Dysautonomia - What Many Actually Have (Often Unaware and Not Diagnosed). People and Pets.

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Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 1933
User offline. Last seen 11 hours 41 min ago.

A year ago, I was driving 'over the bridge' into Grand Junction, Colorado from the south, and saw a billboard raising awareness about dysautonomia.  It did not say it was sponsored by any local organization, and I believe it maybe was paid for by Dysautonomia International, but I of course did not have long to look away from the road to satisfy my curiousity about who was raising awareness in my valley of western Colorado about dysautonomia. 

I was intrigued --- I had come to realize my health issues were better explained using the dysautonomia model than anything else.  I'd not yet realized that O'Rio, who was in the back seat as usual, also had dysautonomia.  I'd thankfully get into exploring canine dysautonomia earlier this year, and find a veterinary educator in my searches which 'connected a lot of dots for me'.  I hope this topic will do that for you, if you're reading it.     Photo, above -- August 2017 O'Rio Grande having Ortho-Bionomy session with Travis Reed, LMT, Grand Junction, Colorado (Sherwood Park was the location).  See, below, for his contact information (in a grey box just past my sign-off).

Notable changes occurred with O'Rio's functional abilities after, as well as neurological quirks.  For about two months after, if you scritched his white spot where Travis' left hand is in this photo, his back legs -- plural -- got to going like the 'special spot' dogs have was scratched. 

The smoke alarm went off not long after this in the house, and his legs did that from the excessive stimulation to the nervous system.  And he had to re-learn how to do stairs because he was dis-inhibited with hamstring tightness helped with the treatment, among other reasons. 

It was truly incredible what changes came from one seemingly simple treatment! (True talents make it look easy, right?)  THANK YOU TRAVIS REED!

Below, notice tongue extending in 'overflow' from the challenge of the psycho-motor processing system to go down the stairs?  I remember looking at the (autistic I'd suspect today) girl sitting next to me in first grade coloring with her tongue out and not breathing regularly because it took so much to be 'doing' that motor activity, as an example from the human world.

Grand Junction, Colorado (USA) is the medical hub for not only the region for a large area (Salt Lake City to the west, Denver to the east, Albuquerque to the south), but is a key community planted long ago to be providing the mainstream solutions for reforming the mainstream health care system.  Some have referred to it as the "evil empire", which helped me to understand what was going on here.  As a provider I was not 'in the know' about a lot of things and had to figure them out the old fashioned, hard way -- first hand experience. 

I had risen as an occupational therapist to a point by my mid 40s to have been chosen to provide the OT services in a large medical building which served 40,000 people -- about 1/2 to 1/3 the overall area's people.  Normally you'd presume you'd be able to make a living off of that kind of thing.  I could not. 

Soon after I'd leave in 2008 to create Lumigrate, the therapy clinic I was contracted within the 'enmeshed building of insiders' would become part of the overall building's enterprise.  Their founder had pointed out at a meeting that of all the therapy clinics in business in the Valley at the time he started the one I was trying to be part of for those three years, theirs was the only one still in business.  And so now it was no more -- taken over by the Big Medicine group. 

The very first doctor I marketed to in 2005 when starting out in my three year endeavor to provide quality, innovative and honest therapy services to consumers had enthusiastically asked me to look at his idea for what patients with 'fibromyalgia' really needed from area providers.  He drew out a model which had them going to OT and PT a lot, and the other providers across the course of the year. 

I'd been diagnosed with "fibromyalgia" in the late 1990s.  I'd been diagnosed with what today is called "chronic fatigue syndrome" in the late 1980s.  I'd been missed in the 1970s when I sought out help for what clearly were POTS symptoms, but suffice it to say I had POTS as a primary concern in my teens in the 1970s.  I knew what I'd done to get better --- to be well for periods of time, even --- and told this doctor (a rheumatologist) about it.  Thrilled with the 'recipe for success' he suggested / requested be offered to patients by the area's providers, I went to the clinic's management presuming, mistakenly, they'd be all up for the suggestion. 

Two years later I'd finally have a patient in the community hear about me from a massage therapist, and I started doing an ad-hoc quiet version of the rheumatologist's suggested plan of care.  The PT I thougth was right for her agreed to see her.  The patient agreed to see him as well as the pain / fatigue / brain / nervous system focused psychologist who was also an owner in the building as the head of the behavioral health group included in this mega-health-care building.  He was so thrilled with what occurred for the patient, he insisted we start an education group. 

I showed him the model the rheumatologist had drawn out for me years before, and we brainstormed together and he drew up what I use as the cornerstone of Lumigrate -- The YOU! Model. YOU are the one in the middle deciding what sources you learn from, use for products and services, and so on. 

That is not the way 'nationalized' 'socialistic' medicine works, thought, so it's 'going against the tide' of mainstream. 

There, many patients would, I'd later realize, actually have "dysautonomia", but were diagnosed with other created condition names from mainstream -- fibromyalgia, chronic pain, chronic fatigue, depression, and so on. 

What helped me to see this connection was when we had a COTA (certified occupational therapy assistant) student for our last months in the clinic, who took an interest in the only patient we had difficulty getting results we felt were right -- they had CRPS, or complex regional pain syndrome.  The education group had been going six months by that point in time and within the people who attended with the conditions addressed in our education, I saw the 'overlap' to many other separate disorders when using mainstream, allopathic labels. 

The OTAS (student, who passed and became a COTA, married, and has a family) presented her final report and oral presentation on complex retional pain syndrome (CRPS, which used to be call RSD (reflex sympathetic dystrophy)) and I asked "Did you see anywhere this overlapping with 'fibromyalgia'?"  She said she had not.

Increasingly recently, I've seen many sources making the connection -- when you get out of looking at 'diagnosed conditions' and look at the symptoms, particularly.   

From dysautonomiainternational.org/page.php , I offer you this, and I suggest you GO to the site, and look at the graphics and other content they have.  That is my format at Lumigrate generally --- finding the 'good wheels' and linking to them. 


What is dysautonomia?

 
Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control.

People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death. Dysautonomia is not rare. Over 70 million people worldwide live with various forms of dysautonomia. People of any age, gender or race can be impacted.

There is no cure for any form of dysautonomia at this time, but Dysautonomia International is funding research to develop better treatments, and hopefully someday a cure for each form of dysautonomia. Despite the high prevalence of dysautonomia, most patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession. 

Some of the different forms of dysautonomia include: 

Postural Orthostatic Tachycardia Syndrome (POTS) - estimated to impact 1 out of 100 teenagers and, including adult patients, a total of 1,000,000 to 3,000,000 Americans. POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure. 

Neurocardiogenic Syncope (NCS) - NCS is the most common form of dysautonomia, NCS impacts tens of millions of individuals worldwide. Many individuals with NCS have a mild case, with fainting spells once or twice in their lifetime. However, some individuals have severe NCS which results in fainting several times per day, which can lead to falls, broken bones and sometimes traumatic brain injury. Individuals with moderate to severe NCS have difficulty engaging in work, school and social activities due to the frequent fainting attacks. 

Multiple System Atrophy (MSA) - MSA is a fatal form of dysautonomia that occurs in adult ages 40 and up. It is a neurodegenertive disorder with some similarities to Parkinson's disease, but unlike Parkinson's patients, MSA patients usually become fully bedridden within a 2 years of diagnosis and die within 5-10 years. MSA is considered a rare disease, with an estimated 350,000 patients worldwide. 

Dysautonomia can also occur secondary to other medical conditions, such as diabetes, multiple sclerosis, rheumatoid arthritis, celiac, Sjogren's syndrome, lupus, and Parkinson's.1,3 

There is currently no cure for dysautonomia, but secondary forms may improve with treatment of the underlying disease.4There are some treatments available to improve quality of life, both with medications and lifestyle changes/adaptations, but even using all treatments available, many dysautonomia patients experience disabling symptoms that significantly reduce their quality of life. 1, 2, 3, 4, 5 

Dysautonomia International encourages you to Learn More. You can make a difference in the lives of people living with dysautonomia by donating today! 

