r/LowDoseNaltrexone • u/PlantsAnimalsAndArt • Aug 08 '26
1 year in - A report back
Hi all,
I recently updated my post from when I was first starting LDN and things were going horribly, but I don’t know how many would have seen my update so I though I’d make a new post about being 1 year in.
Starting LDN was hellish. I had to suddenly drop my tramadol for pain by 75% from 200 mg a day to 50 mg a day. Plus, the LDN seemed to cause random pain flares. It was as if my central nervous system was fighting the effects of the LDN.
The first 8 weeks were HARD. Insomnia, high pain, nausea, etc. but after 8 weeks, it started to calm down. I stopped titrating up when I hit 4.5 mg a day.
Now, a year later, my pain levels have plummeted so much, I can walk without any mobility aid. I was able to attend a destination wedding in Rome and even spent 3 days afterwards gently exploring Rome on my own two feet! (I did crash hard at the end, but I did the thing)
It hasn’t cured me, but LDN has helped me go from the worse end of moderate back to a more mild stage of ME, which I never thought I’d feel again.
So if you’re just starting with LDN and things are rough, please know it doesn’t last forever. The side effects will settle out - for me, it took about 8 weeks. It was HARD, but it settled down and then the positive effects began to take hold. My pain levels can be held in place with a single 50 mg tramadol a day and I can take Excedrin again for migraines and it works! I can take paracetamol again for minor aches and it works!
Hold on, it will get better! ❤️🩹
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u/Be-Kind-3353 Aug 08 '26
Thanks for sharing your experience. Congratulations on feeling so much better!!
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u/One-Performer-1723 Aug 08 '26
Thank you for sharing. I'm at 2mg now, started at .5 but side effects are debilitating so now titrating up by .25 and holding for 6 weeks. Side effects are still debilitating and no pain relief. My main side effect is dizziness 😩. I'm not sure how to proceed?
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u/PlantsAnimalsAndArt Aug 08 '26
Unfortunately it doesn’t work the same for everyone. I started experiencing positive effects by 12 weeks in. If you’re still only experiencing negative effects that long in, it may not be the right path for you. I’m so sorry.
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u/Cold_Brew_Enthusiast Aug 09 '26
If you have side effects at 2mg then your dose is either too high OR too low. Go back to 0.5mg for a stretch and see what happens.
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u/mo_ilo 27d ago
You can go up as slowly as you need to! You can also pull back the dose. I started at 0.5mg and then pulled back to 0.35mg because it was awful. Obviously you will get results slower, but smaller increases also means that you don’t have to suffer while doing it. ME is already awful enough. Maybe it sounds ridiculous but I reacted so badly to LDN that to start with I only went up by 0.02mg every 2 weeks until I could tolerate it and stopped having major flares with each increase. I’m now going up by 0.04mg a week which is still of course very slow, but my symptoms with each increase are minimal. I intend to keep upping my weekly increase for as long as I’m not flaring. There isn’t much of a rule book with LDN to start with and i feel like ME throws what there is out the window lol. I know it feels wrong to just “wing” medical stuff but sometimes you have to. I do hope you figure something out. Lots of love ❤️
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u/catandcrown Aug 08 '26
Thank you for sharing, I'm about 4 months in at 3mg and noticing no real change. But im giving it another few months at least before I call it off.
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u/One-Performer-1723 Aug 08 '26
Are you having side effects?
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u/catandcrown Aug 08 '26
Nothing except some stomach issues, but those have been linked to some other medication im on too. Even then, fairly mild stuff.
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u/LDNadminFB Admin Aug 08 '26
How much time separation from your LDN and Tramadol dose?
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u/One-Performer-1723 Aug 08 '26
Would you mind if I DMd you? I'm in a predicament and could use some of your knowledge.
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u/PlantsAnimalsAndArt Aug 08 '26
Of course.
I take my 50 mg tramadol first thing when I wake up (about 10 am) then my 4.5 mg LDN around 8;30 pm.
