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POTS update

I got my eds and pots officially diagnosed in 2011 before we started trying to get pregnant. I self diagnosed between 2007-2010.

New things I’ve figured out about POTS.

I realized 7/2024 that many of relationship conflicts were had standing in the kitchen. With my POTS, moving around doing chores and being upright is enough to get my heartrate up to 100. Then add conflict on top. Instant flooding/dysregulation.

Showering is difficult between POTS risk and ASD sensory/transition challenges.

  • Treatments:
  • Pregnancy info: Pregnancy & EDS, pregnancy update 2
  • Comorbidities
  • Misdiagnosis: Fibromyalgia, Chronic Fatigue – is it POTS?
  • POTS explains my temperature intolerances, fainting, dizziness, vertigo, fatigue, tunnel vision, chemical sensitivities, etc.
  • Upset stomach can be a symptom of:
    • Anxiety
    • Hunger (I try eating, if it helps, it was hunger – I like dried apricots for this test)
    • Thirst
    • Gas
    • MCAS
    • POTS (sit down) – here’s why: Syncope can trigger your sympathetic nervous system (brain sends the signal to !panic! it 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.
  • Older post on POTS

Gas is one of the first symptoms of POTS I get. What I call Sparkle Fun Dots (usually upon standing, moving upright) is the next and more advanced. Tunnel or blacked out vision means grab something and lean or sit immediately. If it doesn’t clear quickly and you’re leaning, SIT! It’s better to sit in the grocery isle or shower than to pass out and hit your head.

Challenges you may share with me:

My autonomic nervous system doesn’t function properly (POTS), so my sympathetic nervous system has to compensate – I tense muscles to modify blood flow.

My tendons and ligaments don’t function properly, so my muscles have to compensate.

The constant muscle tension also activates the sympathetic nervous system.

So even without my cPTSD, I’m constantly existing with my sympathetic nervous activated.

My goal is reduced activation.

Laying down can allow me to activate the parasympathetic system, but too much time laying down leads to deconditioning, which aggravates the POTS, so it’s a self reinforcing loop.

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Memory Modalities

I’ve been figuring out some things about SDAM (Severely Deficient Autobiographical Memory) and some stuff about the threshold effect.

A trick I’ve started using for the threshold effect is saying out loud the thing I’m going to do/get as I cross the threshold. So not only am I thinking it, I’m also embodying it by saying it out loud and then I’m hearing it – usually in the new context.

I think that’s all the threshold effect really is, it’s a context switch. In the bathroom you remember bathroom related things, you step out and your brain no longer has that context trigger and loses access to those thoughts.

I doubt I’m the only one who has gone back and forth multiple times forgetting, going back, remembering, rinse, repeat, and again.

The other new term I’ve come across is glimmers – which is being used for when the memories being triggered are pleasurable instead of painful.

My couples therapist asked something along the lines of how do I feel loved or remember feeling loved. With the SDAM I can’t recall/remember/re-experience the feeling but I can recall/know/have the knowledge that I’ve experienced it.

I thought about it more and realized that the only time I can remember what getting married felt like was at someone else’s wedding. I would feel suffused with love and cry at every wedding.

So I can only remember in context.

I can’t imagine going to the beach or some happy place like many people do – I have to actually go and let the experience wash over me.

Often I have to force myself to go do things, but then once I do and I’m there, I’m so glad that I did. Because I can’t remember how good it felt in the past until I’m there doing it again.

I’m realizing I would use books and movies to control the context I was experiencing growing up. When I needed to cry I would re-watch Somersby. I couldn’t just let myself grieve, I had to trigger that release.

I’m working on rewiring some associations like the shower is for crying (I play a gratitude playlist now), the car and kitchen are for arguing. Changing cars might have already helped with that. Kitchen is trickier, mostly I just still avoid it.

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Parenting

See other parenting related posts.

Some more recent realizations and resources I’ve found:

I’m sure everyone hears the advice about sleeping when the baby sleeps, and that absolutely won’t be possible for everyone. The part no one mentions is that if you can’t sleep because you can’t fall asleep – ask your doctor about post partum anxiety.

If you can’t sleep because things need to get done – if at all possible ask for or accept more help – let someone do the dishes while you nap with the baby. Let the laundry pile up more than you like. Eat using compostable plates and utensils. Whatever you have to do to survive.

The terrible sleep deprivation does eventually get better.

Does parenting get easier? Not really. Mostly it just keeps changing. But specific things often get better but then get replaced with something else.

When the baby is eating (nursing/bottle) – look at them and talk to them about it. Explain that they’re hungry and eating is what you do to fuel your body. Tell them how much you love them and how amazing they are.

