POTS – dysautonomia vs ME

What is Dysautonomia?

By Missy M / June 10, 2021 May 14, 2022 / 1 Comment / Blood Pressure, Conditions, Doctors, Dysautonomia, Fainting, GI, Pain, POTS, Tachycardia, Vertigo / 6 minutes of reading

Jun 10 2021May 14, 2022

Dysautonomia is a terrifying array of symptoms which can affect every system in the body, including blood-pressure, heart-rate, breathing, sleep, digestion, balance, vision, memory, temperature, pain centers, emotions, and more. In short, dysautonomia prevents the body from operating as designed.

DEFINITIONS

Breaking down the word DYS–AUTO–NOMIA:

dys – from the Greek, meaning bad, abnormal, imperfect

auto – from the Greek, “autos,” meaning self

nomia – from the Greek, “nomos,” meaning law, government, system, regulation

A nominal definition of the term “dysautonomia” is that the body’s ability to regulate itself has become abnormal. The medical definition is that the Autonomic Nervous System [ANS] has become dysfunctional.

WHAT ACTUALLY HAPPENS?

The unconscious management of & between the two halves of the ANS, the Sympathetic Nervous System [SNS] & the Parasympathetic Nervous System [PNS] has broken down. The systems are out of sync individually & with each other.

(Click here for a beautifully illustrated, easy to understand overview of the two major players of the Autonomic Nervous System.)

As this discord causes↓blood-pressure to fall↓the↑heart-rate rises↑to compensate, resulting in fainting. There can be an inability to perspire, vertigo, nausea, frequent UTIs, headaches akin to spinal fluid leak headaches, brain fog, painful fibromyalgia, & inappropriate anxiety that could eventually turn into emotional instability. If not arrested by appropriate treatment the process will continue wreaking havoc. It may start slowing motility in the stomach causing gastroparesis, which can lead to extreme weight loss & malnutrition.

Further problems arise with the kidneys. Unable to hold onto sodium, the sodium/fluid ratio becomes unbalanced & blood volume is decreased (except during pregnancy, a time when many women with dysautonomia feel much better). As a result of the imbalance blood-pressure can drop precipitously on change of position, most commonly during the simple act of standing. Instead of rising to where it’s now needed, the heart & the brain, the blood remains pooled in the legs. What happens automatically for everyone else doesn’t happen at all for dysautonomia patients. As this failure begins to be discerned one gets down to the floor fast or one will faint & fall to the floor. It happens to men & women both.

No matter how much fluid is consumed, including Gatorade & other electrolyte drinks, it cannot fully compensate for the imbalance. The drinks help but are not a cure. Proper treatment is what’s needed or the outlook is grim. And because there are different forms of dysautonomia treatment is not one size fits all. Some folks with dysautonomia have high blood-pressure, so Gatorade would NOT be good for them.

HOW TO NOT PASS OUT (as per Dr. M)
While I slowly titrate my way up to the therapeutic dose of a new medication to treat the dysautonomia (off-label use), I’ve had to go back on Gatorade. It’s helping a lot. Although this site does not give medical advice, I will share one piece of common sense advice that came to me from the doctor who saved my life & my father’s life, Dr. M. This advice is for those of us with low blood-pressure/POTS type dysautonomia. Dr. M advised Dad & me never to stand still if we were waiting on a line or looking at something on a shelf in a store. He said, “Make sure you jiggle your legs, or keep alternating your weight from one leg to the other. It gets the blood moving & can give you more time to do what you’re doing.” Dr. M also had me wear anti-embolism stockings. Dad was already wearing compression hose due to Peripheral Artery Disease. Even so, if we were out somewhere & forced to stand for awhile – like waiting on line at the doctor’s office to sign in – I had to remind my father ALL THE TIME: “Dad! Jiggle your legs!” He’d roll his eyes but start jiggling – because he knew that was better than suddenly “getting the feeling” & passing out. So people, NEVER stand still. JIGGLE YOUR LEGS!

BEDTIME & DYSAUTONOMIA

Bedtime is a wakeful nightmare for most dysautonomia patients. The PNS is supposed to be taking the hand-off, as it were, from the SNS. Unfortunately, the parasympathetic system cannot overcome the always on sympathetic system, thereby preventing sleep, which leads to a myriad of other difficulties. The SNS is constantly sending its owner adrenaline to prepare for fight or flight, neither of which can he do since he’s either too exhausted to move or already passed out.

