Skip to main content

Dysautonomia: Invisible, Often Misdiagnosed

I'm a mother of four, and my professional background is in IT management and security. I've been on medical leave since 2011.

dysautonomia-a-quick-overview-of-this-often-misdiagnosed-condition

What Is Dysautonomia?

Dysautonomia, a disorder of the Autonomic Nervous System affecting multiple organ systems in the body, is a condition that is not well understood in the medical community. Patients often present with a plethora of symptoms, including fatigue and fainting, that are difficult to explain through a normal medical workup. Often told they have anxiety, migraines, or Fibromyalgia. Most patients with Dysautonomia remain undiagnosed or go for many months or years without being properly diagnosed.

This article is designed to create awareness about Dysautonomia so that together we can spread the message. Perhaps you or someone you know suffers from a form of Dysautonomia. If so, I'd love to hear from you. If not, I'd love to hear from you, too.

Dysautonomia Is Underdiagnosed

This condition is greatly underdiagnosed. A recent study suggested that more than 50% of people with migraine headaches and/or Chronic Fatigue Syndrome (CFS) have some form of Dysautonomia. Although I'm not sure how accurate that estimate is, I am confident that there are many people who have Dysautonomia who remain undiagnosed today. What's more, the doctor I am currently working with at the Cleveland Clinic says he is seeing 20 new cases of Dysautonomia a week! My hope is to help spread the word about Dysautonomia and be a part of research efforts in finding the cause and cure.

dysautonomia-a-quick-overview-of-this-often-misdiagnosed-condition

My Story: Acute Onset Following a Root Canal

Last September, following a root canal, I began having weird symptoms including tingling/numbness, faintness, heart palipitations, seizure/attack-like episodes and other symptoms that landed me in the hospital. My primary doctor at the time ran several tests including blood work, an MRI, Chest X-ray, Stress test and Spinal Tap.

After having all normal results he explained that I was just having panic attacks. He then wrote a prescription for Xanax and told me to see a counselor.

The night I was discharged from the hospital as I stood up to get dressed, my nurse came running into the room in a panic because my heart rate jumped from 65 to 140. The nurse knew something was wrong but didn't know a 30+ bpm jump in heart rate upon standing is a clinical indicator of POTS, one form of Dysautonomia. Instead the nurse told me, "You don't have to go home if you don't want to." It was as if the nurse knew I shouldn't go home, but what else was I to do?

Get back to my normal life?

After being discharged from the hospital everyone expected me to recover and return to my normal life. (Up at dawn, armed with a pot of coffee, headed to the office after dropping the kids off at school, back to back meetings, a power lunch combined with a quick trip to the store to pick up a needed item at home, conference calls on the hands free system in my car while driving, running a few minutes late to take the kids to their after school activities while I return emails and text messages on my iPad/iPhone, rushing home to whip up a nutritious dinner before I head off to music practice at church, and then back home to debrief with my hubby for a few minutes of "couch time" all before the two hours of returning emails and prepping documents on the computer before bed.) I expected to recover and return to my normal life.

But God had a different plan in store for me.

I continued to have attacks and as time went on my symptoms especially of fatigue and faintness worsened. I also became remarkably hypersensitive to light, touch, sound, motion and activity.

One time during that first week I tried to go to Target with my husband to pick up a few needed items. The wind on my skin getting out of the car was like a million pin pricks on my face. I held his hand and kept my head down just to enter the store because my brain couldn't process all the stimulation of cars moving, people walking, colors, sights and sounds. It was as if opening my eyes would be a million more pin pricks in my brain.

Once inside, the fluorescent lights were blinding and the many noises (such as background music, people talking, carts rolling, etc.) were an overwhelming clamor for my attention. I kept worrying that I'd walk into someone pushing a cart because my brain was not processing the incoming sensory information as fast as the people around me were moving. On top of it all, within a few minutes I became so weak and exhausted that I asked my husband to take me back to the car because I felt as if my knees would buckle. I was going to faint.

I spent the next 20 minutes in the quiet car waiting alone as my husband finished our shopping. Although I was relieved to be free from the overpowering din, I realized this was not normal. I had to do something.

