• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Aceytl L-carnitine carnitine + melatonin - long term use

Messages
20
I use both for insomnia, the L-aceytl carnitine helps the wired but tired sensations that keep me restless and awake.

Any of you using these long term?

Do they remain effective or do you find you need dose increases?

  • 2 x 500mg Acetyl L-carnitine but used to be one
  • 3mg melatonin

Reluctant to continually increase the dose but back to not sleeping.

I don't feel wired. Has been going on like this for at least 6 months.

I'm wondering about discontinuing the Acetyl L-carnitine for 1-2 weeks, then starting on 250mg. Usually makes me incredibly sleepy for the first 3 days
 

R.Little

Writer/Musician
Messages
112
Location
DC, USA
@SevereME

So, it's worth noting that melatonin is not a typical sleep aid, it's more of a sleep phase modulator. It helps control when your bedtime is. Your body naturally releases melatonin to signal that it's time to get ready for bed. So, if you have trouble maintaining your bed time, or if you want to gradually adjust the timing of it (by 15-20 minutes at a time), it's useful for that. Generally, you'd want to take about 0.5mg or 1mg, four or so hours before your desired bedtime.

Oddly enough, I actually take 3mg to maintain my sleep schedule, but that's a very abnormally high dose. It's not normally recommended. In fact, 0.3mg is adequate for many people trying to shift their sleep schedule. I only take so much because of how easily my sleep schedule gets thrown off. After having my sleep schedule slip through a full 24 hour cycle, on two separate occasions, my sleep doctor finally said, let's increase your dose to 3mg.

Anyhow, taking melatonin as a sleep aid can work for some people, just be careful about your circadian rhythm. Here's some info:
https://www.optisom.com/en/learn-about-sleep/melatonin


Have you had your Carnitine levels checked? It's a simple blood test. I take 500mg of Acetyl L Carnitine, twice a day. That's the maximum recommended dose. I had my Carnitine levels checked and I had a deficiency, so that's why I take it. It helps with energy a bit for me. I've been taking that dose for several years now.

I've never heard of Carnitine making people sleepy. They actually put Carnitine in energy drinks. It's one of the few actually useful ingredients because it is actually used in energy production. But as far as I know, it's totally safe, so if decreasing your dose and then increasing it is helpful to you, I can't imagine why there would be any problem with that.
 
Last edited:

R.Little

Writer/Musician
Messages
112
Location
DC, USA
I should add here that, if you have a system that works for you, that's great! Not trying to disrupt anyone else's treatment if it's working for them. I'm not a doctor, and everyone's body is different. Melatonin can be a useful sleep aid for *some* people, when timed right, and when taken in reasonable amounts (ie single digits, not 10mg+!). It's just most effective as a tool for managing your sleep schedule.

When my CFS first hit, I first went to see a sleep doctor. They discovered I had multiple sleep disorders, which I had probably had my entire life. But since I was seeing sleep doctors, all my CFS symptoms got blamed on sleep problems. I spent about 5 years with a lot of different sleep doctors, reading all kinds of white papers on sleep medicine, even reading sleep medicine textbooks, before I finally figured out I had CFS.

(You would think that, over the course of that five years, one of these sleep doctors would at least *mention* the possibility of CFS, right? Certain CFS symptoms overlap so closely with disorders like narcolepsy and idiopathic hypersomnia, you'd think they'd be familiar with it. But no, like many of us, I had to figure it out myself.)

In any case, I do know at least a few things about sleep. Melatonin is not regulated by the FDA, and drug stores sell it in huge doses, so there's this widespread public misunderstanding about how the supplement works. People (understandably!) think it's a safe, natural sleep aid, but it's just a bit more complicated than that. Studies on the use of melatonin as a treatment for insomnia have been mixed. It does have a mild hypnotic effect on some people, but you have to be really careful about the timing, or you can mess with your circadian rhythm.

