Mast Cell Activation Syndrome

Stub

To do: look into Cromoloyn(?) and beta blockers

For me a MCAS reaction often feels like food poisoning that comes on really hard and fast but only lasts about an hour or two instead of a day.

I found that the supplements I was taking that helped with other conditions were triggering the MCAS reaction when they hit my stomach if there wasn’t enough food with them. Getting the amount and timing was too challenging until I found the Orgain Protein Shakes (ThriveMarket has good prices on them).

I also call the MCAS reaction a histamine dump – the mast cells dump too much histamine into the system at once and can cause any symptoms that allergies can – which are immune system processes overreacting.

The “simple but not easy” (is there a word for that?? I want a word for that, I don’t care what language – to do, search) answer is to reduce the toxic load my body is coping with and increase the nutrients I’m getting.

Cutting all sugar and processed foods would be a major step in that direction.

Input Required

I had a friend ask for ideas, I’m generalizing here for anyone it might help.

Kiddo asks parent for proprioceptive input.

Parent either can’t or can only offer some input.

Kiddo can’t handle the refusal – they already are disregulated and needing input, so they escalate.

My suggestions came from my experience:

1 One, it’s ok to have boundaries, and the less someone respects your boundaries, the bigger the boundaries have to be.

I’ve described it like the following distance when driving – if someone in front of you or behind you is tailgaiting, you need a larger following distance. That way if the person in front crashes from tailgaiting you have time to brake. If the person behind is too close then you also need time to brake slowly so they don’t hit you like they would if you had to stop suddenly.

What this looks like is stopping your kiddo farther away and asking them to slow down and ask first. If they are too disregulated to respect the boundaries, then you know to take action to protect yourself and help them get regulated. For example my personal bubble with the kiddo is my head and my back, if he wants to go behind me he has to ask, and if he wants to touch my face he has to ask, and if he wants to give me a hug, he doesn’t have to ask unless he’s trying to come up behind me.

2 Two, if they are asking for input you can’t give, try to give them or help them get the input they need. I’ll offer “squeezies” – a big bear hug, “squishies” – squishing the kiddo between me and a counter/wall/etc. or “jumpies” – holding hands and the kiddo jumps while pushing down on my hands, similar to holding a gym bar or pushing down on a counter or table and jumping.

In this case kiddo wanted what we call “shoulder bup” – sitting on shoulders. The two alternatives I thought of was doing a piggy back and then leaning against the wall to take some of the weight off or doing the shoulder bup with leaning back so that most of the kiddo’s weight ends up on the back of the seat if available.

If those aren’t options, a headstand or handstand might help or the other types of input mentioned. Another one we like is “Timber!” where they call that and you are a tree that then falls down on them – usually sitting side by side and leaning into them.

Emotions, Feelings and…. Proteins? Oh my!

I found this great explanation of various theories of emotion:

List of Emotions: 271 Emotion Words (+ PDF) – The Berkeley Well-Being Institute (berkeleywellbeing.com)j

They don’t distinguish between emotions and feelings however.

This article does a great job of explaining the differences with references:

How to Measure Emotions and Feelings (And the Difference Between Them) (imotions.com)

The TLDR; is that emotions are reactions stemming from the amygdala in response to some input. Feelings are how we interpret those emotions or assign meaning to them in the prefrontal cortex.

Emotional responses last about 30-60 seconds in the body (TEDx source Mandy Saligari), feelings can cause the emotional response to get re-triggered.

Emotions we can learn to tolerate, feelings we can learn to change because they are based on our schemas/thoughts/programming/stories we tell ourselves about both the emotion and the stimulus that triggered it.

My umbrella hypothesis about sensitivity, Autism and neurological differences

Just found this October 23, 2022: How Childhood Trauma Leads to Addiction – Gabor Maté – YouTube

WE EVOLVED to NEED CONNECTION and AUTHENTICITY

Lacking those needs, we lack health.

———————————————————————————–

This is my rough draft, I’m throwing things out before they are polished to get the ideas out in the world sooner.

HSP 20%-30%

So if Neurodivergent (ND) = HSP

Then ND = 20-30% and Neurotypical (NT) = 70-80%

OCD, ASD & ADHD are not neurotypes, they are collections of challenges that ND/HSP have or they are symptoms of an underlying problem (impared sleep for example) or lack of certain skills.

