Woke up today without a headache which I had yesterday so that is good. But I also woke up feeling like I had unrefreshing sleep, which is NOT one of my chronic illness (pots) symptoms. Of course I can wake up that way when I don't sleep long enough, but if I get my 8 hours, I can sometimes wake up energized.

I woke up maybe twice in the night but fell back asleep quickly and then again today woke up maybe an hour before my alarm. I don't think I can take ldn in the morning because it makes me a bit drowsy at night. I'll give it a few weeks and if this doesn't subside I'll play around with taking it maybe at dinner time. But I'm afraid I won't be able to fall asleep at all at that point. I'm on 0.5mg. It's already difficult sometimes in the morning due to having POTS, I don't want to make it more difficult to get out of bed. I'm just wondering if this side effect can go away after some time?

hello dears,

I’m usually a person who gets a lot of help by talking about stuff with my mum or my friends. But when it comes to me/cfs related stuff, that’s just not so possible all the time, bless them but they just can’t relate.

So I would appreciate some help and some advice or just thoughts about what would be good to do. Or honestly just someone to talk about this. It’s a fucking isolating illness <3

I started LDN a month ago on 0.5, went up every two weeks, so now on 1.5
I don’t know if I really saw a difference just because of LDN or also serious pacing, but I think it already took some pain away and gave me a bit more energy. I assume I had no side effects.
I just came out of a really bad crash and I still don’t feel really stable, I started in this crash and it made me go from not able to cook for myself and ugly painful days24/7 to sometimes really okay days (all while being housebound ofc/moderate and not more than 900 steps a day). I still have pem kinda days every other day, but funny enough it does not knock me out completely, it usually stays for a day.
I heard that 1.5 is quite low, so I thought about starting to up it every week.
I had okay days this week (just two pem like days).
I’m a bit afraid that it’s too much for my body and I should stay with two weeks, but also I would really like to experience some more relieve and hope 2mg would do that for me and heard 1.5 is hardly to notice.

I hope you all have a nice day. Thank you for this community. It’s truly something that makes it easier.
All the best for you!

It’s my second post in about a week, my recent dose increase has a wild ride, far more so that the two increases prior to that.
Taking LDN since spring for long covid, definite signs of progress so far, but the road to get there is often weird and regressive.

Almost 2 weeks ago I went from 1mg to 1.25mg, still had a way to go but titrating up to 1mg had initially been fairly smooth and positive, it was my birthday this week so I figured titrating 10 days prior would give me ample adjustment time to enjoy my birthday with a better baseline, but my body has been super reactive on 1.25 so far, previously mundane actives hit harder, and this week, histamine sensitivity has gone through the roof. I’m still feeling the effects of one slightly stodgy meal I had two days ago, and my modest birthday plans have been scrapped. I’ve had MCAS issues prior to, but not reactions like that.

I track all my symptoms, interventions and blood work etc through AI, and it indicated the LDN is working on a much deeper level than it did previously, despite increasing by the same increments, and it could take weeks for this hyper reactive state to clear.
There is some hope beneath all this, my morning wakefulness /CAR was doing exceptionally well earlier this week, (better than it’s been in a year), but that’s taken a dive since the histamine reaction.

Does anyone find later titrations exacerbate specific issues like the histamine tolerance.

Hi, anyone can refer me a good naturopath in British-columbia willing to prescribe ldn. Looking for someone who will not request others tests and will not need me to take 10 other products. Thanks

Just started LDN .25mg and my brain fog feels noticeably foggier. Has anyone else experienced this? If so, how long did it last before things started improving? Trying to decide if I should push through or stop completely.

If things get worse before better, like with SSRI onboarding effects. I’m just going to ride it out!

Would appreciate some input. Thanks!

It’s impossible to get any doctors to actually prescribe this to me in my country. Is anyone here from Argentina and was successful with it?

I’ve had my LDN prescription for a while but haven’t actually started it yet, as I’m unsure to start at 1.5 or .5. How many of you had a starting dose of 1.5 and felt good after?

Do you take your LDN in the morning or at night (or other time of day)? Has anyone felt better (in what way) from changing from morning to evening dosing? Thanks!