You’re teaching them to understand and respect their body cues. That mealtime is a great time to converse and connect. That eye contact helps you connect. That they are interesting and worth your attention.

Speaking as an autistic mom with an autistic kid, these are skills neither of us learned and while we have ways of compensating and coping, our lives would be easier if we could consistently notice when we’re hungry.

I think I mostly read and texted while nursing until the kid wouldn’t nurse during the day anymore because everything else was more interesting.

I don’t think we played much patty-cake (more eye contact, connection, cross body coordination and motor skills) or peekaboo (teaching them to tolerate/enjoy surprise, patience, trust that people come back) either.

Narrate everything you do including the why.

Elimination communication is worth the effort to be done with diapers asap. Even if you only do it part time.

Sign language is also worth the effort to avoid the screaming frustration of knowing what they want but not being able to say it. Just learn one a day or a week, just search for a new word to learn. It’s amazing the difference it can make knowing a few signs like: milk, more, done, potty/toilet, home, go. Especially things that you might not run through at first (basics like food/water/potty/sleep) such as play, book, ball, colors, want, hurts.

Everything else, just keep trying things until you find what works for you, your child and your family. Keep reaching out and asking for help and support. You and they are worth it.

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Perspectives

Rockbiter vs the little guys (bat and snail riders) from the never-ending story (movie).

When they first meet and Rockbiter starts eating and dropping rock “crumbs” the little guys yell and dodge.

No one is doing anything bad or trying to be mean, they’re all just trying to live.

I keep thinking of it as a metaphor for certain conflicts. The first time the conflict happens is easy to forgive.

If it happens again, the little guys either have to assume Rockbiter didn’t hear them or isn’t capable of being careful/considerate while eating.

They can choose to keep risking their lives (not a good choice, but it’s an option), to try a different way to communicate their safety needs to Rockbiter or they can avoid Rockbiter.

If they confirm that Rockbiter heard and understood, then either he can agree to change his behavior or be direct that he won’t be able to.

Which goes back to either Rockbiter changes his behavior or the little guys need to avoid Rockbiter.

None of these choices are wrong or bad. There may be unpleasant consequences of the choices like the little guys getting hurt or Rockbiter ending up lonely.

The problem occurs when the little guys don’t realize that it’s ok to choose to avoid Rockbiter. Instead they may end up feeling trapped and attacked.

Or if Rockbiter didn’t hear and doesn’t understand why the little guys are avoiding him. So he doesn’t realize that he can try to change his behavior if he wants a different outcome. Whether that means trying to learn to eat without dropping things, or moving away to have more space to eat or just warning people when he is about to eat. He might feel confused, hurt, excluded and rejected and like he has no control over how others are responding to him.

So it comes down to directly teaching active listening.

You have to listen, paraphrase what you heard/understood and then confirm if that was correct.

And then you get your turn to share and be heard.

Otherwise you can get into all sorts of conflicts when the problem is just not hearing or a misunderstanding.

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Song snippets

These were in my head after choir last night, so I tried something new. I sang them into my recorder last night instead of journally and wrote them up today.

-indicates the title

-Rumination

When you have a thought

That you just don’t want

And even your dreams it tries to haunt

Just gotta know

to let it go

It’s rumination, yeah let it go

It’s just a thought, it doesn’t have to be

hanging around, cluttering up me

Go away

Hear me say

I don’t want to think you anymore today

-Jot it down

When you have a thought, can’t let it go

Write it down and it will go

jot it out

just put it down

Put some weight down in the ground

Ground yourself

and you will see

That you will start to feel free

Just put it down and let it go

-Stuck Thoughts

Got a thought running through my head

worrying about the thing I said

don’t know why I can’t let it go

Ruminating, oh no

So when it’s time to put it down

Get some paper and write it down

Just jot it down, type it up

Draw it out, you know what?

Find a way to set it free

and let it go away from thee/me

-It’s Just a Thought

It’s just a thought

Reality is what it’s not

Just a thought

I can let go

Or make it real if I want it so

Just a thought

Just a thought

That’s all it is

It’s just a thought

Reality is what it’s not

-Disconnected

What do I feel?

I don’t know how to make it real

Somehow disconnected

Don’t know what

-Gotta Reconnect

When I’m feeling so disconnected

I just gotta reconnect

Gotta think about what the heck my body needs

My body wants

What sensation my body haunts

That’s all I gotta find out

Got reconnect without a doubt

Gotta reconnect, gotta reconnect

Yeah just gotta reconnect

Checking in

Head and neck

Shoulders and chest and back and thighs

Knees and elbows and ankles

Take a big, big sigh

Send it through, up and back

Figure out what your body needs

Checking in just to see

Do I need a drink? Do I need to eat?