Scroll to Continue

Read More From Youmemindbody

I changed my primary doctor.

After changing doctors I began intensive research about my symptoms and engaged in discussion with my new medical team (including a brilliant primary care doc who specializes in research, a cardiologist willing to discuss and explore my condition and neurologist who said, "anxiety is a diagnosis of exclusion").

I was diagnosed in November with Dysautonomia, a disorder of the Autonomic Nervous System (ANS). I actually have two types of Dysautonomia: POTS (Postural Orthostatic Tachycardia Syndrome) and Neurally Mediated Syncope (NMS) along with other related conditions such as Migraines, Sleep Apnea, Fibromyalgia, Irritable Bowel Syndrome, and more. After another almost week-long visit to the hospital with more tests and medication trials I was relieved to know there was a physiological cause.

It wasn't all in my head.

The first half of the battle was finding a diagnosis. The second half of the battle is not so easy—finding a remedy.

One problem for me was finding a doctor who understands Dysautonomia. To my knowledge there are no doctors who specialize in autonomic nervous system disorders in the Tampa Bay region of Florida where I live. In fact, only about half of the doctors I've met have even heard of Dysautonomia, which is one of the reasons why I imagine it is greatly under diagnosed.

I am thankful to have found Dr. Randy Thompson, M.D. who has opened the Center for Autonomic Disorders in Pensacola, Florida, an 8.5 hour drive from my home. It is well worth the trip as he not only specializes in Dysautonomia, he has it himself.

I've also had a full autonomic workup with Dr. Fred Jaeger and Dr. Fetnat Fouad at the Cleveland Clinic in Cleveland, Ohio. It is a blessing to have local doctors that are willing to work with my out-of-town doctors. That being said, the biggest problem with Dysautonomia is that even the doctors who specialize in autonomic disorders don't understand what causes them. And, although there is a possibility I could go into remission, there is no cure.

Here's what we do know:

- the problem is a dysfunction of the Autonomic Nervous System (ANS)

- the ANS controls all the involuntary functions of the body (things like heart rate, blood pressure, blood vessel dialation, tear ducts, etc.)

- there is a non-life threatening lack of cerebral blood flow that creates many symptoms

- upon orthostasis (sitting or standing upright) my blood doesn't pump back up to my heart the way it should

- upon moving from a lying down position to a sitting up position I pool about 37% of my blood in my legs (less than 10% is normal)

- upon sitting up my cardiac output also decreases by 42% - therefore a significant drop in oxygen to the brain and other vital organs.

This creates a myriad of problems (see "My Diagnosis and Symptoms" below) but the biggest two are:

1. Chronic Faintness- feeling as if I'm going to pass out

2. Chronic Fatigue- due at least in part to the abnormal increase in heart rate upon sitting up or standing

I haven't been able to work or drive much since the onset. Since then I've had what I call "good days" and "bad days." If you know me, and talk with me, it might be helpful to start by asking, "What kind of day are you having?" so that you'll know how much energy I'll have for talking, visiting, socializing, etc.

On Good days- I can do normal activities but I get tired very easily.

On O.K. days- I can do some normal activities but have to rest every few minutes.

On Bad days- I am in bed with a low blood pressure (i.e. 85/55) and I feel very faint. On these days I load salt and fluids as to avoid another trip to the hospital.

I spend many days in my PJs in bed feeling much like I've come down with a bad case of the flu. Sometimes I wonder if my friends, colleagues and family think I'm just lazy, but honestly I don't worry too much about that. I simply don't have the energy to worry. I also don't have energy to miss much. Some people wonder if I'm bored with nothing to do at home and frankly I'm not bored at all. It takes a lot of energy for me to do the most basic tasks so now I'm focused on the little things. Things like talking with my children about their day, getting a shower, making a cup of coffee, making a meal or getting groceries. (I've recently started driving myself to the local grocery store.)

"Thanksgiving" and "Prayer" are the antidote to worry. So I get to do a lot of things that my normal life didn't allow me to do. Today I'm thankful for being able to see, for being able to walk, for being able to hear, for being able to have a one on one conversation with my son. It is a beautiful thing to hear my children pray for me and I have been so blessed to appreciate the many things I used to take for granted. And what's more, I've been richly blessed by the love and support of family and friends.

