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Dysautonomia: Invisible, Often Misdiagnosed

Updated on December 6, 2016
KellyFreeman LM profile image

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

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.

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.

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.

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

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.

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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.

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    • profile image

      Bridgetlea 2 weeks ago

      Ive recently been diagnosed with neuro cardiogenic syncope. I've had symptoms for over 17 years. The worsening episodes led me to doctor visits resulting in a diagnosis. It's been a relief to have a condition I can read about.

    • profile image

      Danielle 2 months ago

      What a story. May I ask what is the difference with the diagnose chronic fatigue syndrome and fibromyalgie? I have a lot of the same symptoms but I have an early menopause and blame the hormones for everything. After reading your story I think it could be that there are more problems.

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      Barbara 5 months ago

      Thankful for this article I have so many of these symptons and am now seeking better doctors to help diagnose what it is I may have.

    • Tabitha Cloutier profile image

      Tabitha Cloutier 5 months ago

      I was diagnosed with POTS about a year ago and I would like to share that prior to my diagnosis I had my eyes checked because I found myself squinting during classes and it was bringing on migraines--if I had a class in the morning, the rest of my day was ruined. After being told I have 20/20 vision and being asked if I wanted to be told there was something wrong with my vision, I started looking online for answers and figured out that I am hypersensitive to blue-light. I tried regular sunglasses and they helped a little; but, I still squinted and I still ended up with migraines...

      Long story short, I went back to the same eye doctor (insurance purposes) and told him what I discovered online. Although he was rude about it, he gave me a prescription for blue-blocker glasses. I immediately noticed a difference. And, after a couple of weeks, I started sleeping better too.

      I have lots more that I have discovered in my experience POTS thus far that I would be happy to share; but, for now, if you haven't already looked into blue-blocker glasses, I would like to recommend looking into blue-blocker glasses.

      I also want to thank you for writing this!! POTS is not well understood, and I still have much to learn. I did not connect my blue-light hypersensitivity to POTS, and although I was diagnosed with POTS the term Dysautonomia was never mentioned to me. A lot was not mentioned to me. I was simply told that I have POTS, and needed to drink more water and sports drinks, and eat salt liberally.

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      ljschmitz 6 months ago

      Thanks for sharing in detail your experience about this little known condition. Mine started about 18 years ago and I ended up having to take a medical leave in 2008. I thought it was due to my stressful job, but, quickly found out even with rest my condition kept getting worse. I'm a type-A and a "driver". I never understood what "hitting a wall" meant until a few years ago. I so sympathize now with tantrum-throwing 5 year olds too tired to go on with life! My ANS dysfunction diagnosis was just 5 months ago when I flew across the country to see a Functional Neurologist. How are you doing these days?

      @Warhorse and @Honeybee...you should consider looking up Dr Gilbert Jaudy whose patented organ-remapping methodology may be able to help you. Best of luck to all.

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      mac 7 months ago

      Hello . This is a wonderful write up. Since you have already established a start point for your symptoms, my thought is to ask you when, and what kind of root canal you had done? If it was done in 1 or 2 days close together you may have had a newer procedure that uses formaldehyde. It is a known trigger for the disease you are now experiencing. If you are able to confirm this get the tooth removed immediately. The use of formaldehyde for root canal was never formally vetted and there are numerous lawsuits for medical damages from patients. It is toxic and has the ability to trigger any number of neurological condition in humans including yours. Even when removed it could leave lasting effects or a few years to get better but leaving assures you will never have a chance at getting better. Take care

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      Renee Hedges 14 months ago

      Your article is fantastic! I can relate to everything! I'm newly diagnosed and see the Cleveland Clinic team, including Dr. Jaegar. I have pots and NMS, which has worsen over the last 3 years. Noticable symptoms started in May, 2013. I was dismissed several times and focused was shifted due to a tumor found in my small intestines (been in remission for 2 years). Finally, this past May, the clinic gave me the answers I desperately needed to try and understand the daily dizziness, fatigue, periods of syncope, neck pain, brain fog, word finding deficits etc..I had to stop teaching this year, but my goal is to get to where you are. Thanks for sharing your story! It helped make my terrible pots day a lot brighter!

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      Trae 14 months ago

      After years of ambiguous, frustrating and at times debilitating symptoms, I was finally "diagnosed" with POTS after being taken to the ER for "anxiety attacks." The Doctors wife had a severe case of POTS and he was able to recognize the symptom history. I have many of the symptoms you described. I went to a Cardiologist and he didn't do testing. He said that I probably have POTS but to increase my salt and water intake and that should help. Part of me is relieved to have a "diagnosis", but he didn't do the testing so I feel sometimes like it's not a "real diagnosis"...but then again, I'm afraid to have the testing because I'm afraid it'll come back negative then I'll be right back to wondering if I'm just crazy. Thanks for sharing about the ear pain, I had no idea that was part of it, but it certainly explains a lot.

      My most common symptoms are

      Tingling in my hands

      Fatigue

      Migraines

      Irritable bowel

      Dizzy spells

      Heat intolerance

      Skin flushing

      Sensory overload

      Anxiety

      Tearful

      Can't stay balanced

      Vomiting

      Brain Fog

      Poor word retrieval (use wrong word, like empty the laundry...when I meant dishwasher. Or vacuum the lawn...happens all the time...sometimes I notice. Sometimes I don't.

      Occasionally I get noticeable

      Shortness of breath

      Light headed

      Tachycardia

      Blurred vision

      I'm sure I have many more symptoms, that I could check off a list, but since I'm presently home from work due to an episode, I'm not quite as sharp as I'd like to be.