Do I need to pee or take a nap?

Do I wanna hug or just to cry?

All I gotta do is just sigh.

<big breath in, sigh it out>

-Pain Song

Hello pain my old friend

I see you’re back again

What are you trying to tell me?

Practicing listening, you’ll see

Do I need a rest?

Do I need to eat?

Do I need something to feel complete?

Hello pain, listening

Tell me your story

I’ll hear you sing

Sing your song

Sung through me

Hello pain

<breathe>

-Finding a Way Past Fear

My pain tells me

who to charm

It tries to keep me safe from harm

Fight, flight, freeze and fawn

Pain helps me know which one

I gotta use to defend myself

cause I can’t rely on anybody else

wait, oh no

don’t think that’s right

I don’t think I’m alone this night

Not the only one here

Not the only one to hide in fear

We’re not alone

Just gotta breathe

Remember that we are a we

Someone else is out there too

Feeling the same way as you

Just gotta hang on

Hold on tight

Eventually it’ll turn out right

If you just keep looking

and searching on

Reaching out

For that helping arm

holding out the helping hand

that is what

is in the plan

Just gotta search and reach it out

grasp that hand so they’ll pull you out

of the stark pit that’s full of fear

and pain and sorrow and not much cheer

You just gotta go

Keep on

eventually, it’ll come

-Titrate Your Pain

You got to titrate your pain

When you’re caught in the rain

And you just don’t know when

you’ll feel pleasure again

Just let it come out, bit by bit

Just enough so you’re not overwhelmed by it.

That’s what it takes to let it go

To let your tears safely flow

Just gotta titrate it out

Bit by bit

That’s how you can let go of it

-I’ll Be Alright

Gotta be free

Gotta move on

Gotta let it

Out in a song

Gotta let go

Gotta just know

I’ll be all right

If I say so

I’ll be all right

Yes, I’ll be all right

Because I say so

I’ll be all right

-Ask For Help

Ask for help

People don’t know that it’s hard for me

To ask for help

No one can read your mind

So ask for help

It’s okay to let people know

You need some help

So just ask for help

That’s how you help yourself

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Relationships

Everyone gets disregulated sometimes, and when we’re in a state of disregulation we are more likely to trigger old responses from Trauma or trauma.

When we’re in that state generally people can respond in one of three ways:

A supportive re-regulating way.

An unsupportive way that either doesn’t help or even worsens our disregulation.

They can get triggered too.

In a healthy relationship mostly the first happens.

The second can be dealt with by teaching new skills/responses.

The third one is the hardest to deal with. Both people need their own therapist and a couples therapist is needed to help re-regulate both during interactions. It’s a lot of painful work and most often is easier to end the relationship and find a less challenging pairing.

For those recovering from anything really, if someone doesn’t already have their own therapist/recovery group, that’s a huge red flag.

The two choices are they don’t need one, or they need one and don’t recognize it.

If they go to therapy for you instead of for themselves, that doesn’t really work.

The likelihood that they don’t need therapy is pretty slim, especially since we tend to be drawn to our counterparts or people who feel familiar. And if they are drawn to us, it’s probably the same for them.

So it’s pretty safe to assume that if they aren’t doing recovery work, that’s a huge red flag and we should run the other way and that we’re not passing up the magical unicorn that doesn’t need to do recovery work and is still interested in being our partner.

For more info read How to Stop Losing Your Sh*t With Your Kids or watch some School of Life or Heidi Priebe YouTube videos on trauma & relationships.

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Only the good die young

I wonder how old that saying is?

How long have we known what science only recently figured out?

Here’s how it works: stress hormones suppress the immune system.

The immune system doesn’t just fight off disease. It also cleans up dead, dying, misbehaving and malfunctioning cells.

That means a properly functioning immune system prevents cancer and autoimmune diseases.

There are three ways of dealing with stress.

  • The healthy way.
  • Explode outward.
  • Turn it inward.

The third one results in people pleasers who are too nice for their own good – literally.

The first two both release stress. The third lives with chronic low levels of stress suppressing their immune system.

In Gabor Mate’s book The Myth of Normal it talks about nurses accurately predicting ALS diagnosis based on how nice the person was.

Folks with autoimmune issues talk about “flares” when symptoms flare up after over exertion. The interesting thing is that it happens after – the increased stress during over exertion temporarily suppresses symptoms. When the stress and accompanying hormones decrease and the immune system ramps back up, either ignored issues get addressed or symptoms that were there before but you had acclimated to have to be readjusted to.

So either problems piled up and your immune system has to pull out the big guns or the temporary relief from symptoms reminds you how bad things actually always are and a “flare” is just how long it takes you to readjust/dissociate again.

