USA-RLS-Guidelines –versus European views

[JimAlp]

This Friday/Saturday, the EURLSSG (European Restless Legs Syndrome Study Group) will be holding its annual meeting. I took a quick look at their agenda, which you can view here:

eurlssg.org/downloads/dec-2024/Agenda_annual_meeting_2024.pdf

Two sessions caught my eye:

- Treatment of restless legs syndrome with Sativex

- USA-RLS-Guidelines –versus European views. Shall EURLSSG endorse the USA-Recommendations?

The second session seems particularly interesting, possibly discussing the shift away from Dopamine Agonists as first-line treatments(?).

I don’t have any additional details, but I thought this might be of interest to some of you

[SueJohnson]

I had never heard of Sativex so I looked it up. "Sativex is a mouth (oromucosal) spray containing two chemical extracts derived from the cannabis plant: delta-9 tetrahydrocannabinol (THC) and cannabidiol (CBD). "

[CarnivoreTony in reply to SueJohnson]

Neither THC nor CBD have ever helped my RLS. It's like they want to do anything but prescribe the one medication that works, opioids. That's understandable, but Methadone is impossible to abuse and doesn't build a tolerance.

[Optidad in reply to CarnivoreTony]

I have to say cannabis was my goto treatment for about 3 years with great success. One joint just before bedtime . Then Ireland brought in roadside swabbing with a straight yes/no criteria , no sobriety test and capable of detecting for 72 hours+. That was when I moved onto DAs for 7 years Off them now . Sativex was licenced as an anti nausea drug for chemo patients .

My caffeine/ l theanine tx is working for me 100% , cheap as chips and has me sleeping like the proverbial baby .

[Golferie in reply to Optidad]

What is the above? Caffeine/I theanine tx ??

[Optidad in reply to Golferie]

Caffeine, for some , in large enough doses helps restless legs by causing a release in dopamine , but comes with the undesirable side effects of caffeine. L theanine is an amino acid which counteracts the undesirable side effects . There is anecdotal evidence of benefits for ADHD as a replacement for ritalin also . I was using DAs for 7 years which resulted in life changing impulse control events including addiction. I ceased pramipexole 3 months ago with a vengeful return of symptoms. I started taking L theanine and 2 cans of red bull before bedtime and found a significant reduction in symptoms . I then sourced a combination 50mg caffeine/100mg l theanine pill , better for the bladder 😉 and an absence of other stimulants in red bull, inc sugar .

I've been taking 100mg Caffeine, 200mg L Theanine at bedtime for and find between a 90 to 100 percent reduction in symptoms . Going to the cinema , flights ,etc , I pop one and am comfy throughout.

[SueJohnson in reply to Golferie]

L-Theanine is a nootropic and antioxidant- an amino acid found in green and black tea as well as in some mushroom species that can increase feelings of calmness and may be linked to increased creativity. Its effectiveness is even greater when combined with caffeine - can also be taken as a supplement - improves sleep; helps some with RLS.

[Golferie in reply to SueJohnson]

Thank you as always

[CarnivoreTony in reply to Optidad]

As long as something works for each person that's all that matters. After years on DAs and severe augmentation, I was put on Methadone and is was like a miracle cure. Now I live in a country where it's not available. After months of suffering, the carnivore diet did the trick.

[Sinor in reply to SueJohnson]

Cannabis was good for sleep if my legs behaved but did nothing for restless legs.

[amrob123]

A good find. Thanks for sharing JimAlp.

[Eryl]

Disappointed that there's no mention of systemic inflammation as a cause.

[SueJohnson in reply to Eryl]

The speakers will just be discussing their research It is not a comprehesive listing of causes.

[Eryl in reply to SueJohnson]

I undersant that but there's been so much intrest in the effects and impacts of inflammation over the past few years that it's surprising that it's relevance to RLS isn't getting much attention.