Tag Archives: POTS

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Scientific Method

  • Hypothesis = Create a question
  • Experiment = Ask the question (test the hypothesis)
  • Data collection (observation) = document the answer
  • Conclusion = document the parts of the question left unanswered and any new questions.
  • Questioner chooses which question to focus on next

Question: What do I do next? Make a choice.

Dec 16 2022 Log: What is the scientific method?

Scientific method – Wikipedia

I choose to use the Wikipedia link because I just realized that Wikipedia is basically what I’m building here on my site for how my brain works. Me-pedia!

And now I’m laughing – I searched to see if there was a MePedia already. And there is:

Myalgic encephalomyelitis – MEpedia (me-pedia.org)

And reading the about ME…… it just sounds like everything I’m talking about here but from a different perspective. It’s just an Ehlers-Danlos highly sensitive brain with trauma damage.

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Tracing collagen through cell adhesion

Laminin – Wikipedia

Basal lamina – Wikipedia

Fibronectin – Wikipedia

The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders – PMC (nih.gov)

Brain-like organoids grown in a dish provide window into autism (medicalxpress.com)

activity & adhesion (see collagen)

Home page – Sensitivity Research

So if 30% of people are environmentally sensitive (or HSP) and 40+30 are standard or low sensitivity:

What if EDS is or is one of the traits that allows/causes the sensitivity?

What if everyone with Autism is HSP (but not all HSPs are Autistic)? Is the Autism our response/coping with the health problems? Is that why some folks “cure” Autism with diet changes? They are still HSP, but not acting Autistic because they aren’t coping with the health problems caused by toxins (that they are more sensitive to) in their diets?

From WikiPedia:

Collagen is not only a structural protein. Due to its key role in the determination of cell phenotype, cell adhesion, tissue regulation, and infrastructure, many sections of its non-proline-rich regions have cell or matrix association/regulation roles.

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Fibromyalgia, Chronic Fatigue, aka

Postural Orthostatic Tachycardia Syndrome POTS aka Vasovagal Syncope

Pain – don’t write off the pain as all in your brain until you’ve explored other options – EDS can lead to pain. Someone who works with fascia or a gentle chiropractor (drop table, wedges, activator, no pop & crack) should be checked with if everything else has been ruled out.

Fatigue – POTS can cause massive fatigue & brain fog. EDS can contribute as well since muscles are compensating for tendons & ligaments.

Nonrefreshing sleep can lead to the fatigue & brain fog as well.

Dizziness – POTS/Vasovagal Syncope

Sensitivity to heat/cold – POTS again, which can lead to Raynaud’s.

Sensitivity to lights & noise seems more like a high sensitivity thing, so related but maybe not as directly. Fragrances are definitely an issue with POTS. Some of my earliest episodes during puberty were triggered by chemical fumes. I was always sensitive to lights and noise, so only the fragrance part was new.

hypersensitive central nervous system that converts some normal sensations to pain (allodynia) and heightens the sensation of pain (hyperalgesia).

Other symptoms of fibromyalgia include:

This is from a description of Fibromyalgia on verywellhealth.com:
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Signature

Since I lost it once and have to redo it and am including resources, may as well share here:

My Pronouns: they/she

My Concerns: ADHD, Anxiety, ASD, Climate change, Collaborative & Connected Parenting, EDS (with POTS & Raynaud’s), Homeschooling (Unschool-ish, SEL focus), Hyperlexia, Sustainability (Search with Ecosia)
Join me in forming good habits with Habitica!

Embrace diversity with curiosity!

Anxiety:

https://www.goodtherapy.org/blog/how-can-i-tell-if-i-have-anxiety-what-to-do-about-it-0914175

Too many people are letting anxiety make decisions for them. Approximately 1 in 4 Americans will have an anxiety disorder in their lifetime, and still more experience clinically significant anxiety symptoms that lead them to turn down opportunities and undermine their own potential. Even for those who do not struggle with clinical levels of anxiety, the messages about fear and anxiety in our society are not healthy ones. Long before coronavirus, the repeated message has been that the world is a dangerous place and we are vulnerable.  And more than that, we are fragile and can’t handle feelings of anxiety.

…

We need to change this narrative and embrace anxiety as the signal that a challenge lies ahead. We can shift the thinking pattern that screams in our heads that the situation portends a threat we cannot manage to a quieter voice that empowers us to handle a challenge, and recognize that we can get back up even when something doesn’t go well. It is time to develop a new mantra: Anxiety is uncomfortable but not dangerous. Anxiety can be tolerated so we don’t need to escape or avoid situations that make us anxious when no objective danger is present.

