Vitamin B6 Toxicity and the Unknown Cause of Lou Gehrig’s Syndrome (ALS)
An accidental self-experiment may hold a clue
Why the hell does my eye keep twitching? It must be the stress.
I’ve been under a lot of stress this past year. Like so many people, I got a promotion without a pay increase, but with a whole lot of extra work and responsibility. I got to onboard several new employees onto my team. My mother who is 92, needs more help. My sister who has mental illness is always lurking behind the scenes, or can be found crashing at my mom’s place. My family depends on me for our household income.
With all of these pressures and stresses, my left has been twitching on and off, for several months, and now it has stopped. My right eye has now taken over, and is now twitching most of the time, even when I go to sleep.
Let’s check online….
The most common type of eyelid twitching, called myokymia, may be triggered by:
- Alcohol intake
- Bright light
- Caffeine excess
- Eye strain
- Fatigue
- Irritation of the eye surface or inner eyelids
- Nicotine
- Stress
- Wind or air pollutionBenign essential blepharospasm is a movement disorder, called dystonia, of the muscles around the eye. No one knows exactly what causes it, but researchers think it’s caused by a malfunction of certain cells in the nervous system called basal ganglia.
Well I have a lot of stress and eye strain since I work in IT, but that is about it from the list that I can identify. Oh, also I’m a black male so that adds to the stress load as well.
Should I go to the doctor?
Eye twitching usually goes away on its own within a few days or weeks with:
Rest.
Stress relief.
Decreased caffeine.Schedule an appointment with your health care provider if:
- The twitching doesn’t go away within a few weeks.
- The affected area feels weak or stiff.
- Your eyelid completely closes with each twitch.
- You have difficulty opening the eye.
- Twitching happens in other parts of your face or body as well.
- Your eye is red or swollen or has discharge.
- Your eyelids are drooping.
Well it’s been going on intermittently for maybe 6–12 months…so maybe it’s now time to talk to the doctor.
So, on to the accidental experiment that happened.
I was changing jobs and as I mentioned under a lot of personal and job stress. I have been extremely diligent to get enough sleep, exercise, bi-weekly therapy sessions, watch my diet, and I have been taking several multi-vitamins daily, as well. I assume this would be enough to keep me healthy.
About a month ago, I noticed that the muscle twitching of my eye became more consistent and severe, even bothering me when I go to sleep which is not normal for me.
One month ago, I gave notice at my work and my wife and I planned to take a week off in the Dominican Republic before I started the new job. I thought, well I’ll get some rest and hopefully better sleep. I thought that I’ll have to stop the vitamins until I get back, so no big deal. While on vacation the eye twitching reduced, so that was definitely positive. I attributed this to a reduction in stress.
When we returned, I re-started taking my multi-vitamins. Well the twitching came back with a vengeance with my right eyelid. Not only that, but I started to feel muscle twitching in other parts of my body too. My shoulder had a strong vibration which I’ve never felt before. I had some twitches in the center of my chest. Both of my quads above my knees started to quiver from time to time, and I could feel pulsations in my calves while in bed. Lastly, when I went to sleep, I could feel the muscle in my right foot, on the right side of my foot, vibrating every 4 seconds consistently.
OK, this is really not good, and something is definitely not right.
Next, I committed the cardinal sin to google my symptoms. What I found was that eye twitching is either benign and resolves in a few weeks, or alternatively it could be a pre-cursor to a worse neurological condition, with the worst of those conditions being ALS or Lou Gehrig’s disease. This is a progressive disease that attacks the nerves and it is usually fatal in 1 to 5 years. SO, either completely benign (like due to stress), or a fatal disease (due to neurological degenerative illness). Those two results seem to be very far apart and totally unrelated, but both results can begin the same way.
Often our illnesses manifest first in our eyes and their muscles. The eyes and the muscles around them are very small, and finely tuned. If we have an illness, then the symptoms of that illness often first shows up there, first.