SHODDY TREATMENT OF PATIENTS

Another aspect of this condition bears mentioning. Undiagnosed dysautonomia patients endure (sometimes for years) demoralizing experiences at doctors’ offices. The patient comes in feeling faint yet the physician detects “normal” BP at the brachial artery – the inner elbow. At this “normal” finding some doctors become dismissive of the situation, mentally marking the patient as a hypochondriac or liar.

Uninformed MDs fail to realize that in this instance the BP drop is occurring in blood vessels in the brain, bringing the patient to near or actual syncope. Most of the time low BP will reflect in the arm as well, but not all the time. For susceptible individuals being in the sun, even being next to a light, can dilate superficial vessels enough to affect a drop in blood-pressure. Showers are practically a no-no. You gotta get out fast & the water can’t be too hot. Even then you might pass out. Proximity to heat from the stove or oven can also bring on fainting, as can hot water from the sink, folding hot clothes straight from the dryer, ironing with steam & blow-drying your hair. I trust it’s understood that summer is the worst time of year for low BP dysautonomiacs. (Have I just coined a new word?)

So many medical practitioners entirely discount dysautonomia patients symptoms & offer no help. Let’s remember they’re not gods they’re people practicing what they were taught a long time ago. Scores of these people were taught nothing about dysautonomia. Unable to feign concern, a significant percentage of the untaught respond with condescension. Time to get rid of the hypochondriac & move to the next name on the list. You can hear them thinking it. How about doing a little research, doctor, to help these suffering patients? That this is still happening to people is unbelievable & unacceptable. Of course not all doctors behave this way, just too many.

HOW DYSAUTONOMIA AFFECTS FAMILIES

As challenging as it can be to “live” with this disorder (if it can be considered living), it is almost as difficult for the patient’s family to watch. They don’t know what to do, where to turn, or how to help. Imagine seeing a bus about to run over your spouse or child, while you stand there like a statue, unable to stop the bus or warn your loved one. And imagine it happening all day every day. Over time the feeling of impotence becomes corrosive to mind & soul.

Some family members manage very well. Later though you might find them crying in bathroom to release their stress. In worst case scenarios husbands or wives must assume all the duties of their now disabled spouses. It takes incredible fortitude to bear this overwhelming new life. Those without that inner strength may abandon the family, leaving devastation in their wake.

Children are perhaps the greatest casualties of dysautonomia. Mom or Dad has suddenly become incapacitated & is no longer able to care for them as before, which is bad enough. Even worse, one of the parents may have cut & run. Is it becoming clear just how dire the fallout of dysautonomia can be?

Ongoing research must continue if a cure is to be found. If you’re able please consider donating to Dysautonomia International.

Photo by Image Point Fr

Dysautonomia Is All In Your Head Dear

By Missy M / June 9, 2021 June 9, 2022 / Leave a Comment / Blood Pressure, Doctors, Dysautonomia, Fainting, POTS / 1 minute of reading

Jun 9 2021June 9, 2022

“Your blood-pressure is normal,” said the tech.

“There’s nothing wrong with you,” said the MD.

“It’s all in your head, dear,” said the nurse.

“You’re darn right it is!”the patient screamed to herself. “Don’t you understand it’s the blood-pressure in my head that’s low, not my arm!”

Haven’t most dysautonomians lived this scenario? In my case it was 20 years ago when 99% of doctors had never heard of dysautonomia, nor could they pronounce it. Even today, 2021, most don’t understand about BP in the brain causing near or actual syncopes.

It’s OK. It’s changed now because WE MADE IT CHANGE!

Is POTS Dysautonomia? Or is Dysautonomia POTS?

By Missy M / June 8, 2021 June 9, 2022 / Leave a Comment / Blood Pressure, Conditions, Dysautonomia, Fainting, POTS, Tachycardia / 4 minutes of reading

Jun 8 2021June 9, 2022

Are they different? The same? Are they two separate conditions or two names for one condition? Can you have one without the other?

WHAT’S IN A NAME?

Postural Orthostatic Tachycardia Syndrome is defined simply as: a change in posture (upward) which causes the blood pressure to drop & the heart rate to increase to a tachycardia level (over 100 beats per minute).

Dys-Auto-Nomia is defined simply as: a disorder of the autonomic nervous system.

