About

DYSAUTONOMIA

DYSAUTONOMIA

DYSAUTONOMIA

What is Dysautonomia?

What is Dysautonomia?

Dysautonomia is a general umbrella term for a group of disorders where the Autonomic Nervous System (the nervous system that controls all automatic body functions) doesn’t work the way it should.

The symptoms of Dysautonomia can vary from patient to patient and can be exacerbated depending on the type of Dysautonomia someone has. In general though, here are some of the common symptoms (again this is the an extremely brief list because this list could go on forever)

  • Shortness of Breath
  • Bradycardia/Tachycardia
  • Nausea/Vomiting
  • Brain Fog
  • Stomach and GI Upset
  • Fainting & Loss of Consciousness
  • Sweat Less than Normal or Not Sweat at All
  • Hypoglycemia
  • Dehydration
  • Dizziness
  • Headaches
  • GI Tract Paralysis
  • Dental Issues
  • Kidney Dysfunction
  • Adrenaline Surges
  • Inappropriate Temperature Regulation
  •  Blurry Vision
  • Difficulty Swallowing/Esophageal Dysmotility
  • Weakness
  • Brain Fog
  • Chest Pain
  • Balance Problems

The list could truly go on and on, but you get the idea. Anything that works automatically can be a problem that causes significant and disabling issues. If you are experiencing many of these symptoms, talk to your doctor about seeing an autonomic neurologist for testing.

For diagnosis, a neurologist who specializes in the autonomic nervous system (an autonomic neurologist) would be the best doctor to test and assess overall autonomic function via the Autonomic Reflex Screen test.

The Autonomic Reflex Screen is a series of 3 tests: the QSART, tilt table, and the Vasalva test (all done in an autonomic testing lab) and is the gold standard for autonomic testing.

There is also a separate test called the thermoregulatory sweat test which is also done but cannot be done on the same day.

These tests evaluate: cardiovagal, adrenergic, and sudomotor function (essentially different aspects of autonomic function).

autonomic function via the Autonomic Reflex Screen test.

The Autonomic Reflex Screen is a series of 3 tests: the QSART, tilt table and the Vasalva test (all done in an autonomic testing lab) and are the gold standard for autonomic testing.

There is also a separate test called the thermoregulatory sweat test which is also done, just cannot be done on the same day.

These tests evaluate: cardiovagal, adrenergic, and sudomotor function (essentially different aspects of autonomic nervous system).

The hardest part of testing, honestly, is probably finding a facility that has the equipment and the proper doctors to administer and interpret the tests.

Unfortunately, there are not many places that have both. To give you an idea, out of the whole west coast in the United States, there is only 1 clinic with certified clinicians and an autonomic lab. This clinic has 4 doctors out of the only 180 in the world that are certified. So you can see why just getting in to see a doctor about getting tested can be one of the most difficult parts!

As for the actual tests themselves, they can cause discomfort but are not hard or super painful tests. Below is a brief description of each type of test you would have done for an autonomic workup.

QSART

The QSART is a test that measures the autonomic nerves that control sweating. The test is useful in assessing autonomic nervous system disorders, peripheral neuropathies, and some types of pain disorders.

The test requires a mild electrical stimulation (it kind of feels like little bee stings) on the skin, which will stimulate sweat glands.

The QSART test measures the volume of sweat produced by this stimulation.

Tilt Table Test

In a tilt table test, you lie on a table that adjusts your body position from horizontal to vertical to simulate standing up.

The point of the test is to try to trigger your symptoms while your heart rate and blood pressure are being monitored. If you have symptoms while you’re in the upright position on the tilt table, the part of your nervous system that controls blood pressure and heart rate suddenly lowers them for a short time.

The test can tell your doctor if faulty brain signals are causing low blood pressure and is used to evaluate dysautonomia & syncope.

Vasalva

The Valsalva maneuver is a commonly used method of assessing normal or disordered autonomic control of blood pressure and heart rate. The test requires the maintenance of forced expiration against resistance for at least 7 and, optimally, for 15 seconds. This is done multiple times.

Performing the Valsalva maneuver tests the body’s ability to compensate for changes in the amount of blood that returns to the heart (preload). The changes in heart rate and blood pressure observed during this test are regulated by the autonomic nervous system.

Patients with autonomic dysfunction will therefore have changes in heart rate and/or blood pressure that differ from those expected in healthy patients.

Thermoregulatory Sweat Test

This test measures your ability to sweat in a special machine that has controlled temperature, humidity, and airflow regulation capabilities. Powder is put on your body, and the places you sweat will turn purple over time, while the places you don’t will not turn purple, making it clear where there may be issues occurring. The thermoregulatory sweat test is an important test for diagnosing certain autonomic and neurological disorders that result in abnormal body temperature regulation and sweat production.

If you sweat abnormally, a thermoregulatory sweat test, along with other tests, can identify whether the dysfunction is in your peripheral or central nervous system and how severe it is. This information helps your doctor make a diagnosis and determine whether or not you have dysautonomia as well.

There are many different reasons and ways someone could develop Dysautonomia, but there is no one cause that has been found and more research needs to be done.

Some are caused by underlying diseases and conditions while others are triggered by a virus or surgery. Not everyone finds an underlying condition for their Dysautonomia though. 

Some conditions that can be associated with Dysautonomia include: 

  • Amyloidosis
  • Antiphospholipid Syndrome
  • Celiac Disease
  • Charcot-Marie-Tooth Disease
  • Chiari Malformation
  • Chronic Inflammatory Demyelinating Polyneuropathy
  • Deconditioning
  • Delta Storage Pool Deficiency
  • Diabetes
  • Ehlers-Danlos Syndrome
  • Mast Cell Disorders
  • Mitchochondrial Diseases
  • Paraneoplastic Syndrome
  • Parkinson’s Disease
  • Heavy Metal Toxicity
  • Physical Trauma
  • Surgery 
  • Vitamin Deficiencies

All types of dysautonomia are different, but what they have in common is that they’re all affected by the dysfunction of the autonomic system.

