Fainting – 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!

Vagus Nerve Damage & Dysautonomia

By Missy M / June 5, 2021 June 9, 2022 / 1 Comment / Conditions, Dysautonomia, Fainting, Pain, Treatments, Vagus Nerve / 10 minutes of reading

Jun 5 2021June 9, 2022

My gastroenterologist, Dr. S, believes vagus nerve damage could be a contributing factor of my autonomic difficulties. If that’s true then it could be “driving” the dysautonomia.

A definition is in required: Va – gus is the Latin word for wanderer.

Here’s my laywoman’s understanding of the Wanderer: CN X, the 10th Cranial Nerve, is “the body’s superhighway,” providing data from the brain to other organs. It signals to & from the different organs it touches via the Central Nervous System. Regulating bodily reactions during restful periods CN X deals primarily with the involuntary Parasympathetic Nervous System. However, the vagus nerve does have some communication with the Sympathetic Nervous System. Because it has both sensory & motor duties it is considered a “mixed” nerve. To read the complete anatomical course taken by the Vagus nerve click here.

VAGUS NERVE EXPEDITION

Why don’t we lay people wander along briefly with the 10th & longest of the 12 cranial nerves from genesis to terminus:

- Welcome to the brainstem where our Wanderer Tour begins!
- Watch your step as we exit the cranium with two other nerves, numbers IX & XI.
- Notice the path as we head down to the neck & throat area, where CN X performs many intricate functions before branching left & right.
- Take care as we enter the thorax, where even more complex tasks are carried out with the esophagus & the heart.
- Things will get tight for a moment as we make our way into the abdomen through a tiny aperture in the diaphragm known as the hiatus.
- Our journey comes to an end in the abdomen where CN X’s root branches break up into other branches that supply data to the esophagus, stomach, small and large bowel.
- We hope you have enjoyed this Tour of the Wanderer!

SYMPTOMS OF VAGUS NERVE DAMAGE

If the wandering vagus nerve is ever damaged in, say, a car accident, you may pay a systemic price. Seconds after my accident in 1997 my voice changed. Forever. First it became weak sounding. Soon I couldn’t sing anymore. I remember my accountant told me I sounded “sad.” It’s 24 years now & my voice has never regained its former tone.

It’s clear the throat itself has been affected. For the last few years I’ve been choking for no good reason. Believe it or not the toughest thing to swallow is water & my own saliva! Sometimes the opening to the throat will close just as liquid hits & it gets thrown back up into my mouth causing me to gag & spit. Other times the water seems to get “stuck” and I start coughing. Last month there was an incident during which I coughed non-stop for five hours.

The next day Dr. S informed me I had experienced a throat spasm & should have put a medication he had previously prescribed for me (Hyoscyamine) under my tongue. I didn’t think of doing that because I didn’t know I was having a throat spasm. And I’ve only used the drug for esophageal spasms. Now I know it can be used for this too. Hoping I won’t ever need it again.

[WARNING! NOT ADVISING ANYONE ELSE ON EARTH TO TAKE THIS OR ANY OTHER DRUG! SPEAK TO YOUR DOCTOR BEFORE TAKING ANY MEDICATION!]

I wonder if the choking thing could be from borderline Chiari 1 Malformation. Regarding that “diagnosis,” my extremely accomplished always-keeping-up-with-the-latest-medical-news neurologist & the thoroughly experienced radiologist who read the MRI say I do not have Chiari and am not borderline.

The prominent Chiari surgeon I went to said it wasn’t clear that I have it or that I am borderline but he wanted more testing, which I didn’t get done.

The only one who’s positive I have it is the back surgeon who had to operate on me a second time to repair a spinal fluid leak from the first surgery he had done the previous month. Thin dura & other odd symptoms of mine are what led him to suspect Chiari. Part of his time as a resident was spent working in the Chiari Institute. I got my appointment at the Institute because of the surgeon’s clout there.

Getting back to Dr. S. He was the first person & doctor to ever mention the word dysautonomia to me back in 1999. He suspected I had it & he was proved correct. After the car accident my GI system stopped operating correctly. I could barely eat a thing, dropped to 90 lbs & nearly died from malnutrition. (I wasn’t seeing Dr. S at that time or he certainly would have helped me. I was busy going from doctor to doctor to doctor, none of whom helped in any way.) Since 2019 I’ve been in a serious dysautonomia relapse. All the madness is happening again. The few foods I’m able currently able to consume also give me trouble. Pounds are disappearing again. When the GI tract becomes disabled food becomes your enemy. Without the meds Dr. S prescribes – especially Mesalamine, I would probably be on a feeding tube. Other treatment is obviously needed.

SO WHAT’S NEXT?

With my neurologist Dr. B, Dr. S is working toward the following:

(1) Getting my rapid weight loss & severe GI symptoms to stop. (I can only eat one meal a day, with sometimes a piece of fruit or cheese or toast thrown in at some other time. I’ve lost 54 pounds in a very short period.)

(2) Attempting to get other dysautonomia symptoms under control using a different SSRI, Trintellix, than the Paxil I was on the first time around. I’m unable to take that anymore because of estrogenic effects I must avoid due to a previous estrogen-driven cancer. This new drug allegedly has less estrogenic properties. It may not exactly treat the fundamental cause of dysautonomia as Paxil did but will hopefully tamp down its most deleterious symptoms, which would include increasing inappropriate anxiety, heat attacks, all-over pain, insomnia, & too many others to name. (The commercial on TV said it could lower sodium. That’s all I need! I’ll be passing out every five minutes. According to Dr. S that only happens on high doses. Thank God!) PS-It didn’t help at all so the doctor weaned me off.