They’re the same in that both conditions are the result of an improperly working Autonomic Nervous System. For many sufferers of these conditions the answer to this question doesn’t matter AT ALL.

POTS S T O P S YOUR LIFE | SO DOES DYSAUTONOMIA.

The goal is to get back to living. For some, mild cases can be overcome with light exercise ever increasing slowly but surely, until the exerciser strengthens him (or her) self back to the land of the living.

Throughout history, there have been people who spontaneously recovered from debilitating, even fatal conditions, with no scientific explanation for this miracle.

It’s like that “Little Rascals” episode where the sad, stuffy, uber-rich, overly-pampered boy, turned-into-an-invalid-by-his-neurotic-overbearing-mother, is instantly cured by one of the impoverished regular kids who lives nearby. The regular kids can’t understand what is wrong with the rich kid. He looks fine to them so why can’t he move his neck? Like a little chiropractor, one of the urchins takes it upon himself to twist the “invalid’s” stiff neck & boom! The psychosomatic condition disappears & the little rich kid starts playing with the little rascals. For the first time in his life he learns what it is to have fun. And mother does NOT approve! What is she to do without her raison d’être?

Of course that was a fictional example of the spontaneous “healing” of a condition that existed only in the mind of a boy’s mentally unwell mother, who brainwashed her son & everyone around them into believing her child was an invalid.

In real life, the mind-body connection does play a part in these things.

Without getting esoteric, let’s just say it becomes natural to stay sick when you’ve been sick for a long time. The illness becomes your identity – which is a very dangerous loop in which to get caught. (Been there, done that.) Your mental state is key to overcoming these conditions.

BUT IT’S REAL! IT’S A FACT! LOOK AT MY BLOODWORK! READ THE MRI REPORT!

POTS & Dysautonomia are absolutely real & measurable & diagnosable today. Medications are an aid to healing. You also have to want to be healed. When you have a burning desire to be well, medications work better & faster. This is NOT to say that those (like me for example) who were very sick for a very long time don’t really want to be well. It’s merely stating what medical science has finally come to understand: the mind cannot be separated from what happens to the body. It’s a well-established fact that stress makes any condition worse–including the common cold. If one can maintain as positive an attitude as possible during the bleakest of times, conditions like POTS & Dysautonomia need not be prisons forever. In conjunction with the right doctor, the proper diagnosis, and appropriate medications, the mind can assist the body to get better. And so can prayer.

“As a man thinketh in his heart, so is he.” Proverbs, Ch 23: 7.

James Allen wrote As A Man Thinketh in 1902. The proverb is as true today as it was in Old Testament Times and as it was in 1902. You are what you think; so think & speak very very carefully.

All that we achieve and all that we fail to achieve is the direct result of our own thoughts. Self-control is strength. Right thought is mastery. Calmness is power. ― James Allen, As a Man Thinketh

Unless you have achieved a high level of self-mastery, POTS and/or Dysautonomia will be dams blocking the flow of your life. We have bodies which operate according to the laws God set in place. At a bare minimum we must have water, food, sleep & sunlight to maintain homeostasis. When something disrupts the autonomic nervous system, when blood-pressure starts falling & the heart-rate starts rising, physiological consequences occur. Some dysautonomia patients have high blood-pressure, which requires quite different treatment. This is not the case with POTS. At least there are doctors now who finally understand & know how to treat these conditions.

While mind over matter is as real as POTS & Dysautonomia, unless your mind and spirit are cemented upon these lines, holding firm belief & a burning desire to get well, mind over matter won’t work. So don’t throw out your pills. Don’t kick a good doctor to the curb. Just realize that YOU are the protagonist in your own story. If you can consistently control your thoughts, you can assist yourself to get better.

The bottom line is: NEVER EVER EVER GIVE UP!

Tilt Table Test Terrors!

By Missy M / June 7, 2021 June 9, 2022 / 1 Comment / Blood Pressure, Doctors, Dysautonomia, POTS, Tachycardia, Testing / 3 minutes of reading

Jun 7 2021June 9, 2022

In a tilt table test, you lie on a table that adjusts your body position from horizontal to vertical to simulate standing up. The test can tell your doctor if faulty brain signals are causing low blood pressure.

Does every fainter need to take a tilt table test? That depends.