Due to this, all types will cause varying symptoms with all automatic body functions.

Here is a list of some of the types of Dysautonomia (but not all of them):

  • Pandysautonomia
  • Autoimmune Autonomic Ganglionopathy
  • Postural Orthostatic Tachycardia Syndrome
  • Autonomic Neuropathy
  • Holmes-Adie Syndrome
  • Multiple System Atrophy
  • Familial Dysautonomia
  • Orthostatic Intolerance
  • Neurocardiogenic Syncope
  • Neurally Mediated Hypotension
  • Autonomic Dysreflexia
  • Baroreflex failure
  • Diabetic autonomic neuropathy
  • Pure Autonomic Failure

Unfortunately, there is currently no cure and the treatment is really just management of symptoms. Since there are a wide variety of symptoms as well as common comorbidities, each patient’s management plan is different and tailored to what their needs are. 

If you think you have a Dysautonomia type condition, seek help from your primary care physician and ask to be referred to an autonomic neurologist with access to an autonomic lab for testing. 

Some great Dysautonomia resources are: 

Dysautonomia International – a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness, and patient empowerment programs.

The Dysautonomia Project Bookcombines current publications from leaders in the field of autonomic disorders with explanations for doctors and patients about the signs and symptoms as well as some recommendations on how to manage them and who to go to for help.

What is Dysautonomia?

Dysautonomia is a general umbrella term for a group of disorders where the Autonomic Nervous System (the nervous system that controls all automatic body functions) doesn’t work the way it should.

The symptoms of Dysautonomia can vary from patient to patient and can be exacerbated depending on the type of Dysautonomia someone has. In general though, here are some of the common symptoms (again this is the an extremely brief list because this list could go on forever)

  • Shortness of Breath
  • Bradycardia/Tachycardia
  • Nausea/Vomiting
  • Brain Fog
  • Stomach and GI Upset
  • Fainting & Loss of Consciousness
  • Sweat Less than Normal or Not Sweat at All
  • Hypoglycemia
  • Dehydration
  • Dizziness
  • Headaches
  • GI Tract Paralysis
  • Dental Issues
  • Kidney Dysfunction
  • Adrenaline Surges
  • Inappropriate Temperature Regulation
  •  Blurry Vision
  • Difficulty Swallowing/Esophageal Dysmotility
  • Weakness
  • Brain Fog
  • Chest Pain
  • Balance Problems

The list could truly go on and on, but you get the idea. Anything that works automatically can be a problem that causes significant and disabling issues. If you are experiencing many of these symptoms, talk to your doctor about seeing an autonomic neurologist for testing.

For diagnosis, a neurologist who specializes in the autonomic nervous system (an autonomic neurologist) would be the best doctor to test and assess overall autonomic function via the Autonomic Reflex Screen test.

The Autonomic Reflex Screen is a series of 3 tests: the QSART, tilt table, and the Vasalva test (all done in an autonomic testing lab) and is the gold standard for autonomic testing.

There is also a separate test called the thermoregulatory sweat test which is also done but cannot be done on the same day.

These tests evaluate: cardiovagal, adrenergic, and sudomotor function (essentially different aspects of autonomic function).

autonomic function via the Autonomic Reflex Screen test.

The Autonomic Reflex Screen is a series of 3 tests: the QSART, tilt table and the Vasalva test (all done in an autonomic testing lab) and are the gold standard for autonomic testing.

There is also a separate test called the thermoregulatory sweat test which is also done, just cannot be done on the same day.

These tests evaluate: cardiovagal, adrenergic, and sudomotor function (essentially different aspects of autonomic nervous system).

The hardest part of testing, honestly, is probably finding a facility that has the equipment and the proper doctors to administer and interpret the tests.

Unfortunately, there are not many places that have both. To give you an idea, out of the whole west coast in the United States, there is only 1 clinic with certified clinicians and an autonomic lab. This clinic has 4 doctors out of the only 180 in the world that are certified. So you can see why just getting in to see a doctor about getting tested can be one of the most difficult parts!

As for the actual tests themselves, they can cause discomfort but are not hard or super painful tests. Below is a brief description of each type of test you would have done for an autonomic workup.

QSART

The QSART is a test that measures the autonomic nerves that control sweating. The test is useful in assessing autonomic nervous system disorders, peripheral neuropathies, and some types of pain disorders.

The test requires a mild electrical stimulation (it kind of feels like little bee stings) on the skin, which will stimulate sweat glands.

The QSART test measures the volume of sweat produced by this stimulation.

Tilt Table Test

In a tilt table test, you lie on a table that adjusts your body position from horizontal to vertical to simulate standing up.

The point of the test is to try to trigger your symptoms while your heart rate and blood pressure are being monitored. If you have symptoms while you’re in the upright position on the tilt table, the part of your nervous system that controls blood pressure and heart rate suddenly lowers them for a short time.

The test can tell your doctor if faulty brain signals are causing low blood pressure and is used to evaluate dysautonomia & syncope.

Vasalva

The Valsalva maneuver is a commonly used method of assessing normal or disordered autonomic control of blood pressure and heart rate. The test requires the maintenance of forced expiration against resistance for at least 7 and, optimally, for 15 seconds. This is done multiple times.

Performing the Valsalva maneuver tests the body’s ability to compensate for changes in the amount of blood that returns to the heart (preload). The changes in heart rate and blood pressure observed during this test are regulated by the autonomic nervous system.

