Did anyone see the Nightwalkers Fall ... - Restless Legs Syn...

Restless Legs Syndrome

21,483 members15,160 posts

Did anyone see the Nightwalkers Fall magazine?

Opie__ profile image
6 Replies

Most of the issue was about iron and RLS. Had several good articles but a couple of things I had not heard before, or at least I don't remember. When doing a full panel iron and especially ferritin levels, if you have had an infection or inflamatory process (?), wait 6 weeks before testing. It said these issues could cause you to havea false elevation in ferritin levels. Also to eat a low in meat content meal the night before fastingThought that was interesting, any thoughts?

Written by
Opie__ profile image
Opie__
To view profiles and participate in discussions please or .
Read more about...
6 Replies
PoorRichard profile image
PoorRichard

I read that with interest, too. I learned a lot but several things confused me: articles from different doctors used (and insisted on) different forms of iron - ferrous sulfate vs. ferrous bisglycinate; with/without Vit. C, etc.; some downplayed oral iron. But the items that really confused me were two solicitations for volunteers for drug trials for a DA-based treatment. I thought DA's were evil. Overall, I think the issue lacked editorial oversight. <end-of-rant>

Amrob profile image
Amrob in reply to PoorRichard

Possibly Ecopipam. Note it is a dopamine antagonist as opposed to a dopamine agonist such as pramipexole and ropinirole.

"Ecopipam is a dopamine antagonist which is under development for the treatment of Lesch-Nyhan syndrome, Tourette's syndrome, speech disorders, and restless legs syndrome.It is taken by mouth".

Opie__ profile image
Opie__ in reply to Amrob

Honestly didn't catch the difference in spelling of two dopamine. I missed that totaly, may go back and check out again. My chemo brain is still all over the place still 😜

TheDoDahMan profile image
TheDoDahMan in reply to Amrob

There's a Wikipedia entry for Ecopipam. I, too, thought it interesting that it's a dopamine ANTagonist. Apparently still undergoing trials for RLS - stutterers are also interested in this drug, as yet, not approved by FDA. Not sure whether it could be bought online for off-label use.

SueJohnson profile image
SueJohnson

I haven't read the Night Walkers yet but I do have a note from the Spring 2022 Night Walkers of research by Stefan Clemens of Ecopipam, a D1 antagonist allows DAs to work longer or avoid augmentation; 2016 pilot study done by Dr William Ondo.Theory that augmentation is result of D1 receptor which affects excitability of the nervous system.. Drug reduces the activation of D1 receptor. Generally dopamine antagonists make RLS worse.

Opie__ profile image
Opie__ in reply to SueJohnson

Interesting

You may also like...

Nightwalkers Magazine from the RLS Foundation and opiates

refractory RLS. For those of you who are not aware, this magazine is published quarterly by the RLS...

Nightwalker

can sleep. I have sleeping pills, norcos, xanax. you name it I do it. I could go to Dr. but really...

Can anyone offer some help regarding my Ferritin levels for my RLS please.

my levels? My last Serum Ferritin level was 61 (13.0 - 150) Transferrin saturation Serum iron...

RLS & Iron infusion seems to be working!

normal levels of iron after receiving my blood work last year. Rec'd the iron back to back weeks...

Anyone suffer from haemochromatosis or have high Ferritin levels?

back old blood tests and I've only had ferritin measured once before and while it was within limits...