I like to use the metaphor of shoes sometimes. You put them on in the morning and they fit fine. You walk and stand all day. Maybe they’re a little tired. You finally take off your shoes and it’s such a relief! If you have to put them back on for some reason, now they’re too tight and it really hurts. The thing is, they were too tight and painful before you took them off, you just didn’t notice because you slowly adjusted to it. Even if your feet suddenly swelled – that’s your immune system kicking in and trying to repair things.

I’ve been told that you can actually lose about 70% function in some cases before you start feeling pain.

Human bodies are amazingly resilient and redundant.

Books

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Acceptance

Accepting that toxic love is not love to hold onto is where I found relief from pain.

It acceptance feels like being bathed in balm, so peaceful and calm and serene to no longer be clinging tight to pain. Letting go is terrifying, but the freefall of freedom and uncertainty can also feel like flying with the wind brushing past you.

Buddhism books:

ACT – Acceptance & Commitment Therapy: https://www.psychologytoday.com/us/therapy-types/acceptance-and-commitment-therapy

The Serenity Prayer: https://en.wikipedia.org/wiki/Serenity_Prayer

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Death by a thousand cuts

Trigger warning – In case the title isn’t warning enough.

Originally it was a form of torture.

It’s now also a metaphor for emotional pain.

Similar to: the straw that broke the camel’s back.

I keep coming up with different metaphors and descriptions.

One was that I’ve been walking around my whole life with my arms across my stomach holding my guts in and hiding my wounds. And I recently realized it’s not my fault I have this deep, disgusting, excruciating wound and I don’t have to protect others from knowing it exists. So now I’m walking around and my guts are hanging out (see my post on CSA – The Hidden Epidemic) but my back is straight and my arms are free.

Other times I feel like I’m walking around with all my skin flayed off and just oozing a seeping layer of blood. If people could see it, they’d ask “how are you alive?!” and “why are you not getting care and treatment?!”

I was thinking about how I’d much rather be stabbed through the heart with a sword than suffer death by a thousand cuts. Having experienced both emotionally in relationships, the latter is way worse.

It starts with a few cuts that flay off some skin. No more painful than a bad papercut or a rug burn. But they continue faster than the old ones can heal, but slow enough you can adjust to them and learn to tolerate this new baseline of pain. Especially if you’ve grown up with a massive wound overshadowing all others. Until one day you suddenly realize you’ve been flayed alive, have no skin left and have been living in pain so long you can’t recall what not being in pain was like. And then it continues only now since your skin is gone, flesh is being cut away. Until again you realize you’re one seeping walking wound head to toe. And suddenly now that you realize it, you can’t bear it anymore and scream out or collapse. And finally someone notices – but you’ll die if you don’t stop the bleeding, so they have to cauterize every inch of you. And no anesthetic exists or works. And so you have to suffer even worse pain for the sake of survival. And you have to hold still and be quiet while they cauterize the wounds or you’ll disrupt them and the scarring and residual pain will be worse.

And then when someone bumps into you and you cry because it’s just that bit too much to tolerate and they get mad that you’re overreacting or that you got blood on their shirt where they bumped you…. And you know they don’t understand. But you’re just trying to survive and don’t have the energy to educate them.

The way you survive pain like this is focusing on one step at a time, or the goal. But sometimes you need to pause and remember the whole.

Geez. No wonder I’m so tired. I guess self compassion requires a little introspection. I was forgetting my self. And the whole is overwhelming, sometimes I need to put that awareness away to function. But putting away isn’t the same as denying it exists, which is what I tried to do for a long time.

I’m sorry self, I embrace and accept you as you are.

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Scheduling grief

I didn’t think to share this on my own, one of my wonderful friends suggested it.

I was reading a book in a waiting room and got triggered and was about to break down crying.

I took a deep breath and asked myself if I could wait until a better time. I thought through the day and figured out a time when I’d have more privacy and promised myself I would come back to this and allow myself to properly grieve and that I would do it today and not forget about it or stuff it down trying to ignore it. It was just a temporary pause for a better time.

And it worked, I was calm the rest of the day and when I sat down outside the library before my next appointment when I had about 20 minutes to spare, I asked myself what had triggered that moment originally. I remembered and was right back in it but this time I just curled over my knees and cried and let it out. I think I only cried for 5 or 10 minutes so I even had time to recover afterwards before walking to my appointment.

I’m sure this trick won’t always work, and it requires you trusting yourself (or your systems – like to do lists or alarms).

And when I say I ask myself, it’s more like I ask my inner parts. Something like “Hey gang, can we hold onto this until later today? I promise I won’t forget and just stuff it down.” That’ll be fore another post on IFS – Internal Family Systems.