For example:

  • Emotion regulation is a skill. NT tend to learn it innately, ND often need direct instruction, which they may or may not get as children. (ND tend to learn scholastic skills innately instead, but NT need to be taught that)
  • Executive dysfunction is often impaired by sleep issues which can stem from many sources. NT with sleep problems also have executive function challenges. Sleep problems are just much more common and harmful (larger impact per degree of problem) for ND. Part of that goes back to the self regulation skills and whether they were taught or not, such as good sleep hygiene and routines.
  • Anxiety is common among ND, that’s actually their role – to be the cautious future thinkers. Again it comes back to learning emotion regulation skills to manage the anxiety (Think Cassandra of Greek myth – if you’ve identified with her, you’re probably ND)
  • In OCD the ACEs (adverse childhood experiences) have tuned their brain to be even more sensitive to danger and the compulsions are a coping tool. Either they are hyperfocusing on something to avoid the pain of the anxiety or they are using a strategy to calm themselves or it was a self preservation habit or something along those lines
  • ADHD and Autism: Aspergers or ADHD? The answer will surprise you. – Penelope Trunk Careers
  • ASD difficulties in social interactions and communication – again just a skill not taught that NTs pick up automatically and NDs don’t, and also there has been research showing that ND communicate fine with ND, it’s just the ND-NT communication that is challenging.
  • ASD repetitive behaviors are again compulsions like OCD, they are a coping tool – so adverse events paired with a lack of (socially acceptable) coping skills/tools
  • ASD intense interests – again, this is the role of ND/HSP – I would guess that every advancement ever was made by someone ND, either because they didn’t realize not to do something just because no one else did it or because they were curious. NDs with good social & emotional skills have intense interests/are deep thinkers (see HSP descriptions) – they just mask or control them successfully when interacting with NT folks or a mixed crowd.
  • unusual responses to sensory stimuli – Again this is just the role of the ND – high sensitivity for danger detection paired with a lack of coping tools or skills – NDs are the canaries in the coal mine of the human race (link rise of Autism with chemical farming, smoking, sitting, sugar, processed foods, diabetes, Alzheimers, microbiome)
  • The reason people have been able to “cure” autism is because they have been able to teach the missing skills or to correct an underlying health problem caused by the high sensitivity, such as intolerances to gluten, food coloring, etc. The person is still ND, but the problem behaviors (maladaptive coping tools, missing self-regulation skills, dysregulation caused by a health problem) have been resolved.
  • Ehlers-Danlos has a high co-morbidity rate with ASD
    • It’s a collagen disorder, the hypermobile type is the only one they don’t know the genes for the last time I checked – which would make sense if they are trying to compare people who have EDS and are diagnosed because they are suffering from it, and people who don’t have it + people who have it but are undiagnosed because they are not suffering from it or it has been labeled something else like Chronic Fatigue Syndrome, Fibromyalgia, etc.
  • One of the symptoms of defective collagen is increased tissue permeability
    • That could be a major factor for the sensory sensitivity of ND (HSP)
    • Again, there are things that can be taught to reduce the risk of challenges, there are those who innately figure them out or are taught in childhood and they often go undiagnosed unless it causes problems later in life (arthritis, joint pain, etc.) or they are misdiagnosed because EDS is “rare” – even though they know it’s a dominant gene????

So that leaves us with two things:

First – how can we test this hypothesis?

Second (wish I could recall what I meant, maybe the “what should we do about it?” part?)

Research studies that screen for EDS (somatic traits), HSP (mostly cognitive traits), OCD, ADHD & ASD, ACE & PCE scores and brain scans.

Participants should include large cohorts that are already diagnosed with one of the above issues and screen for the rest in addition to NT controls.

ADHD symptoms arise from executive dysfunction,[6][7][8] and emotional dysregulation is often considered a core symptom.

https://en.wikipedia.org/wiki/Attention_deficit_hyperactivity_disorder

Obsessive–compulsive disorder (OCD) is a mental and behavioral disorder in which an individual has intrusive thoughts and/or feels the need to perform certain routines repeatedly to the extent where it induces distress or impairs general function

Risk factors include a history of child abuse or other stress-inducing events; some cases have occurred after streptococcal infections.

Obsessive–compulsive disorder – Wikipedia

The autism spectrum is a range of neurodevelopmental conditions generally characterized by difficulties in social interactions and communication, repetitive behaviors, intense interests, and unusual responses to sensory stimuli. It is commonly referred to as autism or, in the context of a professional diagnosis, as autism spectrum disorder (ASD), but the latter term remains controversial among neurodiversity advocates, neurodiversity researchers, and many autistic people due to the use of the word disorder and due to questions about its utility outside of diagnostic contexts.

Autism spectrum – Wikipedia

Having a partner is overrated if you aren’t happy.

I replied:

Only someone with autism would say that. Having a partner is absolutely NOT overrated. Steering one’s own ship IS overrated. Wanting to do everything how we want to do it at the cost of making compromise to share life with someone else is the definition of autism…The human race would not have survived if it were normal to want these things.