…

Resource: https://mindtrails.virginia.edu/

https://adaa.org/learn-from-us/from-the-experts/blog-posts/consumer/why-anxiety-should-not-be-feared

Climate Change

https://kids.nationalgeographic.com/science/article/climate-change

https://www.nrdc.org/stories/your-guide-talking-kids-all-ages-about-climate-change

https://www.npr.org/2019/10/22/772266241/how-to-talk-to-your-kids-about-climate-change

4 Ways to Teach Your Kids About Sustainability
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Are you double jointed? Or is it Ehlers-Danlos?

While hilariously and sadly Ehlers-Danlos (EDS) is a “rare” disease, it’s actually just an adaptation that can have both upsides and downsides.

It’s also very simple to check for, just go through this scale and see if you score 5 or more (or would have as a teen – often we develop stiffness or arthritis later and aren’t able to move the way we used to):

https://www.ehlers-danlos.com/assessing-joint-hypermobility/
For elbows and knees I wasn’t sure for a while, but apparently they aren’t supposed to go farther than straight.

Introduction to joint hypermobility and connective tissue disorders

If you do have Ehlers-Danlos, while there is a HUGE host of symptoms (comorbidities), one of the most commonly identified is joint subluxation.

Joint – I would define this as: where two or more bones are connected by ligaments (tendons attach muscle to bones and can cause issues too). Stub – list all joints, especially less common ones, like between each vertebra in the spine. Today I’m just focusing on educating myself on the thumb so I can address my pain.

Subluxation: https://youtu.be/zQh0PeyZvxY

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You’re not Autistic. Or HSP. Or anything except Human.

You’re a human with the environmentally sensitive neurotype & likely genotype.

If you have Autism – then you also are probably suffering from some number of these issuses:

  • epigenetic changes caused by illness, trauma, stress or inherited
  • nutrient deficiencies
  • attachment disfunction or trauma
  • sleep deprivation (tongue tie, nursing, chewing – effect of jaw development on airway)
  • impaired microbiome
  • poor interoception
  • poor proprioception
  • emotional neglect
  • convergence insufficiency
  • insufficient exercise
  • insufficient time in nature
  • Ehlers-Danlos
  • MTHFR mutations (add info on diet changes, when everyone ate liver, it didn’t matter)
  • probably other stuff I’ll add as I find

Your intellect, creativity, independence, etc. are all part of your neurotype, but if you can’t connect or communicate with others, that’s something you can work on and improve – and most likely therapy isn’t the way to start – figuring out your particular health problems and addressing those is. Starting with sleep.

With the rise of chemical farming, both chemical exposures and also lack of nutrients, Autism has increased. With the introduction of sugar and processed foods, Autism has risen.

There have always been Neurodivergent folks, they are the ones driving the advancement of society. And without Neurotypical folks, society would collapse. We’re in the process of fixing things by way of breaking them first to figure out how they work.

Before humans did things that worked, that were discovered by trial and error experimentation, but didn’t know why it worked. Examples being much of indigenous knowledge, and eastern knowledge.

The main example I know of is acupuncture & qi. Western medicine only recently realized that the fascia maps to the energy flow of qi. And sensory signals are energy flows/transfers.

Permaculture with its restorative agriculture that can restore the soil-food web and our health is also the solution for climate change. Human culture and the human race are evolving into a global community, and right now we’re suffering the growing pains. If we can learn to truly care for ourselves, then we’ll learn that to do so, we must care for others and our planet.

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POTS and not the cooking or herbal kind

Here’s some info on POTS (Postural Orthostatic Tachycardia Syndrome) – which I think might also be called Vasovagal Syndrome – at least it sure sounds the same to me, possibly the vasovagal one is missing the other related symptoms. Either because they aren’t there or just the connection isn’t being made since they aren’t what a cardiologist might be looking at. 

Postural Orthostatic Tachycardia Syndrome (POTS) (for Parents) – Nemours KidsHealth

I didn’t discover it until 2005-2010ish, but looking back it explains my temperature intolerances, fainting, dizziness, vertigo, fatigue, tunnel vision, chemical sensitivities, etc. and those either developed or got worse during my teenage years.

Being pregnant and having the associated increased blood volume was the best I ever felt and I finally figured out the wall of fatigue the first couple days of/before my period is from the drop in blood volume.

It also addresses the gas and nausea I would have that was one of my worst symptoms. I didn’t figure that out until much later and even then I didn’t know why, it took my ADHD doctor to explain it to me because he was monitoring my blood pressure while we found the right dosage of Adderall. Turns out that the side effect of increased blood pressure is super helpful for me and I was able to reduce my Midodrine by half or more.

I only figured out my POTS because I kept seeing the acronym when I was looking up EDS info. When I went to look that up it was another epiphany moment for me.