Patients with autonomic dysfunction will therefore have changes in heart rate and/or blood pressure that differ from those expected in healthy patients.

Thermoregulatory Sweat Test

This test measures your ability to sweat in a special machine that has controlled temperature, humidity, and airflow regulation capabilities. Powder is put on your body, and the places you sweat will turn purple over time, while the places you don’t will not turn purple, making it clear where there may be issues occurring. The thermoregulatory sweat test is an important test for diagnosing certain autonomic and neurological disorders that result in abnormal body temperature regulation and sweat production.

If you sweat abnormally, a thermoregulatory sweat test, along with other tests, can identify whether the dysfunction is in your peripheral or central nervous system and how severe it is. This information helps your doctor make a diagnosis and determine whether or not you have dysautonomia as well.

There are many different reasons and ways someone could develop Dysautonomia, but there is no one cause that has been found and more research needs to be done.

Some are caused by underlying diseases and conditions while others are triggered by a virus or surgery. Not everyone finds an underlying condition for their Dysautonomia though. 

Some conditions that can be associated with Dysautonomia include: 

  • Amyloidosis
  • Antiphospholipid Syndrome
  • Celiac Disease
  • Charcot-Marie-Tooth Disease
  • Chiari Malformation
  • Chronic Inflammatory Demyelinating Polyneuropathy
  • Deconditioning
  • Delta Storage Pool Deficiency
  • Diabetes
  • Ehlers-Danlos Syndrome
  • Mast Cell Disorders
  • Mitchochondrial Diseases
  • Paraneoplastic Syndrome
  • Parkinson’s Disease
  • Heavy Metal Toxicity
  • Physical Trauma
  • Surgery 
  • Vitamin Deficiencies

All types of dysautonomia are different, but what they have in common is that they’re all affected by the dysfunction of the autonomic system.

Due to this, all types will cause varying symptoms with all automatic body functions.

Here is a list of some of the types of Dysautonomia (but not all of them):

  • Pandysautonomia
  • Autoimmune Autonomic Ganglionopathy
  • Postural Orthostatic Tachycardia Syndrome
  • Autonomic Neuropathy
  • Holmes-Adie Syndrome
  • Multiple System Atrophy
  • Familial Dysautonomia
  • Orthostatic Intolerance
  • Neurocardiogenic Syncope
  • Neurally Mediated Hypotension
  • Autonomic Dysreflexia
  • Baroreflex failure
  • Diabetic autonomic neuropathy
  • Pure Autonomic Failure

Unfortunately, there is currently no cure and the treatment is really just management of symptoms. Since there are a wide variety of symptoms as well as common comorbidities, each patient’s management plan is different and tailored to what their needs are. 

If you think you have a Dysautonomia type condition, seek help from your primary care physician and ask to be referred to an autonomic neurologist with access to an autonomic lab for testing. 

Some great Dysautonomia resources are: 

Dysautonomia International – a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness, and patient empowerment programs.

The Dysautonomia Project Bookcombines current publications from leaders in the field of autonomic disorders with explanations for doctors and patients about the signs and symptoms as well as some recommendations on how to manage them and who to go to for help.

As you can see below, Dysautonomia can impact every organ, and the many basic functions they would normally perform automatically.

A diagrammatic illustration of the role of the two arms of the autonomic nervous system.

The Conductor of the Autonomic Orchestra Copyright (c) 2012 Vinik.

As you can see below, Dysautonomia can impact every organ, and the many basic functions they would normally perform automatically.

A diagrammatic illustration of the role of the two arms of the autonomic nervous system.

The Conductor of the Autonomic Orchestra Copyright (c) 2012 Vinik.

THE SHOW

THE SHOW

THE SHOW

Welcome to the dys-FUNCTIONAL podcast, where we discuss how to function with Dysautonomia.

Dysautonomia is an umbrella term for a bunch of different conditions that all cause your automatic body functions such as breathing, heart rate, blood pressure, pupil dilation, digestion, and so on to not work correctly. 

Each week, we bring doctors, practitioners, caregivers, autonomic experts, and Dysautonomia warriors to the mic to discuss tips, strategies, the latest research, treatments, real-life stories, and answers to your questions to help you on your Dysautonomia journey. 

With host Haley James, a full-time chronic illness patient who has spent the last few years navigating life with multiple types of Dysautonomia, we find answers, community, laughs, and ways to find joy amidst the struggle. 

Whether you have POTS, AAG, FD, MSA, or any one of the numerous types of dysautonomia, this podcast is for you as we explore ways to navigate, function, and thrive with dysautonomia!

Welcome to the dys-FUNCTIONAL podcast, where we discuss how to function with Dysautonomia.

Dysautonomia is an umbrella term for a bunch of different conditions that all cause your automatic body functions such as breathing, heart rate, blood pressure, pupil dilation, digestion, and so on to not work correctly. 

Each week, we bring doctors, practitioners, caregivers, autonomic experts, and Dysautonomia warriors to the mic to discuss tips, strategies, the latest research, treatments, real-life stories, and answers to your questions to help you on your Dysautonomia journey. 

With host Haley James, a full-time chronic illness patient who has spent the last few years navigating life with multiple types of Dysautonomia, we find answers, community, laughs, and ways to find joy amidst the struggle. 

Whether you have POTS, AAG, FD, MSA, or any one of the numerous types of dysautonomia, this podcast is for you as we explore ways to navigate, function, and thrive with dysautonomia!

Welcome to the dys-FUNCTIONAL podcast, where we discuss how to function with Dysautonomia.

Dysautonomia is an umbrella term for a bunch of different conditions that all cause your automatic body functions such as breathing, heart rate, blood pressure, pupil dilation, digestion, and so on to not work correctly. 