I've lost count of the many meals delivered to my home since September 2011. I've also lost count of the number of people who have driven my children to the places they needed to go or helped drive me to places I needed to be. Network People, our business, is thriving despite my non-presence. (They are an incredible team.) And each day when the kids get home from school I'm waiting for them. If it is a "good day" I might even have a snack ready for them, but most days they are content to find me resting. My children have become real "helpers of the home," from lunch preparation to laundry folding. I can't tell you how many relationships have grown stronger through this season because I've also lost count. And, I can tell you who my "real friends" are. And most amazingly, their number is great.

So now my focus is on...

- having more good days than bad days

- spending quality time with my family

- learning/sharing as much as I can about Dysautonomia and

- glorifying God

Update: Fall 2014

Some time has passed since I first published my story. My health has not improved much but my quality of life has improved greatly. I still spend 50% of my time suffering in bed, but now the upright time I spend is much more functional. On good days I can drive short distances on smaller back roads. I really can't do much in the way of shopping and I have to limit my social interactions and exposure to certain foods, chemicals and fragrances. I now use many aides and tools such as a seat cane, noise canceling ear buds and my emergency packet to help me adjust to this new normal.

I've learned a lot too. At the end of 2012 I was diagnosed with Mast Cell Activation Syndrome and have now co-authored a number of medical newsletters with top physicians. And in a few days we (with the help of about 200 volunteers physician, patients and community leaders from more than a dozen states) will launch The Dysautonomia Project, a not-for-profit organization aimed at speeding the time to diagnosis and treatment at the community level.

Help us spread the word!

  • The Dysautonomia Project
    Creating a better dialogue between patient and physician to speed the time to diagnosis and treatment of patients with dysautonomia. Join as a free member. It only takes 30 seconds!
dysautonomia-a-quick-overview-of-this-often-misdiagnosed-condition

Dysautonomia is a Category of Disorders of the ANS

A Grossly Simplified Overview

If you hear someone has cancer, you immediately wonder, "What type?" , "Has it spread?", "Is it life-threatening?". Just like there are many forms of cancer (benign, malignant, metasticized, etc.) there are also many forms of Dysautonomia.

Dysautonomia is any disease, disorder or dysfunction of the Autonomic Nervous System (ANS.)

The nervous system can be divided in two main parts:

- Motor Nervous System (the voluntary nervous system- all the things you control such as gripping the steering wheel, moving your foot, etc.)

- Autonomic Nervous System (the involuntary nervous system- all the things that happen without you thinking about it such as your heart rate, blood pressure, digestion, neurotransmitter release, blood vessel dialation/constriction, breathing, salivary glands, etc.) It is this part of the nervous system that is affected in Dysautonomia.

Dysautonomia is ofen confused as an auto-immune disorder (because of the term, "auto" in the name) it is not an auto-immune system problem, it is a central and peripheral nervous system problem that can be transient, chronic or life-threatening affecting multiple organ systems in the body.

Dysautonomia can be divided into two main groups: "Primary" (the main diagnosis) and "Secondary" (where Dysautonomia is secondary to another condition such as diabetes, Parkinsons, cancer, a spinal cord injury, etc.) If the condition is secondary, prognosis depends on the degree to which the primary condition is successfully treated.

In both Primary and Secondary Dysautonomia, forms can be sub divided into "Degenerative" and "Non-Degenerative". Most often, "degenerative" is considered life-threatening while "non-degenerative" is not. Here is a brief sample of the types of Degenerative and Non-Degenerative Forms of Dysautonomia:

DEGENERATIVE

- Familial Dysautonomia (FD)

- Pure Autonomic Failure (PAF)

- Multiple System Atrophy (MSA)

NON-DEGENERATIVE

- Neurally Mediated Syncope (NMS)

- POTS (Postular Orthostatic Tachycardia Syndrome)

- Orthostatic Hypotension

- Inappropriate Sinus Tachycardia (IST)

- Dopamine Beta Hydroxylase Deficiency

The prognosis for each of these conditions vary and usually depend on a number of factors including age of onset, severity of the condition and frequency of symptoms. For instance a patient diagnosed with POTS between the ages of 15-25 is likely to go into remission within 3-5 years while a patient diagnosed with POTS in their 40's is less likely to experience remission. Likewise, a patient with PAF who is experiencing mild symptoms has a greater life expectancy than a patient with severe PAF symptoms.