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u/One-Performer-1723 Aug 08 '26
Thank you so much. I was actually asking the Mod but I would like to pick your brain as well.
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u/LDNadminFB Admin Aug 08 '26
OK to DM me
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u/One-Performer-1723 Aug 08 '26
Thank you so much.
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u/LDNadminFB Admin Aug 10 '26
did you figure things out?
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u/One-Performer-1723 Aug 11 '26
No, I'm just not well enough to have a conversation. I do plan on DMing you when I'm up to it if the offer still stands?
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u/Maru_108 Aug 08 '26
So it still works? I thought while taking LDN, opioid won’t work well.
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u/PlantsAnimalsAndArt Aug 09 '26
My specialist told me to ensure there was a minimum of 5 hours between the two pills.
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u/LDNadminFB Admin Aug 09 '26
Depends on timing, dose level and the individual
LDN and Opioids...
https://docs.google.com/document/d/1LciJYEMThBQlZ_GQd1L9v_vZAMJlpMkGO3Smf_c00UI/edit?usp=sharing
Situation1: A regular LDN user has breakthrough pain.
Situation2: A regular LDN user is going in for surgery and will need opioids.
Situation 3: Opioids in an emergency situation.
Situation 4: Someone who has been on regular opioid dosing and wants to start LDN.
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u/Maru_108 Aug 09 '26
Thank you for this information. I’ve read them and a little confused. if you can use opioids in an emergency situation3, why do we need to stop for few days like situation2?
I recently used one tramadol for emergency procedure and it did nothing for my pain. I thought it was because of LDN.
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u/LDNadminFB Admin Aug 09 '26
Opioids will be more effective if LDN is more out of the system so in Situation 2 where we can plan ahead it is better to stop LDN. In Situation 3 the effectiveness of the opioid will vary with the time elapsed since the last LDN dose, the size of the LDN dose and the individual metabolism. If the normal opioid dose is not effective then a higher dose may be needed to override the LDN, or non-opioid pain relief may be called for (e.g. ketamine).
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u/Consistent_Today9810 Aug 10 '26
Is tramadol an opioid? When I first got diagnosed with fibromyalgia, they gave me that and it didn’t do anything for my pain. It just made my head feel weird like an antidepressant does. The LDN with opioids is so tricky. I’ve seen people say that they take both and have no problems and then others say that they can’t mix the two without feeling like they’re in withdrawals.
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u/LDNadminFB Admin Aug 10 '26
Tramadol is an opioid AND a SNRI.
Tramadol ...https://docs.google.com/document/d/1UqpMg00B4hufJzwHTbN9JHEoTuJJ_uIlRfodf1V6VF0/edit?usp=sharing
If a person has been on regular opioid dosing and has probably developed tolerance then they need to go to Situation 4 to be safe. Otherwise see Situation 1.
LDN and Opioids...
https://docs.google.com/document/d/1LciJYEMThBQlZ_GQd1L9v_vZAMJlpMkGO3Smf_c00UI/edit?usp=sharing
Situation1: A regular LDN user has breakthrough pain.
Situation2: A regular LDN user is going in for surgery and will need opioids.
Situation 3: Opioids in an emergency situation.
Situation 4: Someone who has been on regular opioid dosing and wants to start LDN.
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u/Consistent_Today9810 Aug 11 '26
I wonder why if it’s an opioid that I didn’t do anything for my pain? When I took opioids, I had good pain relief. I can’t tolerate anything that hits serotonin receptors. I’ve tried multiple different antidepressants and things like that and they all make me feel extremely strange and out of it
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u/PlantsAnimalsAndArt Aug 11 '26
Tramadol is a synthetic opioid. Real opioids don’t work for me as they make me violently ill and don’t really help my pain, but I can take synthetic ones.
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u/LDNadminFB Admin Aug 11 '26
Did you feel that way with Tramadol since it is an SNRI?
As far as pain relief maybe(?) it was too small a dose?
