BATON ROUGE, La. (BRPROUD) — A fit and healthy 26-year-old woman said that all of a sudden, she was hit with a mysterious illness that left her, “unable to stand up or walk, and I had persistent dizziness, nausea, severe brain fog, chronic fatigue, migraine, and fainting.”
She spent a month in the hospital.
A high school student with big plans for her future says her life was forever changed when, “One Saturday during my senior year of High School, I woke up with a stomach virus that never went away. It continued for years while more symptoms piled on. During that time, I was tested for everything in the book but when test after test showed nothing wrong, many people told me, ‘maybe you’re depressed,’ or, ‘I believe you’re doing this for attention.'”
What is dysautonomia?
Dysautonomia, also called autonomic dysfunction or autonomic neuropathy, is relatively common and affects more than 70 million people across the globe, according to the Cleveland Clinic.
But what exactly is dysautonomia?
It’s actually a label given to a group of medical conditions caused by a dysfunction of the autonomic nervous system, which are the nerves that regulate nonvoluntary body functions such as heart rate, blood pressure, and breathing.
Experts say that people who have dysautonomia are often misdiagnosed due to the fact that the disorder causes such a wide range of symptoms. So, many doctors find themselves unsure of the root cause and simply attribute the patient’s symptoms to anxiety.
How does dysautonomia affect sufferers?
Symptoms may include:
- Balance problems
- Blurred vision
- Brain “fog”
- Chest pain
- Changes in blood pressure
- Changes in body temperature
- Difficulty swallowing
- Dizziness or lightheadedness
- Dry eyes or excessive tearing
- Erectile dysfunction
- Fast or slow heartbeat
- Frequent urination
- Irregular heartbeats
- Light sensitivity
- Loss of bowel or bladder control
- Mood swings
- Nausea and vomiting
- Noise sensitivity
- Ongoing fatigue or tiredness
- Shortness of breath
- Sleep problems
- Sweating heavily or not at all
Sylvia Arotin, quoted at the outset of this article, says she experienced such severe symptoms that her entire life was upended for a time.
Arotin explains, “My daily life would consist of moving (if I could) from the bed to the couch and back again, while dealing with tachycardia, nausea, dizziness, migraine, hot flashes, presyncope, and brain fog in various combinations.”
Are there any effective treatments?
According to the National Institute of Neurological Disorders and Stroke, “There is usually no cure for dysautonomia. Secondary forms may improve with treatment of the underlying disease. In many cases treatment of primary dysautonomia is symptomatic and supportive. Measures to combat orthostatic hypotension include elevation of the head of the bed, water bolus (rapid infusion of water given intravenously), a high-salt diet, and drugs such as fludrocortisone and midodrine.”
Amanda Ross, mentioned earlier, implies that there is hope for sufferers.
Ross says that after consulting with her team of physicians for a few months they were able to help her manage her condition and that she soon felt “almost normal.”
Arotin also explains that after working with doctors and changing her diet she was able to find some relief.
Chronic illness and battling criticism
However, Arotin added that one of the most difficult aspects of battling a chronic illness boils down to judgement and criticism from those who don’t understand her condition.
Arotin said, “The hardest part about this condition, and any form of dysautonomia, is that it is an “invisible illness.” In fact, I’ve lost count of how many times someone has said, ‘You look good though, you don’t look sick.'”
To combat unfair treatment in professional settings, she learned to stand up for herself and advocate for her rights as a person with a disability. Having the courage to do this has paid off.
She says she now runs a preschool which has, “won numerous awards for excellence in education and innovation, appeared in the media, and even partnered with government agencies and the Department of Education.”
We are always taught to never judge a book by its cover, and how true did this now ring to me.Sylvia Arotin, on living with a chronic illness
If you experience some of the symptoms mentioned in this article and suspect you may suffer from dysautonomia it may be wise to consult with your physician.
If you’ve been diagnosed with a form of the dysfunction and would like more information on how to cope with it, helpful suggestions and opportunities for collaboration may be found online at www.dysautonomiainternational.org