A great way to start learning more about any of these is to find them on Wikipedia which gives an easy to understand overview written mostly in layman's terms. Another great resource is DINET.org (Dysautonomia Information Network) also known as POTSplace.org. This site is also a great place for Dysautonomia patients to connect with others on the DINET Forum.

"Better To Look Good Than Feel Good" - My Diagnosis: POTS and NMS

dysautonomia-a-quick-overview-of-this-often-misdiagnosed-condition

My husband, Nate, and I have a new saying, "It is better to look good than to feel good." We say this with a bit of a chuckle because so many people will say to me, "You look good. You must be feeling better." But we both know that looking good on the outside has little to do with how I'm feeling on the inside. Because this condition affects the ANS, a part of the nervous system we don't control and see, this is a common situation for anyone with Dysautonomia.

I have been diagnosed with two forms of Dysautonomia:

Neurally Mediated Syncope (NMS, pronounced Sin-co-pee- meaning "to faint").

and

Postural Orthostatic Tachycardia Syndrome (a.k.a. POTS)

I also have several other diagnoses that are secondary to Dysautonomia such as Sleep Apnea, Fibromyalgia and Tinnitus that are described in the "POTS Syndrome" section below.

NMS: Neurally Mediated Syncope (also know as Neurocardiogenic Syncope, Reflex Syncope or Vasovagal Syncope) is the most common form of dysautonomia. NMS is also the most common form of syncope although some people with NMS never experience fainting but rather experience faintness or pre syncope. NMS is usually transient and patients regain consciousness by lying down. In this supine position blood flow is restored to the brain and consciousness is regained. Patients with neurally mediated syncope have peripheral blood vessel dilation and an abnormal decrease in blood pressure within a short period of time after assuming an upright position. Symptoms of NMS include: lightheadedness, nausea,

weakness, sweating, ringing of the ears (tinnitus), impaired concentration and/or visual disturbances such as seeing spots and tunnel vision.

(note: I have mild NMS)

POTS: Postural Orthostatic Tachycardia Syndrome is a condition of Dysautonomia involving multiple organ systems characterized by marked orthostatic intolerance. Upon moving from a supine (lying down) position to an upright position POTS patients have a 30+ beat per minute (bpm) increase in heart rate and an abnormal increase of circulating norepinepherine (a neurotransmitter) in the bloodstream. POTS is also characterized by a non-life threatening loss of cerebral blood flow that is responsible for many of the debilitating symptoms associated with an upright posture thus patients with POTS have a difficult time maintaining homeostasis upon changing position and some (like me) even have difficulty while sitting or lying down. Patients with POTS present with symptoms that can range from mild to severe where POTS is very debilitating. Patients with more pronounced cases cannot attend school, work or are completely incapacitated.

(Kelly's note: I have a form of POTS with severe pooling of blood and decreased cardiac output. At this time I am unable to work and have limited driving ability. See "symptoms" below.)

Chronic Fatigue is a common symptom of Dysautonomia

Chronic Fatigue is a common symptom of Dysautonomia

The Six Evil S's

Standing, Sights, Sounds, Stress, Showers and Sun

As I write this, I am in bed after returning home early from a dear friend's wedding. I regret that I had to leave early but my body simply hit a brick wall and could not stay to fully celebrate. I'm lying in bed now with earplugs in my ears to limit the sound of the kids playing in the other room. It is as if I have the flu (without the runny nose and cough, etc.) I feel like a mac truck has hit me and my body aches all over. You know that feeling when your ears are ringing? Imagine your toes, knees, legs, arms, neck, back and head also ringing. The funny thing is that a couple of hours before the wedding I rested so I felt good during the ceremony. Then as we waited at the reception for the bride and the groom while I was sitting at a table with friends enjoying their company and conversation I could feel my body going downhill. I can usually smile through it but at a certain point I can no longer cover up my symptoms and have to escape to a quiet place where I can lie down. The Six Evil S's are the worst triggers for me and make me feel very sick.

STANDING:

You know that feeling when you laugh and there is a surge of endorphines that make you smile, relax and feel good? Well imagine a similar chemical surge that has the opposite efffect: makes you feel exhausted, weak, lightheaded and anxious. This is the feeling I get every time I stand. The longer I stand, the worse it gets. If I stand still, within 3-9 minutes I will most likely faint. If I move around I can handle the feeling for a while but soon I will be so exhausted I have to sit or lie down. This "bad" feeling is caused in part by a chemical imbalance of Norepinepherine, a neurotransmitter and catecholamine, in my system. It is also caused by the abnormal increase in heart rate and decrease in blood pressure. Upon standing:

- my heart rate often increases abnormally high (i.e. from 65 to 110-160)

- my blood pressure sometimes drops abnormally low (i.e. from 110/70 to 60/40)

These unstable changes in HR and BP cause me to feel faint and fatigued. Even sitting up for significant periods of time (1-2 hours) will cause this feeling. The only remedy is time lying down and resting.

SIGHTS (lights & movement)

Perhaps one of the sharpest sensory experiences I have is when someone flashes a bright light in my eyes. Whether it is the reflection of the sun on a shiny piece of chrome, or a flashlight pointed at me in the dark, or the flash of a camera during a show, it is like a swift slap in the face to me except that the pain is happening on the inside. I attended the elementary Christmas play at our school last December where most of the parents/grandparents brought cameras to take pictures of their little loved ones. At one point the kindergarten class got up to sing and the non-stop flashing began. It was one of the most uncomfortable experiences I can remember. I literally had to cover my eyes with my hands because I could still see the flashes of light through my closed eyelids.

I have a similar experience with the following:

- Any really bright light or being outside on a very bright day

- Fluorescent lighting

- Flashes of sunlight through the trees as the car is driving down the road

- Emergency vehicle flashing lights

- Fireworks

- Explosions or high action on television or movies

Another sight that seems to really set me off is movement. Not when I move, but when other people or other things around me move and especially when there is lots of movement such as at a busy grocery store, a crowded theater lobby or a multi-lane traffic intersection at rush hour. This sight is not as disconcerting as the bright lights but instead causes me to hesitate because my brain can't seem to process all the information. This is the reason I've limited my driving to only short distances on roads with little traffic or no driving at all. On days when I'm not feeling well you might notice I'll wear sunglasses indoors. Although I wanted to be a movie star when I was young, I'm really not trying to act like a hot shot- just trying to protect my eyes from all the bright lights and movement.

SOUNDS

I also have a difficult time dealing with external sounds. Being in a loud, noisy room full of people talking is one of the most taxing for me. After a similar period of time (1-2 hours) I can no longer handle the noise that has become like a million little fiery darts hitting me in the head. I begin to be unable to concentrate on a single conversation and struggle to keep my eyes open. If you are with me you'll notice I move my head very little and look down a lot so as to block out all the external input. Sometimes I'll even wear earplugs. It is as if all my nerve endings are shot and aching in agony. My body will physically ache and become weak until I rest again. During these more difficult moments touch becomes very difficult. Holding a piece of paper feels like holding a razor blade. A gentle brush against my skin feels like coarse sandpaper. Funny thing is, I can enjoy listening to a TV show or a loud piece of music as long as it is the only sound requiring my attention. But if I'm trying to have a conversation with you and someone turns on background music, it is difficult for me to concentrate.

STRESS

If there is a deadline and people are counting on me to do something within a certain period of time I am stressed. Funny because I used to love deadlines. They used to help me get things done. Now if there is a deadline such as getting a child off by a certain time or having to prepare a meal so that we all can leave for some activity, I have difficulty getting through it. You'll notice I'll start breathing heavy and sometimes make mistakes because I can't process multiple pieces of information at a time. I used to juggle multiple activities/projects at a time all while managing our home, office and kids. Now it is one at a time and with great thought and caution.