Syncope can trigger your sympathetic nervous system (panic! the brain isn’t getting blood to provide oxygen!!), and then when you recover that can kick off the parasympathetic system (rest & digest – time to dump some digestive juices into your empty stomach!) which can then result in gas, bloating & nausea.

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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.

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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. Yes, talk to us like you would a 5 year old. Direct, detailed, clear, concise language, with compassion and kindness. And if that’s not how you communicate with a 5 year old, I don’t really want to be communicating with you anyway.
  • 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 can result in presenting as ASD
  • 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:

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helped someone else like I was

I think the start of things for me was looking into the Fragile X research being done at UC Davis and stumbling across a blog post that mentioned both Fragile X and Ehlers-Danlos Syndrome.

I searched Ehlers-Danlos to find out what that was…. and it was as transformative to my life and discovering Elain Aron’s work on Highly Sensitive Persons (HSPs).

I post so that someone else might be helped the way I was to pay it forward.

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Tongue-Tie

Great Blog post so I don’t have to reinvent the wheel:

Tongue Tie Release Terrors and Triumphs: Releasing the Child of A Myofunctional Therapist

This is the document I put together to convince my spouse to go along with the release – after I had already had mine done. https://docs.google.com/spreadsheets/d/1Zk2vooxxK_8Zqszn64r0F5Y9qw8Pzq4Ye4IjSwy3Mr0/edit?usp=sharing

The Kathy from the Breathe Institute (SO GOOD with kids!) spent five minutes at the start of zoom checking out the kiddo’s function/status, then spent the rest of the time working with me to teach or develop new activities to achieve the goal for the coming week. Then it was on me to do the activities (Kathy also sent documents I could use to track) – rinse and repeat until ready for the surgery.

Kiddo has had multiple fillings and other than the burny stink from the laser and the nasty tasting topical anesthetic, it was way easier than any filling. The kiddo definitely either had more pain or lower tolerance for the exercises after. The first few days were spent just holding the boundary of not doing anything else until exercises were done. By the end kiddo was doing some of them with just supervision. The worst was the one where my nails kept poking, so I’d suggest two of those fingertip baby/pet toothbrushes.

UARS or Sleep Disordered Breathing & bed wetting: Upper Airway Resistance Syndrome (UARS) (lucohybridosa.com)

Breathe Institute: Lecture Files from The Breathe Institute (Dr. Zaghi)

Log March 11, 2022:

I found out in January 2021 that I had a posterior tongue tie: https://www.youtube.com/watch?v=VilJPFTwNyk

I had it revised April 2021. It was life transforming.

Quick metrics:

  • Before – 15 minutes of household tasks meant stabbing back pain forced me to stop (some level of pain was there from the start)
  • After – 4 hours before the pain started
  • Before – required chiropractor every 2 weeks minimum for maintenance (Ehlers-Danlos)
  • After – 4 to 6 weeks between chiropractic adjustments
  • Before – wore multiple braces daily, all day
  • After – wear braces occasionally as needed for recovery or for prevention for specific tasks
  • Before – my zero on the pain scale was probably actually at 1 or 2, and usually I had hot spots that were 3 to 8

Update 10/28/2022

Since this came up at one of our discussion groups, I thought I’d fill in the curious.
While researching tongue tie stuff for the kiddo, I found out that I might have tongue tie. We were referred to the Breathe Institute. https://www.thebreatheinstitute.com/

I did a consult and it turned out that I had more severe of a tongue tie than I realized – the floor of my mouth was stretching up to allow more movement. I think this link skips to the part of the video he addresses that: https://www.youtube.com/watch?v=G9GrUw7YJD0&t=2106s

I also found info on the fascia system and Tim King was able to tell me just from talking on the phone that my “migraines” were actually cervicogenic headaches. Once I dug more into the fascia stuff I decided I needed to try the release to see if it helped with those and my rib pain. https://www.youtube.com/watch?v=w3SPxFR7wcA

I did a month of exercises and stretches to prep for surgery – mostly practice for after surgery and isolation/awareness/control exercises for my tongue. Surgery itself was super easy and fast, I think applying lidocaine (I need more than most due to the Ehlers-Danlos Syndrome) took as long as the surgery. I parked at 10:37 in Walnut Creek (he comes up regularly) and was back in the car at 11:07.

We did laser and glue due to my concerns about scissors and sutures with the EDS and the only bad part was the burning smell. I only did one day of ibuprofen and then ice pack under the chin the second day.

As soon as I stood up out of the chair my posture was drastically improved and my ability to tip my head back with chin up and to twist as well. I haven’t had rib pain since the surgery even with only having one adjustment a month (instead of at least 2) and my cervicogenic headaches went from 3 solid days at least twice a month to a few hours in the evening and the next morning prior to my period (when I usually get one).