MY FATHER

Sometime in his mid-50s Dad was diagnosed with high blood-pressure. (We’re talking 1970s here.) For a few years, they said it was “white coat syndrome.” No, it was high blood-pressure. (He wasn’t nervous around doctors. His father & older brother had high BP too.) But for quite some time “white coat syndrome” was what the doctors swore he had. Finally, FINALLY, they decided he actually did have high BP & put him (I think) on a beta-blocker. Right before he turned 60 he started passing out on a regular basis. (Part of the problem was the medication. Because of dysautonomia it was dropping his BP too low. But we didn’t know any of this back then.) It was horrifying to witness him collapse. The first time he was walking to the bathroom. BOOM! Half of him was lying on the tile floor, half of him in the hallway. My sister was in nursing school & did all the things she was supposed to do. Dad came around & wanted nothing to do with going to a hospital.

LATENT DYSAUTONOMIA

The passing out became chronic. And every time it happened the cardiologist gave him a Tilt Table Test. It was the defacto procedure after every syncope. The problem is the test was kept going until he passed all the way out. EVERY TIME. After the third or fourth repeat of this experiment there was no medical need to do it that way. The reason I can say that is because after making my father pass out on the tilt table over & over again nothing was ever done for him. No diagnosis, no drug changes, no referral to a specialist. Besides, his heart rate/BP readings were clearly showing discrepancies as the table was going up. Dad could feel it so they had to see it. But they wouldn’t stop that test until he was unconscious. Dad finally refused to ever take the test again as there was clearly no purpose other than to cause unconsciousness. He wasn’t properly diagnosed with dysautonomia till 2001 – without the Tilt Table Test. Some meds were changed, others adjusted & then the intervals between pass outs grew much longer.

Another view of the dreaded Tilt Table Test.

INTERVIEW WITH MAYO DR HERE.

Many thanks to the Mayo Clinic for the use of their copyrighted materials. | Additional TTT Image by rumruay

The Lyme/POTS/Dysautonomia Connection

By Missy M / April 28, 2021 June 9, 2022 / 2 Comments / Conditions, Dysautonomia, Lyme Disease, POTS / 5 minutes of reading

Apr 28 2021June 9, 2022

Putting it mildly, it’s a very bad connection.

One night in the summer of 1976 or 1977, just when Lyme Disease was coming to the forefront of the news, I was hanging out with friends at a local park near my house. We were standing back a ways from Hall’s Pond in an unkempt area of tall un-mowed grass interspersed with weeds, dirt & randoms sticks fallen off nearby trees. I felt something bite me near the groin area. I turned away from my friends & reached up under my shorts. Sure enough there was a critter in there. We’re not talking a baby bug. No no. This was the Gigantor (look it up – famous kids’ cartoon from the 60s that I loved very much) of insects. (I didn’t yet know it was a tick. I didn’t know ticks range in size & can be as small as a poppy seed. Mine was huge in comparison, more like a popcorn kernel.)

I put Gigantor in a napkin I had with me, as I was enjoying a super-delicious vanilla Carvel cone with colored sprinkles at the time. I didn’t know ticks have to be removed in a particular way. And of course I didn’t even know it was a tick. I just grabbed it to stop it biting me. When I got home I put Gigantor in a baggie. The next morning I went into the bathroom & noticed I had a big red bullseye on my inner upper thigh. The bug & I went right to the doctor. The medical school graduate with diplomas & other framed accolades hanging on the wall behind him listened to me explain what had happened & how I captured my prisoner.

“Is this a tick?” I asked.

He glanced at the baggie. “Looks like an engorged adult tick, yes.”

“Engorged on my blood?”

“I presume so.”

“Well what if it has Lyme like on the news?” I wonder warily.

His response went something like this: “Stop listening to sensational news stories & throw that thing away.”

“Shouldn’t it be examined & tested?” I said, perplexed by his attitude.

“No,” he said.

“Why?” I was totally nonplussed.

“It’s not necessary,” said the highly educated close-minded know-it-all.

“What about the bullseye on my leg?” How was he gonna get out of that one? He had looked at my leg & seen it with his own eyes.

“You got a bug bite & your skin became red from the irritation. That’s the end of the story,” said the guy with MD after his name.

“But it’s a bullseye & it’s from a tick!”

Now he was irked. He let go a long of exhalation of displeasure into the air “That doesn’t mean a damn thing!” exclaimed the wise MD, just like so many other supposedly wise MDs who had so oft said such words to me over the years.