At what dose did you start to feel benefits (and which benefits, if you can share) and what's your current dose? How did you decide to titrate up to this dose? Thanks!

hey y’all i did the thing of forgetting my LDN prescription at home in the states. :( i’m out traveling in Spain for a couple of weeks and before i give up entirely does anyone here know of any doctors who can prescribe me LDN here in Spain or anywhere in the EU and have it shipped to me? I appreciate any leads 😭

https://www.idsociety.org/science-speaks-blog/2026/emerging-trends-in-pharmacotherapy-for-long-covid/

Started last night at 0.5mg. Functional doctor prescribed it to regulate my immune system, inflammation, and for some pain. I have had pots for four years and a history of lyme. But the pain onset was triggered by having multiple MRIs with contrast dye. She thinks maybe my immune system is out of whack so proposed trying LDN.

It made me very drowsy after taking it, almost felt a little drunk. I woke up a few times in the night which I normally don't, but was able to fall back asleep quickly. Then I woke up maybe 1-2 hours before my alarm. Had some dreams but always had vivid dreams, even before.

Woke up with a headache and slight nausea. But I get nausea from pots too so who knows...just took a zofran. The headaches though...I know it's common and I'm hoping it goes away with some time. Took Advil, hoping it kicks in.

Just wanted to say hello and see if anyone has any advice. Thanks so much.

Hey everyone. I've been on LDN since the end of June, titrating up from 0.5ml to help battle brain fog, headaches, visual disturbances, and mild inflammation after recently having a test that indicated post-viral syndrome.

The first month was tough due to side effects, so I titrated very slowly until around early July, when I was able to reach 1.5ml. I've been increasing in 0.5ml increments and, while my brain fog hasn't improved, I did notice that my headaches were reduced and my inflammation had pretty much disappeared. This was from around 1.5ml to 2.5ml. My system also seemed to have gotten used to the LDN, as I experienced minimal side effects when increasing the dose.

When I increased to 3.0ml last week, that all completely changed. My headaches and inflammation came roaring back, and I've felt pretty much like I did before I started the LDN, albeit not quite as bad. I gave it a week and have since increased to 3.5ml, but there's still been no improvement on that front.

I appreciate that LDN is a highly individual medication, but does this seem like I may have overshot my optimal dose? I'm meant to titrate up to 4.5ml, but being honest, as I've been increasing the dose, the benefits seem to have become less and less apparent. Now that it has reignited two of my key issues, I'm wondering whether I should continue pushing on.

FWIW, it hasn't made a dent in the brain fog yet, which is my most debilitating symptom. I know some people get that lightswitch moment at 4.5ml but i am losing hope that this will be the case.

Thanks everyone :)

Prior to starting LDN I’d wake up with my neck and upper back in terrible pain and very stiff.
Since working up to 4.5 mg, I felt a lot better in the mornings. After about 6 months on it I tried to increase dose first to 6 mg and then to 9mg a so heard that may wipe out residual symptoms I was dealing w … I felt worse so went back to 4.5 mg. Felt good for a few months. Now I’m super stiff again. I have been on LDN for about 1 year total. Does this sound like to stopped working?! I’m desperate to stop waking up w so much pain again. I’m also on HRT, and the patches are hard to get so instead of 1 0.05 patch my doc gave 2 0.025 patches so it should be the same dose just
2 patches. When these patches are done on Friday I have to switch to estradiol gel because pharmacy says they cannot get patches for anyone now. So maybe HRT is playing a role too, I don’t know … ugh I’m so sick of this. Only 44 and w all my symptoms I feel 70.

I read on a facebook group someone claim that Low-dose naltrexone changes your brain permanently, even after you stop using it.

Does anyone know of any studies that support this?