She replied:

[I had] a narcissistic/borderline mother who made emotional chaos normal in my childhood…So I picked two husbands where emotional chaos was normal. Then I got sick of feeling emotionally drained and got out. Since then I’ve navigated carefully to protect my serenity. In therapy again now to expand my thinking around this and more. I don’t think I’m autistic. 

I replied: You’re autistic. Here’s why:

Self-analysis is autism

Just because you can spew DSM stuff doesn’t mean you’re not autistic. In fact, analyzing ourselves as a hobby is a marker of autism — we are constantly trying to understand how to world works, and how we feel comfortable. Because actually we can’t do either of those things. And the real reason we are out of step is that our brain makes us blind to ourselves. We see other people clearly but we don’t see ourselves.

But wait, all that analysis has payoff. People with autism are better writers than everyone else, because we spend our life memorizing dialogue and replaying it in our heads trying to figure out what just happened. ]….

Autism – Penelope Trunk

[Borderline personality is autism

So many autistic women think they are not autistic but “just recovering from a mother who has borderline personality disorder”. But autism and BPD frequently go together and scientists think BPD is so similar to autism that it’s another autism spectrum disorder. BPD is caused primarily by a mother who has BPD and autism; her erratic parenting causes her autistic daughter develop BPD.

Narcissism is autism

Narcissism and autism are so similar that scientists are thinking narcissism might be a subset of autism so we could just delete the narcissism category from the DSM.

There are many published papers explaining why narcissism is part of autism. You don’t need to know every piece of research but you do need to know that if your therapist diagnosed your parents or your spouse with narcissism it’s because the therapist doesn’t understand autism, and you have it, and that therapist can’t help you.

Divorce is autism

When the commenter writes that she’s been divorced twice. That’s probably because she decided the men have a problem (narcissism) and she has a problem (raised by a mom with BPD) and she felt depressed. But depression is part of autism, regardless of who we pick to marry, and staying married protects against the worst depression.

Autistic marriages are likely to end because we have the most emotionally compromised dating pool. If you’re not autistic you sort out people who violate all the social rules for dating. So autistic people are left with a dating pool of each other, and we don’t even notice there’s anything wrong.

Loneliness is autism

That is, until the honeymoon glow turns to marital glower and loneliness seems hard to separate from choice of spouse. I’ve done that. But once you get divorced, you’re forced to diversify your ideas about loneliness.

I used to think loneliness was something I had from not being around enough people, and that’s why I feel less lonely when I write on my blog. But I discovered that loneliness is a neurological disorder. Loneliness isn’t caused by a lack of social support. Loneliness comes from chronic illness or social anxiety. And the only way start feeling less lonely is to first acknowledge it’s an autism thing.

Interestingness is autism

So, yeah, I do think the commenter has autism. She must be really interesting to have appealed to her ex spouses because she — like me — is totally interested in her own stuff. So we are magnets for people who like interestingness. And wanting life to be interesting is not normal. There are higher values than that. But not for us.

So it’s no wonder that adults with autism know more about autism than mental health professionals. And if you want to know if you have autism, don’t ask a professional. Ask someone with autism. And if you want your life to get better after you find out you have autism, talk to people who also know they have autism. You get really smart about yourself really fast once you have that label.

Autism – Penelope Trunk

amygdala vs prefrontal cortex

my hypothesis is that there is a common neurodivergent brain type identified as HSP, also seen in non-human populations and that OCD ADHD and autism are conditions that affect that neurotype based on: chemical exposures, childhood ACE or PCE and epigenetics. Especially with chemical exposures, ehlers-danlos seems to be also tied in, as that may make tissues more permeable and more susceptible to chemicals creating epigenetic changes, also might support the sensitivity trait

Disabled by the environment or the social model of disability

survival and success through diversity

Societal roles and functions of neurotypical and neurodivergent

Two sides of any trait, for example: anxiety stems from future thinking, future thinking allows planning for the future – for example this climate crisis

Maslow’s hierarchy of needs versus the Blackfoot Native American system

United States medical system is broken. The education system is broken. The legal system is broken. The economy and government are broken.

This is how humans learn – through failure. We break things to figure out how they work. And with that understanding we can repair or rebuild better.

Mental health is physical health – the brain is part of the body and what you eat goes into your body and is what your body uses to run itself, so food is medicine.

If the soil is lacking nutrients, then the plants will also, and so will we or the animals we eat who eat the plants. Without the nutrients we need, our immune systems end up in overdrive or we end up with “neurological” disorders because we don’t have the components needed to work properly. Our immune systems get overwhelmed or confused and we end up with inflammation, which ends up being the root of so many diseases.

Notes from Stanford Neurodiversity Summit: