Thread by @ekverstania

Mutations in the CACNA1S or SCN4A can cause hypo- or hyperkalaemic periodic paralysis (hypokalaemia=low potassium; hyperkalaemia=high potassium).

At the onset of an episode, before it goes over to paralysis, a person may experience sensory overload.

medlineplus.gov/genetics/condi…

The low or high potassium doesn't always show up in a blood test, because the problem is inside the cells.

Just taking potassium supplements often doesn't help for the hypokalaemia, because if someone also doesn't have enough magnesium in their cells, the potassium won't go in and out of the cells properly.

A combination of magnesium, potassium and other things is needed.

For hyperkalaemia (HIGH potassium), a different approach is needed, and some of these measures are the exact opposite of what hypokalaemic people need.

Many people who have CACNA1S or SCN4A mutations meet some or all of the criteria for an autism diagnosis.

That doesn't mean that most autistic people have these mutations, but many do benefit from approaches similar to those used by people diagnosed with these conditions.

Hypokalaemia seems to be more common than hyperkalaemia in autistic people.

Here are some of things people can do to manage (or in some cases prevent) sensory overload caused by low potassium inside the cells:

https://twitter.com/ekverstania/status/1553446395809615873

Electrolytes (such as magnesium, potassium, sodium and calcium) must be in the right places in balanced ratios for the body to work properly.

People with Ehlers-Danlos Syndromes who have POTS (a condition that affects heart rate as soon as you stand up) may need to supplement with magnesium and potassium for their sensory overload, AND also supplement with sodium for their POTS,...

...while other people with sensory overload may want to REDUCE sodium if it competes with their potassium.

Many people who have sensory overload also struggle with symptoms such as constipation, insomnia, anxiety, leg cramps, and fluttering eyelids or fluctuating vision.

There may be many things contributing to these symptoms, but when seen in they occur in combination, they are very likely a sign of magnesium being too low (hypomagnesaemia).

Theoretically, a so-called 'balanced diet' should 'sort you out', but in practice this is not the case if your body doesn't process things in the average way (due to illness/past malnourishment, genetic differences, and other factors).

If your electrolytes are way out of whack, the tiny amounts you can get from broccoli, squash and other foods won't be enough to give you the intial boost you need. In some many cases, it won't sustain a person later on either, if their bodies tend to dump these micronutrients.

Assuming that the intestines are working OK-ish, the first step in treating sensory overload for many people may be in slowly ramping up magnesium supplements (e.g. magnesium glycinate) and then doing the same with potassium (e.g. a chelated potassium)...

...or using an alkaline powder such as A. Vogel Multiforce, which contains a variety of electrolytes, and which some doctors who treat children for sensory overload prefer. (Because it's a gastric alkaliser, it must be taken away from mealtimes, to not interfere with digestion.)

It's also important to work on other things, to make your body better at keeping its electrolytes.

For example, if your upper intestinal tract doesn't absorb minerals as well as it should, you may need to take lemon juice, or apple cider vinegar with cream of tartar (which happens to contain potassium) before a meal—depending of course on whether those are safe foods for you.

Since many autistic people also have mast cell disorders and release too much histamine, fermented foods (such as vinegar) are not always helpful to them.

If we manage to reduce inflammation throughout our bodies, we can also improve the body's ability to manage its electrolytes better.

'Reducing inflammation' is not exactly straightforward, and once again, people's bodies respond differently to various measures.

For example, some people use NSAIDS (non-steroidal anti-inflammatory drugs) to treat pain and inflammantion, while for other people (such as those sensitive to COX-2 blockers), this may work for a day, but then the pain comes back worse; or it creates an adverse effect at once.

The same applies to many 'natural' anti-inflammatory measures, such as essential oils or infusions made from certain plants. People who are sensitive to COX-2 blockers can feel their chest closing up, while those who are helped by such substances experience the opposite effect.

There may be many misunderstandings when people try to help their children and other loved ones.

They may not understand why their beloved patient complains of increased symptoms when the treatment is supposed to have made these symptoms better. So they may be tempted to increase the dose!

Generally speaking, though, an anti-inflammatory regime would typically include drastically reducing carbohydrate intake (once again, there are some exceptions here), and ensuring that there is a good balance between lysine and arginine in the diet and/or in supplementation.

These principles of course do not only have an effect on ameliorating sensory overload.

For example, a person who does all this just to manage sensory overload may find that after a few months or years, their arthritis and subluxations become less.

Eventually they may be able to do things they have not done for a long time, such as sleep on the side of their 'problem arm', pack away the arm sling, climb stairs without holding the handrail, sit down on the grass and get up without help, or even run.

One supplement which autistic people with hypokalaemic tendencies often find helpful in addition to magnesium and potassium, is taurine. Taurine is an amino acid which is also naturally present in the body, but in many autistic people, it is quite low.

Taurine helps with calcium homeostasis (homeostasis is a state of good regulation).

Many autistic people have complex problems relating to calcium metabolism.

In fact, the CACNA1S mutation mentioned above encodes for a voltage-gated calcium channel (a pore in cells).

This is not the only potential source of calcium-related problems, though, as this befuddling diagram (with a typo!) attempts to illustrate...

researchgate.net/figure/Integra…

We do not need to understand all that scientific stuff to be able to help ourselves with the basics, though; and anyway...

...the authors of the paper that accompanies that diagram think autism is awfultism, so even if you catch the gist within the jargon, you may get the feeling that they regard your autistic body as an interesting disaster, rather than the land of your beautiful autistic soul.

So, back to taurine:

Taurine helps reduce inflammation (which is a factor we want to manage to be able to manage and reduce sensory overload).

Taurine also helps with energy, focus and concentration.

In fact, some people use a kind of home-made custom stimulant cocktail which includes taurine, to be able to concentrate and work. The recipe for this cocktail overlaps with the ingredients for Red Bull, but works better than Red Bull in the long run, and is more cost-effective.

A few people should not take taurine. These are people with specific CBS gene mutations which interfere with their ability to effectively process sulphur compounds. Some of these people also have connective tissue disorders such as Ehlers-Danlos syndromes.

People who have these problems will usually also feel awful if they eat sulphury (usually stinky) foods such as broccoli, cauliflower, and onions.

Normally, people would want to eat foods with certain sulphur compounds to reduce inflammation (sulphate deficiency is a big problem in the population), but for this subset of people, such foods can't be processed in the usual way, even though their bodies need sulphur too.

Everything that I have written here has been pieced together from the evidence available in medical journals, and the personal experience of the many people who have applied it to their lives, and to the treatment of their patients.

I owe my learning, the past seven years of remission from sensory overload, and my ability to walk and run and lift things to my friend Benjine Gerber, who pieced it all together and provided the foundation for my learning, for saving my life and the lives of many other people.

For years, Benjine and I tried to get autism scientists to listen, to develop and disseminate the information in a format that could be used and customised by doctors to treat the millions of people (not only autistic people) who suffer from these types of sensory overload.

One neuroscientist found it so interesting that he hopped onto a plane and came to South Africa to meet with Benjine.

We had meetings with other neuroscientists and wrote to many autism research consortia to ask them to please turn this learning into an academic paper and a treatment guide.

But if people do not experience sensory overload for themselves, they simply do not understand why it is so important to us that this one issue should be a top priority for research and development.

So we were told by one of the world's leading autism scientists, Prof. Petrus de Vries, that while what we want is important, it is simply not their focus or priority, because they are working on 'early intervention'.

It was clear from his research projects that intervening early against chronic, debilitating potassium dysregulation to prevent suffering and to enable autistic children to avoid or at least ameliorate a lifetime of sensory hell, was not important, because his priority was ABA.

In January 2022, an article was published in The Lancet, a respected scientific journal, in which this same Prof. de Vries and others said that the most disabled autistic people among us should be classified into a category of their own, and that the way to deal with them is ABA.

Many of the contributors to this Lancet paper are experts in molecular and cell biology, and in genetics—the disciplines and subjects pertaining to what I explained above. They are involved in ongoing genetic research into autism. They could help us if they wanted to.

If you would like to thank Benjine for the knowledge I have shared with you today—without her I would never have been able to do this—then please buy one of her products or engage her services as a graphic artist or Web developer.
graphicouture.com/portfolio/

Benjine is an ordinary autistic woman in her late 40s who suffered from extreme debilitating sensory overload, and who pushed through immense obstacles to study the science needed to help herself, because no doctor or family member or anyone else was going to do it for her.

She did several courses at Coursera and pored over scientific publications on channelopathies and nitric oxide synthases and many other topics which make most doctors' eyes glaze over when I find myself having to slow down to explain the science which is already out there.

Autistic people deserve better.

We deserve help for the sensory problems which affect us and which affect people with many other neurodevelopmental disabilities and secondary conditions.

Sensory overload is not an exclusively autistic thing.

We all deserve better.