“Can’t you just send this bug to some lab & get it tested? Just to make sure it doesn’t have Lyme?” I persisted.

He picked up the baggie with my bug in it & threw it right in the garbage. If that happened today he would have joined the bug in the garbage, as I would have put him in there myself – head first. (I was very meek in those days. Don’t mess with me now.)

“We don’t have Lyme Disease on Long Island,” he decreed from on high.

CLOSED-MINDED DOCTORS KEEP DOORS TO RECOVERY CLOSED

This uncongenial anti-Marcus Welby continued to speak down to me, call me an alarmist, imply I was a lunatic for bringing a tick into his office. It was awful. I felt like a fool. To my shame I didn’t have the guts to go get my engorged adult tick out of his garbage to bring to some other doctor who might have heeded my request, or at least have been curious. If I had, perhaps I wouldn’t be in the situation I’m in today. I guess the esteemed genius won the battle that day because I chose to be a coward.

Maybe the tick that bit me wasn’t infected, but maybe it was. Wouldn’t the wiser course have been to to scientifically determine the medical facts rather than dismiss the idea of Lyme merely because it was new? The physician in question preferred to spend ten minutes humiliating a young college girl who had come to his office for help. His only counsel was to put calamine lotion on the bullseye. Actually, the calamine helped soothe the area – but it sure wasn’t a cure for Lyme Disease.

Soon after that I developed Bell’s Palsy. I had no idea that could be a symptom of Lyme. Decades later we now know about the co-infections of Lyme Disease & the havoc they wreak on the human body. You’ll find a great deal of pertinent information on Dr. Tania Dempsey’s website. This article is a must read: Lyme Disease & Postural Orthostatic Tachycardia Syndrome.

Photo by Skyler Ewing from Pexel

A very proud plug for my sister, Melanie Weiss, RN, who wrote an award-winning children’s book called In Limbo Over Lyme Disease. Before that she wrote another award-winning children’s book entitled In A Pickle Over PANDAS. [SEE BELOW]

If you’ve never heard of the horrific condition PANDAS [Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus], a subset of PANS [Pediatric Acute-0nset Neuropsychiatric Syndrome], you’ll find all the information you need at PANDASnetwork.org

Here are a few resources from IN LIMBO OVER LYME DISEASE (many more resources in the book)

Fibromyalgia

By Missy M / April 21, 2021 June 9, 2022 / Leave a Comment / Conditions, Pain, POTS, Vertigo / 2 minutes of reading

Apr 21 2021June 9, 2022

I was in constant pain for 6 years, 3 months, 24 days, 24 hours a day. That’s a total of 2307 days, which is actually a lie because it went on much longer than that & still is going on.

Not nearly to the degree it was 20 years ago. From 1997-2003 I experienced not one moment of time without severe pain. No vacation from the sensation. No pills touched it. Except for that one ER visit when whoever the doctor was who gave me one mock pity shot of Toradol, after I begged for relief from pain I’d been enduring for over a year from head to toe. He told me not to come back, that I had “come to the wrong place. We can’t help you.”

Oh sorry doc. I mistook this place for a hospital where guys like you took an oath to help people in medical distress. Forgive me for bothering you you cold-blooded obnoxious unfeeling unmerciful son of a !&@^*&*.

So many others can tell the same exact story.

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Mast Cell Activation in Dysautonomia

By Missy M / April 19, 2021 June 9, 2022 / Leave a Comment / Dysautonomia, Mast Cell Activation, POTS, Treatments / 5 minutes of reading

Apr 19 2021June 9, 2022

So many people with dysautonomia have developed Mast Cell Activation Syndrome (MCAS). What is MCAS? It is simply when mast cells (vital parts of our immunesystems) disseminate the materials of which they are made at inappropriate times, triggering inappropriate reactions in their human hosts.

These reactions range from annoying to life-threatening. Has your throat ever started to close? Has your face turned red & swelled into monstrous proportions? Prepare yourself to click on the following link because Angioedema is not pretty. Now everybody & his brother needs an epipen! I have one. Do you?

