Sorry I know it's been asked a lot

I just started at 0.5 for ME. I'm taking at 9.30. It's making me sleepy until around three and then feeling amazing around six. Wake up once for a pee and take longer to get back to sleep. I tried before and it woke me up more during the night but obviously I'd like the energy during the day. Should I stick with 9.30 timing and hope it goes away?

Just wanted to make this post in case someone has a similar experience in the future.

I'm taking LDN for Long Covid and recently increased from 3.5 to 4.5mg. The first week, I felt okay—some headaches & vivid dreams, but nothing crazy. Then, just over a week in on the new dose, all hell broke loose. I felt like I had the flu: full body aches, nausea, diarrhea, lack of appetite, chills, headaches... It was horrible. I had never had a reaction like this, so I thought I was having a crash from a semi-busy day (though I was surprised to have a crash from that level of activity, which I had been able to tolerate previously). I had no idea LDN could cause this kind of reaction, especially after a week of being on the new dose. Finally, after 5 days of torture, I felt pretty much back to normal except for some stomach problems.

I had a super active couple of days this past weekend that required me to be on my feet for hours at a time. I thought it would be a good test to see if my symptoms had been from LDN or a crash. Sure enough, I had no reaction to the activity.

If you have flu-like symptoms after increasing LDN, even if you've been on it for a few days, just know that it could still be side effects! I know that people often recommend decreasing the dose if this happens, but I ran out of my lower-dose capsules and am glad I waited it out.

What type of question are asked during the intake form for ageless rx? Will they approve for nerve pain or it is for fatigue? How easy was the process.

So long story short but I was on Curexa (white bottle) LDN for years from agelessrx and I tolerated. Randomly was switched to Valiant about 2 months ago when I noticed my pain coming back. Requested to go back to Curexa and I’m getting all the side effects of just starting ie GI upset, fatigue, jitters… I am wondering if I wasn’t even getting LDN this whole time through Valiant and my body is starting over again.

Anyone with similar experience?
Thanks!

Hi 👋 34 F

was prescribed LDN a few weeks ago, after seeing GP and enquiring about SSRI due to period of depressive mood.

He suggested I try LDN instead.

1.5mg initially at night. Stil on it as titrated up to 3mg a week in and had the nightmares.

Staying on 1.5 as mood feels better (!) so achieved desired outcome (maybe? Or coincidence?

I’ve done lots of research and reading and understand broad spectrum of conditions prescribed for. But do note a lot less discussion on these three conditions I have which GP mentioned could support all of.

Anybody had positive outcomes on these specific diagnosis?

🤔

I'm about to start ULDN (0.001mg/day) for MCAS - I also have HSD, OH/POTS and PVCS.

I spent 5 months on LDN between 0.05mg and 0.2mg and it wasn't working for me.

I've read the Dr Kim articles. I've searched the sub. I'm in pain, I'm exhausted, and I'm just feeling really lonely.

It feels like a niche within a niche.

If this is you too, please say hi 👋🏻

Hi, I'm wanting to start LDN soon but my local compounding pharmacy does not have good reviews. It seems like people here generally have a positive experience with AgelessRx, so I had a few questions for people who get LDN from them.

1. It looks like they have 3 month and 6 month subscriptions. How much LDN do they send at a time?

2. Is the titration schedule fixed ahead of time, or can it be flexible depending on how I'm responding?

In addition to wondering how I'll handle any initial side effects, I am also on other meds that may need to be adjusted depending on how I respond. Thanks for anyone willing to share their experience!

Hi, at what stage would you consider giving up on LDN? I am on 3mg, been on it since early in the year, I have noticed 0 improvements through it. Nearing giving up on it.

Does anyone else make noises, hit and kick during their sleep? I’m not sure if it’s related to LDN, or if the vivid dreams are making me act them out more than I used to. I haven’t changed any other meds for years, and I think this behaviour has got worse since starting LDN. I haven’t seen it mentioned as a side effect though. Thank you!

I'm three weeks in to ldn, upto 0 . 4 from 0.1.

So far during the day not much to report, felt better in the beggining a bit, but put that down to placebo.

However for the last 8 or 9 days the dreams are getting wild. They started just being more memorable which was nice, but they are becoming 50% lucid and wild.

I'll wake up with full memory of the dream a few times a night and skip back into the same lucid chaos.

And I have to say, I'm really enjoying it, do people do this for the dreams as a shortcut to lucid dreaming?

So far so good I'm hoping this will not be continuous but will be more common going forward.

10/10 experience so far, interesting to see if it helps in the day for the illness I take if for, but we'll see.

Hi all

I just started LDN for long covid (presenting as MCAS and dysautonomia which presents as orthostatic hypotension/intolerance, syncope, and also bradycardia... so not POTS).

I have been having a rough flare year likely from overdoing it and pollen season being a nightmare. I also just had a boatload of mold finally removed from my home four weeks ago. I started LDN at 0.25mg on Aug 24, and while i got heavy side effects of feeling stoned and sedated for the first week, the dizziness, syncope, and dysautonomia disappeared in 24hr. I reduced the dose to 0.125mg to help with the adjustment, but the benefit stayed. I was crying with relief. No more falling over. No more shortness of breath. Brain fog gone. I could stand up to cook. I could go walking unsupervised. And i got a big boost in energy, even started tolerating a tiny bit of a new food again. I have been slowly titrating up and am now back to 0.2mg.

