Has Anyone Had to Give Up on LDN Because of Fatigue/Migraines

I had to start at .125mg. .25 was too much.

Also for the record - .125 had noticeable benefits. That’s why I’m such a big advocate of starting everyone super low. Much smoother process IMO vs reading these situations over and over again.

Garzie: If you happen to see this note and don't read the entire thread, please jump to the end. Thanks!

Hey, running wild:

I'm sorry for your persistent deep fatigue, horribly stiff neck, and morning migraines. All of that, on top of everything else you deal endure, must be miserable, exhausting, and frustrating beyond description. I deal with some of these symptoms, too, but not all of them at the same time. No one knows your suffering but you.

I've been taking LDN for several years. I don't even remember how long, but I know it's been at least five years. In my case, I was fairly lucky, it seems, as I was able to start LDN at 1/2 mg daily without any issues. In fact, the very first night, my sleep improved.* Then, every seven days, I increased my dose of LDN by another 1/2 mg.

At either 3 mg or 3.5 mg, I found my sleep being negatively impacted, so I backed down to a lower dose for another week, before trying to increase the dose again. However, I was never able to get past that 3 or 3.5 threshold. My provider stated I could either (1) stay at the lower dose and keep taking it before bed, or (2) try the higher dose, but switch to taking LDN in the morning. I opted to stay at the lower dose at night.

Through further testing, I ended up finding no obvious difference between 3 mg and 2 mg, so, due to cost, I've stayed at 2 mg. After reading Garzie's comments about LDN in this thread and others, though, I've wondered if I might benefit from trying much smaller doses and more gradual ramping. That feels like more than I'm willing to take on for the moment, so I'll probably stick with 2 mg at bedtime.

In your case, though, I'd consider going lower on the dosing, just like Garzie suggested. Are you able to get naltrexone in a liquid form? Or, a pill cutter might help with tablets, though my pill cutter mostly makes a mess by fracturing pills into a mixture of powder and tiny fragments of varying sizes.

Garzie: Can LDN tablets be crushed (such as between two spoons) into powder and dosed that way? I'm not sure if the tablets are coated with anything that might affect their degradation if they're broken and not taken within a certain amount of time. A crushed 1 mg tablet might take a while to finish when microdosing.

Regards,
Dude

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*Being a skeptic, though, I figured the improved sleep must have been a coincidence, because I thought the dose would have been to small and too soon to have an effect. But, through subsequent testing and retesting over the years, the LDN does, without doubt, helps my sleep. The effect isn't great, but it's noticeable and enough to keep me paying out of pocket for it. I also use low dose, extended release melatonin. With those two compounds together, my sleep has improved from "really, really crappy" to merely "really crappy." Still, I'll take any improvements. I'm also trying to get acclimated to CPAP therapy, but that's not going so well.

i thought i had a post saved on this already - but cant find it - so will recap below
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basically i buy normal dose naltrexone from a reliable online pharmacy. 50mg x 10 is around $15
i dissolve 1 tablet in 50ml of water and this gives a 1mg per ml solution

now using a 1ml graduated syringe you can quite accurately dose from 0.05mg to 5mg in increments as small as 0.01mg

this is perfect for gradually working up in small increments every few days - which is what i did
going from 0.5mg to 5mg over around 9 months without overdoing it and having to stop.

if i wanted to dose at such low levels that the 50ml of solution would last many weeks - i would use 50ml of 80% water 20% alcohol solution to prevent any microbial action degrading the product over time

i hope its of some help

Thanks for all your responses. It's obvious we all have different reactions to not only LDN, but other treatments, as well.
I wanted to do as Garzie does with the 50mg tablet, but my LLMD wouldn't do that so ordered 1/2 mg capsules. I would have pointed out I pour most of it out, and end up taking less than 1/4 of a mg. It just may be a little different each time, but close. Don't like doing it that way.
Another question would be: Has anyone developed tremor or more severe tremor from LDN? It's yet another worry, but I don't think that low a dose could cause tremor, though I am sensitive to LDN. It's just another thought in my head recently that I have to battle off to keep from freaking a bit. Neurologist I have is useless.

