10 Ways to Understand the Mystery of Dysautonomia
Dysautonomia is one of the most overlooked and devastating disorders. Devastating? Yes. People who are struck by it lose life as they know it. As one doctor said, "people who suffer from this may never recover. They may never be able to drive a car, hold a normal job, and in some cases, take care of themselves." In a nutshell, you go from an independent person to one who is dependent upon people from everything to getting to doctor's visits to requiring a walker or wheelchair.
Doctors refer to dysautonomia as, "the waste paper basket of neurological disorders." Why? Because it has so many different symptoms and they spring from unknown causes. Sadly, this is one of the most unknown and overlooked disorders for people. Since a doctor cannot or simply decides to stop determining the cause, the sufferers are forever stuck in a whirlpool of doctor and hospital visits and medication galore. Doctors are treating each symptom without knowing the cause. One doctor put it, "people are so glad to know they do not have cancer, they are fine with it." Fine with it??! Imagine if a doctor suddenly was struck with the disorder. They would lose their ability to practice medicine, their career, and the life they knew. I am pretty sure they would not be relieved to hear, "well..it's not cancer. So join a support group and live with it."
At age 21, I lost the life I had to dysautonomia. Instead of pre-med classes, a research job, and taking care of the school's labs...I was left in bed and dependent on those around me. My case got so bad that at one point, I was stuck in a wheelchair. I tried to take doctor #2's advice and check out the support groups...they were not for me. I did not want to moan about all the miseries behind this disorder (and the other medical problems I now suffer from). I wanted to keep on living and going. I would not take doctor #1's advice to "stay in bed all the time." Sometimes I cannot get out of bed but when I do, I make it count.
So one way I am making it count is using the days when I feel up to writing, to write about my journey and this article. I want people to know and support those with the disorder. I hope letting people know can inspire them to support research on dysautonomia. Not only dysautonomia, but research for everything from heart disease to breast cancer to lupus.
#1 What is dysautonomia?
The simple definition: the body's autonomic system fails or breaks down.
What does THAT mean?
Your autonomic system is responsible for controlling your bodies involuntary functions. This means the functions you do without even thinking. The autonomic system controls important details like blood pressure and heart rate. You never have to think about doing it because the body takes care of it for you.
In dysautonomia, your body is no longer able to control or properly control these functions. Essentially, I see it as it cannot make up its mind. When you stand for an extended period of time, it suddenly decides o hey! I think I will just suddenly drop the blood pressure. When it happens, your body's sudden drop can cause fainting.
In normal people, high blood pressure can cause a faster heart rate. The heart is working hider to apply the pressure needed to move blood through the body. In dysautonomia, a person can have a fast heart rate and very low blood pressure. Why? Who knows.
#2 Just How Many People Suffer From Dysautonomia?
The belief is over one million people in the United States alone have some type of dysautonomia disorder. Many are undiagnosed or misdiagnosed so the number is probably much larger. This is not an obscure and rare disease like fibrodysplasia ossicans progressiva. The disease I wanted to do my research on (if you want to know what it means...look it up and learn something new). We are talking about something affecting many, many people.
#3 What causes Dysautonomia.
Sometimes a dysfunctioning autonomic system can be caused by another disorder. This is known as a secondary condition from another health problem. One disorder which is capable of causing the autonomic system to breakdown or fail is diabetes.
People who have no known cause have what is known as a primary disorder. Their autonomic system is the only part of the body which is affected. They are what I call, primarily unlucky, no one knows the cause. The disorder just shows up uninvited and unexpected to stay.
#4...Ok. So How is Dysautonomia Diagnosed?
Diagnosis is difficult and most people are often misdiagnosed or go undiagnosed. You cannot find dysautonomia through a blood test or MRI. Doctors often dismiss the person's symptoms as being caused by stress or simply 'it's all in your head' (if only it were). There are many disorders which fall under the category of dysautonomia and people with them are considered as having the disorder.
There are tests which can help doctors identify which disorders and the type or extent of the dysautonomia. You will not find them through a routine exam. Most need to be done in a hospital neurological unit and require a technician or doctor to observe the patient during the tests. The data used can help decide the best treatment options.
#5 What do you mean other disorders fall under dysautonomia?
The most common of these are: Postural Orthostatic Tachycardia Syndrome (POTS) / Orthostatic Intolerance (OI), Neurocardiogenic Syncope (NCS), Pure Autonomic Failure (PAF) and Multiple Systems Atrophy (MSA)..
