Many have written to me asking about my experience taking higher doses of naltrexone. Shame on me, I forgot to complete and publish this. Sawree!

In addition to low dosing the opiate blocker naltrexone (which improves immunity and pain tolerance), I also take it in high doses.

Learn more about low dose naltrexone by clicking below, and in my post On Low Dose Naltrexone.

How did this come to be?

Whatever treatment I partake in, I try to learn as much as I can. I read. I talk to people and observe. I always try to find out what other patients are doing and what is working for them.

Naltrexone Suport Groups

The support groups I joined about low dose naltrexone were mainly populated by victims of auto-immune disease, not a collagen malfunction like mine. I have Ehlers-Danlos Syndrome.

An auto-immune disease is a different beast, a much more complex condition caused by many factors. A single-mutation rare genetic disorder such as I have makes a very big mess from one simple and sadly permanent problem.

Many sufferers of EDS also have auto-immune disease. I do not.

In LDN groups, many of the auto-immune disease victims reported being intolerably sensitive to LDN. I have heard this from prescribers as well. Some patients never get used to it. Some can only tolerate tiny amounts and must take breaks and cycle off it. Actually, cycling off might be a good strategy for any of us taking it long-term, since LDN operates on a perturbing effect. It interrupts the internal opioid feedback system, allowing it to re-regulate better.

Some people in these groups were so sick they couldn’t separate what was being caused by the LDN versus their usual symptoms. Yikes! I can relate to being so overcome with illness, you don’t know which way is up. Your days are such endless excruciating suffering that you cannot tell what is triggering anything or if this misery is just your baseline. It’s important to be aware if that is just the state of your illness right now, rather than erroneously blame external factors, which leads to paranoia, frustration and wasted energy, time and money. You can just be really f*cking sick.

I started on a very tiny dose of naltrexone:

0.2 mg of LDN

Immediately it caused symptoms of opiate withdrawal because my body had not healed from my long-term opioid use, even though I had been off for years.

It took a few months to tolerate LDN without drama. It was rough at times but brought relief. Soon I began feeling consistently better. Then even better. I have never needed to cycle off LDN to give it a reboot. On the other hand, it doesn’t affect me to skip it. Like if I forget.

My endocrinologist suggested taking it twice per day. I did and liked that very much. He also suggested taking more. I tried doses up to a quarter of a pill (12.5 mg) twice per day. I liked it!

To get different doses without paying the cost of compounding, dissolve a 50 mg in 50 mls of water. A scant tablespoon is about 4.5 mgs. Store in the dark in the fridge. Give the bottle a shake before dispensing. You won’t get the most accurate dose, but at least your insurance will pay for the standard pill. Oh ya, it’s yucky bitter if you make your own from the ReVia pills.

High Dose Naltrexone

I noticed among my EDS friends, many of us like a higher dose of naltrexone, 10 mg and above.

Hmmmmm.

We are strange drug metabolizers. We are highly anxious. We tend to experience many drug side-effects. We are very drug sensitive. Might more naltrexone be better for us? Curious!

I began doubling my dose. More was better!

My lovely family physician Dr. Gabriel Niles suggested trying 25 mg and higher doses of naltrexone.

He also prescribes Ascor and all the necessary accoutrement, if you have a heritable connective tissue disorder in the So Cal area and want to try some.

Dr. Niles has great patience for Ehlers-Drama and is willing to learn! Yay! He has a very entertaining way of entering the exam room. That alone is worth the cost of an appointment. It’s good to start with the patient giggling.

Dr. Niles read this article:

A Fresh Look at Opioid Antagonists in Chronic Pain Management.

Table from article:

Naltrexone for PTSD

After I ended my long-term opioid use for pain treatment, I had unending PTSD phenomenon. It was extremely debilitating. Night after night of terrors and flashbacks. It was unrelenting. Psychotherapy was not effective for it. Apparently, this happens to long-term opioid users. Yet it is pretty much top secret.

After bathing your brain in all that fake happy from opioids comes the endless fake sad. But just because it’s fake doesn’t mean it’s cute. One more clue as to why it’s so hard to get off or stay off opiates.

The high-dose of naltrexone helped my nightmares and other PTSD phenomenon very much, much better than the low dose. You can see from the table of 25 mg and above is indicated for PTSD. Note what else high-dose can treat: central neuropathic pain syndromes, fibromyalgia, chronic headaches.

Facebook Group Insanity

When I commented in the LDN groups that I was taking higher doses, people went apesh*t for my crime against humanity.

Stop it! Stop it! Stop it!

What you are doing is wrong! wrong! wrong!

We come here to be in a bubble! Not to hear another opinion!

How dare you take more naltrexone!

We are too fragile to listen to anything!

Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it!

So I joined groups for people doing the Sinclair Method to treat alcohol dependence. They take 50 mg before they drink and over time, this extinguishes the urge. When I dared commenting there about taking doses lower than 50 mg, they went apesh*t for my crime against humanity.

