on the pain train

Common psychotropic medications that may impair the heat response:

Trade name - Generic name

Abilify, Aristada - aripiprazole Asendin - amoxapine Artane - trihexyphenidyl Aventyl, Pamelor - nortriptyline Benadryl - diphenhydramine Celexa - citalopram Clozaril, Fazaclo, Versacloz - clozapine Cogentin - benztropine Cymbalta - duloxetine Desyrel, Oleptro - trazodone Elavil - amitriptyline Effexor - venlafaxine Eskalith, Lithobid, Lithonate - lithium Fanapt - iloperidone Fetzima - levomilnacipran Geodon - ziprasidone Haldol - haloperidol Invega - paliperidone Lexapro - escitalopram Loxitane - loxapine Latuda - lurasidone Navane - thiothixene Norpramin - desipramine Nuplazid - pimavanserin Paxil - paroxetine Phenergan - promethazine Pristiq - desvenlafaxine Prolixin - fluphenazine Prozac - fluoxetine Rexulti - brexpiprazole Risperdal - risperidone Saphris - asenapine Seroquel - quetiapine Sinequan, Silenor - doxepin Stelazine - trifluoperazine Thorazine - chlorpromazine Tofranil - imipramine Trilafon - perphenazine Trintellix - vortioxetine Wellbutrin, Zyban - bupropion Viibryd - vilazodone Vraylar - cariprazine Zoloft - sertraline Zyprexa - olanzapine

@ People with EDS and/or dysautonomia

I found a webinar on EDS and psychiatric misdiagnoses and tl;dr the part I'm posting about here is regarding how a lot of us are misdiagnosed with a variety of psychiatric diagnoses (mainly but not only anxiety disorders) because part of our symptoms is high adrenaline but CONSTANTLY and so shrinks mistake that as us having a psychiatric condition related to anxiety or difficulty focusing.

Sleep is one of our biggest issues. From tossing and turning because of pain, to having adrenaline rushes all night, sometimes even the strongest sleep medicines don’t knock us out. You’ll always know whom to message at 3 am.

Dr. Alan Pocinki noticed we get knocked out of sleep cycles by our racing hearts. Sometimes beta blockers and other adrenaline lowering meds can really help! Here is his talk on sleep issues and EDS: https://vimeo.com/101947622

This would explain why sedatives and anxiolythics are some of the few meds that make me have repairing deep sleep while everything else either doesn't work or only works by shutting me down completely but as a result the quality of sleep I get is terrible.

They said in the webinar that it's a vicious cycle. When someone doesn't get enough sleep at night, the next morning our adrenaline levels are higher in order to give us the extra boost to go through the day, but then when night comes we can't sleep again because we're high on a natural stimulant. But then the next day, since we again didn't get enough sleep, we keep that increased level of adrenaline going, then we can't sleep again, and the cycle keeps perpetuating itself.

There's the fact too that adrenaline makes you notice pain LESS and we're in constant pain, so in my not professional opinion, that sounds like a reasonable incentive for our bodies to increase adrenaline levels.

It would explain the high sensitivity to stimulants that a lot of us have, since, again, we're basically already high on a self-produced stimulant 24/7 and if you add a cup of coffee to that you might as well be on Adderall.

If you don't have EDS or chronic pain but do have dysautnomia, adrenaline levels are controlled by the autonomic nervous system regardless, so this can still be a possibility for you.

That means too that after some time of this ongoing stress, we become absolutely depleted of energy reserves that we're unable to rebuild, and that makes us avoid activities that require energy or focus.

Dr. Alan Pocinki starts talking about it at 22:40 here:

The "suddenly feeling better" phase is the adrenaline kicking in to give you that extra boost, the insomnia is the adrenaline keeping you from sleep and the feeling bad at night is your body being DONE but even weaker than it was when you woke up.

An experience by a 33 years old patient from the video I linked above is:

The sheer number of physicians who now know what MCAS is. 

Just over a year ago I could say “MCAS” or “mast cell dysfunction” and most doctors/nurses would either blink at me and ask “what’s that?” or roll their eyes because it’s another one of those “yuppy” illnesses that they suspect everyone is making up because surely the body can’t do that. Surely your mast cells which regulate nearly every facet of your immune system can’t just go rogue and start killing you. Right? I mean… what… what could cause that? A virus? Haha. Yeah, right… Oh.

And now I can mention it off handedly at a pap smear appointment and the OB/GYN looks at me with profound sympathy and asks “did you get that from Covid too?” 

My PCP who was always compassionate but didn’t really know much about it beyond “it’s a thing that exists” now knows what a cytokine storm is and winces with sympathy when we talk about my lungs attacking themselves.

