WHAT IS DYSAUTNOMIA?
Dysautonomia or another name is POTS (Postural Orthostatic Tachycardia Syndrome) is a medical condition that causes a malfunction of the Autonomic Nervous System, which controls all the automatic functions of the body– like heart rate, blood pressure, temperature control, and digestion.
POTS is characterized by a rapid heart-beat (tachycardia) upon standing, as well as frequent light-headedness, dizziness, or even fainting due to a lack of proper circulation and decreased blood flow to the brain. Other symptoms can include blood pooling, fatigue, migraines, digestive problems, temperature dysregulation and more.
Although POTS is rarely heard of, it is not rare. POTS can affect anyone, but most often occurs in females ages 12-40, and is estimated to impact every 1 out of 100 teenagers.
MY POTS STORY
Hi, this is Nan and I want to share a big part of my life. Our Whole Sister account was started originally out of a need to learn more about nutrition and get me feeling better when I was first diagnosed with POTS. I’ve had a long journey to recovery and now Nicole and I really want to use our platform to spread awareness about causes we truly believe in. For those of you who don’t know, Nicole is a Type 1 Diabetic. Together we’re determined to help anyone who suffers from POTS or Diabetes.
Here is my story and my hope is that you learn more about this disorder and if you’re currently suffering you can gleam some hope!
First you need to know that before this illness I was your typical mom of 3 boys. I was healthy, in fact I rarely saw a doctor. I had never been a sick person in my life, despite the occasional cold and I was even working out 4 days a week before this all happened.
I was having a great life and everything seemed to be going good until Memorial Day 2012 when I got into our hot tub. When I went to get out I couldn’t walk, I was lightheaded and knew immediately something was wrong. I was fighting a virus that our family caught at Disneyland and I just didn’t get better when everyone else did. Within days of my hot tub experience I was even sicker and went to the doctors to find out what was wrong. The only problem was they had no idea, even after running many tests.
I couldn’t do the normal day to day things we all take for granted. I couldn’t walk to the mailbox without passing out. I couldn’t breathe, it was like I could never get enough air in my lungs. Taking a hot shower or bath would make me pass out, hence that is why the hot tub experience was so scary.
Eating was something I hated to do because it would make me sick. I was extremely weak, even lifting my arms to fold laundry was impossible to do. Another problem I had was being able to think. I clearly remember the day my 3rd grader asked for help doing math and I ended up in tears because my thinking was so blurred. Lets not even talk about how I went from a great sleeper to barley getting 3 hours a night.
After a few weeks I was completely homebound, I was unable to drive my kids to school or even do simple things like pack their lunches. I couldn’t believe my health could take a turn so quickly. It was a long 3 months of trying to survive, yet not knowing what was going on. It was rough, I’m not going to lie its the biggest trial I’ve ever faced in my life. It wasn’t only scary for me but my family who worried they were losing their wife, mom, sister and daughter.
I was in and out of the hospital with no diagnosis for months. My husband, sister and parents were helping take care of my family at this time, as I could barely take care of myself. I was deteriorating quickly and was determined to figure out what I had and quickly got researching.
I’m a Registered Nurse so I was using every resource I could find. One day I stumbled upon a disorder called POTS and all the symptoms fit me perfectly. Then I found a doctor who officially diagnosed me with POTS (Postural Orthostatic Tachycardia Syndrome). My doctor believes I got POTS from the virus I caught in Disneyland. It was such a relief to finally know what I had but a big diagnosis to take in and start on the road to feeling better.
Your autonomic system controls things that your body does automatically like breathing, regulating your body temperature, or even pushing blood through your body. With POTS your blood vessels don’t contract like a normal person. When someone with POTS stands up their blood rushes to their feet not allowing blood to your upper body and your heart rate increases to compensate for the lack of blood, upwards of 200 bpm. When this happens it’s common for a person to pass out due to the lack of oxygen to the brain. Hence any sort of heat is terrible for someone suffering with POTS.
The other symptoms are shortness of breath, lightheadedness, fatigue, tremors, blurred vision, sleep disorder, anxiety, exercise intolerance, headache, body aches, heat intolerance, low blood pressure, and the list goes on. POTS is very common in teenage girls. The inability to stand is the most common and hardest symptom; it was even hard for me to walk from the kitchen to my bedroom without almost passing out. During this time I was even a proud owner of a wheelchair and handicap-parking pass, this was very humbling.
Why do I share this? In the hopes that if you’re that someone with any of these symptoms, look it up and ask your doctor questions. I’m here today wanting to spread “hope” to those who may have this rare disorder or any other health issue. I am one of the lucky few who have made a 95% recovery and I’m no longer on medication.
It took me two long years to recover from this horrible disorder yet so many POTS patients never regain the life they once knew, I’m forever changed by this experience. I have learned to be more compassionate and less judgmental of others, you never the know the battle others are facing behind closed doors. This disorder is not curable but I have found success maintaining wellness with nutrition, exercise, and faith in something higher than myself.
Unfortunately I have a 14 year old son who started with some of the same symptoms and was also diagnosed with POTS last year. I was able to help him immediately by incorporating medicine, good nutrition and exercise. This isn’t a way to cure POTS but helps you live a better life with fewer symptoms. I actually have gratitude that I was diagnosed first so I could quickly figure out what he had. Its amazing how life works and who knew I’d be helping my own son the most!
While I was on the road to recovery, Nicole and I started posting on IG to be accountable to one another, we never knew it would reach so many of you. Who knew this account would be the most beneficial to us as we try and keep ourselves and families healthy. We are honored to share this space with you and give back since we have been given so much.
Please know you’re not alone if you’re dealing with something that seems to have no end in sight. Keep fighting and trying to be the best form of yourself. I also fully believe in miracles! Thanks for allowing me to share this story, if I can at least give anyone hope this account has done good. Don’t take life for granted and love life to the fullest!
This is a great video from http://dysautonomiainternational.org, I strongly encourage you to go here for more resources and information!