Sources 
1. National Institutes of Health Rare Disease Network's Autonomic Disorders Consortium 

2. Dysautonomias: Clinical Disorders of the Autonomic Nervous System. Moderator: David S. Goldstein, MD, PhD; Discussants: David Robertson, MD; Murray Esler, MD; Stephen E. Straus, MD; and Graeme Eisenhofer, PhD 

3. Dysautonomia, A family of misunderstood disorders. Richard N. Fogoros, M.D., About.com Guide Updated November 13, 2011. 

4. National Institute of Neurological Disorders and Stroke Information Page 

5. Clinical Disorders of the Autonomic Nervous System Associated With Orthostatic Intolerance: An Overview of Classification, Clinical Evaluation and Management. Blair P. Grubb, M.D. Associate Professor of Medicine and Pediatrics, Divisions of Cardiology and Neurology, Barry Karas, M.D. Assistant Professor of Medicine, Division of Cardiology, The Medical College of Ohio.


Basics of the Autonomic Nervous System

 

In order to understand the various forms of dysautonomia, it is a good idea to learn a little bit about the basics of the autonomic nervous system (the "ANS"). The ANS is a very complex system of nerves in the brain, spinal cord, and peripheral nerves that reach out to the limbs and organs.

The ANS can be divided into three main areas. The central (brain) portions of the ANS are found in the medulla oblogata in the lower brain stem, and also in the hypothalmus. The other two portions of the ANS are found in the peripheral nerves, including the Sympathetic Nervous System branch, and the Parasympathetic Nervous System branch. 

The medulla oblongata is a part of the brain that regulates cardiac, respiratory, vasomotor control, as well as reflexes like coughing, sneezing, vommitting and swallowing. The hypothalmus, another part of the brain, performs a supporting role by linking the nervous system to the endocrine system. The hypothalmus regulates body temperature, thirst, hunger, sleep and circadian rythyms in the body. Through endocrine control, the hypothamlus also plays a role in regulating blood volume and blood pressure. 

The Sympathetic Nervous System is commonly associated with the "fight or flight" responses - those bodily reactions that you need to respond quickly in an emergency. When faced with a life threatening situation, your human instinct takes over and you either fight the danger you are facing, or you take flight and run away from the danger.

Your Sympathetic Nervous System allows your body to do this rapidly. For example, in the face of danger, your Sympathetic Nervous system will cause bronchial dilation - this allows you to breathe better while you are fighting or running away from the dangerous situation. Likewise, your heart will beat stronger and faster, also prepping the body to fight or take flight. 

The Parasympathetic Nervous System is commonly associated with the "rest and digest" responses - those bodily actions needed to restore energy and rest the body. For example, chewing food triggers the Parasympathetic Nervous System to increase production of saliva and to increase digestion in the gut. The Parasympathetic Nervous System also increases gallbladder function, which assists in the digestive process. 

The following image sets out some of the notable features of the ANS.  (GO SEE THE IMAGE AT THE FOLLOWING LINK at the source for this 'tip of the iceberg' from the content at Dysautonomia International's website, it's a great and solid resource from what I can tell!)

dysautonomiainternational.org/page.php


 What is Dysautonomia in Animals? on YouTube currently has 169 views as of my adding this link (it was created in February 2016).  I highly suggest you take the time to go and start watching and see if it's something you'd like to spend a total of 5 minutes watching.  I think it's worth the price of admission. 

There's one aspect of Dr Inman's talk that 'leapt out at me' -- that some level of dysautonomia occurs in virtually all people.  He explains why and how it's correlating to overall wellness / illness level.

This is consistent with what my mother was finding as an elementary teacher in our rural mountain school where she was screening all third graders for what was called 'sensory integration dysfunction' in the 1960s and 1970s (and even when I was in occupational therapy school in the mid 1990s, too, the name change to sensory processing disorder occurred relatively recently). 

So O'Rio had dysautonomia symptoms, as did his former family's young dog (who got a treatment from a provider who has learned form Dr. Inman, thankfully it helped and we can hope that the family continues to seek out the things I found that helped the dog ongoing.  O'Rio was found, via another model of medicine that looks at electronic charge of elements and sensitivity which is genetic, to have what I have -- mercury sensitivity.  Since I have to avoid mercury in small traces (and large amounts like anyone would, of course, as well), it just made sense that he was going to do best hanging out with me for the rest of his life.  Or mine. 

