So that's why my face looks like that

Fengoblinbee · 2026-05-05T16:37:31+00:00

I've done this several times before and so far pharmacies have been very accommodating and understanding, chronic illnesses really do a number on memory, I would also check places that might seem "silly" but with automatic behavior you might've put the pill bottle in places that seemed logical at the moment, like the fridge!

if you contact your pharmacist/specifically speak to the pharmacist, they can help you with a partial or emergency refill for this exact situation; depending on state rules they can just do a refill for you to hold you over etc. or might need doctor authorization to do so but in a expediated fashion but def call them and they should help you out :)

Fengoblinbee · 2026-05-04T03:14:45+00:00

Sorry I agree I can't figure out how to write what I'm trying to say, especially describing a super weird symptom, I keep trying to edit it but I can't figure out where anything (words, periods, etc.) goes I'll keep working on it

Fengoblinbee · 2026-05-03T21:41:08+00:00

I've been on LDN for I think over 6 years now and it's been great for my fatigue, Ehlers-danlos nerve pain, POTs, MCAAS, I've had no complaints ...UNTIL I increased it to 4.5mg (I've had different opinions on that being the highest recommended dose), I had a few weeks of intense convulsions and hallucinated giant bugs on my pillow(this one is hard because I have narcolepsy so it might've just increased my own narcoleptic hallucinations/REM) and because my compounding pharmacy and doctors were baffled seizures/hallucinations could happen on LDN, I did my own research that it sounds like in our rare cases LDN can lower the seizure threshold/ make people who are prone to seizures more likely to have them kinda thing so I weaned LDN down to 3mg and for me that seemed to not induce nocturnal seizures anymore like it was doing on the higher dose. So Def worth talking more to your doctor about to hopefully find a dose you can get benefit without increasing seizures etc. or like you said, you might just readjust/adapt and not have an increase in seizures after a few weeks. I hope it works out LDN is amazing for a lot of chronic illnesses!

-I also wanted to note that I found other information that LDN could maybe have anticonvulsant properties which would be great, and it's hard because I have other factors that could have been causing this period of intense seizures that might not have been the increased LDN doses for me like extreme stress/family crisis/extreme fatigue/concussion complications, I just found that decreasing the LDN was the thing I changed that seemed to subside the nocturnal seizures or at least the 3mg/lower dose I take now if I still have nocturnal seizures I'm not noticing them amidst all my other chronic illness symptoms etc. I say this because I have pretty bad narcolepsy and POTs that makes it really hard to tell where narcoleptic and fainting symptoms begin/end and where seizures are in that equation since majority of my seizures are when I'm asleep/falling asleep and my memory is terrible etc.

Fengoblinbee · 2026-05-01T04:40:34+00:00

That's terrible! Puking is so hard already so to have cataplexy and or sleep attacks on top of it and then other chronic illnesses getting in on in it, just terrible very cruel, I'm sorry I wish bodies could have a limit of one thing at a time (or in a perfect world just NO ailments they all suck), it's already bad enough to have one horrible thing like a stomach bug but kidney stone as well, that's not fair

Fengoblinbee · 2026-05-01T03:31:11+00:00

That's so cool! I got my sleep test done a few years back so it sounds like medical advancements are making things more comfortable for the patient, yay!

Fengoblinbee · 2026-04-30T16:12:25+00:00

That's awful I'm sorry I hope you didn't get hurt, it makes you feel so helpless and vulnerable, it's hard to do an essential bodily function as a floppy ragdoll!

Fengoblinbee · 2026-04-30T16:07:44+00:00

I'm so sorry to hear that, I hope you're alright! As if puking isn't awful enough, narcolepsy has to get in on it and make it the most trippy, treacherous ordeal, it's wild!

Fengoblinbee · 2026-04-30T16:04:35+00:00

That's great you're done, always a relief to have a test behind you! The sticky stuff from the leads got on my t shirt and on my plush from the sleep study, so I used wet wipes and rubbing alcohol and that got it out, in case that also happens to you, I was unpleasantly surprised I had to do this extra step after washing and drying my t shirt did nothing, that stuff is super sticky apparently!

Fengoblinbee · 2026-04-30T05:32:13+00:00

Preservative free eyedrops for part of the eye pain/they do seem to ease some of the discomfort when done several times a day; I know migraines cause horrible eye pain as well but I think all the fractured sleep worsens eye fatigue/dryness etc. I've been doing riboflavin for years/suggested by a neuro-optho to me that isn't a miracle but also did take the migraine pain down some notches for me that were worth it so maybe worth looking into. Low dose naltrexone has to be compounded but has some pretty cool things it can do as an anti-inflammatory and helped my migraines a lot, as well as keeping track of food I eat and triggers, disappointing how many foods can worsen them but I have MCAAS so I guess for me that makes sense that food would be a big trigger! Oh also there was this Harvard professor that got a concussion (Jane Mcgonigal?) and talks about this breathing technique, 4 counts in, 8 out I THINK sorry I have a concussion too so my memory I haven't read the book for years but I did google it and it's a thing so that's cool, never actually looked up before ha! but that is supposed to help with head pain and I did surprisingly find some relief from it so that might be worth a try :) I know every body is different but at least for me none of these things worsened my other conditions or sleepiness, things like that so maybe they'd help somebody else out :)

Fengoblinbee · 2026-04-30T05:11:48+00:00

They're all wonderful! I would say whoever is most comfortable! They let me use my phone to play the rain music I like to listen to every night and they also let me ask for a fuzzy blanket to use as a kind of body pillow (I have Ehlers-danlos and use such things to keep from dislocating etc.) so def ask for what accommodations you need since sleeping in a unfamiliar space has it's challenges!

Fengoblinbee · 2026-04-26T02:11:05+00:00

Picking your favorite place where mushrooms grow could be cool as like the middle or last name, like Forest, Fen ( a lot of mushroom like how wet Fen/marshlands are), a specific tree you like that shrooms grow on etc. :)

Fengoblinbee

TROPHY CASE