October is Dysautonomia Awareness Month! To help raise awareness, I’ll be answering a number of questions about my experience with Dysautonomia! Feel free to scroll through and get your questions answered.
- What form of Dysautonomia do you have?
I have Postural Orthostatic Tachycardia Syndrome (POTS) and Inappropriate Sinus Tachycardia (IST). POTS is characterized by the dysfunction of the autonomic system, which is the part of the nervous system that controls important involuntary functions of the body, like the heart and lungs. People who suffer from POTS experience dizziness, lightheadedness, loss of consciousness, elevated heart rate and abnormal blood pressure. Because of our circulation issues, POTS sufferers often will have blood pool in our feet while we are sitting or standing. The body’s solution to rectify this problem is to force the body to become horizontal so that the blood can return to the heart and not have to contend with gravity, so the body passes out to get the body into a neutral position again. I personally pass out from POTS at least once a day. IST is characterized by an elevated heart rate, even when the body is at rest. My heart rate is pretty consistently 100 bpm or higher.
- Is it your primary condition?
POTS is one of my three primary diagnoses (comorbid with Ehlers-Danlos Syndrome and Gastroparesis).
- When did you first experience symptoms?
I know I had passed out a few times in my junior year of high school, but I first started noticing significant symptoms during my senior year, when I was 18. I was heavily involved in theater, and there was one show where I passed out nearly every time I stepped off-stage. I had already been struggling with passing out a number of times in the months prior to the show and knew that at this point, going to the ER was futile.
- When were you diagnosed?
In May of 2018, my warm water therapist raised the possibility of POTS when I explained some of my physical struggles I wanted to work on getting relief from. She referred me to the best pain doctor in my network. When I met with him in early June of 2018, he evaluated me and said he was fairly certain I had POTS, and I got a referral to the faint and fall clinic. Mid-July I was given a 48-hour heart monitor and was scheduled for a tilt table test (TTT). On July 25, 2018, I had my TTT which confirmed, once and for all, that I had POTS. It was a 5-year struggle to get my diagnosis!
- Did you experience any misdiagnoses?
For years I was simply told that my fainting spells were simply because of stress or anxiety.
- Were you ever told it was all in your head?
YES! I eventually stopped going to the ER for my fainting spells. Even when it got so bad that I was scared to drive or shower or even wash the dishes. There were times I couldn’t get out of bed because of the dizziness and lightheadedness, but I knew if I sought medical help, I would be dismissed as faking it or that it was all in my head.
- What are your primary symptoms today?
When I go from laying down to sitting up, or from sitting to standing, I get blurred vision and my heart pounds.
- Do you use salt, saline, or medication interventions?
I do. I make sure I’m constantly snacking on salty foods like pita chips or goldfish, and love eating mashed potatoes or pasta with a lot of salt on it! I’ve also tried a variety of medications. The one I’m on currently seems to be helping. It stimulates the nerve endings in my blood vessels, causing them to contract, which moves the blood out of my limbs and back into my heart, instead of the blood pooling, which would cause me to faint. I’m looking into taking salt tablets to help as well.
- Do you follow the Levine Protocol?
Not yet. I am unfortunately too weak to perform daily cardiovascular or muscular exercise, but it is something me and my physical therapist have set as a goal for me!
- Have you had a tilt table test, sweat test, or other autonomic testing?
Yes, as I mentioned earlier, I have had a tilt table test which did confirm the POTS diagnosis.
- Any hospitalizations?
Not yet. For the first 5 years that I had POTS, I wasn’t believed to have any issues of concern by ER staff and therefore was never hospitalized.
- What kind of doctor handles your dysautonomia care?
I have a cardiologist who also coordinates with the faint and fall clinic, as well as a pain doctor, physical therapist, and warm water therapist.
- Do you belong to any support groups?
I do! I am a part of 2 different POTS-specific support groups on Facebook, and I also occasionally attend pain management classes at my pain clinic.
- Are you still able to attend school/ hold a job?
I was not able to attend college, and I work 6 hours a week. When I’m at work, I use a rollator walker to help prevent fainting spells. I often have to lay down and elevate my feet during my shift to get the blood back into my heart.
- What’s one thing you wish people/ doctors understood about dysautonomia?
IT’S NOT ALL IN MY HEAD! IT’S NOT FROM ANXIETY!
- Do you identify as disabled because of POTS?
I do. I almost always have to use a cane or walker for stability, and the longer I am on my feet, the more likely I am to pass out. I have a permanent handicapped parking pass for that very reason.
- Do you use mobility devices?
Yep. I use a walker that has wheels and a seat on it when I go to work, or am out shopping. I use a cane to walk into the doctor’s office or a restaurant. I sometimes use a crutch to get around the house.
- Do you have a service dog? Do they alert for dysautonomia?
I do not have one currently, but am looking into the possibility of getting one in the future, because there is a great need for one in my life. And yes, they can be trained to alert me of possible fainting spells or to get help in the event that I lose consciousness.
- What worries you most about having POTS?
Seriously hurting myself when I pass out, like hitting my head or breaking my arm.
- What gives you hope? How do you persevere through the hard days?
My support groups really help to get me through the hard days. I also have absolutely fantastic friends who take care of me when I pass out and help me manage my condition when I get frustrated and lose hope.
That’s it! Hopefully, you learned a thing or two about dysautonomia, and specifically, POTS. For those of you hungry to learn more, please check out Standing Up To POTS.
Do you have POTS, or have a loved one with POTS? Definitely be sure to check out the page on relationships from Standing Up To POTS.