[buglegs]

CASUALUSER....I'm no expert by any means just another victim of this terrible disease called Restless Leg Syndrome..Although, from all the research I've done on different types of medications in hopes of treating RLS, I've come to believe that Levodopa generally isn't used as a treatment / medication for RLS unless you are also being treated for Parkinson's Disease. If I were you I'd probably do some research on the subject of RLS and possibly get another opinion from a Neurologist that has some knowledge in treating RLS...Just my opinion...

[badnights]

Hello, im 23, and have been diagnosed with ADHD and RLS for a few months and am currently trying to find the right time to take the RLS medication in the evening. My problem is that I currently only feel the effect of the levodopa at least 90 minutes after taking it, and then wake up around 4 o'clock and my legs start to tingle again. I'm currently trying the Levodopa retard, but I lie awake for about 2 hours or more after taking it, as the effect takes a long time to appear. For example, if I want to go to sleep at 21:30, I take the levodopa retard around 20:00 and am still waiting for the effect when I try to fall asleep. As the half-life of the retard is 8 hours, I also wake up around 04:00 and can no longer fall asleep. I am currently on 2 tablets of 100mg levodopa, I nearly had no effects with only one tablet, but I notice that when I use levodopa to fall asleep, I tend to sweat at night and wake up often. Should I discuss the dosage again with my neurologist or consider switching to a different medication?

What is the side effect profile of medications other than levodopa, are they comparatively stronger or more?

This is difficult to understand for lots of us, but doctors, even neurologists, are not always very knowledgeable about how to treat our disease. Worse, their lack of knowledge can harm us and make our disease worse. There is a phenomenon called augmentation, which applies only to WED/RLS, and it consists of the worsening of the disease by dopaminergic medications. The worst offender is carbidopa/levodopa; others are pramipexole (Mirapex) and ropinirole (Requip). Although augmentation was first described in the 1990s, and WED/RLS specialists have been advising against the use of dopaminergic medications since at least 2012, it was only a couple of years ago that published recommendations for treatment relegated the dopaminergic medications to the back row, and this year, advise against their use at all.

The reason they're not good is because they cause augmentation in most people eventually. Augmentation is more likely at higher doses and if your serum ferritin is low (under 75) to begin with. If you know how bad WED/RLS is, imagine how bad it is when it's 4 times worse. Then, to come off the dopaminergic medications, there is usually an intense bodily reaction that consists of even worse symptoms, though that does go away.

I recommend that you print off the 2025 recommendations (see the link in my signature line), if you can access a printer, and highlight the Good Practice Statement, and items 1, and 11-15 under Adults with RLS. Also print off the 2021 Mayo Clinic guidelines (also in same link), which provide more nuance, and circle the Article Highlights on the second page.

You should probably stop taking the levodopa as soon as possible, especially if you haven't had any iron work done, otherwise you're at risk for augmenting. Therefore I would suggest you make an appt for as soon as possible with this neurologist who hasn't updated him/herself on WED/RLS treatment in the last 20 years (but don't say that to him/her!). Tell him you got some advise from the RLS Foundation's website (if you look there, you will see blogs on both of the papers I asked you to print). Then show him the two papers, saying what year they're from and pointing to the highlighted parts. Ask him, what do you think?

If he is responsive and decides to take you off the levodopa, and check your ferritin and other iron parameters, great.

If he seems willing to discuss it and learn, and check your ferritin and other iron parameters, but is not ready to take you off, well, I don't know what to say about that. With my retrospective view, if it had been me and I knew then what I know now, I would take myself off and deal with it alone.

If he is not responsive, not willing to learn, then thank him and look for a different treatment provider.

Neurologists are not always the best. Often, respiratory specialists or sleep medicine specialists are well-versed in WED/RLS treatment. And general practitioners can also be good. You just have to find a doctor who is willing to learn and update him/herself, more important than the specialty.

Please get your ferritin checked along with the usual iron parameters in any case. Serum iron, TIBC, % saturation, and ferritin. (Ferritin is not part of the standard iron package.) Also, check the actual numbers, not just whether the results are within the normal range. For people with WED/RLS, ferritin typically needs to be much higher than "normal".

Good luck!