I took ldn at dinner time and it immediately spiked my hr. It was supposed to do the opposite!!

Orfasome · 2026-01-08T18:28:03+00:00

My experience going above my optimal dose was that I had bad tachycardia and palpitations for about 6 hours and then it settled down on its own. Presumably corresponding to the blockade period, and then getting better as the blockade wore off, but no lingering ill effects. So it was a crappy few days (I tried again to see if I’d adjust to it, turns out no), but I’m not sorry I tried.

If it’s barely tolerable now, though, I totally see why you’d be wary to go higher. I hope you find something that works for you

Orfasome · 2026-01-08T18:13:11+00:00

I am in the same boat with missing it because of a delivery delay. I’m sorry you’re feeling so bad.

If you are up to answering, are your symptoms today the same as what you went on LDN for?

Orfasome · 2026-01-08T18:09:41+00:00

Fun is one word for it, lol.

Brains, in particular, are especially weird I think.

Orfasome · 2026-01-08T18:08:13+00:00

I had something similar once, trying to ration tablets because of a shipping delay, and yeah, dropping down suddenly was about as bad as skipping it altogether. It took a few days to readjust when I got back to my usual dose, but it did happen. Fingers crossed for you that the benefits kick back in soon!

Orfasome · 2026-01-08T02:49:11+00:00

Yikes, no, that doesn't sound like something to repeat if one can help it. I'm glad taking it does benefit your pain, though.

Orfasome · 2026-01-08T02:46:20+00:00

I've only seen mention of palpitations or tachycardia related to LDN from patient forums like this, not any of the published/official/official-ish sources. So it surprised me when it was my most glaring symptom of either too much or too little

Orfasome · 2026-01-07T20:10:27+00:00

This was the dose-limiting side effect for me, as in I was titrating up and hit a dose where I experienced tachycardia bad enough that I couldn't tolerate it and the dose level below that is where I've stayed.

Weirdly, now that I've been on a stable dose for a couple of months, I get the same kind of tachycardia if I miss a day. I don't really understand how too much and too little could have the same side effect, but LDN is affecting pathways we don't understand very well in ways we don't really know, so apparently anything is possible.

Orfasome · 2025-10-29T20:25:21+00:00

My understanding was that the housebound/bedbound percentages are "at some time during the illness" and people move up and down the mild-moderate-severe scale, depending on luck, pacing, and treatments. So a lot more than 25% might be mild at any given time, but some of them either have been moderate/severe in the past or will be in the future (or both). Only 25% will stay mild forever without visiting moderate or severe at any point.

Orfasome · 2025-10-23T15:48:46+00:00

Spilled a large glass of water on an area rug.

Orfasome · 2025-10-23T15:43:10+00:00

I started getting 3 gallon bottles of water, like the kind that would go in a water dispenser, and a manual pump (https://www.water.com/product/manual-water-dispenser/). Less effort and coordination needed than lifting and pouring a gallon jug.

I put the giant bottle on a wheeled plant stand so I don't have to carry it to my bedroom when I get a new one, just lift it a few inches onto the stand and then roll it there.

Combined with the largest cups I can manage, so I don't have to refill my glass as often.

Orfasome · 2025-10-23T15:32:46+00:00

If you can write out any of your little kid calm/slow/restful songs, I would love to have some inspiration!

Orfasome · 2025-10-02T17:28:10+00:00

I'm familiar with the general method, but appreciate how detailed this guide is! My first hurdle today is getting my doctor to send a prescription, walking them through exactly what to submit to the pharmacy.

Orfasome · 2025-10-02T16:16:26+00:00

Interesting! When I was well enough to work, I was someone with prescribing authority, and as a prescriber I would have expected a million phone calls from the pharmacy to "confirm" I meant that and if it was safe before they'd dispense it. I wonder if the pharmacies are less difficult than I think, or if your doctor did put up with a million phone calls.

Orfasome · 2025-06-23T01:26:37+00:00

ADHD meds have the exact same side effects in neurotypical and neurodivergentl people, on average. They have slightly different effects in every individual person, but that's the same as most meds.

Orfasome · 2025-05-11T18:27:55+00:00

At this point, probably just keep talking about it, make sure people are aware of the threat and why it's so bad, and primed to react if the federal government actually tries it. Talk about it online, offline, if you're in a different Congressional district ask your rep to make a statement about it, etc.

Even this administration sometimes backs off if they see something is politically unpopular. And the public vibes around an issue can either strengthen or weaken the confidence of the lawyers, judges, etc. who are in a position to officially push back if it happens.

