u/yshcrp

Experiences with 1,4 BD strictly for sleep?

Guys, I’m struggling a lot with my severe insomnia and fasciculation syndrome (which is linked to sleep deprivation and gets worse when I don’t sleep well).

Right now I’m relying on antipsychotics but they destroy me psychologically after a few days of usage and not to mention the long list of side effects they have, which include prolonged QT syndrome, which can cause deadly arrhythmias. And for a year now I started to have heart palpitations so I’m super cautious now with these drugs.

So because it’s impossible for me to get pharma GHB in Xywav, I’m thinking about trying BD again. I’m suffering with this syndrome for 8 years now and I know that to get better I need to sleep at an appropriate time and for enough hours, which unfortunately for me is 9 hours.

I used NaGHB but was only getting 2-3 hours max per 4.5g dose and was having to take 4 doses to get the 9 hours and feel better but it’s way too much sodium and I had high blood pressure, so I had to stop using it. But it was working tremendously for the insomnia and the sleep. It was something that I could rely on knowing that it would work.

Talked with nearly all the vendors on DW and no one has K-GHB nor were willing to try and make it. So what’s left is trying BD again, even if it’s just occasionally.

Does anyone here have experience with BD strictly for sleep or at very moderate doses? Cause I know some people claim no side effects with it and also say side effects might be from impurities and not from BD it self.

There’s also 1,3 BD which is now sold in beverages (Ketohol) and it’s literally the same as 1,4 but it gets converted into BHB in the liver instead of GHB. If you research you’ll see that 1,4 BD is not for human consumption because it turns into GHB. But we know GHB is non-toxic at therapeutic doses.

I’m not here promoting 1,4 BD, I’m just asking questions cause I’m really struggling to get my life back. Benign fasciculation syndrome is no joke, the neuropathic pain and twitching are horrible, not to mention I also developed weakness.

Thanks.

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u/yshcrp — 2 days ago
▲ 0 r/BFS

Is there anyway we can fight to get access to Xywav?

My BFS 100% started after sleep deprivation. Now I know that to get better I need to sleep properly which means at the right time and for enough hours (I know this from my own experience dealing with this for 8 years).

Xywav is low-sodium GHB. GHB is a tremendously effective sleep aid and the best medication for severe sleep disorders. I have severe insomnia, and that’s why I can’t reverse the syndrome like I did at one point and have to rely on bad medications like antipsychotics.

I actually got GHB (sodium-GHB) and it was working tremendously. The problem is that is too much sodium and the half-life is short, so I was needing 4 doses of it to get enough sleep (I need at least 9 hours).

So Xywav would be perfect because it’s low in sodium and I’d be able to take those 4 doses with no problems (would just have to manage possible glutamate rebound [but this usually goes away as the body adjusts to it, cause GHB is naturally occurring in our bodies]).

So we should fight for this. Not to mention that GHB relieves the neuropathic pain and twitching very well (just doesn’t last as long). The thing is that because it relieves the pain and twitching so well, it could be very helpful for those having a hard time sleeping because of the symptoms.

In 2018 I was able to reverse this disease by sleeping early for an entire month. Sadly I didn’t know what I had was BFS, thought it was the change in diet and started sleeping late again and everything came back and since then I haven’t been able to recreate what I did in 2018.

In 2022-2023 I started using quetiapine alongside with heavy BJJ training and was able to get a lot better. Not as good as in 2018 cause I was sleeping around 10pm and sometimes I’d sleep around 9pm and wake up in the middle of the night with no sleep at all and that would set me back cause I’d take another dose of quetiapine but many times I was awake for 2 or 3 hours before I’d sleep again.

And the problem with quetiapine is that it makes me so anxious, depressed and anhedonic after 5 or 6 days using it. So I have to take breaks. I’m also using clozapine and that’s the strongest antipsychotic there is so this one is even worse (after 3 days I’m already really bad psychologically).

Not to mention I started having heart palpitations and this meds can induce prolonged QT syndrome, which can cause deadly arrhythmias. So I’m very cautious these days with these meds.

