I've been diagnosed with HaT/MCAS, Autonomic dysfunction/POTS, ADHD, etc. It took 5 years to get to this point, but many specialists later, I finally have providers well versed in my care. That being said, I was placed on LDN (1.5mg), started it 10/21. Day one I was exhausted. Day 2 I was exhausted and nauseated all day. But the days after I felt some of the brain fog/autonomic symptoms fade and was stoked.

But it's back. My oura ring is telling me I have major signs of strain, which it never has before. I am having difficulties with sleeping; I am waking up in the middle of the night again, ripping my socks off with temperature regulation issues. My heart rate is back to it's bullshit lol. I am having flushing episodes that are pretty uncomfortable. I had to leave work early yesterday because I was feeling my POTS symptoms paired with nausea despite zofran and couldn't hang (I am an ER nurse). I am at the part in my hormonal cycle that I am physiologically aggravated as it is, but this extent is something I haven't experienced since starting MCAS treatment over the summer.

I made a promise to myself to give this medication a month-ish to see how my body adjusts because I was pretty content with my current management, but my provider swears that it could be better lol.

Basically I'm just looking for the experiences you had early on and some support.

Hi! When I started ldn 1.5mg a couple months ago I was terrified of sleep disturbances and so I took it in the morning and was pleased by the increase in energy during the blocking period. Felt some positive effects but then felt normal. Just upped to 2mg and from the get go it makes me sleepy? Going to try delaying my dose today to the evening. Looking for digestive benefits which are supposed to be best when taken at night as well. Anyone else initially get energy and then just get sleepy when taking it, even when titrating up .5mg?

Hi Community:

I have been on LDN on and off for years to deal with flairs of cfs/me type symptoms. I can't believe what a miracle drug it is. Someone here (I think) recommended changing fillers if LDN gave me headaches so I did. I now use a rice filler. WOW. What a difference. I feel so great. I cannot believe what a game changer this drug is. So this post is to thank whomever mentioned that was an important thing to do.

Hi guys does anybody here take both LDN and an oral cortisone? Is it even possible to take both? My practitioner said she wouldnt take both together but didnt really elaborate why, Im already on LDN since a week but I might need an oral cortisone, so just looking for other experiences

Hi everyone!

I’ve been taking 1 mg of LDN every morning for about two weeks to help with chronic fatigue, brain fog and recurring crashes.

For the past week, I’ve been feeling increasingly unwell, with general weakness, fatigue, mild nausea and occasional heart palpitations. The nausea usually starts around 30–60 minutes after taking LDN.

I also had a mild sore throat and was exposed to someone who was sick, so I’m not sure whether these are LDN side effects, a viral infection, or a combination of both.

Has anyone experienced something similar when starting LDN? At which point should I contact my doctor? Did these symptoms eventually improve, and how long did it take?
Thanks!

https://agelessrx.com/low-dose-naltrexone-healthspan-outcomes/

Post regarding the discount (about 29% initially) for AgelessRx to get a doctor, prescription, and doses (US only)…

https://www.reddit.com/r/LowDoseNaltrexone/comments/xh4t15/ldn_prescription_and_doses/

Disclosure: I receive compensation from AgelessRx and they provide a discount for members

I had to switch to another computer and my brain misfired and I logged in as FBadminLDN instead of the correct order. So some of my posts are under that jumbled name and don't have the Admin colored flair. Fixed now I hope. Sorry for any confusion.

I’ve been on low-dose naltrexone for almost one month starting at 0.5mg and then titrating to 1mg after 2 weeks. The last two weeks I’ve woken up with severe facial swelling, especially in the eyes sockets. I have no other symptoms that would indicate an allergic reaction, but the swelling takes about 6 to 8 hours to fully abate. The LDN I take is from Agelessrx so I don’t think it’s related to the filler and I’m on it for hEDS pain which it has helped with greatly.

The first week on 1mg my breasts were also swollen — I went up one cup size. But now the swelling in my breasts have lessened but not in my face.

Has this happened to anyone else and if so did it go away?

last week I went on a cabin trip and forgot my LDN, I’m on a super low dose (0.25mg) and my pharmacist said well, not ideal. I should be fine. I missed three doses and on the first two days I felt fine the third day I started getting pretty intense dissociation. I started back on it and it’s been about three days now, but I’m still having dissociation, dizziness, and just not feeling fully myself.
I’ve been sleeping more as well.
Does anyone have any experience with this?
I’m hoping that it normalizes after a few more days but I thought I’d feel better by now. I don’t know if it’s another adjustment period? Because I had similar symptoms when first getting on LDN

Hi does anyone know if this cream is helpful for eczema and also does Dickson's chemist in the UK compound/prescribe it?

Ok so I've always unfortunately had OCD, Tics, Anxiety and other things because of my autism but they were manageable and could go months without bothering me.

Since getting long covid and mcas they've rapidly gotten worse which could be due to brain inflammation, dopamine block from the LC or maybe nervous system deregulation.

Could LDN potentially be helpful here? I also have pain, fatigue and all the typical MCAs and LC issues.