Each week, we bring doctors, practitioners, caregivers, autonomic experts, and Dysautonomia warriors to the mic to discuss tips, strategies, the latest research, treatments, real-life stories, and answers to your questions to help you on your Dysautonomia journey. 

With host Haley James, a full-time chronic illness patient who has spent the last few years navigating life with multiple types of Dysautonomia, we find answers, community, laughs, and ways to find joy amidst the struggle. 

Whether you have POTS, AAG, FD, MSA, or any one of the numerous types of dysautonomia, this podcast is for you as we explore ways to navigate, function, and thrive with dysautonomia!

THE HOST

THE HOST

THE HOST

Hi! I’m Haley James, your host for the dys-FUNCTIONAL Podcast! 

I’m 29 and live in the San Francisco Bay Area in CA. If you ask me about my job, it’s being a full-time patient. Between appointments, treatments, managing symptoms, doing research, etc. it takes up a lot of my time and is my main focus (as I’m sure it is for many of you as well!).

That being said, through the amazingness of the internet I’m able to also be a healthy home interior designer, a blogger, The Chronic Collective (a chronic illness awareness clothing line), become a chronic illness legislative advocate, create 2 youtube channels, get to do street interviews through “Someone Needs To Hear Your Story”, and host two other podcasts: Health & Home and The Purpose-Filled Podcast!

I have 3 types of Dysautonomia: Autoimmune Autonomic Ganglionopathy (A.A.G.), Postural Orthostatic Tachycardia Syndrome (P.O.T.S.), and Autonomic Small Fiber Neuropathy (A.N./A.S.F.N.). With those comes the longgggg list of comorbid conditions I am sure you are also familiar with. 

Like many of you, my story and road to diagnosis was long and difficult. I tried to sum it up for you as much as possible below, so if you are interested read on! Or you can check out the first episode of the podcast where I share my story and experience. If it resonates with you or you find yourself saying, “Me Too!” let me know! I can’t wait to hear your story and get to know you!

Hi! I’m Haley James, your host for the dys-FUNCTIONAL Podcast! 

I’m 29 and live in the San Francisco Bay Area in CA. If you ask me about my job, it’s being a full-time patient. Between appointments, treatments, managing symptoms, doing research, etc. it takes up a lot of my time and is my main focus (as I’m sure it is for many of you as well!).

That being said, through the amazingness of the internet I’m able to also be a healthy home interior designer, a blogger, The Chronic Collective (a chronic illness awareness clothing line), become a chronic illness legislative advocate, create 2 youtube channels, get to do street interviews through “Someone Needs To Hear Your Story”, and host two other podcasts: Health & Home and The Purpose-Filled Podcast!

I have 3 types of Dysautonomia: Autoimmune Autonomic Ganglionopathy (A.A.G.), Postural Orthostatic Tachycardia Syndrome (P.O.T.S.), and Autonomic Small Fiber Neuropathy (A.N./A.S.F.N.). With those comes the longgggg list of comorbid conditions I am sure you are also familiar with. 

Like many of you, my story and road to diagnosis was long and difficult. I tried to sum it up for you as much as possible below, so if you are interested read on! Or you can check out the first episode of the podcast where I share my story and experience. If it resonates with you or you find yourself saying, “Me Too!” let me know! I can’t wait to hear your story and get to know you!

Hi! I’m Haley James, your host for the dys-FUNCTIONAL Podcast! 

I’m 29 and live in the San Francisco Bay Area in CA. If you ask me about my job, it’s being a full-time patient. Between appointments, treatments, managing symptoms, doing research, etc. it takes up a lot of my time and is my main focus (as I’m sure it is for many of you as well!).

That being said, through the amazingness of the internet I’m able to also be a healthy home interior designer, a blogger, The Chronic Collective (a chronic illness awareness clothing line), become a chronic illness legislative advocate, create 2 youtube channels, get to do street interviews through “Someone Needs To Hear Your Story”, and host two other podcasts: Health & Home and The Purpose-Filled Podcast!

I have 3 types of Dysautonomia: Autoimmune Autonomic Ganglionopathy (A.A.G.), Postural Orthostatic Tachycardia Syndrome (P.O.T.S.), and Autonomic Small Fiber Neuropathy (A.N./A.S.F.N.). With those comes the longgggg list of comorbid conditions I am sure you are also familiar with. 

Like many of you, my story and road to diagnosis was long and difficult. I tried to sum it up for you as much as possible below, so if you are interested read on! Or you can check out the first episode of the podcast where I share my story and experience. If it resonates with you or you find yourself saying, “Me Too!” let me know! I can’t wait to hear your story and get to know you!

A BIT OF MY STORY

Roughly 8 years ago, as I was finishing my last year of design school, I began getting sick whenever I ate food. It started off fairly mild, but as time went on, my symptoms got more and more prominent to the point that I could no longer excuse them away. After seeing a GI specialist and doing some invasive testing, I was told nothing was wrong and it was in my head. As much as I wanted to believe that, I knew it definitely wasn’t. Little did I know that this was just the beginning of a long chronic illness journey.

For the first almost 5 years, I was told everything from, “it’s anxiety,” “for attention,” “eating disorder,” “psycho-symptomatic,” “it’s all in your head” — the list goes on and on (I’m sure if you are reading this you probably know what I’m talking about). I was a full-time undiagnosed patient, meaning instead of working a job full-time, investigating my health became my unpaid full-time job. I spent almost all of my time researching (and on insurance calls, of course) trying to understand and figure out what was going on when it was clear the doctors weren’t going to be able to.

Finally, about to go into my 5th year of being undiagnosed and gaslit way too many times, I gave it one last shot. I researched a bunch and asked for one last test. I said if this isn’t it, then I’m done.

And this one test ended up not only being positive for 1 rare disease but 3!