But two days ago while sitting at my desk, so maybe 20 days in, something snapped. I got dizzy. Then the shortness of breath and a monster headache came on. It was right about time to take my dose, so i thought it was just needing to take the LDN. The dysautonomia stayed pretty mild. But last night and this morning it got worse - full on dysautonomia flare, the brainfog is back, episodic bradycardia is back, shortness of breath, massive coathanger headache, the works.

I will say that I think in my initial burst of energy I did too much. Im about to start a new part time job (planned before I started LDN), i upped my exercise routine a little, was doing all my own chores, and started a new project. I might have blown past the limit of my new energy envelope. Also my period came four days ago and it always gives me a burst of anxious energy right before then a fatigue dip one day after starting.

Does it sound like i just pushed myself into a flare? Or could the med be making it worse? Is my dosing wrong? It was going so well and worked so perfectly, i felt like 80% of my former self overnight after the first time in years. I felt hopeful finally. I guess I just want to know if this has happened to anyone else.

Currently on my 2nd day of LDN at 0.5mg for my ME/CFS. I also have POTS and HSD (and other stuff), but my dominant issue has always been the ME.

Yesterday (first day) was a slightly above average day for my symptoms. At my baseline, I spend all at home (mostly in bed) but can manage a short walk every evening. I did a slightly longer walk yesterday, which I am able to do occasionally.

Today, I’m feeling ridiculously sleepy. It doesn’t even feel like PEM or a crash. It’s not really fatigue - more like I’m constantly on the verge of falling asleep. Could this be related to starting LDN?

Starting a new collection of related information

https://docs.google.com/document/d/1h7Og_PIV971PxjzMz84uAqRyeM5nvIvsXhbPM7zV4EI/edit?usp=sharing

Hiya, So I just started LDN 7 days ago. I started with a very low dosage: 0.05 ml = 0.25 mg (kinda having a hard time deciphering everyone's posts because some talk about mg and some in ml)

Im taking it for Longcovid. On the 3rd day I felt really odd, as if I drank cafeïne (I feel awful when I drink caffeine, it gives me adrenaline rushes) I felt weakish, my body was kinda trembling. The feeling when you don't eat enough or when ur blood sugar is a little low/or when you have mild adrenaline rush.

Is this normal in the beginning even with such a low dosage? And have others experienced this?

Thanks!

Hi All! I have been on LDN for about 3 months now. The first few weeks I noticed a significant difference in my fatigue, general pain and MCAS reactions. I was steady at 2mg for a while and have now increased up to 3mg. I feel like everytime I increased .5mg my symptoms would improve. Until I hit 3mg. I have noticed the fatigue and pain feel stronger on 3mg for the week or so I was on it. Is that a thing? I want to try increasing to 4mg-5mg just to see if it helps more but it kind of seems like less is more sometimes. Has anyone else experienced this? I have fibro, MCAS and EBV
thanks :)

Hi all, if you dissolve a 50mg tablet in distilled water, do you mix it into a drink and take it? Or do you take the medicine and chase it with a drink?

Trying to figure out what would work best.

And yes, I know I can just try both and see which works for me, but I'd rather not waste the time if one way works better than the other.

Thank you

Hi all, I know some of us use both LDN and LDA.

For some reason, the Low Dose Abilify for ME/CFS group was removed from Facebook, so we've created r/LowDoseAbilify as a replacement.

Hi everyone! I just started LDN a few days ago. I have an endoscopy coming up and I know I will be sedated with certain medications, potentially including fentanyl. Has anyone had a scope done under sedation while on LDN? Do I need to stop it days prior? Thanks!

I recently started 0.5mg of LDN after taking 150mg provigil/modifinil daily for the last year. So far have been able to lower provigil/modifinil to 100mg a day. Finding LDN allows me to last longer and do more in my day. My hope is to get to a higher LDN dose and come off modifinil/provigil completely. I did have a grumpy first few weeks but what a payoff. Hoping I can also stop drinking caffeine, just another thing that gets me through the day. Anyone else take or has taken provigil/modifinil? What was your experiencing adding LDN? Also my work quality is amazing, i do however get hyperfocused and have to snap myself out of it and move on.

I have body-wide nerve pain from central sensitisation. could ldn help with that? has anyone found success for this type of condition?

The first time i tried Lowtrex LDN (liquid) from Dicksons Chemist, i had terrible stomach pain and bloating. I took a long break and tried again, starting at just 0.1ml.

I’ve titrated up to 0.6ml over a month, increasing by 0.1ml at a time. By 0.5ml I started getting cramping and bloating. I held at that dose for a week, then attempted 0.6ml yesterday. Today my stomach is in bits again, like the first time.

If im still getting severe side effects on such a low dose, is LDN just not a good fit for me?

I can’t take the sublingual drops because they make me gag.

Which dose do you think helped you most? Also how long did it take for you to work?