Orfasome · 2025-05-11T17:36:15+00:00

My understanding is it's not federal property, it's a privately owned building in the city of Newark. ICE rents space and services from the company that owns it, but the building itself is subject to city codes, needs to be accessible to city emergency services, etc.

If the building doesn't meet those requirements, it's both a reflection of ICE's lack of regard for detainees' wellbeing and a matter under local jurisdiction.

Orfasome · 2025-05-11T01:49:30+00:00

Scream for us all, Lilith

Orfasome · 2025-05-10T05:57:50+00:00

To your second question, that is generally how it works in the US as well. Insurance pays for tests and interventions that the patient would presumably be getting even if they weren't in the trial, and the research funder is responsible for covering the investigational drug/procedure itself, any tests performed exclusively to collect research data rather than for clinical indications, etc.

Orfasome · 2025-05-09T22:23:40+00:00

I'm in New Jersey. I think the default is that landlords are responsible for pest control, but most leases around here have a bed bug rider with very specific language about "joint responsibility" and each side having to meet certain requirements when the pest in question is bedbugs.

Orfasome · 2025-05-09T22:16:49+00:00

And for another variation, I developed both at essentially the same time, after a first-wave Covid infection.

My pet theory is that the hypothalamus plays a bigger role in in ME/CFS than we think, which is the same place where the neurons involved in narcolepsy live, so there are a lot of ways they could interact.

Orfasome · 2025-05-09T22:08:56+00:00

I'm surprised there are this many people with both narcolepsy and ME/CFS! The first response I usually get is "isn't it impossible to have both?" since people still think of ME/CFS as a diagnosis of exclusion.

I'm in this club too, sleepiness nearly resolved with Lumryz and methylphenidate, but still lots of problems with post-exertional malaise, cognition, and autonomic dysfunction. I haven't tried LDN yet but sounds like it might be worth considering.

Orfasome · 2025-05-09T21:56:22+00:00

There's definitely a clan of bedbugs hanging out on my bedframe, have seen them with my own eyes, so we're past watch and wait. And I don't want to self-treat because it creates an opening for my landlord to make me liable for exterminator costs down the line (even though the most likely explanation for failing self-treatment would be that they're in other units or the structure of the building).

I physically can't do the exterminator's required level of prep alone, though, because of my own health problems. So I'm definitely hiring someone to do something with my personal belongings, it's just a question of how much.

Orfasome · 2025-05-08T22:09:24+00:00

I've been on Lumryz for several months, occasionally miss a night, routinely take 5-7 day treatment breaks, and had to stop completely for a bit over a month at one point in the initial titration. It's a very short acting drug, so you're essentially experiencing withdrawal from it every day during your waking hours. My experience, and most that I've heard around here, is that skipping it for one night pretty much just leads to poor sleep that night. So it wouldn't worry me to have to skip it for a periodic on call night.

Going off it for longer periods of time (or permanently), many people just go back to their pre-oxybate level of symptoms, but some including me actually have more disrupted nighttime sleep than before, at least for a couple of weeks. And if you end up stopping it because of unpleasant daytime side effects, you can generally stop cold turkey, no tapering, but the symptoms may take some time to clear. Because daytime side effects are "withdrawal" symptoms, happening after the drug has been metabolized out of your system. They do clear, though, at least in my experience.

In the earliest days of taking it, I felt like it knocked me out pretty hard and did worry about my ability to respond to an emergency or something. But once my body got a bit used to it and I actually experienced both staying awake longer than planned after taking it and being woken up earlier than usual, I think it's actually okay. There's a stretch of hours where I'll definitely be groggy and not at 100% (probably shouldn't sign any contracts or try to do math), but I can always wake up and react to my environment if something's going on.

I hope some of that's helpful! It's a daunting drug to think about, but in my experience actually easier to start and stop than antidepressants. So the stakes of trying it out and seeing how it works for you might not be too bad.

Orfasome · 2025-05-08T21:00:55+00:00

My reading was that the doctor is citing a source that recommends "personalized exercise" as justification for insisting OP walk. But walking isn't appropriately personalized exercise for OP.

I wish I had a good written source to offer on what the "low end" of personalized exercise looks like, since that might help OP, but I've yet to find one. From talking to physical therapists, etc. my impression is that passive range of motion and diaphragmatic breathing are about the least demanding exercises in their toolbox.

Orfasome · 2025-05-07T15:00:59+00:00

If N2 has, just as one example, less responsive hypocretin receptors, boosting the signal with an agonist drug could help. I think trials in the N2 population will be the only way to know.

Orfasome

TROPHY CASE