All of these impact the autonomic system in some way. For example, people with POTS have a very fast heart rate. When the heart rate suddenly drops, their body cannot handle the change and they faint. However, each disorder has its own array of symptoms accompanying it. The overall picture is confusing. It's like trying to put a thousand piece jigsaw puzzle together without seeing the actual picture. If you do not know what the picture is, it makes it incredibly hard to try to solve.
#6 If no blood tests...then what type of tests diagnose dysautonomia?
One test used to find a disorder like POTS or Neurogenic Cardio Syncope (NCS), is the misery known as the tilt test. Why so miserable? The patient is strapped flat to a table which is than raised until they are basically standing. Then, the doctor/technician stand there asking pointless questions like, "how are you feeling?" If you have one of these disorders, you are obviously in misery. You get dizzy, sweaty, start seeing black and pass out from either a drop in heart rate or blood pressure. Sometimes the test goes on for fifteen minutes and others for a half hour. A normal person would have no problem with this. Those with dysautonomia never make it to the time limit. There are many, many other tests but this is one of the most commonly used. If you want more information, you can look up dysautonomia tests and be very happy you never have to do them.
#7 What are the symptoms of dysautonomia?
The symptoms make diagnosis very difficult as they vary widely. One of the most common is syncope or in layman's terms, fainting. People will experience extreme vertigo, which is like being on a spinning carousel which keeps going and going without stopping. Many people have neuropathy in their extremities, their hands and feet tingle without stopping.
One of the worst symptoms is the fatigue. This is not the fatigue of 'I've had a really long day at work' or 'I did not get much sleep last night.' The fatigue feels like all the energy has been drawn out of your body. Just getting out of bed and showering wears you out to the extent of requiring another nap. Even large doses of caffeine cannot stop the overwhelming fatigue.
Many people with dysautonomia have severe problems with exercise, myself included. Before becoming sick, I liked to do stretching, treadmill, and than elliptical when I was stressed. If I was to busy, than I would do a Pilates or Yoga video. I work with a personal trainer and what I manage to do in weightlifting is frankly embarrassing. Twelve pounds is like moving a mountain and I need to rest for a minute between each rep. At the end of the workout, I need to lie down to avoid fainting. The senior citizens are speeding along on the ellipticals and treadmills. They give me sympathetic looks and I'm always amazed how we came to be such physical opposites.
Along with these few symptoms come dizziness, nausea, headaches, racing heart rate, and I could go on and on. Most of us have other conditions not filed under dysautonomia which just add to the confusion. Every day is a struggle to accomplish what most people take for granted.
#8 What kind of doctors work with dysautonomia patients?
The diagnosing doctor is typically a neurologist. Not many specialize in dysautonomia so finding one who knows enough about the disorder can be challenging. After diagnosis, a regular physician can take over if needed. Some people, like myself, discovered they had heart issues unrelated to the dysautonomia (thanks for pointing those out dysautonomia!). In those cases, a cardiologist is needed. They also work to prescribe medications to help keep blood pressure and heart rate regulated.
#9 So How Do You Treat Such a Random Disorder?
Treatment is based upon symptoms. Neurologists may prescribe medications to help regulate the autonomic system. Cardiologists will prescribe medication like alpha antagonists and beta blockers to try to regulate heart rate and blood pressure. Medications are often forms of steroids (not the exercise-make-you-freakishly-buff-ones) which affect the adrenal glands like hydrocortisone.
In cases where the fatigue or fainting is extremely severe, patients may require a wheelchair to prevent falls. They may need a walker at times when the symptoms are really bad or a cane to help get around. Some work with personal trainers to try and keep up their strength through exercise. The trainers must be aware of the problems and understand the condition. They need to monitor the person and do exercises appropriate to their health. Most importantly, they need to know what to do if the situation goes bad and anticipate if a person is going to pass out (or other bad things).
#10 What Do People With Dysautonomia Do?
This is an interesting question and depends upon the type and severity. Some people can mostly control the problems and function some what normally. Others need help to do even the simplest of tasks. Most of us cannot hold normal jobs and may never be able to. They way one handles the situation varies from person to person.
If you want to know how I live with this condition and my other health problems, check out my squidoo on 10 Ways to Live a Happy Chronically ill Life. All my medical problems let me know life is short. So I have got to keep living every day like it will be gone tomorrow. Because if I was healthy one day and chronically ill the next then it could be I'm alive today and dead tomorrow. You cannot live life wasting away for what you had, you need to work and enjoy what you have.
- National Dysautonomia Research Foundation
Visit the National Dysautonomia Research Foundation to get some answers.
The Big Question
Could You Still Be Happy If You Lost Your Life As You Know It?