Sometimes, when we’re caught up in the fear and uncertainty caused by unexplained symptoms, we can forget that doctors aren’t god-like machines. Even when you feed them the right data, there are so many variables to take into consideration–and their main source of information is a human, fallible source: you.

And when it comes to something as complex as dysautonomia, the odds are definitely against them.

Consider the list of possible symptoms:

• Dry eyes and blurry vision
• Headaches
• Dizziness (vertigo)
• Fatigue
• Emotional instability
• Excessive thirst (polydipsia)
• Intestinal issues (reflux, nausea, constipation, diarrhea)
• Slow or rapid heartbeat (tachycardia)
• Excessive sweating (hyperhidrosis)
• Perspiration depletion (anhidrosis)
• Nerve pain or numbness (paresthesia or neuropathy)
• Joint pain (myalgia)
• Motor incoordination

See the problem?

Setting aside the fact that such a laundry list of symptoms has hallmarks of hypochondria, lots of diseases cause these symptoms and not ALL people with dysautonomia will have ALL of these symptoms.

Plus, symptoms come and go between doctor’s appointments…or you may forget to report a few. What often ends up happening is that each symptom gets evaluated separately by the doctor. It’s like trying to put together a jigsaw puzzle when you don’t have all of the pieces.

If you suspect you or someone you love has dysautonomia–or you’re still angry that it took so long to find a diagnosis– here are a few things you may want to consider.

Crazytown or Dysautonomia?

Docs are trained to rule out the obvious first because an office visit is usually less than 10 minutes. Hello? More importantly, ruling out the obvious makes sense because a lot of symptoms are often seen and easily recognized by a physician’s specialized eye. Your doctor wants to fix you just as much as you want to be fixed. Address the common symptoms and you both feel better!

But when test after test comes back negative and you have hard-to-pin-down symptoms that mirror a mental illness, a doctor might assume you are…well… mental. Partly that’s because some people DO have psychological disorders such as depression, Munchausen syndrome, or psychosomatic manifestations. Statistically, more people have mental illness than have dystautonomia.

SO DO NOT TAKE THIS PERSONALLY. Remember that your doctor wants to help you, and that s/he might be almost as frustrated as you are that s/he can’t find a solution to your problems.

Doctors are just like the rest of us…. sometimes they hate being wrong and will swear they’re not!

The best thing to do is to calmly present your reasons why you think the two of you can rule out a mental illness. Yes, for example, the symptoms and uncertainty have been getting me down, but I’m not so sad that I can’t function because of it.

Be as patient with your doctors as you want them to be with you… but don’t be a doormat. Come to every appointment prepared with notes and questions, and speak up if you feel you’re not getting the care you deserve. Never be hesitant to get a second or third opinion, or switch to a new doctor.

A Brief Overview of Autonomic Disorders

Dysautonomia literally means that your autonomic nervous system (ANS) isn’t functioning normally (“dys” is a Greek prefix that means “bad, ill, abnormal”). Your autonomic nervous system regulates such body processes as blood pressure, digestion, body temperature, your heart and breathing rates. It works automatically, without your conscious effort. It’s a pretty big deal.

In dysautonomia, your ANS doesn’t respond the way it normally would. In some people that means it’s too responsive (hyperesponsive), in others, too slow to respond (hyporesponsive).

Some of the different forms of dysautonomia include:

Postural Orthostatic Tachycardia Syndrome (POTS) – estimated to impact 1 out of 100 teenagers and, including adult patients, a total of 1,00,000 to 3,000,000 Americans. Predominantly impacting young women who look healthy on the outside, POTS can (among other things) cause:

• Lightheadness
• Fainting
• Tachycardia
• Chest pains
• Shortness of breath
• GI upset
• Shaking
• Exercise intolerance
• Temperature sensitivity

Familial Dysautonomia (FD) – FD is a genetic disorder that occurs primarily in people of Ashkenazi (central or eastern European) Jewish descent. It affects about 1 in 3,700 individuals in Ashkenazi Jewish populations. Familial dysautonomia is extremely rare in the general population. FD is present at birth and is a progressive disease. Children who have FD may have an inability to produce tears and reduced sensitivity to pain and temperature, among other things. Currently, the mean age of the FD population is approximately 15 years, but treatments are improving and the statistical projection for babies born with FD in 2006 indicate a 50% chance of survival until age 40.

Neurocardiogenic Syncope (NCS) – NCS is the most common form of dysautonomia, affecting tens of millions of individuals worldwide, and many individuals with NCS have a mild case, with fainting spells once or twice in their lifetime. But severe NCS cases, where fainting happens several times per day, can lead to serious health and quality of life issues.

Multiple System Atrophy (MSA) – MSA is a fatal form of dysautonomia that occurs in adult ages 40 and up. It is a neurodegenertive disorder with some similarities to Parkinson’s disease, but unlike Parkinson’s patients, MSA patients usually become fully bedridden within a 2 years of diagnosis and die within 5-10 years. MSA is considered a rare disease, with an estimated 350,000 patients worldwide.

Pure Automatic Failure (PAF) – Once called Bradbury-Eggleston syndrome, PAF is a degenerative disorder of the autonomic nervous system affecting more middle-age males than females. PAF is characterized by low blood pressure upon standing,  a decreased ability to sweat, persistent neck pain that is often relieved when lying down, raised blood pressure while lying down, changes in urinary habits, and poor tolerance of high altitude. In men with PAF, impotence often occurs.

Managing Dysautonomia

Once you and your doctor have overcome all the obstacles to diagnosing dysautonomia, you’ll probably feel relieved, at least on some level. It’s good to have a name for what ails ya! You’ve probably been diagnosed by a specialist, but if not, FIND ONE. Unless a doc has significant experience treating people with dysautonomia, it is likely that the care you’ll receive won’t be the best.

Dysautonomia specialists, generally undergo extra training in neurophysiology, biophysics, or cardiology. They “get” what people with dysautonomia are facing and are likely to have greater empathy and more patience in the search for answers.

Resources:

Dysautonomia International

To read the in-depth discussion of dysautonomia care that was the starting point for this article, go here. Share this post with someone you know who might be experiencing dystautonomic symptoms!