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10 Ways to Understand the Mystery of Dysautonomia

Updated on February 26, 2016


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, "'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.

The Big Question

Could You Still Be Happy If You Lost Your Life As You Know It?

No. I could not imagine what I would do if it happened.

No. I could not imagine what I would do if it happened.

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    • anonymous 2 years ago

      Thank you. If you don't mind, I would like to share this page. I have EDS, POTS, and Dysautonomia. I didn't find out the reasons for the chronic fatigue, fainting spells, or pain until my son was diagnosed at age 14. So, for 27 years, I was diagnosed with so many things. Mostly, depression, and needing psychological help because I obviously needed extra attention. I do believe you can stay happy through this. You have to look for those silver linings. Yes, it has hurt many relationships with family members who, even after a diagnosis, believe I am faking it, and lazy. I believe God will bring them around in time. Yes, I have constant pain to the point of not being able to sleep, or move some days. Yes, I am allergic to just about any medicine that I have tried that has helped others like me. I can't go to a grocery store without sending the kids to different areas, and us all meeting in the front to make it faster. I can't drive due to seizures from the blood not flowing right. My kids and I miss out on so much at church, families homes, and don't ask about my house's cleanliness. I do believe though, that through all this I have learned many things. First, I am uber smart. I know what a lot of doctors don't know about. (lol) I am teaching several of them now. Second, (my sons have all this as well) my boys are very aware of others feelings. They are compassionate, and as helpful as they can be. I don't know if they would have had this amount of love for others, if they had not had to rely at some point on help themselves. Third, I have learned to enjoy the little things. The time I DO get to spend with my kids, and family. Books, board games in front of the couch, or on the bed. Sitting and listening to my boys talk of everything. Why? Because mom is stuck today in bed. So, now is the time to get her something to eat, and plop in the bed with her since she really can't run away. :-) Even the grocery shopping. The special diets we have to be on because we can't have processed stuff or we can't process. I have lost weight, and we have learned ways to work together to make a meal in under 10 min. (crockpots ftw) You can be happy. Even when going through hell. You just have to keep on moving, and look to the light ahead. Find that silver lining, and raise awareness where ever you go. Because, your kids will have an easier road of it than you if you do. God Bless y'all.

    • SimonJay 3 years ago

      I always try and see the positives of my life even if they are hard to spot to try and keep laughing but its not easy, id like to say if i lost my life i would try to still be happy as i know how it feels as its like losing someone close to you but unfortunately i am the kind of person if something isn't working correctly with my body i get very stressed and i think in the end that might just get to me but not sure as i have often times looked past things that many people wouldn't.

    • Kalafina 4 years ago

      @RoadMonkey: I'm on a yeast-free, sugar-free, egg-free, gluten-free, and lactose-free (except with pills) diet. I think if my body went on another diet I would keel over :)

    • RoadMonkey 4 years ago

      Have you ever tried a low carb diet for help with dysautonomia? There are sone sites on the web that suggest a low carb diet can be helpful for this.

    Yes. I would find a way to keep on going and be happy.

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      • anonymous 3 years ago

        Contrary to what my family seems to think, having Dysautonomia has not made me retreat into a shell waiting to die. I come from a long line of long living people. My own father is 86 and currently takes less medication than I do. Some of my siblings think that because I went back to college in my 40s and did three years of full time school and full time work simultaneously, that I am able to rise above my NCS and POTS and you know what, it's probably those three years of going full bore that have exacerbated my health issues.

        I'm limited in my ability to drive, but I have people who are willing to drive me places. Grocery shopping has become a chore carts are heavy and then when you put stuff in them, OMG! So my friends take me shopping and I hold on to the side of the cart or follow along with my cane because I'm in a constant state of dizziness and varying degrees of fatigue. I have to keep my feet up or everything goes haywire. But I work around what I can and accept some of my limitations because I've still got a lot of life to live and there's not point in living it if I'm not going to be happy.

      • anonymous 3 years ago

        Thank you for your continued awareness!!! It is greatly appreciated!! Here in Canada, Cardiologists, and internists are the major diagnosing physicians. Neurologists tend to stick with one area of study, and unfortunately dysautonomia, usually isn't one of them. If you are in Canada, getting a diagnoses/treatment Might be especially difficult. POTS was only added to the Canadian medical books a few years ago. Most physicians do not have any information!! And the trial and error period for medications/treatment is very long and extremely harsh! We do not have the much needed resources... So, to everyone in Canada, diagnosed or not. Your best bet is to find a chronic health, or chronic pain clinic. Environmental health clinic, or some other "clinic" that's based on holistic care, and run though your local health board. You may have to find more than one, but if your up to it, this is the break we need!! The government documents, and asseses, everything with these types of clinics in order to see if putting money into them worth while. This is also where the chronic health statistics come from. Basically, these are probably the only people who will be interested in your symptoms, and improving your quality of life

      • Kalafina 4 years ago

        @anonymous: I will keep you in my prayers. I cannot tell you it will all be okay but I can say you are not alone. It sucks. A lot. And its so hard but knowing you have something to live for makes all the difference.