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      WarHorse 20 months ago

      My 12 year old daughter was diagnosed with "symptoms of POTS with an underlying cause of dysautonomia". This was just over a year ago. She has symptoms of dys. but many more. I research day and night as doctors locally don't know what to do with her. She was diagnosed at Mayo, MN. I'm wondering if she has a mast cell disorder. She has only grown worse in her health since the diagnosis and she is very sick everyday with multiple symptoms. I fear for her health as she has declined since we first noticed things were shifting in her health 3 years ago. Her G.I. tract is severely affected and she eats very little due to nausea and pain and reflux. Along, with this, she also has almost all of the symptoms you have mentioned in your story. She also has so many symptoms of the mast cell disorders. Thank you so much for sharing your history. At age 12, sometimes it is hard for her to describe certain symptoms to me and you have helped me understand what she complains of but is hard for her to put into words. I'm looking for a Dysautonomia specialist who can possible identify/rule out mast cell issues. I'd love to know if you have recommendations. Thank you!

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      Pepcat 21 months ago

      Hey! I've got dysautonomia and overproduction of histamines. My meds consist of dopamine agonist and antihistamines (for h1- and h2- reseptors). Before I was diagnosed, I had serious symptoms. My healthcare didn't know what was wrong with me. So I had to go to private sector. Take care!

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      Honeybee 23 months ago

      I also have it along with many many other medical issues... and they seem to keep finding more nearly everytime I go to a physician. Thank you for your article. A cardiologist diagnosed me with POTS and EDS but then did not look much further into say types of EDS or help me to understand what this all meant. I have spent so much time online trying to figure well, me, out lol. Hearing your story is so helpful. I have to find a new doctor as well, and as you mentioned they are not in abundance since the condition is new enough to them that there just a few doctors who deal with it. I didn't know that the sensory part was POTS. I have the worst time concentrating, thinking, yes! meeting deadlines just does me in completely and I used to work 6 jobs and go to college and I not only kept up but was so far ahead of everyone else that it is just nuts to think of where I am now. Most doctors have told me to go so a shrink- it's the common answer when they have no clue. Other than my beautiful parents who take care of me, I am pretty isolated, my friends are my pets as all of my friends dumped me as I got sicker and driving to the local grocery store is like going to Disneyland now lol (it's true! its a really really big deal!! :) I smile all the time, keep my spirits up and give glory to God because with all of this He has His reasons and they are always perfect. I am grateful to you for what you are doing and being there for others, it is a huge deal! :)

      OH! thank you for mentioning the seizure symptoms as well... I have been dealing with them for at least 3 years in a more consistent fashion. I was told to go see a psychiatrist for this as well. I can "tremor" hard enough that my arms, ect will pop out of sockets, my hands and feet will contort so hard that I am absolutely stuck in that positoin and place for up to hours at a time and the contortion so bad you just cry and wimper and I am not a weenie, but the worst is when it goes to my throat and locks it down... how this means I am crazy I haven't figured out, but I am pretty sure that I may have a job one day as dysautonomic comedian! I am so excited to talk to you you really opened my eyes, and it is so nice not to be alone in this and know someone else with it (not that I wish it on you or anyone else).

      HUGS!!

      Honeybee

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      renee 2 years ago

      Like many others thank you for sharing. I'm researching to find answers for my mother's health. Her symptoms sound very similar to non degenerative POTS-dysautonomia. She recently had a pacemaker put in a long with an ablation. She appeared fine, but not long after her symptoms continue to grow. I recently sent time with her and knew she needs immediate help. I don't even recognize her, she is showing signs of mental confusion, as if she is not really present. She gets shortness of breath, weakness and syncope upon bending over, fatigue, rapid heart beats. Her pace maker checks outs as working a -ok, but it appears the doors are ignoring her symptoms. Her cardiologist stated, maybe it's because you have gained some weight.

      Please help direct me to help her, I feel time is running out. I need a specialist possibly for pacemaker syndrome ( many pacemaker recipients have these symptoms and go misdiagnosed), or maybe it's dysautonomia? Can anyone quite us to the right physician. We live in Clearwater florida. We will drive as far as needed. Thank you!

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      TrishLili 2 years ago

      Hi Kelly,

      I read with great attention your post.

      So similar things are happening to me, feeling very tired, having bad and good days.....

      I've been struggling with HBP since 2007 when I really started to be very sick.

      The doctors tried every type of medecine for HBP but only side effects would come out and my HBP still uncontrolled.

      If they give me medecine too strong then I go for LBP and I'm so tired that I hardly can go to work, sometimes I really have to stop working for a week.

      And lately, doctors told me that they wanted to do more tests because I might have dysautonomia.

      So at end of september I will go to hospital for at least one week.

      I live in the south pacific so I have to go to France to have those tests.

      I hope they will find what is making me sick for so long.

      Dysautonomia or not but I wish they will find the right medecine to stop the HBP crisis.

      Hope you're all doing alright and many thanks Kelly for all those precious information

      Trish

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      Maryanne 2 years ago

      Thank you Kelly so much for all the helpful information. I was just diagnosed last week after suffering with these symptoms from last October when I fell and hit my head. I too live in Tampa and was googling to find out what my next step should be. The Endocrinolist that I saw gave me the diagnosis. In 2004 I was having fainting and very low blood pressure issues. After seeing many doctors I finally came upon a doctor who took me seriously and sent me to a cardiologist. She had me take the table tilt test and sure enough I had vaso depressor syncope. She put me on a beta blocker for about 2 years and then took me off due to me feeling better. Now the symptoms are back plus so many more. When you used the term "hit the wall" that's exactly what I was trying to explain to the 5 doctors I went to try to figure out what was going on with me. Now that I know what it is I don't know what I need to do? The Endocrinolist told me to try to relax, take yoga or Tai Chi. He also said all my main organs are inflamed and that my sleep is insomnia and that this is how this all started? So although it is good to know what I have, finally. I don't know where to go from here. Any suggestions you may have I would greatly appreciate! Thank you again for all the information :) Maryanne

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      Felecia Wagstaff 2 years ago

      Hi, I'm so glad I found your page. I was very recently diagnosed with POTS and am really struggling. I found it interesting that yours came on after a root canal and so did mine! I am having a very hard time accepting this diagnosis and am trying to find a doctor that knows something about it. I've searched Google and am not find anyone. I live in Binghamton, NY but would definitely be willing to travel a few hours at least. If you have any recommendations please let me know.