There are also other potential side effects, like night terrors, but for most people, it should be relatively safe and not habit forming. There are no known long-term negative effects. If you're going to use it as a treatment for insomnia, 3mg is probably a good dose, and it's probably best not to go much over 5mg. Here's a bit more info:

https://www.webmd.com/sleep-disorders/news/20181112/as-melatonin-use-rises-so-do-safety-concerns

It's also important to know that the actual contents of melatonin supplements vary widely by brand. Many doses are totally different than what's on the label, and some contain totally unrelated ingredients, like serotonin. That can be true of any supplement, but it's especially true of melatonin. You likely know all of this already. There are sites that test the purity of supplement brands, and I think brands like Jarrows or Nature's Bounty tend to be trustworthy.

Anyhow, I use melatonin to help maintain my sleep cycle, but I use 1mg of Ativan to help me actually fall asleep. And I use Baclofen and LDN to help maintain the quality of my sleep. I take Gabapentin at bedtime too, but that's mainly just to relieve my muscle soreness.
 
Messages
20
Thank you both.

I get how melatonin works but interesting to hear that taking it so much earlier would probably help. Mine is 3mg and not the slow release kind. Once I'm sleep I do manage to stay that way. I have to get it imported so smaller doses aren't available. Doc suggested doubling the dose which confused me.

L-carnitine levels aren't going to get checked given that I'm permanently housebound and it's the middle of the second wave of the Coronavirus.

L-carnitine was one of the suggestions on here that worked for me for the wired but tired symptom.
 

R.Little

Writer/Musician
Messages
112
Location
DC, USA
Yes, @andyguitar is correct, there are additional properties of melatonin that may or may not be useful. It has been shown to reduce migraines and cluster headaches for example, but there's no consensus on the appropriate dosage or timing. It's also an antioxidant that has shown promise in helping with cardiovascular diseases. Lots of potential, but not a lot of solid guidelines for those uses.

In terms of timing for sleep, I think it varies somewhat from person to person. My doctor suggested 4 to 5 hours before bedtime for me, but I've seen other sources recommend 3 hours before bed. It's probably worth experimenting to find what works best for you.

I am mostly bedbound myself. My boyfriend takes me to doctors' appointments when necessary. But we also have people who will come to the house. I had a mobile dentist visit the other day, and he wore a mask the whole time. My primary care doctor comes to the house if we need him, and we've also had good luck with mobile phlebotomists.

If Carnitine is working for you, there's no urgent need to test it or anything. If it helps, it helps! Just might be worth asking them to test your levels whenever you get standard blood work done in the future.

It's handy info for me just because, when I look at my supplements to see if I can eliminate things, I don't have to think hard about whether Carnitine is really helpful or not, I know I'm deficient, so I keep taking it. One less unknown for me.
 
Messages
20
That's news to me! It hasn't helped my migraines, but large doses of magnesium do that - which was actually advice from my GP.

Melatonin is not legal over the counter here and docs rarely give it to anyone under 55 except on specialist advice, but it's legal to import for personal use and shockingly cheap to do so.
 

Hipsman

Senior Member
Messages
542
Location
Ukraine
I'm on both Aceytl L-carnitine and melatonin for about 2 weeks now, both help. I plan on using them indefinitely until they stop working.

However, I am curious is there any evidence for possible interactions between L-carnitine and immunomodulatory drugs that result in bad side effects? I have planned some immunomodulators to try out, so if anyone looked into this already, please reply.

10.15 Edit: Haven't found any info on interactions with immune modulators, should be pretty safe.
 
Last edited:

xploit316

Senior Member
Messages
143
I'm on both Aceytl L-carnitine and melatonin for about 2 weeks now, both help. I plan on using them indefinitely until they stop working.

However, I am curious is there any evidence for possible interactions between L-carnitine and immunomodulatory drugs that result in bad side effects? I have planned some immunomodulators to try out, so if anyone looked into this already, please reply.

10.15 Edit: Haven't found any info on interactions with immune modulators, should be pretty safe.

Does Carnitine help with protein digestion?