A Day in the Life of Someone with Dysautonomia
Dysautonomia is a family of disorders of the autonomic nervous system which controls functions in our body that are mainly unconscious or involuntary. According to Cleveland Clinic, symptoms of autonomic dysfunction can be localized or systemic. In this article, we will discuss dysautonomia in more detail, including the different types, causes, and treatment. Then we will review what it is like to live with dysautonomia on a daily basis.
Over 70 million people worldwide have some form of dysautonomia, and it affects people of all ages. races and genders.
Is dysautonomia a disease in itself?
Some people only have dysautonomia, meaning it is their primary condition. However, it can also be a symptom of neurological disorders. Either way, the result is a type of neurological failure of bodily functions that are supposed to work on autopilot, like heart rate, blood pressure, and temperature.
There is no cure. However, sometimes symptoms can be treated or reduced.
Types of dysautonomia
Postural Orthostatic Tachycardia Syndrome (POTS): In this disorder, the body does not adjust appropriately to a change in position, such as between lying down and standing. The heart rate increases an abnormal amount, and there are typically other symptoms as well, such as a drop in blood pressure. Prognosis varies, but it is usually not fatal.
Neurally Mediated Syncope/Neurocardiogenic Syncope (NCS): Syncope is fainting or passing out. It can happen for many reasons, including abnormal heart rate or blood pressure, poor circulation, a cardiac disorder, or even urination or coughing. Symptoms can often be treated by avoiding triggers or taking medication.
Multiple System Atrophy (MSA): This rare condition can sometimes mimic Parkinson’s disease. Patients can experience syncope/lightheadedness, dry mucous membranes, loss of bladder control, loss of balance, and more. MSA can cause widespread nerve damage, and sadly, it progresses rapidly until the body shuts down completely.
Familial Dysautonomia: This is a rare type of dysautonomia that primarily affects people of Eastern European Jewish heritage. It’s also called Riley-Day Syndrome, Hereditary Sensory and Autonomic Neuropathy Type III (HSAN III), or Hereditary Sensory Neuropathy Type III (HSN III). It is usually diagnosed at birth, as infants have trouble nursing and swallowing. Other symptoms include abnormal temperature, reduced sensitivity to pain and lack of tears when crying. It may be treated with medication or physical therapy to make symptoms more manageable.Other types of Hereditary Sensory and Autonomic Neuropathy (HSAN): HSAN2 or HSAN II, HSAN4 / HSAN IV, and HSAN1 / HSN1 all affect the body’s sensitivity and ability to feel pain. Sometimes only the hands and feet are affected, and numbness is accompanied by swelling. Inadvertent injury can easily occur as the patient cannot discern what is happening. Extreme care must be taken to avoid infection in this population because it can quickly lead to permanent damage or amputation.
Orthostatic Hypotension: Similar to POTS, when changing position, one may experience lightheadedness or syncope. In this case, the fainting is caused solely by a drop in blood pressure. Orthostatic hypotension may be a temporary condition, associated with medication and reversible when medication stops. Dehydration may also be a factor. However, sometimes it occurs for unknown reasons (is idiopathic) and becomes chronic. Injuries from falling are common risks with this condition. It can be treated with medication and addressing underlying causes.
Stuve-Wiedemann Syndrome (STWS): Typically diagnosed in infancy, this is a rare disorder. Unfortunately, symptoms are severe enough that most sufferers do not live past their first year. However, if diagnosed quickly, closely-managed patients may live longer. Characteristics include short stature, bone deformities, spontaneous fractures, hyperthermia, and respiratory distress. Treatment depends upon symptoms.
Autoimmune Gastrointestindal Dysmotility (AGID): JJust like it sounds, this disorder affects digestion, causing nausea, vomiting, diarrhea, constipation, weight loss, and more. Sometimes it is idiopathic, and other times there is an underlying condition, such as lung cancer. Managing symptoms, monitoring hydration and nutrition are all important.
There are more types of dysautonomia, but those are just a few of the main kinds.
What it’s like to live with Postural Orthostatic Tachycardia Syndrome (POTS)
I was diagnosed with POTS at age 17 with a Tilt Table Test, but the neurologist incorrectly told me that the syncope (fainting) I was experiencing would go away after adolescence. It got better as I learned to manage it, but never went away completely.
In my case, I also have a commonly-associated condition, called Ehlers-Danlos Syndrome (EDS), which comes with its own set of autonomic dysfunction. Even though I was born with EDS, I only received a diagnosis at age 37. However, that is a tale for another day. Meanwhile, let’s get started with a day in the life of someone with dysautonomia.
I wake up exhausted, because my body can’t regulate its own temperature well. I alternate between feeling overheated and having chills. This wakes me up many times so I rarely feel rested. By early morning, I’m finally so tired that I get a couple hours of sleep in a row.
I usually wake up between 6 and 7 am. My body hurts all over. I sit up carefully, and my blood pounds in my ears just from the tiny movement. I wait until my blood pressure and heart rate have adjusted, then stand up and go to use the bathroom.
I bend down to give my dog kisses and grab his food from the cabinet below the kitchen sink. The change in position leaves me with spots in my vision, and I brace myself on the counter for a moment to make sure I’m not going to pass out.
I have to take mom into town today, which is an hour from where we’re staying. It’s supposed to be in the 50s today, but I still put on a tank top. I pair it with the unusual combination of long pants, thick socks, and a heavy jacket.
I’m freezing when we get into the car, but soon the desert sun has me warmed up. I shrug off my jacket and am thankful the truck has dual climate control so mom can have warm air blowing on her while I have cooler air aimed at me.
After mom's appointment, I’m hungry and lightheaded. I didn’t bring any water with me for the trip, and my naturally low blood pressure is taking its toll. We grab some lunch, and I drink copious amounts of water. I start to feel better.
Next, we go grocery shopping. I’m wearing my coat for the first 20 minutes when I suddenly get a hot flash. Off goes the jacket and I fan my face for a moment until the dizziness stops.
On the way home, I’m aching all over from the long day. I start to go numb from the waist down from sitting, so I wiggle my toes and shift in the seat. The seat warmer helps with blood flow as well.
The resort we’re staying at has hot tubs. After dinner, the hubby and I go over for a soak. The warm water eases the pain in my sore joints. I’m careful to only stay in for a few minutes at a time and to drink lots of water from the nearby fountain. Thankfully, the excursion is relaxing and goes off without a hitch.
I do feel slightly dizzy during the shower after, though, as the enclosed steam always makes it harder for me to breathe. I finish quickly and then have some tortilla chips; the salt helps balance me out.
Soon it’s time for bed. I take my pain medication and hope I’ll have a more restful night tonight.
What to do if you think you have dysautonomia
Look up more information through a reputable resource, like Dysautonomia International, National Dysautonomia Research Foundation, or the National Institutes of Health. Write down a list of symptoms you’re experiencing and questions you have for a doctor.
Find a specialist who can evaluate you. Dysautonomia International has a list of specialists worldwide, here: http://www.dysautonomiainternational.org/page.php?ID=14. There may be some duplication, but the NDRF also has a list: http://www.ndrf.org/physicia.htm.
If you are diagnosed with an autonomic disorder and want to connect with others who understand what you’re going through, try this page.
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