      If you even want to email let me know and I'll send you my email. Your story sounds a lot like mine. I went from busy working mom to being stuck on my couch, I'm hopeful things will at least get a little better soon and I will be able to do more. The lights, sounds and business bother me a lot so it's hard. I cannot drive right now because things are just too overwhelming and my vision gets funny (hard to explain).

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      2 years ago

      I was diagnosed with neurocardiogenic syncope when I was 28. I'm 40 now. It was such a relief to finally get a diagnosis. (I'd been passing out and had many of the symptoms since the 4th grade. I started getting deeply depressed in 8th grade and not sure if it was related. I finally got on an antidepressant at age 20). In my later twenties, I was fighting off pre-syncope everyday. I passed out in public a few times, and the witnesses convinced me to see a serious doctor. I have jerking motions when I pass out and stop breathing, so it really freaks people out. I neurologist sent me to have a tilt table test, which was positive. I was put on a beta-blocker, which really helped. Now I only pass out every few months when provoked. However, NOBODY takes me seriously. I'm not sure if I have more wrong with me or if it's all tied to the same thing. (My heart slowed and actually stopped for a few seconds during the tilt table test). My other symptoms: I'm always cold and I live in Tampa (so recommend a good doc if you know of one!), I can only function for a few hours at a time before I feel like I have the flu (luckily my work lets me do a lot from home), My feet turn purple and numb after a few minutes of standing, brain fog, migraines, insomnia, sensitivity to light and noises in crowds. I think those are the main ones, but they are all really strong every day. I'm worse in the early morning. My work usually lets me come in at 10, but on earlier days I feel so sick. I have no energy left for anything else. I think I'm doing a good job for myself, but my family thinks I just have a bad attitude. I feel like people think I don't try or that I make excuses.

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      Andi 2 years ago

      I'm 17 years old and have had symptoms for a good 8 years. I went to many doctors in that time and they have all told me the problem is in my head. Today I went to Children's Hospital and now I am being tested for it. The doctor said he doesn't think I have it but he's not sure. I have every symptom on Wikipedia. I didn't think I'd be dealing with something like this at my age. I'm relieved that the doctors may have finally found a solution, but pretty scared about all of it. Thank you for sharing your story, it made me feel slightly better about all of this.

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      HypatiaHellman 2 years ago

      Hi Kelly-

      Thank you so much for this page. It is helpful to compare experiences. My dysautonomia started with acute heavy metal inhalation. After chelation therapy for a variety of nasty metals, I was better for a bit, but the trauma to my body started a storm that will likely last a lifetime. After three years of being told I was crazy, I finally got a hyper-POTS diagnosis confirmed by a tilt table test and norepinepherine blood test. I have never been so happy to get terrible news in my life. It is amazing what validation does for a person. I also have many of the symptoms described, though I am a little funky. I wonder if anyone else has a muted nervous system with these symptoms:

      Fainting

      Dizziness

      Reduced sweating

      Shaking/seizures

      Irratic blood pressure (huge drops causes shaking/seizures)

      Unable to tolerate cold (need hot bath every night to warm body)

      Poor sleep

      FATIGUE

      Exercise intolerance

      Random heart rate changes (too high or low and then lightheaded or move to presyncope)

      Purple toes and sometimes fingers

      Dry mouth with metallic taste

      Autoimmune disease and mild hypermobility

      I am still working, propped up by Aderrall and evened out by pindolol, but I don't know that I should be. I have episodes at least once a month in which I cannot stand or walk at the end of a work day, and I sometime faint. As a teacher, that can be a problem. So I wonder if other teachers with dysautonomia have made that tough decision to stop. It is my calling and Passion. I just wonder when it is unfair to the kids to have an occasional nonfunctioning blob around. Okay....sorry for the length. I truly welcome thoughts and suggestions from others who know what it feels like to have such an unpredictable and difficult disease.

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      Wendi 2 years ago

      I wasn't finished listing my symptoms. It cut me short.

      Fatigue

      Nausea

      Low sodium

      Orthostatic

      Migraines

      Anxiety

      Vertigo

      Psoriasis

      Recurring Allergic Hives

      Anaphylaxis

      Low blood pressure

      Weakness

      Chronic UTIs

      I know there are more but these are off the top of my head.

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      Wendi 2 years ago

      I'm so glad I found you. A few months ago, my doctor suggested that I research POTS and that I could have it. I have had many symptoms for several years that I thought were unrelated. I have not been officially diagnosed, but I'm pretty sure I have POTS. I would like your opinion. Here are some of my symptoms for the most part come and go:

      Fatigue

      Nausea

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      Johng576 2 years ago

      This is one awesome blog post. Keep writing. bddebgdebefd

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      Gabby 2 years ago

      Hi, im 14 years old and about a year ago I was diagnosed with severe Elhers Danlos Syndrome (EDS), a 'rare' connective tissue disorder (& chronic illness). Over the past few months i have noticed some other things and i think I may have a form of Dysatomnia. I have been near-fainting about four times a month now, and i get dizzy just by standing. Looking back i have almost always been this way, i just never paid any attention to it because it hadn't gotten this bad. I have very low blood pressure, a doctor found out over the summer while i was getting a physical (which i failed with two different doctors, the third passed ne with no running, jumping, or excessive walking.) I also have a slight heart murmer. About 5 months ago i started to experience extremely painful headaches- which i now get almost daily- which was weird because i NEVER had headaches my whole life. Literally maybe a couple slight ones every year or two. I noticed myself shaking from time to time, i figured it was my EDS. This month-has been by far the worst. I cannot even stand without feeling like im going to faint &the world is spinning- sometimes i do faint or just like collapse on the floor. I have horrible circulation also- my legs always get blotchy and weird. I had all these symptoms and everytging started to come together- i thought POTS? EDS & POTS are extremely often presented together. I did some research- i cannot go to the doctor right now because my parents are in the middle of switching insurances, and even when they do i need to take care of my EDS asap! So i didn't think i could go to the doctor for awhile- i decided to 'test' myself. I realize tge results could be completely off, but i just wanted to see. I stood for exactly 10 ninutes and took my hr after, it was 187 - almost 200... I didn't think it was right so i did it again the next day- just under 200 bpm. I don't think that's normal vut im not very familiar with any of this. If anyone could help at all as to if its even worth seeing a doctor or not. I mean, i am fainting so i should anyway, but does it sound like POTS or somethibg related? Thanks so much!!

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      eaglemom 2 years ago

      My daughter has an early diagnosis of dysautonomia primarily based on her symptoms and presentation. Her cardiologist diagnosed her with orthostatic hypotension. She is waiting for TTT to confirm. Her symptoms and poor health have been going on for two years now and seem consistent with dysautonomia (dizziness, heat/cold intolerance, headaches, significant back pain, feels like lungs won't expand--breathing issues, fatigue, confusion, brain fog, muscle weakness, bloating, hormonal issues, excessive sweating, frequent urination, excessive thirst) however I am having trouble wrapping my mind around POTS or NMS because she does not have drop attacks or fainting episodes. Instead, she becomes excessively weak, tired, confused, back and head pain will worsen and will need to lie down within 20-30 minutes of feeling this way. Once she lies down she becomes unconscious (truly unconscious) for 20-25 minutes. When she starts to become responsive again she is extremely confused and has difficulty processing information, her headache and backache is hardly tolerable, and she has no recollection of what happended up to 30 minutes prior to the episode. She also feels disconnected with her memories for the next day or two. She is experiencing these unconscious episodes approximately once a week. Have you ever heard of similar episodes for a dysautonomic patient?

    • Bob Palmieri profile image

      Bob Palmieri 2 years ago from Brewster, New York

    • Bob Palmieri profile image

      Bob Palmieri 2 years ago from Brewster, New York

      Hello Kelly

      Being chronically unhealthy is a terrible plight. I share a lot of your symptoms (really, A LOT OF THEM). Have you been thoroughly screened for Lyme and the other possible Tick Born Infections? Like Babesia, Bartonella, Erlichia, Rocky Mountain Spotted Fever etc. ???

      After 9 years of mis-diagnosis I was finally treated for Tick Born Infections and for 29 months was on several different antibiotic regimens. During that long course of treatment, actually 18 months into it, my blood work (Lyme Western Blot) finally flipped from "Negative" to "Positive" by CDC Criteria and I gradually began climbing up and out of the "Crypt". I'm still not 100% but, I can easily say I'm back to 80% of pre-morbid status. (I was also treated for Babesia a Malaria like red blood cell parasite)... Take a good look at the following site which is for a Specialty Tick Born Diseases Lab considered the best in the USA called Igenix. www.igenex.com ... Let me know what your thoughts are.

      Best Wishes and Good Luck!

      Bob

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      Stephanie 2 years ago

      Wow this all sounds like me totally!! I would love to get some help on this but I have lost my health insurance so right now is rough!! I was diagnosed with a rare disease called Hypokalemic Periodic paralysis but I think I have more than that and so does my Dr. I have so many problems it's not even funny!! Although I try to la ugh it all off it's really not funny!!my heart goes to like 150 to 165 doing nothing..I have a low body temperature but sometimes get random fevers for no reason..but when I should get a fever I don't. I have a real problem with smells and with all different things. Sometimes I choke on my food but most times I'm ok. I get dizzy sometimes I faint or sometimes I black out but save myself from fainting.when I fly on an airplane I have real problems of filling up with fluid and I get dizzy and sometimes it has lasted for months...and the list goes on..I'm very interested in any help!!!thank you ;-)

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      heather 2 years ago

      If you are not sure your cause, go to www.ilads.org

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      Rash 2 years ago

      Excellent information--it should help my daughter

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      Amy 2 years ago

      I was finally diagnosed with POTS in June of this year after 4 years of symptoms. Mine came on during a pregnancy so I always thought that was my trigger... However I just recently started researching and found a correlation with autoimmune diseases and root canals! I also had my first and only root canal during my pregnancy, right when these symptoms started!!! Never even thought to mention that to doctors because wouldn't have even thought they could be related!!! I've been reading about Dr. Huggins recommendations about removing root canals and metal fillings... Have you ever looked in to it or considered having yours removed? I would love to hear what you've done (if anything) with dental work. :)

      My email address is amymitchell143@gmail.com if you'd like to respond there!

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      KellyFreeman LM 2 years ago from Tampa Bay, Florida

      Glad to join Hub Pages. Thanks for selecting this piece to a part of the big move!

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      KellyFreeman LM 3 years ago from Tampa Bay, Florida

      @anonymous: Hi Kristin. I'm glad you have found this helpful. I don't have a blog but if you leave me a message here, I will get back with you soon. God bless.

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      KellyFreeman LM 3 years ago from Tampa Bay, Florida

      @anonymous: Hi Nikki.

      I'm so sorry to hear about your mother's situation. A good place to start in gaining more information is DINET.org which has information about the various forms of Dysautonomia and a forum you can join that will connect you with many other POTS/Dysautonomia patients where you can get involved online.

      This can be a very disabling and sometimes traumatizing condition. It may take time for your family to learn about it and adjust. I have a few questions for you:

      - how old is she?

      - what are her most prominent symptoms?

      - have the doctors ruled out other conditions (such as Parkinsons, MS, etc.)?

