Conditions – 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

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!

Is Your Doctor Confused?

By Missy M / June 6, 2021 June 9, 2022 / Leave a Comment / Conditions, Doctors, Dysautonomia / 4 minutes of reading

Jun 6 2021June 9, 2022

“At least it’s the enemy I know.”

That is no reason to stay with a doctor who can’t figure out what’s wrong with you. Yes, it’s hard to go from doctor to doctor. It’s expensive. It’s tiring. The worst part is getting your hopes up then getting them dashed again. It’s painful. It’s dispiriting when they give you “the look” & express their ignorant erroneous conclusion, i.e., that they don’t believe there IS anything wrong with you. But for the sake of your family, for the sake of your life, you have to keep searching for the doctor who will figure it out.

Ha! I should talk! I don’t have a treating doctor. My doctor moved nearly 1653 miles away about 10 years ago. It had taken 4 years to find him & I almost died making my way through about a million other doctors who HAD NO IDEA what was wrong with me. After he saved my life (and my father’s) & started me on treatment I did fairly well. I maintained even off medications for several years. Until three surgeries in four years, one of which removed all my reproductive organs thus taking away my essential hormones. Being the caretaker of both my parents in their last years, and getting allergy shots for four years while already in a relapse, has brought me to the brink of catastrophe once again.

ALL DOCTORS ARE NOT CREATED EQUAL

I’ve gone to many doctors who claimed to treat dysautonomia. Here’s a story you may not hear every day. While I was in the office of one particular doctor, an old woman sitting across from me in a very crowded waiting room – at least 50 people – waiting her turn to be called in DIED in her seat. The patient sitting next to her, also waiting her turn, happened to be a nurse. The poor old woman’s head fell slightly sideways onto the shoulder of the nurse, who looked over at the old lady and said, matter-of-factly, “She passed away.” The nurse felt for a pulse. There was none. “She’s dead,” the nurse confirmed to one and all. Loudly. The doctor heard all this commotion and rushed into the waiting room.

All other patients were asked to leave as the doctor and my sister who’s an RN, performed CPR on the woman until an ambulance came. (The nurse who pronounced the woman dead wanted nothing to do with the CPR & she was out of there.) I was sitting on the side of the room in the wheelchair I’d come in until my sister had done her duty for the poor old woman who died waiting to see her doctor.

That was of course a one-in -a-million very unfortunate occurrence but it certainly put me off going back to that office. Other doctors I went to over many years were completely ignorant of dysautonomia & POTS even though they advertised as treating the condition. It was maddening.

At the moment I’m mentally stuck. I can’t handle going through again what I went through 20 years ago: going from doctor to doctor getting no help as all – that’s if I was lucky. Most of them said I was making up my symptoms, called me a liar to my face, and worse, and it is just not something I deign to put up with at this time.

What is happening is two wonderful non-dysautonomia doctors I’ve know 40 years who I trust implicitly are doing their best to help me. I can feel time is not on my side so I pray to God they come upon the right treatment that will arrest the progress of my current deterioration, before it’s too late.

If you find yourself in the same situation take a look at Dysautonomia International.org‘s worldwide list of treating doctors. You’ll find many other helpful websites on my LINKS page. If you want to read more about my luck with doctors & dysautonomia, take a look at my story, Journeying Through Hell & Back – AGAIN!

Photo credit Imgflip.com

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

Dysautonomia & Chiari Malformations

By Missy M / June 4, 2021 May 14, 2022 / 1 Comment / Chiari, Conditions, Dysautonomia, Pain, Syringomyelia / 6 minutes of reading

Jun 4 2021May 14, 2022

What is a Chiari 1 Malformation? It’s when the lower part of the brain, the tonsil, expands beyond where it should, putting pressure on the brainstem, cerebellum & spinal cord. The malformation was first recognized by Austrian pathologist Hans Chiari in the 1890s while performing post-mortems. (Click HERE for a straightforward discussion on Chiari. But don’t forget to come back.) Due to the plethora of MRI machines many people are discovered incidentally to have the malformation. A good number are asymptomatic. Exactly how many fall into this category is not yet known. In all there are three levels of Chiari Malformation (some say four).

GOLFER BOBBY JONES & CHIARI

Bobby Jones with his 4 Grand Slam Trophies, circa 1930.

Bobby Jones, the most famous amateur golfer of all time, blessed with movie star looks & a charming personality, was stricken with a Chiari-related ailment called Syringomyelia – a blockage within the spinal column called a syrinx (a fluid-filled cyst). The syrinx likely developed as the result of a lightning strike that caused a pile of bricks from a chimney to fall onto Jones’s shoulder. The incident occurred at Atlanta’s East Lake golf course in 1929 when Jones & his friends had run to the clubhouse to escape the lightning. Bobby was not yet 30.

Is it possible Jones already had a Chiari Malformation that was exacerbated by the 1929 event? As early as 1926, three years before the accident, Bobby wrote the following about peculiar, painful sensations bothering him during the British Amateur Championship:

“I felt, and I am sure heard, the muscle up the left side of my neck give a loud, rasping creak like a rusty hinge.” *

(I’ve experienced the exact same anxiety-inducing phenomenon.)

Jones almost withdrew from the tournament because of intense pain. Apparently he had had stiffness, creaking, & clicking for years. He went from doctor to doctor complaining of neck & shoulder pain yet was never even given an X-ray! By 1948 Jones had to give up golf completely. It wasn’t until 1950 he was finally diagnosed. Eventually he was unable to walk or use his hands & was pain-ridden for the rest of his life. He passed away in 1971.

