Real People With Dysautonomia: Angela w/ @positivityPOTSEDSMCAS

Can you imagine feeling like total crap most of your life and not knowing that it wasn’t normal?  Angela Tucker, 34, can because that has been her reality.  A dysautonomia influencer and an advocate with almost 12,000 followers on Instagram, Angela wants you to stay positive knowing you’re not alone in this journey.  

I couldn’t properly function and realized other people didn’t have these problems.  

My diagnostic journey started in 2007 when I was in college. I played basketball in high school and I never had to run 5 miles. In college, you have to do multiple types of workouts and running 5 miles was part of it. One day after running, I had an episode where I was dizzy, my heart was pounding (there were no Fitbits or Apple watches then), I had chest pain, and knew something wasn’t right. I went back to my apartment and I collapsed on my bed for 3 hours waking up confused as to where I was. 

That scared the heck out of me.  

That is insanely scary.  

College is often a time when people with dysautonomia start experiencing serious symptoms and eventually come to a diagnosis.  While this is true, dysautonomia can occur at any age from birth on.  Let’s take a look at what was going on with Angela.

I had an episode on a flight where I had my heart beating fast, sweating through my clothes and dizziness. I didn’t understand why that happened and then I didn’t feel right after that episode and that’s when my diagnostic journey started. 

I went through so much testing and the doctors were stumped. They had me doing vocal cord therapy at one point and I left with a diagnosis of costochondritis, inflammation of cartilage in my ribs and chest. I knew they were missing something, but I kept going. I had to stop playing sports due to symptoms and so I just focused on my career and future. 

After I graduated college, my gastrointestinal symptoms were escalating. I thought I was allergic to gluten and tried cutting that out with no improvement. In 2019, my gastrointestinal symptoms became unbearable. I had an endoscopy – everything looked “fine” so they placed me on a medicine to help calm my stomach down. I still couldn’t get relief. 

Angela was definitely on to something there.  Gluten intolerances are common with POTS patients.  A study done in 2016 found that 19% of people with POTS have a gluten intolerance.  But, it’s clear to see that wasn’t the only thing happening.

Things went downhill quickly for me in 2021, I had zero quality of life and had to resort to crawling around my apartment. I knew something wasn’t right. 

I had two more flight episodes – similar to my one in college (sweating through my clothes, dizzy, nausea) except I had a smartwatch and my heart rate was between 170-200. They ran a ton of testing again, but still couldn’t find anything that matched up. 

Finally, in August of 2021 my body basically was like you need to stop – something is wrong. I woke up in the middle of the night – losing my vision temporarily, my heart rate was in the low 40’s, I was dizzy, felt like I was going to pass out, nauseous – rushed to the hospital in an ambulance. They found my TSH level elevated (thyroid level), but that didn’t explain everything either. 

I had handfuls of ambulance rides and emergency room visits – it was tough. I got diagnosed with Dysautonomia/POTS in 2021 on a tilt table test. The rest of my diagnosis came in late 2021/early 2022. From 2007 until then – 14 years for them to figure this out, but we are also still going as there could be more conditions occurring. I am still going through lots of testing to better identify treatment paths. 

Wow!  The average time for most people to be diagnosed with POTS is seven years.  Angela’s diagnosis took 14 years from start to finish.  She shares what those conditions are in full.

Currently, I have been diagnosed with Ehlers Danlos Syndrome, Mast Cell Activation Syndrome, Dysautonomia in the form of Postural Orthostatic Tachycardia Syndrome, Chronic Fatigue Syndrome, Median Arcuate Ligament Syndrome (MALS), Superior Mesenteric Artery Syndrome, Nutcracker Syndrome, Small Fiber Neuropathy, and a Bicuspid Aortic Valve.

In college, I saw:

• Cardiologists
• Ear, Nose and Throat
• Geneticists
• Physical Therapists
• Pulmonologists

In the more recent years, I have seen:

• Allergists
• Cardiologists
• Endocrinologists
• Gastroenterologists
• Gynecologists
• Hematologists
• Immunologists
• Nephrologists
• Neuro-Gastroenterologists
• Neurologists
• Nutritionists
• Orthopedic Surgeons
• Occupational Therapists
• Physical Therapists
• Primary Care
• Rheumatologists
• Urologists
• Vascular Surgeons

Along the way, I experienced a lot of medical gaslighting and doctors telling me it was all in my head or women have a lot of stress in their lives. It made me furious. I fought really hard to research the best doctors who understood my conditions and sought feedback from Facebook Support Groups. 

Once I found my core team, things headed in the right direction as they understood these conditions and knew what tests to order. To this day, my Geneticist will always remind me that my illness is valid and it’s not my fault.  I will forever appreciate him as he knows the gaslighting experiences chronic illness patients have. Finding providers who have experience and understand your conditions is critical. Also, speak to other chronic illness patients about their experiences. 

NormaLyte is critical to my success of managing POTS. It has kept me out of the hospital for dehydration. If I go into the emergency room now, I actually drink NormaLyte and refuse the IV as NormaLyte works better for me.

I manage my other conditions with medications, applications on my phone that track data, light exercise, compression socks, compression gloves, low histamine diet and liquid nutrition, help from my significant other, resting and pacing, heating pads and many more things. It’s not easy to be constantly managing symptoms day in and day out. 

Family and friends are always important to the success of your chronic illness journey.  Angela lives with her boyfriend and their dog Homer.  Despite the journey to health, she graduated college and now she works full time as a Director of Human Resources where some days are in the office, but most she’s able to work from home.  She has a big big heart for her community, too.

I am passionate about spreading awareness and advocating for those navigating chronic illnesses. I am also passionate about helping others. 

That passion can be seen in her actions.

I am a Business Advisor and Board Member for the 501(c)(3) non-profit organization Awareness for POTSies (A4P). A4P’s goal is to provide the POTS and chronic illness community with support, empowerment and compassion, while pouring as much love into this community as possible.

Remember when we mentioned Angela’s Instagram page?

I didn’t know I had it in me to be creative until I started advocating on my page. I am so grateful for the chronic illness community. It’s an amazing group of people who are constantly lifting each other up and being there for each other. 

Angela’s page is @PositivityPOTSEDSMCAS.  She also mentions people she follows herself.

Keeya at Hells Bells and Mast Cells. I started to follow her early on when I was trying to figure out my diagnosis. Her journey was so inspiring and as she was heading into mast cell remission her posts gave me hope. She also taught me so much about MCAS and how to go about researching and finding the right providers. It also inspired me to start talking about my journey on my social media platforms in hopes I could help someone like she helped me.