dysautonomia vs ME

conditions

Is POTS Dysautonomia? Or is Dysautonomia POTS?

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?

“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

Fibromyalgia

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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