LDN Naltrexone side effects

Gondwanaland

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IME Naltrexone can cause serotonin syndrome. I wrote down a list of side effects I experienced and then started looking for it. Then I found this:

https://www.drugs.com/sfx/naltrexone-side-effects.html

https://mentalhealthdaily.com/2016/04/25/naltrexone-side-effects-adverse-reactions-list/

I had most of the side effects reported for it at doses of 50 milligrams (I am taking 50 MICROgrams).

So having B2 and magnesium at hand will be useful (MAO-A co-factors). I had a especially strong reaction (very painful muscle stiffness at shoulders+neck) after eating food seasoned with Turmeric (MAO inhibitor). I am +/+ MAO-A.

I will have to be extra-careful with MAOIs in food.

https://www.botanical-online.com/english/vegetalmaois.htm

https://www.everydayhealth.com/maoi/guide/

I will only increase dosage once side effects clear completely.

Avoiding foods high in glycemic load will also be crucial.
 
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JES

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Is Naltrexone for CFS?

Up here its used for heroin abuse and addiction.
No, but low-dose naltrexone is one of the most common treatments for ME/CFS. It's cheap and quite safe, does seem to work for some other autoimmune diseases, though it hasn't been studied much for ME/CFS.

I personally never noticed major serotonin syndrome effects from LDN although I get it from small dosages of P5P (activated B6). The only serotonin-like effect I got from LDN was that it caused me daytime sleepiness for a week when increasing the dosage.
 

Runner5

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Thanks for the info - I was just wondering if there was some kind of addiction blocking that helped CFS and curious about that.

The only drug my doc has offered me for CFS / Fibro is Cymbalta. In the past though I was on Ritalin. But I'm not really up to speed on any of the prescription meds for CFS.
 

Lolinda

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Here is a paper that reports some benefit in POTS, fatigue, MCAS and GI trouble:
http://casereports.bmj.com/content/2018/bcr-2017-221405.full
The patient was diagnosed with CFS before diagnosed with POTS, so she will have had fatigue, too.

What caught my attention, however, was the line:
"LDN made me feel noticeably happier, more energetic, in less pain and with better digestion (and these things got better with each dose increase)."

Question:
Has anybody ever seen a testimonial or any research reporting improvement in people who are already full happy and have higher than average energy?
I ask this question because this is how I feel (I worked hard for it, starting at full-blown ME some years ago...) and how people describe me (people often cannot imagine I am any sick at all). I do see potential benefit for my POTS and my digestion, which are so bad that I am mostly bedbound. But before adding LDN to my already loooong list of stuff that I want to try, and before risking even moderate side effects, I am curious if anyone has ever seen any benefit if person is already happy + energetic... For these attributes look to me like good endorphins... so I speculate they could serve as criteria to differentiate between people who will or will not profit.
 
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Gondwanaland

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I can only answer a couple of your questions:
and my digestion, which are so bad that I am mostly bedbound
It definetely improves digestion (and increases my appetite at every dose increase which is good because I want to gain weight) - after all it is Naltrexone Hydrochloride. I would be curious if it would further improve digestion in those who already take a ton of Betaine Hydrochloride.
before risking even moderate side effects,
Side effects are transient, thank goodness!

I don't think you would have anything to loose to try it for about a month starting at 50mcg and increasing 50mcg every 5 - 7 days. If you feel better you win, if you don't just quit it.

"LDN made me feel noticeably happier, more energetic, in less pain and with better digestion (and these things got better with each dose increase)."
These could be my own words right now.
 

Lolinda

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BTW LDN resolves POTS for @alicec
Hi @alicec
Would you mind telling more about your success? I have POTS myself. I would be curious to learn
  • what type of POTS you had (e.g. hypadrenergic, neuropathic, etc)
  • what type of comorbidities you suffered (mast cell? EDS? peripheral neurop.? gastrointestinal? etc)
  • or just any information on the POTS you had
  • and what the process of your improvement was (how fast you noticed a first improvement, etc) and how much LDN you took
  • Where there other things besides LDN that contributed to overcoming POTS?
Thanks a lot!! :tulip::tulip::tulip:
(I ask these many questions because POTS is a wild collection of different pathologies having in common as little as a heartrate increase upon standing up.... before I invest months and postpone other treatments, I would so much like to learn about your experiences!)
 
