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Comment by treeman79 | Hacker News Reader

I have Sjogrens and would easily qualify for MS. Burning pain throughout nervous system. LDN has been fantastic in reducing pain from extreme to near zero. Got off all my painkillers.

All the support forums rage about how awesome it is. I had a nightmare of a time finding a doctor that had heard of it. Finally had to get an online doctor.

Diet changes also work, but I have to be really strict without LDN. Or a little strict with LDN.

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My father had MS and had to get an online doctor/private prescription to get LDN. It was pretty much the only drug that helped him, but the general practitioners would not prescribe it on the NHS.

Are there any side effects to LDN? Or just general unusual effects from having it in your body constantly? Is it rough on the liver at all?

The LD is for Low Dose and it has a short half life of 4 hours, though sensitive can vary by an order of magnitude so how long it lasts can depend. Typically people start low and slowly build up. You don't notice the initial effects (unless you're unfortunate enough to need opioids during that time), it's the subsequent bodies reaction overnight that has the real effect. Most healthy people don't notice anything good or bad. Sick people can get a variety of effects and some quite strong but very rarely an emergency.

Anecdotally it appears that if you get a strong effect then it is likely it'll be more beneficial long term. Most common effects are nausea which generally subsides in a few weeks, extremely vivid dreams that you can remember which lasts longer. Basically low grade serotonin sickness and perhaps some dopamine dysregulation - some people do get dopamine surges. It helps normalize neurotransmitter levels and your brain might not be used to it. Usually you sleep less but feel more refreshed. I had one of the rarer reactions which was extreme energy, I started LDN for ME/CFS and thought it had cured me and that I now had a new problem of too much energy. Unfortunately it wore off after a few weeks, but it did plateau to a higher baseline.

I should add LDN can normalize thyroid function so if someone is on medication it’ll likely need to be adjusted.

And the dreams are next level crazy vivid, it’s probably the most common complaint. Sometimes it can be hard to go to sleep knowing there is a dragon waiting to eat you again. There can be a dissociative feeling when you wake up as you try to work out what was real and what isn’t. Was I really just storming the beaches in Normandy? Hmm seems unlikely, but it feels like I was just there.

Oh yes. I forgot how vivid the dreams were. Those calmed down after a few months for me

Naltrexone metabolizes into methylnaltrexone which lasts longer in the blood and has stronger but slightly different binding profiles than its parent. Is the response from LDN the result of naltrexone, its metabolites or both?

I ask because I'm genuinely curious, I'm ignorant of its use for this condition.

I’ve read at these doses it lasts < 4 hrs but I don’t know the mechanism. It is usually taken at night an hour before going to bed and the post inhibition reaction can be felt the same night during sleep so it must be a matter of hours.

Naltrexone gave me the rarest side effect - seizures, and that's extremely rare because it generally bolsters seizure threshold. It surprised my doctor. About 3 months into taking it I had a complete absence seizure at work while operating a 1kW LASER. The thing's supposed to fire for a split second, I had it happen just as I was hitting the fire button, kept the fire button held with my body for just short of a minute. I came to from the smell of vaporizing metal hitting my nose. Whoops, $10K experimental board wrecked.

As soon as I got off the medication and let it clear out of my body for a month, I quit having auras or any other odd seizure-related symptom. Damn glad that didn't happen while driving.

The one side effect I’ve heard from my doctor who has patients on LDN, that fortunately seems fairly rare, but that can catch people off guard is sudden depression. People a few days to a week into starting it suddenly having uncontrollable crying and other things. Apparently corrects quickly after stoping so not something to be afraid of so long as aware. LDN seems to help a lot of people.

I think this is a reversal of emotional blunting. I consider becoming overly emotional a good indication that LDN will really help and heightened emotional sensitivity will wear off as the brain adjusts. Stiff like crying over spilt milk. Certainly people should be warned that they could be in for a bit of an emotional roller coaster.

Can’t take it with any opioids. Plus side. I no longer needed opioids (tramadol) to manage pain.

I wake up with energy in the morning. First few months it was like viagra on steroids in morning. That eventually calmed down.

Otherwise I’ve had no side effects, and I tend to get all the crazy side effects of almost every medication.

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