How Postural Orthostatic Tachycardia Syndrome / POTS Diagnosis Changed My Life
(Posted on Friday, October 29, 2021)
After having my 3rd baby, my life changed… and it’s not in the way you are thinking. In all honesty, I have been hesitant and nervous to share about my experience. Maybe because it is simply personal, or maybe because it has taken me over three years to figure out what is going on in my body and I only recently began to understand.
Maybe it is because I wanted to wait until I was on a good treatment plan so that I could possibly offer help and hope to another who is experiencing something similar… so that I will have insight to share. You may have noticed I have not posted here in quite some time. This is why. I have been trying to get my health back on track.
It is Dysautonomia Awareness Month, so here is my story in the hopes that it may help another and help raise awareness to a medical condition that many know little about.
You may have read my birth story, but, in case you have not, I developed postpartum preeclampsia after the birth of my third child. Several days after giving birth, my blood pressure skyrocketed and I had to be hospitalized. Following this experience, my blood pressure has remained off for almost four years. I feel like I have never gotten back to my old healthy self.
The best way to describe the experience is that I continued to feel like I was very late in my third trimester of pregnancy for years. I had brain fog, extreme fatigue, dizziness, nausea, food aversions (I always felt full which made it difficult to eat), and just general discomfort. I also continued to experience issues with blood pressure, heart rate, and temperature regulation (frequent low-grade fevers).
For three years, I met with doctors, describing my symptoms, looking for hope that I could find out what was going on in my body and find a way back to my old self.
Eventually, dysautonomia was confirmed through a tilt table test done by a cardiologist. Basically, the way it was explained to me at the time: my brain wasn’t correctly communicating with my body.
Next, I ended up at an allergist due to my nausea and found I was allergic to over 33 foods. I was shocked as I had never had any allergies before. I tried to eliminate foods and went months without any form of grain, dairy, sugar, nut, condiment, and so on but it wasn’t making enough of a difference to be worth the trouble. Those of you who know me personally know how much I love and enjoy food. These months were very difficult in many ways.
Only more recently, I found a wonderful doctor who specializes in POTS, only a couple of hours away. There aren’t many doctors out there who specialize in this area, which is very sad considering the prevalence of this disorder. I had a great deal of testing done, and was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS).
Receiving an actual diagnosis gave me hope.
“Mast Cell Activation Syndrome (MCAS) is a disorder where mast cells are activated even without IgE or classic allergic triggering” (www.dysautonomiaclinic.com). It seemed that this was causing the food allergies, and also likely contributing to my POTS.
Being that October is Dysautonomia Awareness Month, I wanted to share my story and some more information to help raise awareness about dysautonomia and POTS.
Dysautonomia is “a group of medical conditions caused by malfunction of the Autonomic Nervous System which regulates heart rate, blood pressure, digestion, kidney function, temperature control and more” (www.curedys.org). Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia. POTS patients have orthostatic intolerance; their heart rate goes up more than it should when they stand up. It is difficult to get upright (Dysautonomia International).
Symptoms can range from very mild to very severe. Every patient is different, has different symptoms, and responds differently to medications and treatments. This makes it more difficult to manage.
POTS can cause dizziness, brain fog, fatigue, heart palpitations, headaches, body pain, malnutrition, new onset allergies, IBS, tightness of chest, light and sound sensitivity, shortness of breath, fainting, stomach issues, nausea, exercise intolerance, lightheadedness, tingling, blood pooling, heat intolerance, GI tract shut down, and more (Dysautonomia International).
Many people with POTS look very healthy and don’t visibly look sick, but they may experience extreme discomfort and symptoms. This has put into perspective even more so that you truly never know what a person is going through.
Surprisingly, 1 in 100 teens develop POTS. POTS impacts an estimated 1,000,000 to 3,000,000 Americans and millions more around the world (curedys.org); and over 70 million people worldwide live with various forms of dysautonomia (www.dysautonomiainternational.org).
POTS is more common than one might think, but awareness about POTS is low. In fact, many doctors have never heard of POTS. 75% of POTS patients have encountered a doctor who has never heard of POTS (www.curedys.org/awareness).
Many different medical conditions can cause POTS. About 50% of patients developed POTS after an infection of some kind (curedys.org). There are many other causes, however, which can make the cause difficult to pinpoint. Many may never know the cause.
Every single day I feel like I am fighting… fighting my own body, pain, dizziness, even sadness, and on some days, hopelessness… fighting to heal. Fighting to put on a happy face and stay in the now as much as I can with my kids, even if it’s a rough day.
I don’t know how this will go or if I will fully heal, but I do know this has given me strength that I never had before. I have my why and I know I can weather this storm. I am on a good path and have made some huge strides with the right medication/ treatments. I will continue to fight and move in this direction.
To learn more about dysautonomia, check out: www.vimeo.com/dysautonomia
Here is a wonderful video that explains POTS.
Please reach out or comment below if you have questions or want to know more. I would be glad to share more of my process in the future. If you know someone effected with POTS, please share this post. There is something truly amazing and empowering about being about to support one another and knowing that you are not alone.
You can also reach out over on my Instagram page at www.instagram.com/theysayparenting .
To learn more about me and my blog, check out: About Lauren
You may also enjoy: What Makes a “Good” Parent, It’s Not What You Think or 30 Plus Fun Craft and Activity Ideas for Kids with Household Items
Check out my parenting book full of ideas for cultivating confidence in parenthood, and not always having to listen to what “they” say: They Say, Not Your Average Parenting Book