      - has she had a full autonomic workup ruling at a major autonomic dysfunction center such as Vanderbilt, Mayo, Cleveland Clinic, etc.?

      - does she have a local doctor who has some knowledge for treating POTS?

      When you reply to this, I get alerted via email and will try my best to respond quickly. You will just need to check back here to view the response.

      Blessings to you and your family.

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      anonymous 3 years ago

      Good evening,

      My mother was diagnosed with POTS/Dysautonomia Jan 2013. She is struggling and so are we as her support system. We are watching her slowly loose herself in all this. I am reaching out for some kind of help with all of this. Please help me help her. I donât want to loose her. I need resources any would help. I don't even know where to begin in all this. She has lost her business and many things along with it. Please.... Please help.

      Concerned Daughter, Nikki

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      anonymous 4 years ago

      Hi. I have gotten through half your story and so relieved I'm not alone. Was wondering if you had a Facebook page or a blog to follow. Found you under looking up some symptoms. DX 4 mo. POTS AFS - DX with MCTD for decades...... Original disease.

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      KellyFreeman LM 4 years ago from Tampa Bay, Florida

      @anonymous: Yes, this can be managed but you must be willing to work hard for a definative diagnosis. I'll email you. We can discuss more.

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      anonymous 4 years ago

      @KellyFreeman LM: I am a controller for Florida Organic Aquaculture, and love my job. They are beyond understand and have been working with me. I do my best between 7am and 1pm. After one every hour is a struggle. I don't want to lose my job, and my husband works for them also. I will call TN and see what I can do, maybe they can work with Jacksonville or my local cardiologist. I just read your story and symptoms to my husband and he is amazed. It is almost a carbon copy. Everyday is such a chore and I am scared of the future at this point. At 36 I feel more like an elderly woman, but look like I am 20. No one understands, and getting the diagnosis was actually the best thing that happened to me. It confirmed to my family it wasn't just me being agoraphobic, antisocial, depressed, and lazy. We just hired someone to live with use to help clean the house and do the laundry. My husband is a disabled vet so we both are "screwed" sorry for the language. I just want to know there is hope out there. The ranexa has given me some life back for a few hours a day. After I take it, I can work, go out for a bit, enjoy life with my kids, but only for a few hours. I have been in bed for over 4 years. I just started working for the first time in for years in April. I need to know this can be managed without driving me insane, because trust me I am very close. Here is my email, vzelkina@gmail.com maybe we can help each other. I am sitting here crying and have no tears (which is another symptom, my husband use to think I was faking crying because I could not produce a single tear).

    • KellyFreeman LM profile image
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      KellyFreeman LM 4 years ago from Tampa Bay, Florida

      @anonymous: Oh I'm so sorry to hear about your situation. This misdiagnosis is so common. No it is not in your head.

      Getting a full autonomic workup is important once you've learned you have Dysautonomia because it can help to rule out other degenerative conditions, but more importantly can get you started down the right path for you in terms of treatment and management of your case.

      I know you live in Jupiter but I'd strongly advise you go to a different site for a full autonomic workup. I can not speak from personal experience but my latest understanding is that they do not have all of the equipment on site to do a full work up in Jax. I'd recommend traveling to Vanderbilt in Nashville TN and becoming a research patient or getting a full autonomic workup through their outpatient services. The only other places I would recommend now are Mayo, MN or Cleveland Clinic in OH. Feel free to write back if you have any questions. God bless.

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      KellyFreeman LM 4 years ago from Tampa Bay, Florida

      @anonymous: Joanie, first of all Im so sorry tohear about your brother's situation. When you say, "rare primary Dysautonomia" can you clarify? Have Pure Autonomic Failure (PAF) and Multiple System Atrophy (MSA) been

      ruled out? If so, then it is critical to find out the cause. Although I am no expert in Mito disease, typically in Mito cases cellular respiration is the problem - thus O2 may be only somewhat helpful. In other words, no matter how much oxygen you put into the system, if the cells aren't properly up taking the O2 the supplemental oxygen is probably of little real value. Dr. Grubb and team are some of the best in the field so it sounds like he is in really good hands.

      I've been meaning to update this site for some time but have since been diagnosed with Mast Cell Activation Syndrome a form of Systemic Mast Cell Disease. I wrote an article about this in the latest DINET.org newsletter (Winter 2013) which was edited by Dr. Lawrence Afrin out of MUSC in Charleston SC. If your brother has had PAF and MSA ruled out I'd try to get him in to see Dr. Afrin who sits on the Medical Advisory Board of the American Systemic Mastocytosis Society. Mito and Mast Cell have several similarities and may be worth looking into. Right now I "crash" about 50% of the time but I'm learning more and more how to manage it with the help of docs in far away cities.

      Before we knew I had Mast Cell Disease we thought I had primary Dysautonomia, now we know it is secondary to the mast cell degranulation which causes marked vascular dilation. As a side note, my cellular respiration is also a regular issue. You probably already know this but the complete chemistry panel, a simple blood test, can help monitor this as you and your brother manage his case. God bless.

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      anonymous 4 years ago

      I was just diagnosed 3 months ago. For over 16 years I was told I had severe anxiety/panic disorder and was a manic depressant. I have Gastroparisis, I now been diagnosed with Microvascular Disease, I have all the syptoms plus that you discribe. They put me on Ranexa which helps but I still have horrible Vertigo, Fatigue, Blurry Vision, Fogginess, racing heart, almost fainting when standing, seeing stars and much much more. I just asked for an appointment at the Mayo Clinic in Jacksonville. I live in Jupiter FL. Honestly I don't know what to think any more. First it was all in your head, now it is we still need time to fully diagnose you.

