Just got this RX from my provider. Supposed to help with PEM and my ME/CFS symptoms from Long COVID. Starting at 30mg twice a day.
Anyone else on this or have tried it? Anything I should look out for or be aware of?
Just got this RX from my LC provider. Supposed to help with PEM and my ME/CFS symptoms. Starting at 30mg twice a day.
Anyone else on this or have tried it?
Forgive me if this has already been pointed out but I just read that the original European name for New Zealand was “Staten Landt” as named by a Dutch sailor that means “Land of the States-General.”
New Zealand is the location of the movie.
The show takes place on Staten Island.
Coincidence? I think not!
I’m in day 3 of a PEM crash, but my body and brain won’t let me get any sleep. That tired but wired feeling has me all messed up.
It’s so unfair how when we need sleep the most is when we can’t get any (or enough).
I have severe fatigue and brain fog but my brain is like a frozen PC that refuses to go into sleep mode.
Yes I’ve tried literally ever supplement, sleep med, CBTI, etc etc, but when my flares peak nothing works. Nothing. I wish there was a clinic that I could go to get a 12 hour propofol nap with an iv hydration drip.
Sometimes I think Zac is rather happy that I’m not working and spend most days in bed because he gets all the attention.
A zero day in hiking is a scheduled day off during a long-distance thru-hike where a backpacker logs zero trail miles.
Us long haulers are on a metaphorical thu-hike, we get up on the morning and make what little progress we can with the energy we have. Some days it’s all about just making it to the end of the day. Some days we can make progress, whatever that means to each of us (work, personal projects, art, socializing, etc).
But then there are days where we need to let ourselves rest and take a “zero day” (or days) and just recover.
This is the term I use with friends and family. When I’m having a bad day and know I just need to rest I explain it’s a zero day and they understand what that means.
I prefer this term as it doesn’t carry such a negative connotation as a “bad flare day.”
Instead it feels like I’m taking some time to recover before continuing on my long journey towards recovery.
This is something I’ve been thinking about and talking to my therapy group about as well and thought I’d share it here.
My wife works full time, while I haven’t worked in about a year as I wait for disability to get processed with the help of a lawyer.
She got a tire puncture yesterday and I didnt want to spend any money at a tire shop when I have plenty of experience patching tires and have a kit.
I failed to realize how much energy it takes to do this including jacking the car up, removing the tire, reaming out the puncture etc etc etc.
Of course afterwords I felt good. The endorphins kicked in and I decided to “ride the momentum” and get a bunch of other misc chores done and even meal prepped for the first time in months…
Anyways, that was all a mistake.
So some wisdom for others: when you’re doing shit and suddenly the cloud lifts and you’re feeling great… that’s your endorphins and for us, it’s the sign that we crossed a threshold where our brains are cranking out our bodies natural pain killers in response to physical stressors.
As a former athlete the endorphins were what I was always chasing. It’s the source of the runners high… but now it’s how my body tells me I’ve run out of gas and it’s time to stop.
I’m now assuming the LC horizontal submission position.
I hate this. I’m so over it.
We have almost too many top 6 forwards that I think we’re gonna get a lot of line combos tried in the first few months so I honestly won’t be shocked if we start a bit slow but I think once chemistry builds and we have stable line combos we’ll push into at least a wild card spot.
Marchment’s addition was questioned by many in the media as we have a logjam at FW with prospects pushing for spots… but he’s a rare true “pest” that can score and the kind of player you need in a playoff series. I’m hoping some of his habits rub off on Cherny as Cherny needs to really embrace a physical power fw style of play.
Stenberg + one of Celebrini or Misa is going to be crazy.
I know a lot of us want to see what Celebrini and Stenberg can do together but I’m team Misa + Stenberg to make matchups harder because that’s gonna be a scary second line no matter who is on the other wing.
I want the season to start already
Story : On a farm in Michigan, a rare deer named "Dragon" was born with pure white fur and captivating blue eyes.
But because of his unusual color, his mother rejected him and abandoned him.
A kind family adopted him and cared for him until he grew up to become one of the most beautiful creatures you'll ever see.
The piebald condition affects less than 1% of whitetail deer, causing genetic defects like a pink nose, crystal blue eyes, and large patches of white fur. Unfortunately, due to underlying genetic health challenges tied to the condition, Dragon passed away before reaching his first birthday
On week 2 of LDN and was told to take it at night.
I think it’s been making me drowsy for a few hours after I get up so am thinking of taking it a few hours before bed.
My doc said it can cause a sort of energy boost after 4-6 hours due to the endorphin “rebound” effect and thinks I should stick to taking as soon as close to bed as possible.
But I’ve heard others switch to morning dosing due to it causing insomnia or night terrors. So I’m looking for some advice on timing.
So I’ve had migraines for over 4 years since I had COVID. At the time I developed them my neuro didn’t make the connection so I started the usual treatments: CGRP meds, triptans, Botox, etc…
Nothing worked great, but eventually landed on quarterly Vyepti infusions, Nurtec, and eletriptan being the best combo so far but I hate triptans because I almost always have a mild rebound “minigrain”
Anyway, over time I started getting a ton of other syndromes from ME/CFS, PEM, hot / cold intolerance, chronic vestibular disequilibrium, flare ups where my whole body feels like it’s fizzing or being electrocuted, visual snow etc.
Developed allergies to random shit I never had before like medical adhesive. Tested positive for small fiber neuropathy.
At first I was told I was developing more intense auras. I kept bringing up COVID being where it all started and finally got referred to a specialist in Long COVID and they agreed with me, that I have long COVID.
A few weeks ago I started Low Dose Naltrexone and my migraine and aura severity has so far been under control that last week was the first week in maybe a year where I didn’t take a triptan for a migraine headache. Also have been under a lot of stress which normally is my biggest trigger… so I think it’s doing something for me. Maybe just the reduction in neuro inflammation?
I know it’s mostly used to help with the ME/CFS symptoms so I didn’t expect it to do anything for my migraines but… 🤷
Did someone try and summon a demon from the Pringle dimension?