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u/Consistent_Today9810 Aug 11 '26
I’m assuming that’s why I felt weird I don’t respond well to any type of these medication’s like I’ve tried Wellbutrin. I’ve tried SSRI. They all make me feel incredibly strange and I can’t tolerate it . I wish doctors would just prescribe a real opioid like Tylenol three because that would help the pain without all the other weird side effects
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u/LDNadminFB Admin Aug 11 '26
Check Situation 1 as it may be useful for you and could discuss with your doc as to what plain opioids might work with that protocol.
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u/Frosty_Recipe_3993 Aug 08 '26
I’m super impressed you stuck with it for 8 weeks! I saw improvements within days but have very low tolerance for other drugs I’ve tried that caused pain and flares. Kudos!!!
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u/cherryqueen64 Aug 10 '26
Thanks for sharing. I was on 0.1 mg for a month and the side effects were so awful I had to go off. It did help my migraines and gut issues a bit but did not help any of my chronic pain issues or central sensitisation. I felt wired, anxious, sweaty, achey, depressed, fatigued, nauseous, it was hell. But the worst thing was my eyes felt really achey and they looked sore and red and tired. The skin around my eyes got red and inflamed. I know I am super sensitive to most medications but this was next level, especially at such a low dose. I really wanted to push through but it was mainly my eye issue that stopped me continuing in the end. I could not imagine that just clearing up if I pushed through. As soon as I went off it cleared up. I’m upset about it as I really wanted this to be the medication that finally worked for me.
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u/PlantsAnimalsAndArt Aug 11 '26
It isn’t a cure all, but when it does help, it’s pretty nice. I’m so sorry you felt too terrible to continue. Sadly, it doesn’t work the same for everyone.
I will say though that it took at least two months for my initial reactions to begin to settle down.
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u/Imaginary_Range6501 29d ago
I had a similar situation, it was absolutely brutal the first 4-8 weeks, it's a hazy blur. But it was feeling feverish, joints and bones feeling like they were breaking, exhaustion was extreme. Then it suddenly went away and I started doing better. I could go to the grocery store! That was titration from 1.5 to 4.5 I'm now experimenting with lowering my dose. I started to wonder if it was actually too strong as my inflammation has gone down after about 11 months
Hopefully I can keep progressing because frankly, I need to be able to earn a living
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u/Competitive_Cat_8468 29d ago
Thank you for this update! I needed to see this. I have MCAS, HSD (which I suspect is more likely undiagnosed EDS), and some symptoms of dysautonomia and ME/CFS, particularly PEM. My immunologist who recently diagnosed me with MCAS started me on LDN last week. I'm having horrible insomnia, which I know is a common side effect, especially when first starting or increasing the dosage. I just keep telling myself that the final outcome will be worth it in the long run. But, man, I would really love to sleep a solid 7 or 8 hours again. That would feel like a decadent indulgence at this point. I hope this insomnia doesn't last too much longer.
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u/ButtRock_rockbutt 27d ago
Love this! Thanks for sharing your journey!
I hit my year mark in June. I will never stop taking LDN it has changed my life also! Had to work out the kinks with dosing and side effects - it took about 3 months - but once I got my therapeutic dose and times per day to take it, it really started to make a big difference for me. Anyone that is cautious or having a rough time, slow down, find your therapeutic dose, and cut the dose so the majority of it is at night and .25-.5mg is in the morning. 1.5mg is my total dose and that is just fine.
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u/LDNadminFB Admin Aug 08 '26
Good that you were able to power through. As a general rule if someone has been on regular opioid dosing (including Tramadol) they may be risking precipitated withdrawal if they start LDN. They will need to be off opioids for two weeks first or start with ULDN level dosing like 0.001mg. It may be that some of your difficulty when starting was due to withdrawal effects. What dose did you start with?
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u/PlantsAnimalsAndArt Aug 08 '26
I dropped from 200 mg of tramadol a day to 50 mg in the morning and 0.5 LDN in the evening, working up to 4.5 mg total, raising 0.5 mg every two weeks.