Dude - Good seeing your name. Your compassionate thoughts are appreciated. But it is something we all deal with on this forum in different aspects. You have had plenty to deal with, so my thoughts are same for you. The hardest part is the mix of autoimmune and Lyme. It's all a guessing game on which way to go, and either way could help or make things even worse. Hoping the LDN is not causing tremor, yet it would be a relief if I knew the reason. Sjogrens can cause so many issues, as can Lyme and co-infections.

Just to add, I tried LDN starting at .25mg, and it was horrible. It caused the worst migraine I've ever had the next day that rolled over into the third day, and messed with my sleep. I have to start on tiny doses of it. You likely are on too high of a dose. I would cut it down, or skip a day or two in between doses instead and see if it gets better. The LDN Research Trust website has all kinds of information on LDN you could look into.

They say this about migraines:

"Why do headaches occur with LDN? Mostly this happens sometimes when you're titrating up. We don't really want headaches to occur. If headaches do occur we might need to have you at that lower dose for a longer period of time. When you're on your maintenance you shouldn't be experiencing headaches. I would step back down to the previous and then stay on that. I will add that headaches could possibly be occurring because there is an endorphin kind of rush that's happening in your body when you're taking LDN. It's bound to the opioid receptor and it tricks the body into thinking it needs to make more receptors and more endorphins and so when it releases after about six hours is it the half-life. You get this rush and that rush is what's thought to regulate the immune system. A headache can also happen if you're not titrating up appropriately. So there's a lot of factors with this."

https://ldnresearchtrust.org/why-do-you-get-headaches-when-taking-low-dose-naltrexone-ldn


A note about measuring it out. The compounding pharmacist that had my prescription said you can pour the pills contents in a measuring glass, then mix it up really well and use a syringe to measure the dose you need. They said it could be refrigerated for 3 days, but to throw it out after that and make another. They also said its not the most accurate, and to mix it as best you can before you take a dose because some of the pill contents sits at the bottom of the water. Its likely to mess up microdose measuring though. So I asked about a liquid form, and they were able to make it that way so I can measure more accurately. Maybe this could work for you?

good plan RW

let us know how it goes

consider using the diy liquid technique with your low dose tablets

you can then dose easily and consistently below 0.1mg

given your experience i would suggest starting very low indeed - perhaps 0.05mg or even less

if you get no reaction at all at that - thats fine after 1 week you can simply start to ramp up

alternatively - maybe consider shelve the LDN for now and start the bicillin - since you did well on that before - and so you are only changing 1 thing at a time

all the best!

Just out of curiosity, I looked up the half life for LDN.

One article stated it's four hours, a second article stated it's six hours, and a third article stated it's between four to six hours.

Garzie - I read on some forum a lady, who has Lyme Diisease, said she herxed from it and said LDN has antibacterial effects. I didn't think that to be true.
My thought has always been what you mentioned - immune mediated effects. Makes more sense. But I did not know it could have the impact of a "week long herx from a single day of abx." That surprised me - that that little LDN could have that kind of impact. By the way, that is not doubting you.

Girlie - Yes, have compounding pharmacy. It is the one who made this first two months worth of .05 capsules, which I empty out to about 1/4 or less mg. I've had issues with LDN before (migraines, depression, fatigue), but I have finished 15 days worth and thought side effects would pass, which they may have.

If I still feel like this after being off for a week, then I'll know it's not the LDN. I also noticed in old posts that you had tremor in hands and legs early on. Have developed that and am concerned/thrown on if it is the neuropathy and Sjogrens causing it or Bartonella. Lot at once has hit, and the weak legs and tremor really get to me. Always have been a physical person, and strength has been one of the few things all this had not effected, until now. Concern is it is nerves dying as I also am no longer able to grow hair on my legs.

Orbiting - Thanks for the information. I always thought LDN modulates the immune system since it is used for autoimmune, which is Sjogrens, in my case. That's why I didn't think it would cause a herx.

It's very hard to work up on it, because my system reacts so easily to so many meds or herbs. Are you doing better now?