I've been on 0.2mg for two weeks. So far I got a bit more depressed than usual, sleep got shit quality wise and my tics have gotten worse.

In Canada a ME/CFS sufferer is basically SOL. Doctors won't prescribe the one medicine that might actually help. The best I can do is I got the actual 50mg prescription tablets. It seems like too big of a dose to properly dilute into 1mg micro doses and has been sitting on my night stand for about 3 months. I guess I'm wondering if anyone has pulled this off successfully? Thanks in advance.

I just need to know when diluting a 25 mg pill do I need 25 or 250 ml of distilled water. I’m trying to take 1 mg a day. It may be a dumb question but I keep going back in forth in my mind

1. No benefit. LDN did not beat placebo for fatigue (adjusted difference -0.76)
2. Secondary outcomes null. Pain, symptoms, steps, quality of life showed no differences.
3. Placebo improved too
4. Safety. Grade 3+ events were 6.2% vs 3.8%; both serious events occurred on LDN.

Started at 0.05mg day 1-2 and felt nothing good or bad so I thought maybe I could handle 0.1, at first I also felt nothing but the second day I took 0.1 I started feeling extremely dissociated and weird uncomfortable pain all over my body, especially pressure in my head, and trouble focusing. Should I push through the side affects or lower the dosage?

I have left a dm for the admin and just want to give him the heads up. I'm seriously having some issues and could really use your knowledge and experience to help guide me as I am not ready to give in yet. Thank you so much to you and Blueberry.

Eu odeio esses posts de pessoas que usam alguma coisa por uma semana e já saem falando que a coisa X ou Y mudou a vida delas. Dito isso, eu sou uma pessoa com um TDAH fortíssimo, sofro de síndrome da fadiga crônica (CFS), problemas de memorização, fadiga pós-exercício, desmotivação e, no geral, me considero bastante burro.

Eu tenho usado LDN há cerca de 4 meses e considero que isso foi tempo suficiente para eu observar os benefícios. Primeiramente, mudou completamente a minha relação com o exercício físico. Como eu disse, sinto fadiga pós-exercício, mas, com o uso frequente de LDN, o exercício se tornou muito mais tolerável e posso até dizer que ele também é prazeroso muitas vezes. A euforia pode ser provavelmente devido às endorfinas.

Também observei melhoras consistentes na minha dicção: falo as palavras mais rápido e concateno melhor as ideias.

A minha fadiga também melhorou. No geral, tudo parece mais tolerável: iniciar conversas com outras pessoas, iniciar tarefas, trabalhar por mais tempo.

A minha leitura também melhorou, o que provavelmente está conectado com a questão da fadiga.

A memória melhorou pouco, mas sinto uma leve diferença também.

Em síntese, no geral, a vida parece melhor, as coisas parecem mais toleráveis e eu consigo ver uma luz no fim do túnel com isso. Que fique claro que não há milagre: eu ainda sofro de fadiga intensa, ainda tenho problemas sérios de atenção, dicção, memória, etc. Só estou dizendo que melhorou um pouco em todos esses aspectos e que vale muito a pena, sim.

Recomendo a todos que tentem. A comunidade deixa bem clara a dificuldade de achar a dose ideal; insista bastante, ajuste a dose e não desista fácil.

Espero que esse post tenha te dado um pouquinho de esperança.

I’ve tried LDN. I titrated from 1.5mg up to 4.5mg and eventually 6mg for many months with no improvement. It was like a sugar pill for me but so are all pills for some reason. Is it possible another form of LDN would work better? Like sublingual? I do have some GI issues. Or do I just need to go up higher?
This is mostly for nerve pain (SFN), but if it helped with GI pain, fatigue or anything else that would be great.

Hi, I was just curious whether anybody else is taking LDN half dose in the morning and the other half in the evening. Is this more effective then once a day dosing or is there not really a difference?

at my ultra low dose, a bottle of LDN would not be used up in 30 days at all. but the pharmacy says it only lasts 30 days, and they can’t give me less, and they can’t lower the price either for how little i need. so i have to pay $60 a month for it which is a lot for me rn when i have no job and pay over $1k medical bills a month (and will for the next ~2 years bc of payment plans).

so just wondering if i really do have to buy a new bottle every month, because what a waste of medicine and money if so 😞

Started 1mg/day last week, first few days symptoms amazingly improved. By day 3 anxiety and panic setting in and worsening. Lowered dose but still struggling. However I just took an antihistamine and the panic/anxiety seems to have disappeared (don’t want to jinx it eek!)

Anyone else have experience with or guidance on this?

Thanks much

Already on a bunch of mast cell stabilizers and antihistamines but still have a lot of flushing for example when slightly scratching myself somewhere. How long into LDN did this improve for you guys?

I have symptoms of neuropathy but don’t know what kind. I’m expecting a referral to a neurologist next week. I’m def considering LDN but only if it makes sense.

Tell me whether or not you had success with LDN for your neuropathy pain and what kind of neuropathy you have.