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      anonymous 4 years ago

      Thanks for describing your symptoms so well! My brother is 51yo and in his 4th year of a rare primary dysautonomia. It was hard for us to grasp how he was feeling, even though most my family are in the medical profession, including him. A once type-A guy full of energy, he prays for good days only to know he will crash again even worse than before. He is on home oxygen and has maybe 4-5 good days a month. The migraine pain has been consistent for over 3 years. He is on appropriate meds, has the new pacemaker for dysautonomia pts (pioneered by Dr Kabour in Toledo Oh), sees Dr Grubb and Dr Tiejen @ UTMC also in Toledo. He has been to the Mayo clinic ( they were of no help and WAY behind in the treatment of this disease). He is in the process of getting a bipap machine due to the sleep apnea and subsequent retaining of CO2. Lately he has been talking about wanting to "cross-over". I have never known him to give up on anything. We are torn between pushing him to find more answers (they believe he has a mitochondrial component also) and hospice care. We are aware of DINET.org. Any insight would be most appreciated. Thank you.

    • KellyFreeman LM profile image
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      KellyFreeman LM 4 years ago from Tampa Bay, Florida

      @anonymous: Yes. By all means.

      Randy Thompson is outstanding. If you are unable to get in with him easily I'd encourage you to travel to Vanderbilt in Nashille for an autonomic dysfunction workup.

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      anonymous 4 years ago

      Hi.... Thank you so much for this website! I am encouraged by it. My story is long but I will try to just hit some of the BIG issues.... When I was 18(I am now 63) I had to have my wisdom teeth pulled. One of them broken into many pieces and it took them 3 hours to remove them. When I got out of the chair I passed out and my life hasn't been the same since.this makes no sense to me! I started to college a few months after this experience and had to drop out after just one semester. I had trouble being around people and noise and bright lights. I would have panic attacks and feel like I was going to pass out if I had tostand in line anywhere for any length of time. Sincetheni have had many diagnoses of many things including sleep apnea, psoriasis , psoriatic arthritis, post herpatic neuralgia, spasmodic dysphonia, Fibromyalgia, CFS, hypertension, depression and hypothyroidism. I have months when I feel like Ian living again and then suddenly I am down for the count for weeks or months. I am so tired of feeling bad and never knowing from one day no make that one hour to the next if I am going to be able to drive because I can feel great and leave the house only to be hit by dizziness and confusion and have to pray myself home. I am afraid to commit to any thing because I may have to cancel at the last minute. I have a wonderful husband who has been supportive most of the time but he gets frustrated sometimes too because I can't seem to find a doctor who can explain to me what is going on. I am on several medications that just treat the symptoms.the spasmodic dysphonia is the most frustrating thing for me because I can't get a job because of it. There are days when I can't get any sounds to come out. I used to sing but now I can nearly croak out a song. After being "sick" for so long I now consider this normal but some days icryand cry cause I don't like this "normal for me" life.since the one set of whatever this is I have not gone longer than 9 month softening in remission but whenever I do experience a long remission something else happens when I flare again . ( what I mean by that is I have a new set of symptoms to add to my problems)

      Does it sound like I should investigate the possibility of Dysautonomia? I live an hour from Pensacola so going there would be an easy thing.

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      anonymous 4 years ago

      @KellyFreeman LM: Thank you. Lets hope there is a cure.

    • KellyFreeman LM profile image
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      KellyFreeman LM 4 years ago from Tampa Bay, Florida

      @anonymous: Amy, that is so frustrating. My doctor is in Largo, just across the bay and is wonderful. His name is Miguel Trevino. He now has 3 Dysautonomia patients that I know of and he could be of help.

      I have heard similar complaints from Mayo JAX.

      I have a couple of suggestions and would be happy to talk with you on the phone. Email me at k.Freeman@networkpeople.com. We can exchange numbers and chat. Unfortunately Tampa Bay is a dry desert when it comes to healthcare for the patient struggling w autonomic

      dysfunction.

    • KellyFreeman LM profile image
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      KellyFreeman LM 4 years ago from Tampa Bay, Florida

      @anonymous: Hi Ram.

      I'm so sorry to hear about your situation.

      I have been on and off of about 20 different meds since I was diagnosed in 2011. Many of those meds I could not tolerate because of adverse reactions. I have also since been diagnosed with Systemic Mast Cell Disease which complicates my case further so rather than give you my med list I will refer you to the DINET.org website. Look for the tab about "treatments". It lists the major medicines used to treat autonomic dysfunction and the pros, cons, etc.

      I will tell you that in my case there are 6 meds I've found most helpful and 3 non-pharmacological treatments that really help too:

      I'm listing these in order of how helpful they have been to me:

      1. Exercise. (mostly recumbent regular, slow steady aerobic and stretch training- I started w cardiac rehab for 3 MOS and now work weekly w a trainer but you could do everything I'm doing without a fancy gym or therapists.)

      2. 2 ltrs IV Saline therapy- I use this as a bailout when I'm crashing (approx 1 per mo). The salt and fluids are like a lifesaver but only last 24-36 hrs.

      3. Adderall- this stimulant drug is a strong vasodilator and helps w circulation and energy level. I have noticed an improvement in cognitive functioning on days when I'm not crashing.

      4. Antihistamines- (H1 and H2 blockers - Loratidine and Famotidine - both double doses). This helps prevent the histamine problems I have associated w mast cell disease.

      5. Clonazepam- this drug helps w oscillations of the heart and helps to stabilize the mast cells. (also helps relax the nervous system)

      6. High salt, caffeine and fluid diet- Lemon lime Gatorade, potato chips, coffee and salt water are my close friends. I try to get 3 ltrs of

      fluid a day, 7-9 gems of salt a day and 2-3 cups of coffee.

      7. Pyridostigmine- this drug is normally prescribed for patients with Myasthenia Gravis but is helpful in most patients w POTS because it helps reduce an enzyme that is a catalyst for nerve cells.

      8. birth Control Pills- help me keep from losing lots of blood each mo which was causing me to become very anemic.