After that, multiple feeding tubes, and a 3-week Mayo Clinic trip, the diagnoses came piling on.

Some of the diagnoses include: Autoimmune Autonomic Ganglionopathy (AAG), Gastroparesis, Chronic Intestinal Pseudo Obstruction (CIPO), Postural Orthostatic Tachycardia Syndrome (POTS), Esophageal Dysmotility, Intestinal Dysmotility, Autonomic Small Fiber Neuropathy (aSFN or A.N.), Mast Cell Activation Syndrome (MCAS), Heavy Metal Poisoning, Superior Mesenteric Artery Syndrome (SMAS), Hashimoto’s, Raynaud’s, Bilateral Neurogenic Thoracic Outlet Syndrome (nTOS), Hypothyroidism, Mold Illness, Severe Hypoglycemia, Medical P.T.S.D., Candida/SIBO/C-Diff, Celiac Disease, and the list keeps going.

I’m still on my feeding tube, saline infusions, experimental medications, plasma infusions, etc., and it’s all still a work in progress. I stay positive as much as possible, but there is no way around it; in all honesty, it’s hard, and I think it’s important to be real about that.

One of the main things that keeps me going through all of this has been my dream to use what I have gone through to make a positive difference in the lives of others in our community.

It’s with this heart and mission that the dys-FUNCTIONAL podcast was created! I hope that you find the community and support you are looking for here, and I cannot wait to have you be part of our community!

The symptoms of Dysautonomia can vary from patient to patient and can be exacerbated depending on the type of Dysautonomia someone has. In general though, here are some of the common symptoms (again this is the an extremely brief list as it could go on forever)

  • Shortness of Breath
  • Bradycardia/Tachycardia
  • Nausea/Vomiting
  • Brain Fog
  • Stomach and GI Upset
  • Fainting & Loss of Consciousness
  • Sweat Less than Normal or Not Sweat at All
  • Hypoglycemia
  • Dehydration
  • Dizziness
  • Headaches
  • GI Tract Paralysis
  • Dental Issues
  • Kidney Dysfunction
  • Adrenaline Surges
  • Inappropriate Temperature Regulation
  •  Blurry Vision
  • Difficulty Swallowing/Esophageal Dysmotility
  • Weakness
  • Chest Pain
  • Balance Problems

The list could truly go on and on, but you get the idea. Anything that works automatically can be a problem that causes significant and disabling issues. If you are experiencing many of these symptoms, talk to your doctor about seeing an autonomic neurologist for testing.

For diagnosis, a neurologist who specializes in the autonomic nervous system (an autonomic neurologist) would be the best doctor to test and assess overall autonomic function via the Autonomic Reflex Screen test.

The Autonomic Reflex Screen is a series of 3 tests: the QSART, tilt table, and the Vasalva test (all done in an autonomic testing lab) and is the gold standard for autonomic testing.

There is also a separate test called the thermoregulatory sweat test, which is also done but cannot be done on the same day.

These tests evaluate cardiovagal, adrenergic, and sudomotor function (essentially different aspects of autonomic function).

The hardest part of testing, honestly, is probably finding a facility that has the equipment and the proper doctors to administer and interpret the tests.

Unfortunately, there are not many places that have both. To give you an idea, out of the whole west coast in the United States, there is only 1 clinic with certified clinicians and an autonomic lab. This clinic has 4 doctors out of the only 180 in the world that are certified. So you can see why just getting in to see a doctor about getting tested can be one of the most difficult parts!

As for the actual tests themselves, they can cause discomfort but are not hard or super painful tests. Below is a brief description of each type of test you would have done for an autonomic workup.

QSART

The QSART is a test that measures the autonomic nerves that control sweating. The test is useful in assessing autonomic nervous system disorders, peripheral neuropathies, and some types of pain disorders.

The test requires a mild electrical stimulation (it kind of feels like little bee stings) on the skin, which will stimulate sweat glands.

The QSART test measures the volume of sweat produced by this stimulation.

Tilt Table Test

In a tilt table test, you lie on a table that adjusts your body position from horizontal to vertical to simulate standing up.

The point of the test is to try to trigger your symptoms while your heart rate and blood pressure are being monitored. If you have symptoms while you’re in the upright position on the tilt table, the part of your nervous system that controls blood pressure and heart rate suddenly lowers them for a short time.

The test can tell your doctor if faulty brain signals are causing low blood pressure and is used to evaluate dysautonomia & syncope.

Vasalva

The Valsalva maneuver is a commonly used method of assessing normal or disordered autonomic control of blood pressure and heart rate. The test requires the maintenance of forced expiration against resistance for at least 7 and, optimally, for 15 seconds. This is done multiple times.

Performing the Valsalva maneuver tests the body’s ability to compensate for changes in the amount of blood that returns to the heart (preload). The changes in heart rate and blood pressure observed during this test are regulated by the autonomic nervous system.

Patients with autonomic dysfunction will therefore have changes in heart rate and/or blood pressure that differ from those expected in healthy patients.

Thermoregulatory Sweat Test

This test measures your ability to sweat in a special machine that has controlled temperature, humidity, and airflow regulation capabilities. Powder is put on your body, and the places you sweat will turn purple over time, while the places you don’t will not turn purple, making it clear where there may be issues occurring. The thermoregulatory sweat test is an important test for diagnosing certain autonomic and neurological disorders that result in abnormal body temperature regulation and sweat production.

If you sweat abnormally, a thermoregulatory sweat test, along with other tests, can identify whether the dysfunction is in your peripheral or central nervous system and how severe it is. This information helps your doctor make a diagnosis and determine whether or not you have dysautonomia as well.

There are many different reasons and ways someone could develop Dysautonomia, but there is no one cause that has been found and more research needs to be done.