That has nothing to do with this!

What you are doing is wrong! wrong! wrong!

We come here to be in a bubble! Not to hear another opinion!

How dare you take less naltrexone!

We are too fragile to listen to anything!

Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it !Stop it! Stop it! Stop it!Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it! Stop it!

Facepalm!

Both high dosers and low dosers of naltrexone had improved mood, immunity, self-control, sleep, etc. No matter why they were taking it. Both. Well, it is the same drug.

Shhhhhhh!!!!! Don’t tell anyone this dangerous information!

The lesson to be learned is that Facebook groups are generally populated by people looking for someone to scream at.

Ehlers-Danlos and High Dose Naltrexone

Fatigue, Sensory Overload, ADDishness and Anxiety

It is not mentioned in the table above, but high dose naltrexone is used to treat autism. What are some of the difficulties of autism? Crippling anxiety and painful sensory overload.

I have very bad anxiety generated by my malfunctioning nervous system thanks to my problem collagen gene.

You, too? No need to answer. I know you do.

Since I pay a lot of attention to how I feel, I am aware that my nervous system has its own wacky reactions independent of what’s going on for me emotionally. I just smile and breathe through it. What else can I do? Best to accept it and get on with things. Worst to get upset about being anxious.

For me, I would say my unstable nervous system drives my mast reactions. Yes, my stress rashes, also called urticaria, are preceded by bouts of anxiety, often a feeling of emotional exhaustion. I cannot correlate them with with substances in the environment. Just sayin’ because there is a trend to think you are reacting to everything when you have EDS, but maybe stress is the biggest problem.

I have tendencies toward claustrophobia, too. Elevators and drive through car washes are hard. So I make myself go through them. I stay aware of my panic and ignore it. I intend to teach my nervous system that I can function.

Many of us with Ehlers-Danlos have terrifically uncomfortable sensory overload. Ugh! Lights, sounds, touch can feel horrifically painful. This can be so debilitating.

Many people with Ehlers-Danlos end up living an isolated life, for many reasons. Too much pain, too much fatigue, uncontrolled anxiety, too much sensory overload. Being around others (unless they are very kind and gentle) can be impossible. This is a phenomenon of a pain disease. It devastates the brain and nervous system.

Other genetic hyper-flexible collagen disorders besides EDS have these problems, too.

For me, I noticed immediately that high dosing naltrexone before bed dramatically lessens anxiety the next day.

Over time, my baseline calmness gradually and stably improved.

Somewhere along the way, my sensory overload kinda went away. Whut????

Sensory overload is thought to be a problem with the brain not filtering, failing to properly tuning out stimuli.

Managing input is a big job for the brain.

Exercise can really help with this because it improves brain health. See this article Athletes have healthier brains that can actually hear better, study says.

My exercise regimen is centered on coordination, hand grip, balance, SAQ (speed, agility, quickness), fascia toning, strength training, proprioception and getting heavy circulation. That sounds like a lot, but many aspects can be covered simultaneously. A kettle bell swing covers grip, coordination, fascia toning, muscle building and heavy circulation. I do long sets of free weights standing on one leg for balance and proprioception. TRX is a proprioceptive-rich device that improves posture. I do hopping exercises for SAQ. It’s all a lot of fun.

I refuse to do any moves that would introduce more flexibility into my spine. No burpees! No low back stretches.

I do very well with scents now. Sounds bother me a lot less. My anxiety is much better.

Long Term HDN Treatment

Over time, between the daily naltrexone, daily Ascor shots, regular vigorous exercise and going back to work, I have the energy of an average person. I think the naltrexone has had a lot to do with this. Also, circulation heals.

The fact is that many a severe illness leaves the victim with long-term brain fog and fatigue, even after the illness is over. A neurologist told me that.

For those of us with EDS, our very sensitive brains take such a beating with pain-feedback overload, and who knows what else is going wrong with us.

For God’s sake be careful with dementia causing drugs like antihistamines and anticholinergics.

Brain rehab takes time. Exercise, lift weights and try naltrexone. Naltrexone is a very safe drug.

When I take 50 mg, within maybe 15 minutes, I feel the opiate receptor blocking (yucky sad weird feelings). That rarely happens anymore. I sleep well. In fact, I think the HDN before bed helped re-regulate my sleep cycle. Yay!!

I have kept a low dose naltrexone in the morning in case that has different benefits.

I think it does. I aim for about 4.5 mg. That’s a scant tablespoon of one ReVia dissolved in 50 mls of water.

I may take an extra small hit during the day before exercise, if I have pain or severe anxiety. Helps my brain power through.

You could try a higher dose at those times.

I will take 50 mg during the day if I have severe pain or anxiety. It may make me sleepy but it helps my brain get through the problem and move on.

Find a caring doctor to work with you!

Happy Healing! ❤️