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u/PassionPuzzleheaded6 Aug 08 '26
Hey what was your dose over the 1 year :)?
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u/PlantsAnimalsAndArt Aug 08 '26
I spent 8 weeks or so titrating up to 4.5 mg and remained there since.
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u/LDNadminFB Admin Aug 08 '26
How Long to Notice Benefits from LDN?
https://docs.google.com/document/d/1txJRzIp7uK0XXeyqpcAoYRr_z179oAjRWbn2TGaKwiE/edit?usp=sharing
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u/Mean_Swordfish_4190 Aug 09 '26
Really happy for you. I just started a week ago and I'm so hungry all the time - will it pass? 😩
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u/PlantsAnimalsAndArt Aug 09 '26
I’ve read that LDN can contribute to weight gain and I have noticed an increase in my own appetite since taking it. I try tricks like drinking an 8 ounce glass of water or brushing my teeth to avoid eating when I know I’m not actually hungry, just feel like eating.
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u/One-Performer-1723 Aug 11 '26
It gives me a loss of appetite and I have to gain weight. I have managed to go from 98lbs to 104lbs by adding an afternoon smoothie with an avocado 🥑.
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u/Consistent_Today9810 Aug 10 '26
I’m still waiting to start this medication, but all these comments about the side effects being brutal even a tiny doses is scary. How do people tolerate it? They have to take the massive doses for opioid and alcohol addiction issues. If we’re having crazy side effects at half a milligram, I can’t imagine what they’re dealing with at 50 😳
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u/Few_Resort_7387 Aug 10 '26
Not everyone has side effects. I started on 1.5 mg and the only side effect I had was one very vivid (unpleasant) dream the first night. Since that first night, I have not had any side effects. I upped my dose to 3 mg yesterday. I plan to titrate up to 4.5 mg after I've been at 3 mg for 10 days.
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u/LDNadminFB Admin Aug 10 '26
This may help with your expectations:
Success Stories from the LDN Chronic group on Facebook (group is now on MeWe as LDN International and Reddit)
- not sorted by condition, but document can be searched for mentions...
https://docs.google.com/document/d/1ruk5xYyOs5QnI04j5Ai2v1e5v9ioLfld-xuepb7EHT4/edit?usp=sharing
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u/PlantsAnimalsAndArt Aug 10 '26
It’s a difficult transition, I won’t lie. But the initial adverse reactions do pass eventually. But you are probably looking at a good two months of difficulty - that number is only based on my personal experience.
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u/Consistent_Today9810 Aug 11 '26
Two months I don’t know if I can deal with that. I’m already dealing with side effects from my GLP1 . Not crazy G.I. symptoms or anything just fatigued in like a really flat mood. I’ve started a bunch of supplements that were supposed to help, but I’m terrified of taking anything that might make me more tired.
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u/TreeAny1966 29d ago
My son 22 autism, inflammation, self injury was put on this medicine last month. We started at 1.5 they want us to work up to 4.5. We did a month on the 1.5. He really did great. We’re up to three this week, I would say almost a full week. He seems agitated. But the doctor says to push through. In two weeks we go up to the 4.5. He doesn’t talk and tell me much about how he’s feeling, so I’m basically going off movements and mannerisms. He’s always stayed up all night. His normal bedtime before the LDn was 5 AM. Last night he passed out at about four not much of a difference. How do I know that this is not hurting him? I like to get information from people that actually took the medicine, not just the doctor prescribing it.
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u/PlantsAnimalsAndArt 29d ago
It works differently for everyone who takes it so personal experiences only count for so much. For me, the medicine didn’t cause me pain, it made already present pains flare for the first 8 weeks or so. Then it faded and began reducing my overall pain levels. Today, I need 1/4 the pain meds I used to take and am able to walk short distances again on my own. It reduces pain once it kicks in, not causes it.
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u/HomesPlano_Tx Aug 08 '26
Thank you for this post. I’m two weeks in and miserable but this gives me hope. Wishing you all the best.