What really showed the family the significance of this was when someone used a mercury-containing laundry product and then apparently touched O'Rio's head/face -- his third eyelids swelled, and his pupils dilated.  It was just so awful and concerning looking.  I thankfully understood what had happened and simply washed his face with safely laundered towels and safe water, and we settled in for the night and sleep, and he was 'back to baseline' in the morning. 

But when younger he'd been hyperactive and 'goofy'.  He was clumsy.  Sweet as can be and loved by everyone, but he took to his crate eventually and didn't like coming in the house.  They didn't know why -- they attributed it to things they knew of, but they did not yet know what they had not yet learned, like we all experience.  Once they learned, after I learned, it was too difficult to go through what was needed to avoid traces of mercury at that point in their busy, active lives and I offered to take him with me in life. Think about dogs you know, or horses, people, rabbits, cats --- is anyone hyperactive and with attention an focus problems? Could it be they have dysautonomia as a symptom of what underlying is causing the nervous sytem to be disrupted?  And what could that be?  (More about THAT, below, where I'll link you to another topic at Lumigrate).

www.youtube.com/watch

Published on Feb 20, 2016

 
 

Dysautonomia or unbalance autonomic nervous system in animals is discussed in general as to cause, types of diseases and treatment using Veterinary Somato-Visceral Therapy (VSV), and Frequency Specific Low Level Laser therapy (VL3T), go to: http://vomtech.com/


From Chronic Fatigue Syndrome to Fibromyalgia to POTS to Success -- One Woman's Journey Through the Medical Profession is a topic at Health Rising dot org I suggest you take the link and time / energy to go read over and look around at the website.  I have other topics on Lumigrate where I link to and strongly suggest using Health Rising dot org as a tool for education.  

www.healthrising.org/blog/2013/08/20/from-chronic-fatigue-syndrome-to-fibromyalgia-to-pots-to-success-one-womans-journey-through-the-medical-profession/

I want to provide what was at the end of the thread at that link:  

Next up

Lauren Stiles

Lauren Stiles

Lauren’s POTSgrrl blog is a gold mine of good information on POTS, Sjögren’s Syndrome, and autonomic nervous system dysfunction, and we’re going to continue mining it. Lauren highlighted how important patient education is in these disorders, and with that in mind we’re going to ask: “Could I have autonomic nervous system dysfunction, POTS, or  Sjögren’s Syndrome?”, If the answer to that is yes, we’ll see what one very informed patient, Lauren, suggests you might do next.

Dysautonomia International

Dysautonomia International

We’ll also be looking closer at Lauren’s unusual treatment approach which  paid off – not with complete health –but with very substantial gains.

In 2012 Lauren created a non-profit; Dysautonomia International to support research and foster a better understanding of the often hidden autonomic nervous system disorders among us. The Dysautonomia International website offers information on POTS, doctors that specialize in diagnosing and treating autonomic disorders, and ways to get involved with research.


 LAST BUT NOT LEAST, the afore-promised link to the other topic at Lumigrate which I really want you, if you've gotten this far, to go and read, and consider taking the time to study the 'paradigm changing' information presented via the German doctor's teachings I covered as I learned in the summer of 2017. 

www.lumigrate.com/forums/internet-connections-and-activism-medical-and-beyond/social-media-websites-political-informat

Similarly, I'm going to be suggesting this thread / topic as a resource there for people to learn about the basics of dysautonomia ..... the topic covers the sources Dr. Kessler suggests, but this topic expands upon that to include information I think is really well done and helpful if wishing to understand what's causing our overall health challenges or wellness if we're so lucky to have pulled that off somehow in today's increasingly difficult world. 

Live and learn.  Learn and live better! ~ Mardy


Travis Reed's phone is area code 970, prefix 234 then 4703

Email is ortho dot travis dot reed at gmail dot com  

"Ortho-Bionomy: A gentle, painless structural approach to relieving pain and reducing the body's own abilities to heal from within"  (from his visually appealing business card)

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

This forum is provided to allow members of Lumigrate to share information and ideas. Any recommendations made by forum members regarding medical treatments, medications, or procedures are not endorsed by Lumigrate or practitioners who serve as Lumigrate's medical experts.

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