Interview by Chelsea Goldstein for Dysautonomia Information Network
Hi! My name is Savannah and I am 26 years old. I have Postural Orthostatic Tachycardia Syndrome (POTS). I also have Ehlers Danlos Syndrome (EDS), Gastroparesis, Trigeminal Neuralgia, Vocal Cord Dysfunction, and dermatographia. I love to read, paint, knit, color, sing, and pretty much anything else that could be a creative outlet.
I accomplished my dream of becoming a nurse, but dysautonomia took that from me. I’m currently an LPN, and I hope for a cure one day so that I can become an RN in labor and delivery. Until then, I work on fulfilling my dream of helping others by spreading awareness of my conditions.
When were you diagnosed with dysautonomia?
I was 21, and it took a little over a year to be diagnosed with dysautonomia because I was sent on a wild goose chase of visiting different doctors, multiple tests, and random symptoms. The diagnosis was relatively quick once I was finally sent to neurology – I believe it was less than a week.
Did you have any early signs of dysautonomia before you were diagnosed?
I’ve had symptoms my entire life, especially dizziness, headaches, fatigue, blacking out, palpitations, chest pain, and shortness of breath. It definitely got worse after I graduated college and started my nursing job.
Did you experience any barriers during your diagnostic process?
Yes. My symptoms were always associated with being a dramatic teenage girl. When they got worse after college, doctors didn’t believe me, my boss didn’t believe me, and it even got to the point where my family was questioning whether it was all in my head. Getting my diagnosis was such a relief because even I was starting to believe that maybe I WAS “going crazy.” I started to think that maybe it was anxiety and depression that was causing my symptoms, BUT I fought and fought and I’m so glad that I stuck with my gut.
What were your initial reactions when you were diagnosed?
I had never heard of dysautonomia before, even being a nurse. I was confused, but so relieved I had a diagnosis to finally make sense of everything I was going through!
At right: Savannah lying down with her legs elevated
What else would you like to share about your diagnostic process?
It is SO important to trust your gut. Your body will let you know that something is wrong, and don’t take no for an answer. You must be your own advocate sometimes, and it is important to remember that no one knows your body better than you do! Write down your symptoms and keep a log of everything you can. It will come in handy.
At left: Savannah in a hospital bed
What do you do to manage your dysautonomia on a daily basis?
I now see an electrophysiologist who helps manage my symptoms, and they prescribed propranolol (a beta blocker) that helps control my heart rate. I also receive saline infusions twice a week and it helps some! With my gastroparesis I can’t drink plain water, so the infusions help both the POTS and gastroparesis. I also have increased my salt intake, try to take everything slow, rest when I need to (including napping because I absolutely crash in the afternoons), avoid eating big meals, and try to avoid things that may possibly trigger fainting episodes. Even still, I’m not always lucky enough to avoid them.
What is the most difficult aspect of living with dysautonomia?
Probably the unknown. You never know what is going to happen next with your symptoms, and you must try your best to be as well prepared as possible.
Has living with dysautonomia changed your perspective in any way?
Absolutely. I don’t take anything for granted now, and I make sure to take time to appreciate all the little things. “Stop and smell the roses” has a new meaning and approach for me. My good days are fantastic, although few and far between, and I take my time to just enjoy doing anything. Getting out of the house now is a big “to do” and before it felt like a chore.
At right: Savannah resting with her cat
Have you learned anything else from living with dysautonomia?
To expect the unexpected. When you’re healthy and you don't have to worry about what tomorrow brings in terms of your health, you don't necessarily feel like there is going to be anything unexpected. When you are living with a chronic illness you must remember that just because you had a good day today, it doesn't mean that you are going to have another good day tomorrow.
If you could give fellow Spoonies one piece of advice, what would it be?
You must be an advocate for yourself. It's always great to have supportive family and friends but you must be willing to stand up for yourself and your health to get the results, diagnoses, medications, therapies, and anything else you may need to be able to function. This will be a never-ending fight and you must be prepared to be a warrior and fight for yourself!
Remember that you are worth fighting for. Have patience, you’ll need it. Try to stay positive. It’s okay to have days when you break down, but the next day stand back up (slowly, because dysautonomia!) and face the day with a new outlook and attitude. We got dys! Encourage people to learn. Spread awareness. Most importantly, take things one day at a time and don’t be afraid to ask for help!
At left: Savannah showing her port
If you could change one thing about the way people perceive dysautonomia, disability, and other chronic health conditions, what would it be?
I wish that others would be willing to learn more about chronic health conditions and disabilities. I also wish that they would take a minute to think about if the circumstances were different - what if they were the ones suffering from the same things that we do? It really is a battle and I don't think that people understand how much we fight.
Do you have a favorite quote, song, movie, or book that has helped you?
“You have been assigned this mountain so you can show others it can be moved.”
“Dying is easy, young man, living is harder.” -Hamilton. I have never heard truer words!