MY EXPERIENCE

I started over-reacting to allergy shots. Had to be treated in the office several times with Benadryl, steroids & be watched for hours. It was serious & scary. When I first started out four years ago a weird thing started happening to me. Periodically during the day I would feel a strange “sensation,” followed by my face turning red, then my legs would ache terribly. Sometimes I got a headache, other times not headache. But I always got the “sensation,” red face, pain in the legs. I never associated it with allergy shots but I believe that was the cause. Even though days had passed since receiving the shots, then later weeks, this thing happened every day of my life for three years. I started the 4th year but then my father became terminally ill with heart failure & I was his caretaker. I couldn’t get my shots anymore. After Dad died I started up again but had to start going weekly again, after making it all the way to only once a month.

My reactions in the area of the shots were getting bigger & bigger all the time. Then the oddest thing of all: my face stopped turning red. I still felt the sensation, especially laying down in bed at night, but all through the day as well, along with the terrible leg pains. After a while I realized I felt less awful when my face had been turning red. Whatever was happening was sort of coming out. Now it was going in & that was worse.

Within a few months I started reacting to more than just the allergy shots. It was everything, including food. In my opinion, getting three years of allergy shots while I was already relapsing with dysautonomia, not having a treating doctor for dysautonomia because he\’d moved more than halfway across the country, and being off dysautonomia meds for years because I had been maintaining without them, was too much for my body to handle. I ended up in the hospital a few times – always on allergy shot day. Strangely enough, not from the shots. The allergist realized I was having cholinergic reactions to the very antihistamines that are supposed to STOP allergic reactions.

LUCKIER THAN MOST PEOPLE

Because I had such huge swelling (my entire upper arms were grossly swollen & itchy for weeks) at the injection sites I was instructed to take Allegra an hour before shot time. After three or four times I had my first anti antihistamine reaction. The doctor said I was taking a drug meant to stop an allergy attack when no allergy attack was yet happening – but that’s what I had been instructed to do. He told me to stop taking Allegra & switch to Benadryl instead because it was shorter acting. Same thing happened about the third or fourth time. At that point the doctor said I could no longer take antihistamines – except for Xyzal, which I took at night with no problem. Soon had to stop that as well. Zyrtec was tried. Same thing. My whole body would vibrate, my heart would race, I felt faint – and worse. I’m still luckier than most people. One of my girlfriends since childhood, out of the blue, started experiencing horrific disfiguring facial swelling (angioedema). She went to all kinds of doctors. She’s better now after finding the right doctor to prevent the reaction.

Epinephrine is injected in the upper thigh using an auto-injector syringe as an emergency treatment for an acute allergic reaction to food or insect stings.

This part of my journey began in May 2019. I haven’t been the same since. It has affected my health in other ways. Had to temporarily stop certain medications I needed. Prolia, for example. I missed one shot & now my bone turnover is literally off the charts. I’ve gone from osteopenia to -porosis. Trying to get that straightened out as I write this. [UPDATE 11/2021 – not straightened out yet.] I did well allergic-reaction wise for many months without any untoward situations arising. Then suddenly my body totally over-reacted to a new pill to treat dysautonomia, which sent me back into the “over reaction” cycle again. I have to get that Prolia but I don’t want to go into anaphylaxis. On the other hand, I don’t exactly want to disintegrate from the inside out either! What lovely choices dysautonomiacs have. Prayer & faith are my best hopes & my best friends.

THANK GOD FOR DR. S

My GI guru & actual real-life life-saver, Dr. S, is working out a plan. He\’s cautious but not unduly so. After seeing my latest bloodwork however, my endocrinologist wants me to just get the shot already & be done with it. But she hasn’t lived through what I’ve lived through this past year, while Dr. S has lived it with me. Within a week or so we should know how to proceed. Prayers going I can get the shot, have no reaction, & therefore stop structurally disintegrating. [UPDATE 11/2021: Nope. Still can’t do it. It’s OK. Faith is sustaining me & my bones. UPDATE 3/2022: Still a no. I’m exercising in whatever way my body will allow, mostly stretching, isometrics & a little weight-lifting.]

I’m also going to stop saying things like: “structurally disintegrating.” Thought are things. What we focus on expands. I know better and will do better. [That phrase deserves a paper clip. Every time I slip up & think unhealthy thoughts I put a paper clip into a little container. It was astounding to see how many wrong thoughts I allowed into my mind & how many wrong words I permitted to leave my lips. Try the paper clip challenge. Eventually less & less start going into the container.]