Some are caused by underlying diseases and conditions while others are triggered by a virus or surgery. Not everyone finds an underlying condition for their Dysautonomia though. 

Some conditions that can be associated with Dysautonomia include: 

  • Amyloidosis
  • Antiphospholipid Syndrome
  • Celiac Disease
  • Charcot-Marie-Tooth Disease
  • Chiari Malformation
  • Chronic Inflammatory Demyelinating Polyneuropathy
  • Deconditioning
  • Delta Storage Pool Deficiency
  • Diabetes
  • Ehlers-Danlos Syndrome
  • Mast Cell Disorders
  • Mitchochondrial Diseases
  • Paraneoplastic Syndrome
  • Parkinson’s Disease
  • Heavy Metal Toxicity
  • Physical Trauma
  • Surgery 
  • Vitamin Deficiencies

All types of dysautonomia are different, but what they have in common is that they all are affected by the dysfunction of the autonomic system.

Due to this, all types will cause varying symptoms with all automatic body functions.

Here is a list of some of the types of Dysautonomia (but not all of them):

  • Pandysautonomia
  • Autoimmune Autonomic Ganglionopathy
  • Postural Orthostatic Tachycardia Syndrome
  • Autonomic Neuropathy
  • Holmes-Adie Syndrome
  • Multiple System Atrophy
  • Familial Dysautonomia
  • Orthostatic Intolerance
  • Neurocardiogenic Syncope
  • Neurally Mediated Hypotension
  • Autonomic Dysreflexia
  • Baroreflex failure
  • Diabetic autonomic neuropathy
  • Pure Autonomic Failure

Unfortunately, there is currently no cure and the treatment is really just management of symptoms. Since there are a wide variety of symptoms as well as common comorbidities, each patient’s management plan is different and tailored to what their needs are. 

If you think you have a Dysautonomia type condition, seek help from your primary care physician and ask to be referred to an autonomic neurologist with access to an autonomic lab for testing. 

Some great Dysautonomia resources are: 

Dysautonomia International – a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness and patient empowerment programs.

The Dysautonomia Project Bookcombines current publications from leaders in the field of autonomic disorders with explanations for doctors and patients about the signs and symptoms as well as some recommendations on how to manage them and who to go to for help.

Roughly 8 years ago, as I was finishing my last year of design school, I began getting sick whenever I ate food. It started off fairly mild, but as time went on, my symptoms got more and more prominent to the point that I could no longer excuse them away. After seeing a GI specialist and doing some invasive testing, I was told nothing was wrong and it was in my head. As much as I wanted to believe that, I knew it definitely wasn’t. Little did I know that this was just the beginning of a long chronic illness journey.

For the first almost 5 years, I was told everything from, “it’s anxiety,” “for attention,” “eating disorder,” “psycho-symptomatic,” “it’s all in your head” — the list goes on and on (I’m sure if you are reading this you probably know what I’m talking about). I was a full-time undiagnosed patient, meaning instead of working a job full-time, investigating my health became my unpaid full-time job. I spent almost all of my time researching (and on insurance calls, of course) trying to understand and figure out what was going on when it was clear the doctors weren’t going to be able to.

Finally, about to go into my 5th year of being undiagnosed and gaslit way too many times, I gave it one last shot. I researched a bunch and asked for one last test. I said if this isn’t it, then I’m done.

And this one test ended up not only being positive for 1 rare disease but 3!

After that, multiple feeding tubes, and a 3-week Mayo Clinic trip, the diagnoses came piling on.

Some of the diagnoses include: Autoimmune Autonomic Ganglionopathy (AAG), Gastroparesis, Chronic Intestinal Pseudo Obstruction (CIPO), Postural Orthostatic Tachycardia Syndrome (POTS), Esophageal Dysmotility, Intestinal Dysmotility, Autonomic Small Fiber Neuropathy (aSFN or A.N.), Mast Cell Activation Syndrome (MCAS), Heavy Metal Poisoning, Superior Mesenteric Artery Syndrome (SMAS), Hashimoto’s, Raynaud’s, Bilateral Neurogenic Thoracic Outlet Syndrome (nTOS), Hypothyroidism, Mold Illness, Severe Hypoglycemia, Medical P.T.S.D., Candida/SIBO/C-Diff, Celiac Disease, and the list keeps going.

I’m still on my feeding tube, saline infusions, experimental medications, plasma infusions, etc., and it’s all still a work in progress. I stay positive as much as possible, but there is no way around it; in all honesty, it’s hard, and I think it’s important to be real about that.

One of the main things that keeps me going through all of this has been my dream to use what I have gone through to make a positive difference in the lives of others in our community.

It’s with this heart and mission that the dys-FUNCTIONAL podcast was created! I hope that you find the community and support you are looking for here, and I cannot wait to have you be part of our community!

The symptoms of Dysautonomia can vary from patient to patient and can be exacerbated depending on the type of Dysautonomia someone has. In general though, here are some of the common symptoms (again this is the an extremely brief list as it could go on forever)

  • Shortness of Breath
  • Bradycardia/Tachycardia
  • Nausea/Vomiting
  • Brain Fog
  • Stomach and GI Upset
  • Fainting & Loss of Consciousness
  • Sweat Less than Normal or Not Sweat at All
  • Hypoglycemia
  • Dehydration
  • Dizziness
  • Headaches
  • GI Tract Paralysis
  • Dental Issues
  • Kidney Dysfunction
  • Adrenaline Surges
  • Inappropriate Temperature Regulation
  •  Blurry Vision
  • Difficulty Swallowing/Esophageal Dysmotility
  • Weakness
  • Chest Pain
  • Balance Problems

The list could truly go on and on, but you get the idea. Anything that works automatically can be a problem that causes significant and disabling issues. If you are experiencing many of these symptoms, talk to your doctor about seeing an autonomic neurologist for testing.