        Also having the right doctor is huge. If you are not getting answers or feel unsatisfied then find a new one. One doctor said this was 'doctor shopping' and was such a jerk. I laughed when another doctor told me.. so what? it is doctor shopping and obviously necessary when our doctor can't give us an answer. Don't give up on an answer and stay courageous one day at a time.

      • anonymous 4 years ago

        I have been through hell and back..and still going! I have been to countless doctors for the past 8 years, thousands of dollars spent and still no test to be done is for dysautonomia...I just want an answer and be able to try and move on with my life..its been a nightmare not only for myself but my family as family is what keeps me going. my lil girl keeps me going one day at a time...hope you feel better and I wouldn't wish this upon my worst enemy, its main complaint now is shortness of breath, its been constant for 3 years EVERYDAY..along with all the other other crazy symptoms...its exhausting, I just want my life back. prayers for you all! please keep me in your prayers as well, thanks and god bless!

      • Michelllle 4 years ago

        I would like to think I would be strong, like you.

      • RoadMonkey 4 years ago

        I don't know. I believe I am a "survivor", that is I make do with what I have but the kind of changes you ave described are outside my experience and who knows what exactly one would do?

      • srsddn lm 4 years ago

        It sounds disastrous. But it has to be endured if not cured. One has to fine ways and means to get going.

      • eightieschild 4 years ago

        I agree with dean_w.

        And I'd never heard of dysautonomia before reading some of your other lenses, so was shocked to read how many people suffer from this. Great job in bringing this to peoples attention and educating us on it. Keep up the good work, the purple star for this lens is well deserved. :)

      • Kay 4 years ago

        Yes, I believe so. I have faith and know that no matter what happens, God is with me!

      • dean_w 4 years ago

        I couldn't do it on my own. But I can do all things through Christ who strengthens me.

      • Anthony Altorenna 4 years ago from Connecticut

        I'd like to think that I'm strong enough to carry on, but it's a challenge that one cannot truly understand until it happens. My niece suffers with Dystonia, yet keeps a very positive outlook.

        Thank you for sharing your personal and very powerful story. Best wishes.

      • SteveKaye 4 years ago

        You asked an important question because it pokes into a person's inner core.

      • Sharon Bellissimo 4 years ago from Toronto, Ontario, Canada

        Happiness comes from within and your external circumstances should not be a factor. I would like to think that if my situation took a turn for the worst that I would still find the motivation within myself to carry on.

      • miaponzo 4 years ago

        I guess I would, even though it would be very very hard!

      • duceedee 4 years ago

        I think if you have faith and keep positive yes ...I would rather be happy and surround myself with happy friends and happy loved ones .

      • Pat Goltz 4 years ago

        I once couldn't walk for several weeks. It got so bad that I couldn't support my weight even with a walker, leaning on it as much as possible. I lived on the couch 24/7. It turned out to be a dislocated hip. When it was put back for the third time, I had to work on learning to walk all over again. Ultimately, I recovered completely enough to study taekwondo and I now hold a second degree black belt. NEVER GIVE UP! If I face another problem in the future, I'll just work diligently to overcome it.

      • HalloweenRecipes 4 years ago

        I find I am most determined when I cannot do something for myself. Life changes for both the good and bad while we live, it's all part of the journey. I think I would have some great little pity parties along the way, but all in all, I would be happy.

      • darciefrench lm 4 years ago

        Yes. I found ways to stay happy with bipolar and fibromyalgia. Bless your heart for staying with it!! <3

      • KayeSI 4 years ago

        We had two friends with dystonia (similar?) who went through a lot of what you are dealing with - but also handled it gracefully, as you are. After a lot of praying and researching, they were both helped by Sinemet (Carbidopa-Levodopa), though not all are, of course.

        It's so frustrating when you are dealing with diseases that are new, rare, not having one set course of treatment. My extended family is dealing with a couple of other such diseases - totally different - but hard to pin down as well. As you share so well, staying positive and proactive are so important.

        Thank you for sharing this vital information - and your great suggestions including your post, 10 Ways to Live A Happy Chronically ill LIfe. They are definitely a blessing and an encouragement!

      • Fay Favored 4 years ago from USA

        I believe you can. It is important to surround yourself with positive people of faith. You have a good attitude and still embrace life rather than let your illness put a "brace" on life. Thank you for bringing this illness to our attention.

      • Lorelei Cohen 4 years ago from Canada

        I was 26 when I became disabled by a very rare illness. It changes how you live your life but it does not change your wanting to live your life. I am very happy and grateful to have what I have.

      • Susan Deppner 4 years ago from Arkansas USA

        I'm a cancer survivor, a happy one. So yes, I know I could keep going.

      • Linda Jo Martin 4 years ago from Post Falls, Idaho, USA

        I hope I could still be happy. Of course it all depends on what happened, so while I'm taking the optimistic view, I realize that unless you're in the situation, you don't know all the facts. Thanks for telling us about disautonomia.