Here’s an enlightening article by Dr. Tania Dempsey, well-known auto-immune & chronic disease specialist: What Is Mast Cell Activation Syndrome (MACS)?

Featured photo by Chris Tempfe | Mechanism of Allergy Illustration by Designua | Epipen Photo by David Smart

In the Darkness of Dysautonomia

By Missy M / April 16, 2021 June 9, 2022 / Leave a Comment / Dysautonomia, POTS, Treatments / 4 minutes of reading

Apr 16 2021June 9, 2022

I can no longer cope with dysautonomia: the bleakness, the pain, the feeling of hopelessness. ALL OF IT.

I finally said it. Publicly. The secret I’ve been keeping from myself & everyone else since 2011, after two back surgeries in a row, one in April, one in May, the year that put the R in RELAPSE. Compared to 2021 however, 2011 was a walk in the park. Let’s not even talk about 2013, 2015, 2018, 2019. If you’d like to know the details about how I’ve lived life in the darkness of dysautonomia, and to hear about some parts of my life that were as bright and happy as could be, you’ll find them in my story, Journeying Through Hell & Back – AGAIN!

In the midst of this latest relapse, my ability to deal with the devastation of this condition is virtually non-existent. Twenty years ago when it almost killed me by malnutrition I was much better equipped to negotiate the situation. Spiritually I was resigned to whatever would be. Now I’m in a different place. Cancer surgery in 2015 took away all my hormones which I firmly believe helped me cope in the past.

As a very private person, one who has tremendous inner strength, I am admitting I can’t cope with this condition anymore. This is one of the hardest admissions I’ve ever made. I have done so in an attempt to connect with reserved people like me who tend to go inward when fighting invisible enemies. It’s not a premeditated path, just the coping method of least resistance. I’ve since found out the method may have inadvertently hurt family & friends. I pray they understand my being incommunicado a lot is not to shut them out, it’s to shut me in.

AM I A WIMP OR AM I GETTING WISE?

It’s become painfully obvious pretending to myself that I’m coping is not working anymore. The one person I have burdened with symptom after symptom, day after day, year after year, is my husband. I realized I’ve crossed a line. He is not a therapist & he too is in pain over my condition. I might be in the midst of another frightening symptomatic crisis, nearing syncope or experiencing mast cell overload with its weird systemic sensations, crying about what it’s doing to me physically & mentally, while he’s trying to work from home handling conference calls, dealing with clients, colleagues, investment people, or whoever else he speaks to, even the head of the firm. It’s not fair. My husband can’t always pick up the pieces, If I had to go to the hospital, of course he would drop everything. But if what’s happening is not at that level, it’s time I connected with a someone who works with people fighting chronic illness. Someone who can give me better tools than I currently have because my toolbox is empty.

SHAME IS SOMETIMES SHAMEFUL

I can’t believe I’m saying these words. They feel foreign, weird, wrong & somehow . . . shameful. I feel feeble & incompetent because I got through it gracefully 20 years ago – so what’s the problem now? I know the lack of hormones is the major culprit. By the way, I do NOT think it’s wrong or shameful for others to seek help. But when it comes to me seeking assistance do I feel a slight sense of shame. My amazing parents went through the Great Depression, WWII & tons of difficulties over their lifetimes, including life-threatening illnesses, and they never needed any help. My parents are my heroes & I’d like to be at least as strong as they were. Feeling like a weakling makes me feel bad. But I have to turn that around. I’m gonna get over this self-imposed ridiculousness & do what I need to do to acquire better tools for dealing with the darkness of dysautonomia.

It’s taken me 6 years to admit this to myself. So if it takes you a little while to come to the same conclusion, don’t be hard on yourself. Every individual is different & in a different place & therefore requires different remedies at different times. Praying all of you find the resolution that’s right for you at the right moment.

YOU ARE NOT ALONE

My advice is no matter what’s happening don’t be overly afraid of the darkness of dysautonomia – first, because you are not really alone, even if you’re by yourself – second, because even in the dark there is light just beyond. Those of us with DYS have to work a little harder to see it.

Please leave a comment if you can. I appreciate the feedback. You might want to head over to The Forum to start a conversation topic or just read what others have written – that may be all you need to get through the next difficult hour.

If you’re not feeling up to going out & finding someone to help you cope right now, try Zocdoc, Doctor on Demand, or other medical apps available online. Don’t give up my fellow dysautonomiacs!

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