      9. Firm but slow massage of my neck, spine and lower back- helps to relax my nervous system.

      Hope that helps Ram. God bless.

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      anonymous 4 years ago

      Hi Kelly!! I found your page so very helpful and full of knowledge that I can share with my family and friends of those again who 'thinks its all in your head' or ' you look good, you can't possibly be feeling bad'. So again thank you!! I too live in Tampa and to say the least I have had little to none luck with having support from a doctor to help manage my POTS. I was diagnosed with POTS a little over a year ago at the Mayo Clinic in JAX, FL. A month after being diagnosed, I got a letter in the mail that advised my doctor was no longer at the Mayo Clinic and to seek my PCP for further medical care. REALLY???? Yes, really! I refuse to take that as the answer and asked to see another doctor at the Mayo Clinic which was the worst thing I could have done. The new doctor belittled POTS, documented by office visit notes incorrectly and again told me to turn to my PCP b/c there was no further reason for me to be seen at the Mayo Clinic. HORRIBLE, HORRIBLE experience to say the least. Since then I have been on a 8 month doctor search getting turned down left and right, lost my job (thankfully husband carries our insurance), had to file bankruptcy...the list goes on and on. So needless to say Iv gotten nowhere after being diagnosed and symptoms only worsen daily/weeklky/monthly...but as you and I both know...one day at time, nothing more! At this current time, with only one income of my husband's, we don't have the funds to be able to travel outside the state but if it came down to it we do what we have to do.

      I come to you, seeking any FL doctors that you have come across. I have contacted Dr. Randy Thompson on numerous occasion but have had no luck...sooniest he could see me is Oct, as his health has also gotten worse. I hear he is the best of the best, and I know he would be the right doctor to be seen by that I know I could trust. Im truly at a loss...and just don't know where to turn to. Thanks in advise for any light shed...

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      anonymous 4 years ago

      Hi Kelly. Dysautonomia has completely ruined my life. I had so many big ambitions and now I can't even dream. I am 30 years old and I have been battling this terror for the past two years. I am unable to work and I got fired from my job. I don't have a home.

      I also have Marfanoid Syndrome and Mitral Valve Prolapse. I live in India and all the doctors are sending me to a Psychiatrist. Some of my relatives think I am crazy. My parents don't even understand me. They think I am a complete loser. Even the Cardiologists don't have any knowledge about this medical condition. Chronic fatigue is one of my biggest symptoms.

      Would really appreciate if you can let me know what medications and diets you are taking.

    • KellyFreeman LM profile image
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      KellyFreeman LM 4 years ago from Tampa Bay, Florida

      @anonymous: Tim, this condition can be so frustrating at times and is made worse when you do not have a clinical diagnosis for your condition. If indeed you do have Dysautonomia it is not uncommon to "feel" as if you are dying. One common feature of most Dysautonomia pts is an "adrenaline dump" meaning our bodies inappropriately release adrenaline, the chemical that is normally released when we are running for our lives or in a trauma situation. I commonly feel this way and have to keep reminding myself that I'm not going to die. As a side note, there are forms of Dysautonomia (PAF, MSA, etc) that are life threatening. Getting properly diagnosed is important to being able to manage you condition. My best to you.

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      anonymous 4 years ago

      I think I've been born with this condition. Since I was a baby my stomach hurt and had migraines. Now every second of my life I think it's going to be my last, I'm on edge 24/7. I don't sleep and when I do, I wake up in terror. My pulse stops and I can't breathe. My heart is getting weaker and my body is shutting down. All I do is cry, my mind is so lost.

    • KellyFreeman LM profile image
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      KellyFreeman LM 5 years ago from Tampa Bay, Florida

      @anonymous: No. I haven't seen Dr. Kaufmann but I have heard a lot about him and read some of his work. He is very active and well respected in the Dysautonomia community. He was one of the doctors selected to contribute to the latest medical textbook, "Primer on the Autonomic Nervous System" of which the third edition was published last November. Unlike Florida, NY is a great place to be if you have POTS- not just because of the weather but because of the number of outstanding physicians there. The key is to find a doctor that will work with you. Persistence is key. You probably already know this but the DINET.org website is a good resource for docs who specialize in Dysautonomia. There are 7 other doctors listed there that you could also try. Best wishes to you Kathy!

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      anonymous 5 years ago

      Have you used or seen Dr Horacio Kaufmann? Haven't heard much about him POTS for 13 years. Completely disabled 13 years. Dizzy 24/7 13 years POTS worse in past year. Need a good doc bad. Been to almost 70. Not many know about POTS thanks Kathy Can't travel we are in Ny

    • KellyFreeman LM profile image
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      KellyFreeman LM 5 years ago from Tampa Bay, Florida

      @anonymous: Robert, I am so sorry to hear about your situation. Know that you are not alone. Many patients with this go years before getting diagnosed properly and many face unbelievable financial strain. DINET.org has a dysautonomia discussion form that I would recommend you join for support.

      A few thought after reading your comments:

      85% of patients with Dysautonomia are misdiagnosed with anxiety/panic disorder and anxiety is a "diagnosis of exclusion" meaning that they have lots of ruling out to do before anxiety is a proper diagnosis. Your Orthostatic HR elevation is abnormal and fits the clinical definition for POTS. The problem is that most docs are not familiar with it. Print off information about POTS and bring it to your next visit. If your doc won't listen fire your doc and find one that will.

      Also, your situation, while bleak, is not hopeless and your attitude about the situation plays an enormous role in your future. You are absolutely on the right track with doing research because knowledge is power. And that knowledge will help you improve your situation. I would encourage you to move in with someone who you find to be an encouragement to you, supportive of you etc. Having a support system and family/friends to help you during a time like this is so helpful. And last but not least, I pray somehow even through this God will bless you and you will find comfort and peace.