So Xywav would be very beneficial for us. And as I said, I used the GHB and it was working great and I was getting better. Stopped using because of the high sodium (had high blood pressure). I’m trying to get potassium-GHB but no one has it right now.

Links about GHB:

GHB: Best medication to treat severe sleep disorder:

https://news.uthscsa.edu/ghb-best-medication-to-treat-severe-sleep-disorder

The effects of gamma-hydroxybutyrate on sleep:

https://pubmed.ncbi.nlm.nih.gov/192353

Dr. Ward Dean on
GHB: The One Substance to really promote sound, restful sleep; Anti-Aging effects; Big Pharma conspiracy

https://www.reddit.com/r/Medicinal\_GHB\_Info/comments/1pyz312/dr\_ward\_dean\_on\_ghb\_the\_one\_substance\_to\_really/

Yes There's A Miracle Cure For Insomnia & Addiction!

https://youtu.be/qdS\_y-pgoYk

GHB: The Natural Mood Enhancer (Book):

https://www.amazon.com/dp/0962741868

u/yshcrp — 2 days ago

Grok: Which is worse for the liver, alcohol or 1,4 BD?

Alcohol (ethanol) is generally much worse for the liver than 1,4-butanediol (1,4-BD), especially with chronic or heavy use. pubmed.ncbi.nlm.nih.gov

Alcohol (Ethanol) and Liver Damage

Ethanol is a well-established hepatotoxin. Chronic heavy consumption leads to:

• Alcoholic fatty liver (steatosis), alcoholic hepatitis, fibrosis, and cirrhosis.
• It causes oxidative stress, inflammation, fat accumulation, and cell death in the liver via metabolism (primarily by alcohol dehydrogenase and aldehyde dehydrogenase, producing acetaldehyde and reactive oxygen species).
• Epidemiology: Alcohol-associated liver disease (ALD) affects millions globally (prevalence around 4-5% in general populations, much higher in heavy drinkers). It accounts for a large share of liver disease deaths, cirrhosis cases, and transplants. Mortality rates have risen significantly in recent years. pubmed.ncbi.nlm.nih.gov
This is dose- and duration-dependent, with risks escalating over years of regular heavy drinking. Many people develop irreversible damage.

1,4-Butanediol (1,4-BD) and Liver Effects

1,4-BD is an industrial solvent and GHB precursor. It is metabolized in the liver primarily by alcohol dehydrogenase (ADH) to gamma-hydroxybutyraldehyde, then to GHB (via aldehyde dehydrogenase). This shares metabolic pathways with ethanol, leading to competitive inhibition when both are present. pmc.ncbi.nlm.nih.gov

Evidence on hepatotoxicity:

• Animal studies (e.g., rats) show mild-to-moderate liver inflammation or minor changes at high doses (e.g., 500 mg/kg), but not severe or statistically strong organ-specific toxicity in subchronic studies. No strong carcinogenic signal. ntp.niehs.nih.gov
• In human recreational/chronic misuse (often high/frequent doses), reports mention toxic hepatitis as a complication, along with other organ effects (kidneys, heart, etc.). This occurs in the context of heavy polydrug or compulsive use. pmc.ncbi.nlm.nih.gov
• Acute overdoses can cause severe effects (respiratory depression, coma, death), sometimes mimicking toxic alcohol poisoning, but liver damage is not the primary acute feature. Co-ingestion with ethanol can worsen outcomes, including increased mortality and tissue damage in animal models (due to competition for ADH, leading to higher levels of the parent compound or altered kinetics). pubmed.ncbi.nlm.nih.gov

1,4-BD lacks the extensive long-term population data of alcohol; use is less common and often episodic or addictive in specific contexts rather than a daily societal norm.

Key Comparison and Caveats

• Chronic exposure: Ethanol has far stronger, dose-dependent evidence for progressive liver scarring and failure. 1,4-BD can contribute to toxic hepatitis in heavy users but appears less potent per se for long-term fibrotic/cirrhotic disease.
• Acute/high-dose: Both are risky; 1,4-BD has a narrower therapeutic window for CNS/respiratory depression (via GHB), and mixing with alcohol is particularly hazardous. nejm.org
• Individual factors: Genetics (e.g., ADH/ALDH variants), dose, frequency, nutrition, and co-exposures matter for both. Neither is “safe.”
• Neither is recommended: 1,4-BD is not for human consumption and carries risks of addiction, overdose, and multi-organ toxicity.