My neurologist sympathetically clucks her tongue and sends me follow up emails about the new research coming out about the effect of mast cell dysregulation in migraines. That this research is frantically being churned out because of the number of people getting sick with covid and developing debilitating migraines in the aftermath is politely glossed over.

Every time I’ve walked into the ER since the pandemic started and uttered the words “mast cell activation syndrome” everyone knows what it means. Everyone. I mean, fuck. I had blood drawn, and I reacted to the needle, and the phlebotomist asked me if I normally break out from hives from needles, or if I started experiencing mast cell problems since getting covid.

And no. It wasn’t covid that gave me this. It wasn’t covid that gave me POTS either. Something else did. Something on par with an illness like covid that ripped my body to shreds while countless doctors looked the other way and tutted under their breath about anxiety and “if you hear hooves, look for horses not zebras.” And yes, I’m bitter and so full of rage that it took a global pandemic for illnesses like MCAS, POTS, ME/CFS and Fibro, etc. to finally gain research funding and recognition. I’m so fucking gutted and angry at the state of the world because more people are suffering and I hate it, I hate all of it. And I hate that I’m also relieved because after years of battling for help I can say the words “I have a mast cell dysfunction disorder” and the attending physician replies “oh, you know, I’ve heard of that…”

hearing aids: $4000-6000 (need 2 so costs are higher, need more advanced tech than 'basic' hearing aids. not typically covered by any insurance. need to be replaced every few years)

wheelchair: $2000-4000 (on avg should be replaced every 5 years)

wheelchair maintenance: $30-100

injected medicine: $5k/injection, every 2 weeks

epipen: $300-400

regular medicine costs: $80/mo currently (without insurance: $600/mo)

appointment copays: $10-80

appointment cost if no ins/out of network: $150-300

number of appts last month: 16

TOTAL if i got all of this at once and had a month's worth of appts/injections: $21,190

SSI maximum payout: $780/mo

the SSI restoration act increases SSI maximum pay to the federal poverty level (a 31% increase--yes disabled people on SSI are 31% or more below federal poverty level). even though it's still not nearly enough, please call or email your local gov to at least get disabled people up to the federal poverty level

Nurse: So do you have an arm preference, or…?

between 10-50% (some studies say 30-50%, huge range) of people who get covid 19 will have PACS and/or chronic symptoms from covid-19. these are only estimates and many patients going on a year or more. these are chronic conditions without cures even from very mild covid-19 cases. the diagnosis of autonomic and autoimmune conditions took years prior to the pandemic and more accurate numbers will be a while

many people notice start of symptoms ~4 weeks after infection

there is autonomic involvement in most cases of PACS

other viral conditions are associated with developing autonomic dysfunction such as sars and mers. POTS often has a viral trigger regardless of what it is

covid 19 involves loss of brain matter

age range is all across the board

the most common autonomic diagnosis is POTS

other common diagnoses include orthostatic intolerance, gastrointestinal disturbance

even with extremely mild covid-19 infection, long term symptoms and chronic illness are common. and by long term, 6+ months. many people stop being able to work at all

brain fog and memory problems are huge, potentially related to the loss of brain matter

there is widespread tissue damage throughout the body from covid-19

there is no diagnostic criteria for PACS yet

statistics estimate there will be over 10 million people in the US with covid-19 related autonomic dysfunction

all doctors should get autonomic training

if you have dysautonomia and develop covid you will very likely get worse, they do not cancel out. get vaccinated

there is an autoimmune aspect to PACS as well as to POTS, still being worked out. covid-19 may cause an autoimmune storm so to speak

a diagnosis of POTS currently requires 6+ months of symptoms, so there will be many more diagnoses as time goes on

there are not enough doctors to care for this influx of autonomic patients

When I was a little girl growing up in Oklahoma, I was a tomboy. I played outside constantly no matter the season and was excited to be so close to nature. I did this in spite of frequent sprains, joint dislocations and abnormally bad “growing pains” starting at age three.

To me, those things were normal. I never thought to ask anyone about their own experiences, because my parents never made any fuss. Why should I?

If you see a doctor, they’ll take into account that you have the other disorders, and look for the symptoms that only ADHD has to decide if you have it. But, because of this ask, I decided to make a handy Venn Diagram to show which symptoms overlap, and which are specific to one of the disorders:

Like my body is so used to pain that it literally doesn’t even register unless it hits a solid 6 or so on the pain scale, but below that, even if I don’t notice the pain per se, there are other signs. General agitation, clenching and unclenching my hands, moodiness, refusal to speak–and today, what felt like frantic boredom coupled with unhappiness. I was flipping between possible distractions desperately, growing more and more anxious when nothing new popped up in my feeds, until I finally realized I was desperately looking for distraction from my pain, not because I was bored. 

The second I realized that I calmed down.