Jarred Younger:
A large remote clinical trial grant on low-dose naltrexone ( #LDN ) & cannabidiol ( #CBD ) for #GulfWarIllness was rejected. If you want to hear a bit about how I feel about rejected grants & how I handle them...
Not a placebo-controlled trial, just an open-label study
“67% reported improvement in the low-dose naltrexone group compared with 61% taking amitriptyline and 41% receiving physical therapy alone. Patients taking duloxetine only reported improvement in 35%”
Does anyone here do byphasic sleep? Or polyphasic sleep on purpose or naturally?
One of the worst symptoms of #MECFS for me is waking up in the middle of the night, unable to go back to sleep. #LDN fixed it, but it comes back right before my cycle starts, and I swear it takes almost the whole month to get back to normal and then it starts again.
Last night after watching a couple videos, and after extensive conversations with a friend in Greece who lives in a country where they shut everything down midday (for heat more than naps, but whatever) I decided that since I don’t work I don’t need to keep trying to force eight hours of solid sleep on myself.
So when I woke up at 2 AM last night I got up for a couple hours and I did some stuff, and then I slept from four until seven. And I actually feel pretty good.
How many days meant to wait after stopping #opiates before starting #LDN? Have prescribed LDN. It used to be 3 days standard but now? Dosage? I got 1.5mg but can pull apart capsules.
What happens when start LDN?
Your experiences also help. I know many out there been through this.
System has pretty much abandoned me. Don’t ever live in wrong postcode.😔
I was playing Ultimate on Yuzu with a friend earlier and whoa, 120FPS LDN with the latency slider for a connection within the city felt like offline. Finally considering playing more online when I could get really good sessions like that.
I’m told it’s a painkiller used to wean off opiates but not for longterm use because it’s addictive in itself & has side effects.
(Must stop fentanyl. Govt policy.)
Never tried it before hoping I could use it with low dose naltrexone if I wasn’t getting enough pain control. The pain specialist wasn’t sure.
#LDN is one of the few things I haven’t tried & works wonders for some people.
@tomkindlon@mecfs I LOVE seeing #LDN on this list. That stuff saved my life, I couldn’t tolerate being bedbound but Wide awake anymore, and that stuff saved my life.
Stimulants really help me with the #fatigue as well. I know lots of people are told to not use Adderall if they have MECFS because they might overdo it, and I totally get that. You have to get proper pacing into place first. When I couldn’t get myself out of a month-long crash I asked my doctor if I could have some prednisone. We had a long talk about the dangers of it, and how I couldn’t use it a lot, but one dose of 10 mg prednisone got me out of a crash that I couldn’t get out of. It helped me more than the Adderall (with fatigue, unfortunately I also have #ADHD and prednisone doesn’t do anything for that) and when I jumped for joy about it he started digging around to read studies, if there are any.
I would just like to add that it’s important to be cautious with the #gabapentin. Back when I took it I only took it at night but it still gave me massive daytime brain fog and fatigue. I really had no idea how bad it was for me until I stopped taking it and saw such a significant improvement. And honestly it didn’t really help with the nerve pain, it would help well the pill was active in my body, but once it wore off the next day the nerve pain would come right back. Totally not worth it for me.
L'association #LDN est maintenant dissoute !
Merci pour ces 13 ans de réappropriation d'Internet, de discussions, de conférences, d’apprentissage, de découvertes, d'ami⋅es, de luttes, de vie, prenez soin de vous 💞