Bottom line: Alcohol poses a substantially greater overall risk to the liver due to its prevalence, well-documented chronic effects, and public health burden. 1,4-BD is toxic (especially acutely or in combination), but not a comparable driver of widespread liver disease.

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u/yshcrp — 7 days ago

I wonder if I’d have problems using 4ml twice per night (around 2 or 3 times a week). The one time I took 4.2ml I was knocked out and slept for 6 hours.

This source mentions liver, kidneys and heart (myocarditis) damage but these were people using up to 100-150ml a day:

Consequences of 1,4-Butanediol Misuse: A Review

“Typical complications include toxic hepatitis, nephritis and myocarditis, persistent increase in intracranial pressure.2 The frequency of drug use can reach 20–40 times per day, and the daily dose may increase up to 100–150 ml.”

https://pmc.ncbi.nlm.nih.gov/articles/PMC10698855/

I simply can’t stand not sleeping well anymore, insomnia drugs don’t work for me (even tried Dayvigo, terrible), antipsychotics I can only use for up to 4 days in a row cause they absolutely destroy me psychologically, mirtazapine doesn’t really work. So I might try 1,4 BD again for sleep.

And I have BFS (fasciculation syndrome) and it’s all linked to sleep. If I had access to Xywav I’d have had my life back for a while now. The corruption on the price is absurd. My doctors can prescribe it for me but the problem is the price because it has to be imported to my country.

u/yshcrp — 7 days ago

I’ve been taking 40mg right before sleep cause that’s the dose that is effective for making me stop waking up during the night.

Problem is I have BFS (fasciculation syndrome) and it’s linked to sleep deprivation and poor sleep. So now I need to sleep at an optimal time (early) and for enough hours.

So baclofen has been amazing in making me not wake up during the night, cause when I sleep really early, that’s when I wake up in the middle of the night with no sleep at all. But with baclofen that’s not happening.

Throughout the years suffering from this terrible disease I noticed that I need to sleep early and for 9 hours or even more to start feeling better.

The problem is that many times I was able to do that with baclofen + sleep medication but still wake up with fasciculations.

So maybe that’s the baclofen messing with my REM? Cause I read that at higher doses it can do that. I tried lower doses like 20mg/30mg but unfortunately I wake up in the middle of the night with no sleep.

What’s your experiences with higher doses for sleep? I maybe wanna try taking a 60 or 80mg dose one night so I can maybe sleep the most possible and sleep like a rock but I’m worried it’s gonna be even worse for my sleep quality (REM).

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u/yshcrp — 12 days ago

So I’ve been using Baclofen at 40mg at bed time so I don’t wake up in the middle of the night and lose sleep and it’s been working great at that. Some nights I’m sleeping up to 9 hours straight.

The problem is that I’m worried about my REM sleep cause I read that at higher doses Baclofen might reduce REM duration. And I have BFS (fasciculation syndrome) and it’s linked to sleep deprivation and poor sleep and I need the best sleep possible, which is early and for enough hours to start getting better.

And I’m noticing that even though I’m sleeping very early and for enough hours (9), I’m still waking up with fasciculations. So Baclofen is helping with reducing the sleep fragmentation but probably not helping with the overall quality of sleep.

So I’m thinking about switching to pregabalin or gabapentin. The problem is that I use these drugs for my fasciculations and neuropathic pain (and also for anxiety), so I’m worried that it might stop working for that purpose and it really helps in relieving these symptoms.

But my question is, will pregabalin have some maintained efficacy like Baclofen has for sleep maintenance? Cause I know very well how it loses efficacy if I use it all the time for my symptoms (I focus on using when I really need it, like when I didn’t sleep well).

Does the same apply to sleep, in the sense that it will stop working and I’ll be waking up in the middle of the night? Thanks.

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u/yshcrp — 14 days ago