Bobby Jones’ face clearly shows the devastating effects of living 30 years with Syringomyelia. With great effort he was able to walk a few steps using two canes, as he poignantly did at the birthplace of golf, St. Andrews, where Jones won the British Open at the Old Course in 1927. In 1958 he was invited over to receive one last honor: the Freedom of the City. Though his body had long ago failed him his gracious manner was ever present. Jones addressed the overflowing crowd; virtually every citizen of St. Andrews heard him express his gratitude that day at the Town Hall.

COURAGE UNDER FIRE – SOMETHING WE ALL NEED

Jones’s motto for both golf & life was: “Play it where it lies.” Bobby Jones didn’t just speak those words. On the golf course he never expected the kind of R–E–L–I–E–F professional golfers are accorded today. In his day, when a drop was required, due to a penalty or unplayable shot, the golfer turned around & dropped the ball over his shoulder. Wherever it fell is where the ball was played. Today, professional golfers face forward & virtually place the ball where they want it. They’re even allowed to lift & clean the ball if it’s dirty, then place it down again. They no longer play it where it lies. Shall we say standards have been relaxed?

Bobby Jones was accorded facile relief neither on the links nor in his life. Never bemoaning his fate he accepted the situation with incredible grace & courage. In private everyone is entitled to moments of sadness, depression, even anger, perhaps demanding of God: WHY! Bobby may have had his moments. Constant pain does that to you. So does having the sport you love & put on the map taken away from you. The fact is, even after Syringomyelia robbed Jones of his physical freedom, he continued to live his public life in a humble & heroic manner, as did Lou Gehrig. I’m sure we all wish we could exhibit in our own daily struggles the exceptional grace those men displayed.

When such famous people become the face of a debilitating disease it brings world-wide awareness to the condition. Thankfully, Jones’s unprecedented achievements in golf & his sterling character were both weighty counter-balances to the terrible affliction that became for him yet another claim to fame – a terribly tragic one.

In Jones’s case the usual manifestations of dysautonomia did not appear to be a major component of the Syringomyelia. But Chiari can certainly present as dysautonomia & be diagnosed as such because the symptoms are so similar:

Neck & shoulder pain
Headaches
Visual problems
Numbness
Sleep apnea or other sleep difficulties
Trouble swallowing
Overly Flexible Joints (Ehlers-Danlos Syndrome)
Frequent UTIs
Anxiety
And so many more

MODERN MEDICAL EQUIPMENT FINDS MORE CHIARI PATIENTS

Today of course it’s theoretically easier to get a correct diagnosis much more quickly, thanks to MRIs, CT scans other specialized testing, and doctors dedicating their lives to studying & treating this disorder. But people are not always referred to those doctors nor do they get proper testing. I am a case in point.

Ten years ago I had to have two emergency back surgeries one month apart. The first for a herniated disc, the second for a severe spinal fluid leak. That leak & other symptoms convinced the surgeon, who did a residency at The Chiari Institute on Long Island, that I had Chiari. Two brilliant physicians I had great trust in, my neurologist Dr. B & his very experienced radiologist colleague, said I didn’t have Chiari & was not I borderline; the famous Chiari surgeon I saw said he wasn’t sure & wanted more testing; the back surgeon was the only one who was firmly convinced I had it. So who do I believe?

I never completed the testing because I was so physiologically & emotionally beset by symptoms after the two back surgeries I just couldn’t deal with it. (Currently going through a serious dysautonomia relapse, I still can’t.) Therefore, to this day, I don’t know with perfect certitude whether or not I have the condition.

Since thoughts are things, since everything ever created in this world existed in someone’s thoughts before it existed in the physical plane, I choose to create my reality and firmly believe I do not have Chiari.

The Bobby Jones story & advances in medical testing have seen to it that Chiari is no longer the orphan disease it once was. How many people have it? Estimates vary. Generally speaking the numbers are high enough (thanks to those MRIs) that the condition has come to the forefront of neurology & is no longer overlooked or dismissed as in the past. But you still need to be seen by the right doctors.

If you have been told you have the condition, or are borderline, and you want to get properly checked out, or if you simply want to learn more about Chiari Malformations, visit The Bobby Jones Chiari & Syringomyelia website. Just as important, please consider financially supporting the Foundation, a 501(c)(3) non-profit organization using its resources to find a cure for this condition. Another worthy Foundation to which you might consider donating is ConquerChiari.org. There are more. Do a search!

* From Ron Rapoport’s 2005 biography The Immortal Bobby | CT Photo by Anna Shvets from Pexels

Living With Constant Vertigo

By Missy M / May 1, 2021 June 9, 2022 / Leave a Comment / Conditions, Dysautonomia, Vagus Nerve, Vertigo / 2 minutes of reading

May 1 2021June 9, 2022

Living with constant vertigo is like being on a super sped-up, out-of-control merry-go-round: it can neither be stopped nor can you get off.

Occupational therapy is a great help. Learning to walk with vertigo, to balance your stance, how to look, where to look, what not to do. The best tip I ever got was to gaze out far into the distance & picture something in your mind that will cement you to the earth. The suggested mountain didn’t help me. What did help was picturing John Wayne in the distance, smiling at me, reaching out to steady me, hearing him tell me it was ok, that I was going to be ok & that he wasn’t going to let me fall.

It’s what works for YOU you have to find. Maybe the mountain in the distance will be all you need. Or your church. Or a giant oak tree. Or your German Shepherd. Or a Saturn V Rocket. Whatever to you is big & strong & powerful & still will stabilize you. It will give you moments of stillness that lead into minutes, that grow into hours.

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Photo from PublicDomainPictures

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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