For diagnosis, a neurologist who specializes in the autonomic nervous system (an autonomic neurologist) would be the best doctor to test and assess overall autonomic function via the Autonomic Reflex Screen test.

The Autonomic Reflex Screen is a series of 3 tests: the QSART, tilt table, and the Vasalva test (all done in an autonomic testing lab) and is the gold standard for autonomic testing.

There is also a separate test called the thermoregulatory sweat test, which is also done but cannot be done on the same day.

These tests evaluate cardiovagal, adrenergic, and sudomotor function (essentially different aspects of autonomic function).

The hardest part of testing, honestly, is probably finding a facility that has the equipment and the proper doctors to administer and interpret the tests.

Unfortunately, there are not many places that have both. To give you an idea, out of the whole west coast in the United States, there is only 1 clinic with certified clinicians and an autonomic lab. This clinic has 4 doctors out of the only 180 in the world that are certified. So you can see why just getting in to see a doctor about getting tested can be one of the most difficult parts!

As for the actual tests themselves, they can cause discomfort but are not hard or super painful tests. Below is a brief description of each type of test you would have done for an autonomic workup.

QSART

The QSART is a test that measures the autonomic nerves that control sweating. The test is useful in assessing autonomic nervous system disorders, peripheral neuropathies, and some types of pain disorders.

The test requires a mild electrical stimulation (it kind of feels like little bee stings) on the skin, which will stimulate sweat glands.

The QSART test measures the volume of sweat produced by this stimulation.

Tilt Table Test

In a tilt table test, you lie on a table that adjusts your body position from horizontal to vertical to simulate standing up.

The point of the test is to try to trigger your symptoms while your heart rate and blood pressure are being monitored. If you have symptoms while you’re in the upright position on the tilt table, the part of your nervous system that controls blood pressure and heart rate suddenly lowers them for a short time.

The test can tell your doctor if faulty brain signals are causing low blood pressure and is used to evaluate dysautonomia & syncope.

Vasalva

The Valsalva maneuver is a commonly used method of assessing normal or disordered autonomic control of blood pressure and heart rate. The test requires the maintenance of forced expiration against resistance for at least 7 and, optimally, for 15 seconds. This is done multiple times.

Performing the Valsalva maneuver tests the body’s ability to compensate for changes in the amount of blood that returns to the heart (preload). The changes in heart rate and blood pressure observed during this test are regulated by the autonomic nervous system.

Patients with autonomic dysfunction will therefore have changes in heart rate and/or blood pressure that differ from those expected in healthy patients.

Thermoregulatory Sweat Test

This test measures your ability to sweat in a special machine that has controlled temperature, humidity, and airflow regulation capabilities. Powder is put on your body, and the places you sweat will turn purple over time, while the places you don’t will not turn purple, making it clear where there may be issues occurring. The thermoregulatory sweat test is an important test for diagnosing certain autonomic and neurological disorders that result in abnormal body temperature regulation and sweat production.

If you sweat abnormally, a thermoregulatory sweat test, along with other tests, can identify whether the dysfunction is in your peripheral or central nervous system and how severe it is. This information helps your doctor make a diagnosis and determine whether or not you have dysautonomia as well.

There are many different reasons and ways someone could develop Dysautonomia, but there is no one cause that has been found and more research needs to be done.

Some are caused by underlying diseases and conditions while others are triggered by a virus or surgery. Not everyone finds an underlying condition for their Dysautonomia though. 

Some conditions that can be associated with Dysautonomia include: 

  • Amyloidosis
  • Antiphospholipid Syndrome
  • Celiac Disease
  • Charcot-Marie-Tooth Disease
  • Chiari Malformation
  • Chronic Inflammatory Demyelinating Polyneuropathy
  • Deconditioning
  • Delta Storage Pool Deficiency
  • Diabetes
  • Ehlers-Danlos Syndrome
  • Mast Cell Disorders
  • Mitchochondrial Diseases
  • Paraneoplastic Syndrome
  • Parkinson’s Disease
  • Heavy Metal Toxicity
  • Physical Trauma
  • Surgery 
  • Vitamin Deficiencies

All types of dysautonomia are different, but what they have in common is that they all are affected by the dysfunction of the autonomic system.

Due to this, all types will cause varying symptoms with all automatic body functions.

Here is a list of some of the types of Dysautonomia (but not all of them):

  • Pandysautonomia
  • Autoimmune Autonomic Ganglionopathy
  • Postural Orthostatic Tachycardia Syndrome
  • Autonomic Neuropathy
  • Holmes-Adie Syndrome
  • Multiple System Atrophy
  • Familial Dysautonomia
  • Orthostatic Intolerance
  • Neurocardiogenic Syncope
  • Neurally Mediated Hypotension
  • Autonomic Dysreflexia
  • Baroreflex failure
  • Diabetic autonomic neuropathy
  • Pure Autonomic Failure

Unfortunately, there is currently no cure and the treatment is really just management of symptoms. Since there are a wide variety of symptoms as well as common comorbidities, each patient’s management plan is different and tailored to what their needs are. 

If you think you have a Dysautonomia type condition, seek help from your primary care physician and ask to be referred to an autonomic neurologist with access to an autonomic lab for testing. 

Some great Dysautonomia resources are: 

Dysautonomia International – a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness and patient empowerment programs.

The Dysautonomia Project Bookcombines current publications from leaders in the field of autonomic disorders with explanations for doctors and patients about the signs and symptoms as well as some recommendations on how to manage them and who to go to for help.

