u/avocuddlehamcake

I’m hoping someone can help me make sense of this because I’m really confused and have no idea where to go from here. The doctor who prescribed the medication to me has no idea either, nor does the pharmacist I spoke with.

I’m taking LDN for long covid brain fog and fatigue, and MCAS-like symptoms. I also have a bunch of other issues like endometriosis, POTS, etc.

My titration history:
- Started at 0.5 mg at night and tolerated it well for about 2–3 weeks. I increased to 1mg and that flared up my MCAS-like symptoms and impacted sleep, so I came back down to 0.5mg and was told to increase by 0.1mg per week because I felt worse every day for a week.
- Increased gradually by 0.1 mg weekly
- Did fine at 0.6, 0.7, 0.8, 0.9mg
- Eventually titrated up to 1.1–1.2 mg, possibly a bit too quickly, which is where my problems started.

That’s when I started getting horrible sleep maintenance insomnia. I’d fall asleep quickly, sleep deeply for the first part of the night, then wake up 4-5 hours later, around 3–4am, and feel wired but tired, activated, hot, restless, somewhat short of breath and unable to get comfortable. Nothing would help me get back to sleep - not melatonin, Benadryl, glycine, magnesium glycinate, etc. I’d only fall back asleep around 6:30-7am for up to an hour and would make it through the day fine for the most part.

Before 1.1–1.2mg, I had zero issue sleeping on lower doses, including 0.5mg. Once the insomnia started and seemed to not be going away, I tried lowering again and things have been weird ever since.

I tried switching to morning dosing at one point and my sleep was still impacted 20 hours after taking it. I also felt kind of unnaturally wired during the days even though my symptoms seemed better managed.

I then switched back to night dosing and went down to 0.7 mg, which was somewhat better (sleep still very fragmented but somewhat less prolonged 4am wakefulness). I still felt kind of weirdly buzzy during the day. I then dropped to 0.5 mg again (which I previously tolerated for weeks at the beginning with no issues sleeping), and now it’s almost like my insomnia is even worse.

What’s confusing is:
During the day on 0.5mg, I actually feel decent. I have less brain fog, better exercise tolerance, improved MCAS-like symptoms, less daytime “wired” feeling than I had on higher doses… So this suggests 0.5 might be a better dose, but nights are still unstable even though they hadn’t been before.

Has anyone experience becoming more sensitive even to lower doses that used to be fine? Could going too high (1.1–1.2) temporarily destabilize things so that previously tolerated doses don’t feel as tolerable until the system settles? Does this sound like 0.5mg is still too high and I should reduce further?

I’m trying to figure out whether I should hold 0.5mg steady for a couple weeks and let things stabilize OR reduce lower OR if this pattern means something else entirely and I may need to increase again?

Would really appreciate hearing from anyone who’s experienced something similar.

I’m truly at my wits’ end and would appreciate any help anyone could offer. I’m trying to figure out what’s going on with my sleep and whether it could be related to LDN. Can a morning dose of LDN lead to sleep issues ~20 hours later?

For context, I have a diagnosis of endometriosis, long COVID, “histamine intolerance” (because good luck getting a diagnosis of MCAS in Canada), and POTS.

I started LDN in February and have been titrating up very slowly (about 0.1mg per week) because raising the dose too quickly (0.5mg to 1mg, etc.) was making my MCAS-like symptoms and sleep worse. I’ve had success going up 0.1mg per week so far and am currently at 1.2mg. The last two dose increases I did over a period of 5 days or so to see if I could find my optimal dose quicker. Overall, this medication has been quite helpful for my brain fog, fatigue, and MCAS-like symptoms.

I began experiencing some sleep issues about two weeks ago, and on Wednesday of last week, I switched my night dose to morning to see if that would fix my sleep issue. That night I got better sleep, then every night since then my sleep has been getting worse and worse. I haven’t been able to get more than 6 hours of broken sleep, short morning nap included.

Normally I fall asleep within minutes (including now), but wake up to use the bathroom and fall back asleep quickly. Now I quickly start to feel wired and hot when waking up between 3 and 4am to use the bathroom, and can’t fall back asleep until nearly 7am. No anxiety, no higher than normal stress levels, no sleep apnea, nothing that can explain this.

I’ve tried everything to be able to sleep a full night again. Melatonin, glycine, Benadryl, breathing exercises, CBT-I strategies, lemon balm, L-theanine. Nothing works.

**The only thing I’ve noticed is that since I increased my LDN dose recently, my histamine-related issues appear to be worsening ever so slightly by the day, which had also happened (but to a much more severe degree) when I tried to go from 0.5mg to 1mg when I first started the medication. This is the only thing leading me to question whether LDN can be causing my sleep issues. But can it really cause sleep issues 20 hours after taking it and not cause any sleep onset issues when getting into bed for the night?**

**Has anyone experienced sleep maintenance insomnia from LDN, especially delayed like this?** Is it even possible for LDN to affect sleep 20 hours after taking it?

Would really appreciate hearing if anyone’s had a similar experience and what they might have done to fix it.

I’m truly at my wits’ end and would appreciate any help anyone could offer. I’m trying to figure out what’s going on with my sleep and whether it could be related to LDN.

For context, I have a diagnosis of endometriosis, long COVID, “histamine intolerance” (because good luck getting a diagnosis of MCAS in Canada), and POTS.

I started LDN in February and have been titrating up very slowly (about 0.1mg per week) because raising the dose too quickly (0.5mg to 1mg, etc.) was making my MCAS-like symptoms and sleep worse. I’ve had success going up 0.1mg per week so far and am currently at 1.2mg. The last two dose increases I did over a period of 5 days or so to see if I could find my optimal dose quicker. Overall, this medication has been quite helpful for my brain fog, fatigue, and MCAS-like symptoms.

I began experiencing some sleep issues about two weeks ago, and on Wednesday of last week, I switched my night dose to morning to see if that would fix my sleep issue. That night I got better sleep, then every night since then my sleep has been getting worse and worse. I haven’t been able to get more than 6 hours of broken sleep, short morning nap included.

Normally I fall asleep within minutes (including now), but wake up to use the bathroom and fall back asleep quickly. Now I quickly start to feel wired and hot when waking up between 3 and 4am to use the bathroom, and can’t fall back asleep until nearly 7am. No anxiety, no higher than normal stress levels, no sleep apnea, nothing that can explain this.

I’ve tried everything to be able to sleep a full night again. Melatonin, glycine, Benadryl, breathing exercises, CBT-I strategies, lemon balm, L-theanine. Nothing works.

The only thing I’ve noticed is that since I increased my LDN dose recently, my histamine-related issues appear to be worsening ever so slightly by the day, which had also happened (but to a much more severe degree) when I tried to go from 0.5mg to 1mg when I first started the medication. This is the only thing leading me to question whether LDN can be causing my sleep issues. But can it really cause sleep issues 20 hours after taking it and not cause any sleep onset issues when getting into bed for the night?

Has anyone experienced sleep maintenance insomnia from LDN, especially delayed like this? Is it even possible for LDN to affect sleep 20 hours after taking it?

Would really appreciate hearing if anyone’s had a similar experience and what they might have done to fix it.