For years I lived with so many confusing symptoms. My heart rate always felt high and I’d get numerous heart palpitations a day, I constantly felt off balance like I was walking on a boat, my legs felt shaky while standing, I had muscle spasms and vibrations all over my body, I developed pain and tension in my neck, jaw and upper back, and my chest would get really tight whenever I stood up.
I went to a variety of doctors looking for answers (primary care, neurologist, ENT, chiropractor, and multiple cardiologists). I was told over and over again that nothing was physically wrong with me and that it was probably anxiety, so I started to believe it. My “anxiety” consumed me. By the time I left for work each day I was exhausted. I’d push through fearfully watching my symptoms and wondering what would happen next. The whole thing didn’t make sense though, because even relaxing at home made me have these anxiety symptoms.
I knew something was wrong with my body and I started doing research to learn about the brain and nervous system. One day I stumbled across the conditions dysautonomia and postural orthostatic tachycardia syndrome (POTS). I read through the symptoms of POTS and knew without a doubt that I had it. I printed out some materials and highlighted all of my symptoms. I brought it to my cardiologist and said, “I really think I have this!” She glanced at the paper and responded, “we see that once in awhile, but I don’t think you have it.”
I was so discouraged, but I didn’t want to give up just yet. I searched for a doctor in Raleigh, NC that had dysautonomia listed as a condition they treat on their website and I found Carolina Functional Neurology Center. During my initial appointment, Dr. Brindisi did a tilt table test and my heart rate went from 80 to 156 beats per minute – an increase of 76 beats. I had a very positive diagnosis for POTS.
I started treatment and began noticing a huge difference after a few weeks, and now I am feeling better than I have in years. My heart rate is more stable and does not increase drastically when I stand up; my shakiness and unsteadiness are improving; my energy levels are much better; and my back, neck and jaw pain has significantly decreased. It is truly amazing and I’m so thankful that a holistic form of treatment exists for this syndrome.
My heart goes out to everyone who is currently searching for a diagnosis and treatment options for POTS. I spent years living in confusion about what was happening to my body, and I can’t count the number of times I broke down crying because of how awful I was feeling. I am so incredibly grateful for Carolina Functional Neurology Center and I cannot recommend them enough for dysautonomia treatment.”
– Kristi, Carolina Functional Neurology Center Patient
What is the autonomic nervous system?
The autonomic nervous system regulates functions of your body that happen automatically, such as your heart rate, blood pressure, breathing, digestion, and temperature control. The system is made up of two main divisions: sympathetic and parasympathetic.
The sympathetic system is better known as “fight or flight” and prepares your body for stressful situations. Imagine if you were on a walk and saw an angry bear running toward you. Your heart rate and blood pressure would increase, your muscles would tighten, and you would become very focused on the threat you face. This is your sympathetic nervous system kicking in.
The other division of the autonomic nervous system is the parasympathetic system. This system is referred to as “rest and digest” and controls body processes during normal, everyday situations. It lowers your heart rate and blood pressure, stimulates digestion, and relaxes your muscles.
The sympathetic and parasympathetic systems work well together to bring balance to the body. However, issues can arise when these systems are not functioning properly.
What happens when the autonomic nervous system malfunctions?
Dysautonomia is the term used to describe a dysfunction of the autonomic nervous system. Since this system regulates a large portion of the body’s functions, a variety of symptoms can be felt when it’s not working properly. Physical symptoms include dizziness, fatigue, fainting, chronic pain, headaches, abnormal sweating, shakiness, breathlessness, nausea, vision issues and more. There are many types of dysautonomia, but the most common are postural orthostatic tachycardia syndrome (POTS), orthostatic hypotension and neurocardiogenic syncope.
- POTS: Patients with POTS have tachycardia (or a fast heart rate) when standing, due to inadequate blood flow in their bodies. A tilt table test is usually used to diagnosis the syndrome. During the test, the patient lays flat on a table as their heart rate, oxygen levels, and blood pressure is monitored. The table is then tilted slowly up to 90 degrees. Normally your heart rate should increase by around 10 – 20 beats per minute as your body adjusts to standing up. For adults, if your heart rate increases by more than 30 beats than you’re diagnosed with POTS. For children and adolescents, the heart rate would increase by more than 40 beats per minute.