ALS is named after Lou Gehrig a famous baseball player who died from it. Steven Hawking also developed it, but lived with it for many years, albeit disabled and bound to a wheel chair. Gabor Mate often says that of all his patients that were diagnosed with ALS, they were people who overworked themselves. They were people who were so dedicated to their work and those around them that they neglected themselves, to their own detriment. That sounds like me too.
Not good, don’t panic, this twitching can’t be that.
From the Mayo Clinic, these are the symptoms of B6 toxicity.
- A lack of muscle control or coordination of voluntary movements (ataxia)
- Painful, disfiguring skin lesions
- Heartburn and nausea
- Sensitivity to sunlight (photosensitivity)
- Numbness
- Reduced ability to sense pain or extreme temperatures
Then I came across various Reddit posts like this one, where many people are reporting symptoms of B6 Toxicity, often at doses that are well below the US maximum of 100 mg per day.
https://www.reddit.com/r/MCAS/comments/wnpeaf/has_anyone_else_experienced_vitamin_b6_toxicity_i/
I thought deeply about what could be going on as I had not been taking any B6 specific supplements at all, at least not to my knowledge. But wait, now that I thought about it, I actually had been taking Kirkland daily multi-vitamin supplements, in addition to some for vision, calcium and zinc. I really had been taking at least 2 gummies daily. Some days I took four, but most of the times I only took two, to stay well within the daily guidelines of 2–4 gummies per day. I quickly checked the back and looked at the B6 levels per gummy, and it was 0.5 mg of B6!
That level in the vitamins is almost nothing. How could I have symptoms of B6 Toxicity that developed so fast at a dosage of around 1.0 mg of B6 per day, which is easily well within all regional guidelines? No doctor would ever think that this could occur at such a low dosage. This, however for me, easily fits my past trending for sensitivity, that I have. I am an HSP or highly sensitive person. Sensitive you may ask to what? Well pretty much everything.
Let me explain my list of existing and developed sensitivities that I now have recognized, and the approximate age that I realized that I had developed them. Also note that I have found that sensitivity in general, and the number of these sensitivities, seems to increase with age.
- Teenager — sensory sensitivity (tactile, aural, olfactory, visual) — Very Highly Sensitivity Person (1 in 5 persons is identified as HSP)
- Teenager — Lactose Intolerance — very common with adults (65% of adults — common)
- Adult (45+) — Alcohol Intolerance — drinking alcohol makes me extremely sleepy/drowsy, and gives me diarrhea
- Adult (35) — Sun Allergy (Solar Urticaria) — Developed after a bad sun burn in the Dominican Republic — typical of Caucasian female (I’m a black male), also a symptom of B6 Toxicity
- Adult — Tylenol — I can only use 1 tablet, if I take 2 which is the maximum dosage per 4 hours, my hands start to shake and I can’t sleep
- Adult — Vitamin C — At doses over 1000 mg per day I experience burning/painful urination
Here are a few examples that I have, just to drive the point home of my sensitivity. Before taking Kefir, I was using SPF 60 or preferable SPF 120, along with 99% UV polyester clothing to prevent a skin reaction. After drinking Kefir for several months, I’ve noticed that my immune inflammatory response has been reduced by about 80% so I no longer need sunscreen to go out and about in the increased UV that we experience during summer in Canada.
Also, recently after Covid I have noticed that when I am exposed to a flu or cold (or perhaps Covid) for example on TTC (Toronto Transit bus or subway), my skin becomes slightly but noticeably more sensitive to the touch. If I then subsequently go on to develop a cold or flu after that, my skin on my arms and legs feel raw and painful. It is like my skin has been scratched over with sandpaper.
Additional Factors
I thought about my diet which also consists of a daily bowl of cheerios which is B6 fortified, along with a banana which is rich in B6. We often eat meats like chicken, pork, and beef which are all rich in B6. We love avocadoes and other vegetables, which are rich in B6. I love nuts which are also rich in B6.