SHOWERS

Possibly the worse enemy of POTS is the hot shower. You are standing up, hot water is hitting the skin attracting blood to the surface of the skin. The skin holds more blood vessels than any single organ in the body and with an already low venous return of blood to the heart this extra diversion of blood to the extremities is possibly the worse trigger for feeling badly. A few months ago I took a longer than usual shower (maybe 6-7 minutes). As I was putting on my robe following the shower I could tell my breathing was quite rapid so I checked my heart rate. It was 200. I immediately laid down and waited for it to return to normal. It is not uncommon for my heart rate to be well over 150 after getting out of the shower but I've learned to take shorter cooler showers which help me to stay in the mid to low 100s. Many times following a shower I need to rest in bed before doing anything. Nighttime showers have become very helpful- after all my husband doesn't want to snuggle with a wife who stinks. :)

SUN

Like a hot shower, the radiating heat of the sun draws blood to the vessels in my skin causing less total blood volume to be available for circulation. Recently I walked into the wellness center for another session with my exercise therapist. I had a short walk from the garage across the street to the gym. As I exited the garage walking in the heat of the sun I noticed my breathing became labored. I decided to check my heart rate using the heart rate monitor I wear daily on my wrist. As I entered the gym my heart rate was 152. I then started my workout on the recumbent bike. After a few minutes of exercise my heart rate dropped down to 135. Can you imagine that? Needless to say, I avoid heat and any length of time in the direct light of the sun.

Orthostatic Intolerance is the Trademark Symptom of Dysautonomia (adapted from Peter Rowe, M.D.)

Orthostatic Intolerance is the Trademark Symptom of Dysautonomia (adapted from Peter Rowe, M.D.)

From Fatigue to Fainting

POTS Symptoms

POTS is a syndrome. Unlike a disease, a syndrome is collection of signs and symptoms that commonly appear together without a known cause. And while there is little commonly known about POTS and other forms of Dysautonomia, there are several places (such as Vanderbilt University in Nashville, TN, and University of Texas Southwestern in Dallas) where studies are being done to help get closer to identifying a "cause."

This chart is an adaptation from Peter Rowe, M.D. at John's Hopkins Medicine who has done studies using the TTT with patients that have Chronic Fatigue Syndrome (CFS). Patients with marked Orthostatic Intolerance often present with a multitude of other symptoms including those on the chart. Interestingly, the two most common symptoms reported among POTS patients is Orthostatic Intolerance and Chronic Fatigue. In addition, POTS patients will commonly have some combination these other symptoms. Dr. Fred Jaeger, D.O., at Cleveland Clinic said, "the only thing normal about the POTS patient is that they all present differently." Each appears different in terms of their myriad of complaints, yet the underlying problem is similar.

Like others with Dysautonomia my symptoms become more pronounced when I stand or sit in an upright position or am in a loud crowded room with lots of people. Here is a list of most of my symptoms.

- Faintness

- Weakness upon standing

- Fatigue

- Brain Fog

- Hypersensitivity to Light, Sound, Touch & Motion

- Tinnitus (constant chronic ear ringing/ bilateral)

- Migraines (with and without aura)

- Shortness of Breath (hypoxia)

- Neurodeficit (memory loss/ depth perception difficulties)

- Parasethesia (peripheral and/or head and neck tingling/ numbness- like pins and needles)

- Digestive (GERD, Constipation, Diarrhea, Silent Reflux, Nausea)

- Brief Tremors

- Itchy Skin (peripheral)

- Low Body Temperature

- Hair loss

- Irregular Sweating

- Sleep Apnea / Insomnia

- Eardrum Spasms

- Abnormal thirst

- Visual disturbances including tunnel vision & blackouts

- Dry Eyes

- Salivary Issues

- Angina

- Ear pain

(note: since September I have been on about a dozen medications including: Fludrocortisone, Nadalol, Cymbalta, Pyridostigmine, etc. It is possible that a few of the symptoms may be side effects of the medications.)

Tilt Table Test (TTT)

Tilt Table Test (TTT)

Do You have Dysautonomia?