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alicec

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Hi @alicec
Would you mind telling more about your success? I have POTS myself. I would be curious to learn
  • what type of POTS you had (e.g. hypadrenergic, neuropathic, etc)
  • what type of comorbidities you suffered (mast cell? EDS? peripheral neurop.? gastrointestinal? etc)
  • or just any information on the POTS you had
  • and what the process of your improvement was (how fast you noticed a first improvement, etc) and how much LDN you took
  • Where there other things besides LDN that contributed to overcoming POTS?
Thanks a lot!! :tulip::tulip::tulip:
(I ask these many questions because POTS is a wild collection of different pathologies having in common as little as a heartrate increase upon standing up.... before I invest months and postpone other treatments, I would so much like to learn about your experiences!)
First I don't have POTS. I do have NMH plus a vaguer orthostatic intolerance that doesn't necessarily involve BP or HR changes, just the overwhelming feeling that I have to lie down and doing so makes me feel a lot better.

Both of these conditions have been resolved by LDN.

When I first tried LDN several years ago I started with the recommended low dose of 0.5 mg. This had an almost instant calming effect and seemed to stabilise my BP (am greatly inclined to hypertensive spikes). However it was clearly too large a dose for me.

I found I needed to start with 0.05 mg and build up very slowly. With this slow approach I didn't notice any obvious effects of the LDN but proceeded on faith that the initial experience meant that LDN would be beneficial for me.

I eventually worked up to 3 mg daily (this took many months) and only gradually began to realise that the NMH and OI weren't nearly as troublesome - still there but much milder. I wasn't sure if this was really due to LDN, but on two occasions in the last 18 months or so I have stopped taking LDN. I definitely found that the NMH and OI got much, much worse.

More recently I have increased dose to 5 mg. This has virtually eliminated any sign of NMH and OI. Very occasionally I'll get a bout of lightheadedness and fatigue and feel the need to lie down, but this passes quickly and is very mild in comparison with past experiences. As far as I can tell, it is LDN alone that has done this.

Unfortunately I suspect that the higher dose is causing sympathetic activation and mild hypertension. I always experience transient episodes of hypertension but now it seems to be permanent. I'm still considering what to do but I may try taking the dose back to see if it makes any difference.

As for comorbidities, I have never experienced MCAS and don't have EDS. In the first iteration of the disease (I have had a period of near remission but relapsed in 2012) I had a lot of IBS-like symptoms, food sensitivities and MCS. I have managed to resolve the gut symptoms over time and no longer have any food sensitivities or MCS symptoms.

I'm happy to answer any other questions you might have.
 

Lolinda

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I'm happy to answer any other questions you might have
Thank you so much, @alicec for all the details!

Indeed, I would like to ask one thing:
I heard it again and again that the most typical change people get from LDN is better mood, more energy or even better libido. I have all these, more than average. In fact, when people meet me, they cannot imagine that I am so sick that I lay most of the day in bed. When meeting doctors, I force myself to not crack jokes and to appear patient-like otherwise they dont help. So, do you know anyone who has best mood, superb energy or libido who has profitted from LDN? I ask because to me these attributes sound like being already full of endorphines (I may be wrong! I am new to the LDN topic!). I also ask because I understand from your lines that LDN is a marathon. So before investing months, and postponing other experiments, I better estimate chances....

(PS: I just have suffered a major setback from a failed experiment. Hugging my pillow. No sleep + no appetite, etc. I may disappear for a day, a week or 3. I will come back to this thread because I am very interested.)

======================================================

Here a ressource for anyone taking LDN:
PODCAST: HOW TO INCREASE EFFECTIVENESS OF LDN
Just a few days ago, I listened to this show by an LDN expert. While there is not so much research on LDN, she summarizes experiences from doctors who prescribe it. Essentially, it is a summary of factors that make LDN work more effectively. It starts with simple things: being vitamin D replete, not take dairy, etc. The bulk of the show is dietary changes to increase effectiveness of LDN.
Do not let yourself fool by those "girlie-smiles" of the host and the expert: I found it full with interesting details.
It is long, so I converted it to a 100Mb mp3 using this converter and listened to it from my phone while doing sports :)
https://mp3fy.com

Here my personal notes. This is NOT a contents list, but just some random bits that evoked my interest, let them be funnny or useful or anything. Most do not even apply to me as I eat zero sugar or gluten...