Roughly 8 years ago, as I was finishing my last year of design school, I began getting sick whenever I ate food. It started off fairly mild, but as time went on, my symptoms got more and more prominent to the point that I could no longer excuse them away. After seeing a GI specialist and doing some invasive testing, I was told nothing was wrong and it was in my head. As much as I wanted to believe that, I knew it definitely wasn’t. Little did I know that this was just the beginning of a long chronic illness journey.

For the first almost 5 years, I was told everything from, “it’s anxiety,” “for attention,” “eating disorder,” “psycho-symptomatic,” “it’s all in your head” — the list goes on and on (I’m sure if you are reading this you probably know what I’m talking about). I was a full-time undiagnosed patient, meaning instead of working a job full-time, investigating my health became my unpaid full-time job. I spent almost all of my time researching (and on insurance calls, of course) trying to understand and figure out what was going on when it was clear the doctors weren’t going to be able to.

Finally, about to go into my 5th year of being undiagnosed and gaslit way too many times, I gave it one last shot. I researched a bunch and asked for one last test. I said if this isn’t it, then I’m done.

And this one test ended up not only being positive for 1 rare disease but 3!

After that, multiple feeding tubes, and a 3-week Mayo Clinic trip, the diagnoses came piling on.

Some of the diagnoses include: Autoimmune Autonomic Ganglionopathy (AAG), Gastroparesis, Chronic Intestinal Pseudo Obstruction (CIPO), Postural Orthostatic Tachycardia Syndrome (POTS), Esophageal Dysmotility, Intestinal Dysmotility, Autonomic Small Fiber Neuropathy (aSFN or A.N.), Mast Cell Activation Syndrome (MCAS), Heavy Metal Poisoning, Superior Mesenteric Artery Syndrome (SMAS), Hashimoto’s, Raynaud’s, Bilateral Neurogenic Thoracic Outlet Syndrome (nTOS), Hypothyroidism, Mold Illness, Severe Hypoglycemia, Medical P.T.S.D., Candida/SIBO/C-Diff, Celiac Disease, and the list keeps going.

I’m still on my feeding tube, saline infusions, experimental medications, plasma infusions, etc., and it’s all still a work in progress. I stay positive as much as possible, but there is no way around it; in all honesty, it’s hard, and I think it’s important to be real about that.

One of the main things that keeps me going through all of this has been my dream to use what I have gone through to make a positive difference in the lives of others in our community.

It’s with this heart and mission that the dys-FUNCTIONAL podcast was created! I hope that you find the community and support you are looking for here, and I cannot wait to have you be part of our community!

I would genuinely love to get to know you!

Please don’t be shy, Come say hi!

Each week, we bring doctors, practitioners, caregivers, autonomic experts, and Dysautonomia warriors to the mic to discuss tips, strategies, the latest research, treatments, real life stories and answers to your questions to help you figure out how to function with dysautonomia.

Each week, we bring doctors, practitioners, caregivers, autonomic experts, and Dysautonomia warriors to the mic to discuss tips, strategies, the latest research, treatments, real life stories and answers to your questions to help you figure out how to function with dysautonomia.

Each week, we bring doctors, practitioners, caregivers, autonomic experts, and Dysautonomia warriors to the mic to discuss tips, strategies, the latest research, treatments, real life stories and answers to your questions to help you figure out how to function with dysautonomia.

© dys-FUNCTIONAL Podcast & It’s Haley James 2023

© dys-FUNCTIONAL Podcast & It’s Haley James 2023

THESE EMAILS I SEND – I PROMISE – FEEL LIKE LETTERS FROM A FRIEND

Come Be Part Of The Bloom!

I love connecting with people in this community! It’s my favorite thing that I get to do and this is one of the places I love to do it!

I only ever want to send you things I truly believe in my heart will serve you, support you, equip you, empower you and make you feel seen, heard & loved! Which to me means 0% spam & 100% all good things!

As a welcome gift, you’ll instantly unlock a 10% discount on your first store purchase, gain immediate access to my most popular free guide and of course friendship with me and this community! We can’t wait to have you!

THESE EMAILS I SEND – I PROMISE – FEEL LIKE LETTERS FROM A FRIEND

Come Be Part Of The Bloom!

I love connecting with people in this community! It’s my favorite thing that I get to do and this is one of the places I love to do it!

I only ever want to send you things I truly believe in my heart will serve you, support you, equip you, empower you and make you feel seen, heard & loved! Which to me means 0% spam & 100% all good things!

As a welcome gift, you’ll instantly unlock a 10% discount on your first store purchase, gain immediate access to my most popular free guide and of course friendship with me and this community! We can’t wait to have you!

THESE EMAILS I SEND – I PROMISE – FEEL LIKE LETTERS FROM A FRIEND

Come Be Part Of
The Bloom!

I love connecting with people in this community! It’s my favorite thing that I get to do and this is one of the places I love to do it!

I only ever want to send you things I truly believe in my heart will serve you, support you, equip you, empower you and make you feel seen, heard & loved! Which to me means 0% spam & 100% all good things!

As a welcome gift, you’ll instantly unlock a 10% discount on your first store purchase, gain immediate access to my most popular free guide and of course friendship with me and this community! We can’t wait to have you!

YAY! I'm So excited to have you joining this community!

As promised here is your first welcome gift! Just click below and it’ll automatically download!

Also, be sure to check your email to make sure you received my welcome email that has your 10% off discount code so you can get another gift for yourself because you deserve it!

YAY! I'm So excited to have you joining this community!

As promised here is your first welcome gift! Just click below and it’ll automatically download!

Also, be sure to check your email to make sure you received my welcome email that has your 10% off discount code so you can get another gift for yourself because you deserve it!

YAY! I'm So excited to have you joining this community!

As promised here is your first welcome gift! Just click below and it’ll automatically download!

Also, be sure to check your email to make sure you received my welcome email that has your 10% off discount code so you can get another gift for yourself because you deserve it!