Diagnosis and Testing

If you suspect you may have Dysautonomia the best thing to do is ask your doctor about having a Tilt Table Test (TTT). The TTT is the gold standard for diagnosing a disorder of the ANS. A TTT is usually performed by an electrophysiologist (a cardiologist who specializes in the electrical functions of the heart) in an outpatient hospital setting. It involves lying on a table that is moved slowly into an upright position while your heart rate and blood pressure are constantly monitored. In some cases synthetic adrenaline is used to try to evoke an abnormal response. In a normal patient the heart rate and blood pressure remains fairly stable and there is little to no sense of weakness or faintness. In an abnormal TTT the patient has either a marked drop/rise in blood pressure and/or a marked increase in heart rate along with sensations of weakness, faintness, nausea, etc. Tilt Table Tests are available in most major medical centers.

Additional tests to consider:

24 Hour Catecholamine Urine test- to rule out Pheochromocytoma (a rare benign tumor of the adrenal gland tissue)

Paraneoplastic Panel- to rule out Paraneoplastic Syndrome

Lab Tests including CBC, Magnesium, Vitamin D and B12 levels

Serum catecholamine test during upright TTT

You may also consider a full Autonomic workup at one of the top US locations for Autonomic testing:

- Vanderbilt University, TN

Dr. David Robertson, M.D.

- Mayo Clinic, MN

Dr. Phillip Low, M.D. and Dr. Phillip Fischer, M.D.

- Cleveland Clinic, OH

Dr. Fredrick Jaeger, D.O. or Dr. Fetnat Fouad-Tarazi, M.D.

- UT Southwestern, TX

Dr. Benjamin Levine, M.D.

- NYU Langone, NY

Dr. Felicia Axelrod, M.D. or Dr. Horatio Kaufmann, M.D. (specializing in Familial Dysautonomia)

Since this condition is not well known, studying the literature, talking online with others who have Dysautonomia at places like DINET.org, and bringing this information to your doctor(s) is critical. Early on I learned to change doctors and not settle for a doctor telling me that I'd be ok if I just took this or that pill. I'd suggest changing doctors till you find one who either has proven experience treating Dysautonomia and/or is willing to learn about and study Dysautonomia. If you seek help from an out of town doctor it is especially helpful to have a primary care doc who is willing to work in conjunction with the recommendations of out of town doctor.

What About You? Weigh in with this quick poll

Take just a quick moment to let me know a little about you!

Tell Me About Yourself or Your Story. I'd love to hear from you...

At this point I know only a handful of people who have been diagnosed with Dysautonomia or suspect they have it. If you are in either of those categories I'd love to hear from you. Even if you are not in either category, I'd love to hear your comments, thoughts, or words of wisdom.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Comments

Jessica on February 02, 2019:

I just got done watching the documentary “root cause” on Netflix. After I googled root canals and Dysautunomia and your blog popped up. I highly recommended you watch it. All your symptoms started after your root canal.... I don’t think that’s a coincidence.

Christy on January 06, 2019:

I was diagnosed with POTS early 2016. Thankfully, I was referred to a doctor who treats POTS right away. I am now on the care of the cardiologist and a neurologist who specializes in POTS. I take a beta blocker to keep my heart rate down and midodrine to raise my blood pressure. I also have IBS (bentyl helps with cramping), GERD (ranitidine before bed), insomnia (trazadone), and nausea (Zofran). My medicine cabinet looks like a 90 year old lady’s. I was told it’s possible POTS will go away in 2 to 3 years... hoping this is the last year I’ll have to deal with it!

I also have fibromyalgia. Symptoms started shortly after the POTS started, but it took until late 2018 to finally get a diagnosis. I take Lyrica, but it doesn’t help very much. I’ve tried cymbalta, but it raised my heart rate, made me extremely agitated, and made my insomnia even worse. I didn’t sleep much during the 3 weeks I took it.

I was working full time when symptoms started, went to part time about 8 months after POTS diagnosis, and decided to quit about 6 months ago. I felt like what little energy I had was spent at work and my family was left with me lying on the couch in pain and no energy to to give to them.

Unlike you, I have found