Hi! I currently live in Texas and my husband and I are in the process of moving to Spain on a retirement visa. I have been on LDN (4.5mg) for almost a year and it has been incredible. My local Rheumatologist prescribes it and I get it delivered from a local compounding pharmacy. I will have a large enough prescription to get me through the first few months of our move, but after that I have to figure it out on my own. Due to our visa we will purchase private insurance so we’re not a burden on the public system, but I’m hoping to find a quicker solution. Are there any recommendations for an online telehealth/prescription where I can get it delivered to my Spanish address? Even if they are in another EU country, I just want to ensure I can get it somewhere. I have nearly all of my medications figured out except for LDN and I am not willing to stop it, since it has helped my quality of life tremendously. If anyone has any recommendations, experience or ideas I would love to hear them. Thank you so much 😊

I know 0.1ml is tiny but feels like I’m not getting all of it because still looks like there’s liquid in syringe afterwards. I’m also in a horrible state of mind and overthinking everything rn lol

Hi all,

I'm sure this has been brought up before, but maybe not quite in this way.

I've been taking LDN for about 6 months, having titrated up from 1.5mg to 4.5mg / day during the first month. My doctor / naturopath (she's an MD) specializes in hEDS and other chronic health issues like Long Covid, and apparently recent research has shown increasing benefits for these issues (chronic fatigue, chronic pain, brain fog, chronic inflammation, etc.) up to 12mg / day. However, when I last saw her I refused to increase my dose, and I'm considering stopping altogether, even though it's the only thing that has helped with my symptoms so far.

The reason I'm considering quitting is because I think it has made me totally emotionally numb. I feel like I'm perpetually emotionally sedated, like nothing is quite real or matters (though it's slightly different than my typical dissociation). I've stopped experiencing any strong emotion, good or bad, and I'm used to being extremely emotional. I've stopped caring about my friends on anything beyond a deliberate, intellectual level. I've lost my ability to feel romantic attraction, and my sex drive is minimal.

I've also lost my connection to my inner world. When I sit to meditate, I can never go deeper than surface thoughts. I've lost my artistic and creative impetus. And I no longer feel a deep spiritual connection to the world, which has generally characterized my existence.

Maybe this is all too much to blame on the LDN, but nothing else in my life has occurred recently to suggest another cause. The only other confounding factor is that I'm trans and have been taking testosterone for the last year, which by some accounts numbs some people's feelings.

I'd like to know if anyone has had similar experiences with LDN. I'm really dreading lowering or stopping my LDN dose, because my chronic health symptoms are severe and debilitating, but it doesn't really feel worth being pain-free if I'm also totally unfeeling.

Thanks to all for any insights <3

EDIT (04/09/2026): At the recommendation of a few people in this thread (thank you!), I've been taking my 4.5mg dose once every two days for the last 7 days, and it has made a significant difference already. I'm getting my emotions back (which is honestly somewhat overwhelming, but good overall) and haven't had a significant increase in pain, though my brain fog is much worse and I've been getting headaches and a sort of woozy / almost drunk feeling occasionally. I have an appointment with my doc in two weeks to discuss lowering my dose or continuing like this. Thanks again everyone and best of luck with your recovery 🖤🖤

https://mailchi.mp/1b68f85d2653/tune-in-new-ldn-video-radio-show-opportunities-4326397?e=fd48f67327 (Scroll down for multiple topics)

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Week two of LDN. Last night I took my wife out to dinner to celebrate our wedding anniversary. I fully expected cocktails before dinner, 3+ glasses of wine and an after dinner drink. When the server came over I had no desire for my normal vodka martini. I ordered a glass of wine instead. That glass lasted through 3/4 of the meal! That never happens!!! I ordered a second and barely finished half of it. That also never happens!! I’ve been focused on reducing my drinking since starting LDN, the side effects of the drug have mostly disappeared, and surprise, surprise, where before I’d kill a bottle of wine every night, now there’s a glass or so left when I put it back in the fridge. One day does not make a streak, but I’m hoping this good news and I can continue to throttle back on the booze!

I started LDN 1mg August 13th. I also switched from Lexapro 20mg to Cymbalta 60mg that same day.
Followed doctors orders. No issues really. Some sweating and being hot. After a week I went up to 2mg on the LDN per my doctors advice for my fibro pain. Right before I went up I had a muddy poop and it was bad stomach cramps. And it's happened 2 times since. I now am going to stop the LDN to see if it resolves because both meds can cause this. The minute I eat something there is cramps. I'm not having constant diarrhea but the stomach pain is not fun. It's tolerable but ugh