I have been drinking Kefir for the past couple of years. I have found that it enhances your gut flora which enhances your brain’s clarity and thinking. I also read that when your gut flora is healthy, your vitamin uptake is also enhanced. Perhaps that is why I am getting more than enough B6 from my relatively healthy and diverse diet.
Other Kefir benefits from the National Library of Medicine.
Experiment Results to Reverse the Spasms
It is now only 4 days later, and after ceasing all multivitamins, and foods that are very rich in B6 (like bananas), my muscle spasms have all mostly abated. At night when I lie down, I still feel some gentle buzzing sensations in my lower legs, but not muscle spasms as before. My eye twitching is already about 75% improved, but there is only so much day to day stress that I can remove. I have increased my water intake dramatically (8 glasses per day), and do at least an hour of mild to moderate exercise every day. I’m also peeing like every 40 minutes, what a pain.
Online it is stated that it takes about 30 days before you body can remove excess B6 from your systems. This excess B6 seems to remain in your muscles, where it causes nerve damage. Once your body has a dietary deficit of B6, you will start to remove the excess in your urine. The only thing that you can do to promote this, is to:
- Stop all B6 supplements
- Drink plenty of water to flush B6 from your blood
- Exercise to use more B6 as B6 is vital to our bodies, but in the right amount — athletes need more B6 that regular adults
Our bodies need the correct amount of B6. We need enough, but not too much, and not too little. It is rare to not be able to get the required B6 from your diet, but interestingly the symptoms of B6 toxicity are very similar to the symptoms of a B6 Deficit.
Total recovery in cases where you may have been severely affected can take 6 months to a year, with some severe cases may not being fully reversible.
My right eye still twitches when I am stressed. Learning about this vitamin B6 toxicity issue, is causing my right eye to twitch.
Theory
Based on my unplanned and unexpected self experimentation over the last year this is my theory. Doctors know why ALS is fatal, the nerves that control your muscles become damaged and disabled, and eventually you cannot breathe and you die. The question that remains, is why. What is causing the nerve degeneration? Why does this illness occur only in very rare cases, and only happen to a select few people. Also why do athletes experience this illness at 4x the rate of the general population.
I think my experiment may provide some vital clues. We know that something either environmental, dietary or genetic, or some combination of these three, is causing the nerve degradation and damage, in this small group of affected people.
Based on my experience, I started to experience this uncontrolled spasming very quickly throughout my body. Initially I though it was stress, but it seems to be related to B6 toxicity as, once I stopped the multi-vitamins, the spams have improved. It will take a month or two to confirm that the spasms resolve completely.
Athletes have to be very regimented to be successful, I used to be one. I have also noticed that many great athletes, and great people and scientists, are highly sensitive (HSP). Highly sensitive people notice and see things that other people miss. They are also more affected by their surroundings. That is what it means to be highly sensitive. HSPs are also often more affected by chemicals, stress and things like alcohol or drugs. It makes sense that HSPs may also be more sensitive to neuro-toxins like excessive vitamin B6, when ingested in doses that would be fine for the general public.
So back to athletes being regimented. Athletes have to be regimented, to be successful. Perhaps like me, they are extremely highly sensitive to either B6 for example, or to some of the supplements that athletes often take to build muscle like protein powders, which also may have supplements. As above, the US recommends no more than 100 mg of B6, while the EU has that maximum dosage at a significantly lower 12.6 mg/day.
For me, that additional 1.0 mg/day in addition to my diet was too much. Perhaps, this hyper-sensitivity in some individuals, is what is causing these rare cases of ALS.
I consider myself as an HSP to be a canary in the coal mine. I often am affected by things at such low, or even undetectable levels, long before a “normal” person would experience them or any negative consequences.
Please note: This post is my experience, and it is NOT meant to be medical advice. Please consult with your doctor before starting or stopping any medication or supplements.
References
National Library of Medicine — Vitamin B6 Toxicity
Max B6 Allowed in Supplements by Region
Understandingb6Toxicity.com — B6 Toxicity Questionnaire Results
Nutrient Effects on Motor Neurons and the Risk of Amyotrophic Lateral Sclerosis