- Orthostatic Hypotension: If your blood pressure drops against gravity that is known as orthostatic hypotension. If your systolic, or the top number in your blood pressure, drops more than 20 mmHg or if the diastolic, the bottom number, drops more than 10 mmHg then you meet the criteria to be diagnosed with orthostatic hypotension.
- Neurocardiogenic Syncope: Neurocardiogenic syncope (also known as vasovagal syncope) occurs when your heart rate and blood pressure drop and cause you to faint. This could be mild to severe in nature and may cause further issues, such as concussions which are common among people with neurocardiogenic syncope. A tilt table test is also used in the diagnosis of neurocardiogenic syncope.
In all cases of suspected dysautonomia, it is important to first rule out any organic issue with your heart that could be causing these symptoms. If your cardiologist clears you, then the next step is to find a functional neurologist who commonly treats these types of conditions.
Finding an original cause for dysautonomia can be difficult. Some people develop symptoms gradually, while others have them happen suddenly after a specific event. Most commonly, people will develop dysautonomia following a concussion, which may or may not have been previously diagnosed. Other possible causes include infections such as Epstein Barr and Lyme Disease, genetic disorders, diabetes, physical trauma, pregnancy and surgery. Anyone can develop dysautonomia, but studies show that it is more prevalent among women between the ages of 15 and 50.
Unfortunately, many patients are misdiagnosed for years before learning about dysautonomia. Research by Dysautonomia International found that people with POTS see an average of seven doctors and are misdiagnosed for an average of 4.2 years prior to being diagnosed.
Is there a cure for dysautonomia?
The majority of doctors will tell you that there is no cure for dysautonomia, but you can treat the symptoms. Medications are commonly prescribed to help regulate your heart rate and blood pressure, and increase serotonin in the brain. Patients are also encouraged to increase fluid and salt intake, wear compression socks, and participate in physical therapy and gradual exercise programs.
Functional neurologists have a different approach to treating dysautonomia. Functional neurology focuses on the concept of neuroplasticity, or the brain’s ability to change based on environmental, emotional and physical stimuli. Since dysautonomia patients have issues with their nervous system, functional neurologists are able to combine their knowledge of neuroplasticity with treatments that activate the nervous system and encourage positive, healing changes to take place without the use of medications or surgery.
At Carolina Functional Neurology, we commonly see patients that have all of the symptoms of dysautonomia but are told by their doctors that there is nothing wrong. This is often due to the fact that the patient doesn’t meet the full diagnostic criteria for a particular disorder. They may be close to getting a diagnosis but miss by margins and their symptoms continue or worsen. We, unfortunately, see this far too often – where our patients “fly under the radar” and are misdiagnosed (especially with anxiety) and undertreated.
We take a different approach and look at the patient as a whole to find the root cause of their symptoms. An initial assessment of a dysautonomia patient includes a comprehensive bedside neurological exam, tilt table test, detailed eye movement exam (video-oculography), balance testing (computerized posturography), and lab work. Through these tests, we’re able to pinpoint areas of the brain or pathways in the brain that are dysfunctional and the root cause of the patient’s symptoms.
Once test results are in, we create a customized plan to restore normal autonomic nervous system function. Treatment may include tilt table therapy, neuromodulation to activate different cranial nerves through sensory stimulation (such as the vagus nerve), eye movement exercises, vestibular rehabilitation, interactive metronome, hyperbaric oxygen therapy, nutritional counseling, and cognitive exercises. Through neurological rehabilitation, we are able to correct dysfunctions of the nervous system to greatly decrease or eliminate symptoms. Our goal is to find the root cause of your symptoms, not mask them, and create positive changes in the brain, leaving you with little to no symptoms and back to living a normal, healthy life.
Do you have dysautonomia?
If you are experiencing the symptoms detailed above, you may have dysautonomia. We offer free phone consultations where we can discuss your symptoms and schedule an initial assessment. You do not have to keep living with these troubling and debilitating symptoms. Healing is possible and we are here to help. Click here to schedule a free consultation.