2:20 ldn works better when you avoid gluten in your diet
when you avoid dairy
when you avoid your personal allergens
when you are vitamin D replete

6:50 ingwer is anti-inflammatory

9:10 avocado is prebiotic

16:00 funny research on willpower to enact dietary changes:
the research says that whenever possible don't rely on it

17:00 putting a candy jar 6 feet away from someone instead of 3 reduces the amount of candy they eat by 30%

18:25 body weight is largely dependent on the weight of people you spend time with

24:08 people who drink more coffee eat less sugar

24:24 taste buds only live for four weeks and then they die. the new taste buds are super sensitive. an ordinary cookie would be painfully sweet for them. but with exposure to sweet things tey get desensitised. so you dont get out so much taste of that tste bud for the rest of their life. so if you manage for a couple of weeks to resist overflavoured food, then you will develop more and more of these fresh virgin taste buds that get a lot more of sensation of everything

36:30 having a little gluten here and there is pretty much as bad as having a bunch all the time
???true???

39:26 The average American eats a 125g saturated fat per day
??? is this really true???

53:23 after eating gluten one time, the antibodies float around for months
 
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alicec

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do you know anyone who has best mood, superb energy or libido who has profitted from LDN?
No sorry.

For me, I have not noticed much effect of LDN on mood, sleep or energy, perhaps a mildly beneficial effect on pain (but pain is not a bit issue with me). It's all about OI for me.

Again for me, LDN was a bit of a marathon but I have read of many people who were able to start with around 0.5 mg and build up to 3-5 mg over a month or so.

If you start with 50 mg tablets and dissolve them yourself (in 50 ml water), it is not a very expensive option so could be worth your while to give it a go sometime.
 

Gondwanaland

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The benefit I noticed from LDN is less Quinolinic Acid and more NAD production from TRP (not tested).

https://www.future-science.com/doi/full/10.4155/bio-2016-0111
The kynurenine (KYN) pathway is implicated in diseases such as cancer, psychiatric, neurodegenerative and autoimmune disorders.
https://link.springer.com/article/10.1007/s00125-017-4329-9
Degradation of the essential amino acid tryptophan is closely related to immune activation.
@dannybex
@Lolinda
@Asklipia

No more oxalate sensitivity because Quinolinic Acid is also a crystal in the urine (but I am not eating nuts and seeds anymore either because Omega 6 aggravates endogenous oxalate formation). Glycoxil also had the effect of streamlining TRP metabolism, but it was too potent (I got excess NAD and crashed).
 

dannybex

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Did you test for quinolinic? Also, quinolinic can be reduced by taking niacin or some form of niacin so that tryptophan isn't broken down to provide niacin.
 

Gondwanaland

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Did you test for quinolinic? Also, quinolinic can be reduced by taking niacin or some form of niacin so that tryptophan isn't broken down to provide niacin.
Never tested for it, but the awful smell of my urine is gone (kynurenine? quinolinic?).

Never tolerated Niacin supplementation, I suppose it raises my Hcy.
 
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I take LDN and the only side effects I had and continue to have are vivid dreams/increased time in REM sleep, and slight blunting of anxiety (and as a result more fatigue), BUT I can’t be sure the latter side effect is 100% from the LDN. Definitely the vivid dreams, though. I take 4.5 mg, which is working amazingly for neuropathy. 3 mg wasn’t strong enough for me. It does nothing for my POTS, personally.
 

Violeta

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Did you test for quinolinic? Also, quinolinic can be reduced by taking niacin or some form of niacin so that tryptophan isn't broken down to provide niacin.
If you take niacin and it makes you sleepy, is it because they tryptophan isn't being broken down?
 
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I continue to take my 3.5 mg dose....but certainly have a long list of symptoms which don't seem to be touched by- that. Or maybe it would all just be even more unbearable if I was not on it. Including some new ish or worsening...symptoms. More intense fibro on my spine at nite; tachycardia episodes; cellophane in my brain and ears, the throat...

sigh.
 

dannybex

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If you take niacin and it makes you sleepy, is it because they tryptophan isn't being broken down?
I believe it's because it's lowering the quinolinic, which would make you the opposite of 'sleepy'. So indirectly, yes. It's like they talk about when it comes to methylation where one takes niacin to soak up methyl groups if one is overmethylated.
 

Gondwanaland

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Does LDN interact with MAO enzymes? I can't find anything definitive, but I'm heavily brain fogged in today.
I strongly suspect it does

During my 1st LDN week I was having shoulder tension.

At the end of my 1st LDN week (when I was still taking only 50mcg) I ate something lightly seasoned with turmeric (MAOI) and got a stiff neck. Then I took a muscle relaxant an it went away and I could go on with the dose increases.

Every now and then I get shoulder tension, then I lower my dose by 2 drops. Max dosage I took was 16 drops, currently I am taking 14 drops (50mcg/drop).