Dr. S & I once briefly spoke of a Vagus Nerve Stimulator. He explained the idea behind it & how it works. There are quite a few risks involved with the stimulator & we’re miles away from considering such a scenario. It will likely never come into play. Even if the vagus nerve was damaged in the car accident, I’m reminding myself that 20 years ago Paxil was able to overcome that to a great degree. It rebalanced my autonomic nervous system to a point where I could function. It didn’t cure me but it enabled me to function.

PERSONAL POV

With regard to my own case I agree with the doctor that there is damage to the vagus nerve. My own theory which I haven’t brought up to Dr. S or Dr. B yet is that the phrenic nerve may also be damaged. My diaphragm is always causing me breathing problems, hiccups, and tightening up on me. Last summer an Xray showed eventration of the right diaphragm; due in all likelihood to gas and/or bacteria buildup, a consequence of slowed motility plus SIBO (diagnosed 1/2020), and/or (possible) damage to the phrenic nerve. Taking extra strength gas pills & a specific antibiotic for SIBO has helped. However, once I finish the antibiotic the SIBO comes right back in all its glory. If we can just get rid of the SIBO & if the new SSRI had worked out, both the phrenic nerve (if it’s damaged) & the vagus nerve may once again be able to re-adjust themselves as they seemed to do 20 years ago, enough to let me eat, sleep & function like a normal-ish person. At this point that’s all I’m looking for.

The windup to this post is: although the symptoms of vagus nerve damage & dysautonomia are virtually identical, I can find no categorical proof that vagus nerve damage is a major factor behind dysautonomia. We can perhaps deduce that in many cases, especially cases of trauma to the body, e.g., a car accident, damage to the vagus nerve could well be the driver of dysautonomia, or at least a huge contributing factor. Do some research. Maybe you’ll be the one to find the proof. And don’t be afraid to ask your doctor some hard questions he might have to research!

Before you leave this post be sure to check out Healthline.com’s 3D interactive demo of how the vagus nerve operates in your body. And by all means, please leave a comment. I really appreciate the feedback.

Update on starting the new SSRI:

Three days at half the 10 mg dose of the newly prescribed Trintellix built up into a horrible allergic reaction (Mast Cell Activation?) that put me out of commission for four days.

The third night, about an hour before going to bed, my right leg started itching badly. I didn’t think anything of it other than that it was annoying. I hadn’t had trouble in this area for at least 7-8 months. Trying to watch a little tv I felt overwhelming exhaustion come on. As I was about to lay down a powerful migraine headache came on. As my head hit the pillow some kind of systemic bodily sensation occurred. (A mast cell dump?) I felt nervous butterflies in my stomach, then inappropriate fear launched itself, then the itching went out of control: both my legs then feet then hands then head. The headache I felt when this incident was triggered stayed with me 96 hours. (It’s still lingering as I write this.) The whole thing was very similar to bad reactions I had from allergy shots.

I got hold of Dr. S the next day. He instructed me to hold the new SSRI for the weekend. Since I have allegedly had cholinergic responses to Benadryl, Zyrtec & Allegra [antihistamines have anticholinergic properties] during the allergy shot years & was told never to take them again, I couldn’t take Benadryl to stop the allergic part of the incident. (Because I always had huge reactions to my shots I was instructed to always take one of the above meds one hour before getting the shots. Three times while driving to the office my heart “went off” – I was having a “mild” arrhythmia which felt like I was going to die. I nearly fainted at the wheel. Had to pull over & was taken to the hospital. This happened with each of those medications. Most of the time it happened at the allergist’s office.)

GI genius Dr. S thought outside the box. He suggested getting dye-free children’s Benadryl to see if I could tolerate it. The next morning I took 1/2 the recommended child’s dose & it arrested uncontrollable itching on my right foot. It didn’t stop itching in the other areas & I didn’t want to take anymore Benadryl systemically. I found I am able to tolerate topical Benadryl. Although it didn’t quite do the trick for the rest of the itching I scratched & lived with it as it was only annoying & not out of control.

The new plan is to lower the dose of the SSRI to 1/4 strength (or even less as neurologist Dr. B suggests) & try again next week. To tell the truth I’m a little nervous about it. But I’m not giving up. Dr. S & Dr. B are going above & beyond to help me navigate this relapse. I trust both of them completely & will not let them down. I will find the courage to do what needs to be done.

ADDITIONAL UPDATES:

6/12/2021: Restarted TriNtellix at less than 1/4 of a 5 mg pill. We’ll see what happens. 🙏🏻
6/26/2021 : Increased to 1/3 of 5 mg pill with no untoward reactions.
9/16/2022: Increased to 7.5 mg with no untoward reactions.
1/18/2022: Increased to therapeutic dose of 10 mg with no untoward reactions.
3/8/2022: Weaned off Trintellix as it was did not help with any symptoms, especially regarding digestion.
2/22/2022: Prescribed 14 days of Neomycin (1/2 therapeutic dose) which caused a wicked Herxheimer Reaction. Had one last time on Rimaxifin, but this was much worse. Also, I just “graduated” from having simply Hydrogen to also Methane SIBO. The breath situation is so bad I can’t bear it! Also, my sister the RN believes I have chronic Lyme from that tick bite in the late 70’s tick bite in the late 70s and that’s part of the Herxing. Hate to admit it but she’s usually right.
3/9/22: Now we’re starting PEMF Therapy. You can go to my husband’s website and take a look if you want to see what it’s about. It’s a subject for another time & I’ll keep you apprised.

Featured photo by Kindel Media from Pexels | Warning photo by Christopher Farrugia from Pexels