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      anonymous 5 years ago

      Years of trying to cope with symptoms. Working and suffering going hand ind hand. Then i couldn't ignore the fatigue and blurred vision. I tried to get help. I had no insurance at the time so i was limited in getting any help. Gave up and tuffed it out till the end of the year when i could finnally get insurance at work. I thought problem solved,they can help me now. No such luck test affter test came back ok i was labeled with anxiety. I diagnosis i accepted and was happy to get some Nswer and help. But still no didn't help then i had more and more problems to top it off was with my digestive system. I asked the doctor to help me/commit me if he had to, because if this is anxiety and i am hurting this bad and doing it to myself then just send me away until i got better. His response changed my life. He said it can't all be in your head there were some abnormalities in my blood work. He didn't know it at the time but he sparked a wildfire of research on my part trying to figure out what was wrong with me. I happen upon a dysautonomia web site and it was like reading a diary of my life. I then read more about testing and tried out the heart rate upon standing and laying down. Wow my heart rate was over 100 sitting over 140 standing and 170bpm after two minutes on a treadmill. I thought i found my answer i will show the doctor and have my answer. After seeing it sent me to cardio but before results have come back for the echo,ttt and 30 day monotoring he sees me againg and said he thought about it and will wait to see what the cardio doc say but thinks it wad anxiety causing my heart rate. I have lost almost everything chasing an answer and have felt the closest i ever have and he comes back with that. I see the cardio doc this week. I know i wont get a complete answer but i only hope that i can put to rest the idea that all the pain and suffering isn't in my head. I say this having no answer and no more money to spend on test. Losing my house this week and have overdrawn my bank account and have outstanding bad checks in search of help. I hope i haven't reached a deadend.

    • KellyFreeman LM profile image
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      KellyFreeman LM 5 years ago from Tampa Bay, Florida

      @Johanna Eisler: That is really nice specific feedback. Thanks much for the encouragement. I've enjoyed creating this lens.

    • KellyFreeman LM profile image
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      KellyFreeman LM 5 years ago from Tampa Bay, Florida

      @laniparis: Thanks for your comment. I've never heard of Glutaric Aciduria Type 1 or Type 2. I know what you mean about falling down. I get visual changes before fainting so I'm quick to go down on my own will before the faint. May want to chek your Orthostatic BP and HR (lying down, then standing). If there is significant variability you may want to look into getting a Tilt Table Test.

    • Rangoon House profile image

      AJ 5 years ago from Australia

      Welcome to Squidoo. Thank you for spreading the message of Dysautonomia. I hope you are feeling and looking great. Blessings.

    • profile image

      laniparis 5 years ago

      Great first lens. This reminds me so much about myself. I've experienced most of the symptoms of dysautonomia since birth. At seventeen I was diagnosed with a rare metabolic condition called Glutaric Aciduria Type 2. I'm not sure if the symptoms of these two are extremely similar or if I might have both. The doctors have just said that I'm prone to fainting and to lay down wherever I am when I feel faint (I'm gonna fall down anyway ;). Keep us updated on your story. Thank you for sharing.

    • weakbond profile image

      Nnadi bonaventure Chima 5 years ago from Johanesburg

      Actually this is my first time of hearing about the disease. I don't wish to have it ,wishing you a speedy recovery

    • Elsie Hagley profile image

      Elsie Hagley 5 years ago from New Zealand

      Nice first lens. No I do not have dysautonomia, actually I have never heard of it. Thanks for sharing with us, hope you are feeling well now.

    • Johanna Eisler profile image

      Johanna Eisler 5 years ago

      What an impressive entry into Squidoo writing! This is something that you have obviously researched very deeply since it affects you personally. What I appreciate is that you have shared your story clearly so that we can understand a subject that is new to most of us, while feeling the utmost compassion for you. You have presented the results of your research in an easy-to-follow way, and helped us to analyze our own symptoms or those of other people we care about. Thank you so very much!

    • sibian profile image

      sibian 5 years ago

      Quite intriguing, and scary at the same time, it can basically happen to any of us.

      Great lens, a lot of work and thought put into it.

    • sibian profile image

      sibian 5 years ago

      Quite intriguing, and scary at the same time, it can basically happen to any of us.

      Great lens, a lot of work and thought put into it.

    • lollyj lm profile image

      Laurel Johnson 5 years ago from Washington KS

      Thank you for simply and honestly sharing your story and this information.

      Wonderful lens.

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      anonymous 5 years ago

      Thanks for sharing your story. I do not have Dysautunomia or know anyone who has, but it is great that you are sharing for others. Thanks!

    • Linda Pogue profile image

      Linda Pogue 5 years ago from Missouri

      Wow! What a first lens! I have not previously heard of Dysautonomia, but I know people who exhibit some or even most of these symptoms. Blessings!

    • ChristyMarieKent profile image

      ChristyMarieKent 5 years ago

      Thank you so much for sharing your story! I had never heard of this, and don't have it myself, but I want to learn more about it just so I can understand how you and others are experiencing life.

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      TheResoluteWriter 5 years ago

      Great debut! I suspect someone may find their way to a specialist because of your good work. (Hope that makes is a good day.)

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      SteveKaye 5 years ago

      You have had an amazing time with this. I'm glad that you have a diagnosis and a path toward managing this illness. Wish you the best.

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      Robert Zimmerman 5 years ago from SE Florida, USA

      Glad to hear you are moving forward, sounds like a struggle at times. Welcome to Squidoo!

    • shahedashaikh profile image

      shahedashaikh 5 years ago

      Welcome to squidoo.

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      anonymous 5 years ago

      Wow. I think it's so great when someone shares their own medical story with the public. I was not aware of this condition, but I appreciate the great depths you took to explain the symptoms and where someone can get tested. Great lens!

    • therealstig86 profile image

      therealstig86 5 years ago

      Good to see you here on Squidoo