Amanda’s Story

“Not only did Dr. Driscoll explain in detail what was happening within my body, she also showed me proof on my scans which is exactly what I needed after the journey it took me to get there.”

 

Amanda was becoming worse over the years because of lack of answers and proper treatment. She called POTS Care when she was to the point of barely being able to get out of bed, take a shower, make a meal, drive or go to work.

“While it sounds odd, the biggest fear I had walking into POTS Care for the first time was, “What if she tells me there is really nothing wrong?” If that fear resonates with you or someone you love due to your experience with POTS so far, I strongly encourage you to visit POTS Care because for the first time in the 11 years since my symptoms began I felt seen, validated, understood, hopeful, safe, and truly taken care of. 

To back up a little bit so you will understand better: The first time I had a full-on POTS episode was when I was 19 years old and driving when very quickly I went from feeling a little off to passing out and driving my car into a ditch. The next thing I clearly remember was waking up in the emergency room with needles going into me, sticky pads being placed on my skin, machines beeping, and medical personnel talking loudly over each other. I was admitted and several days later they did a Tilt Table Test. After 11 minutes I became tachycardic, hypotensive, and lost consciousness. The cardiologist told my mother and I what I had experienced was an isolated incident of vasovagal syncope and if I began eating more salt and drinking more fluids that should fix everything…it did not. 

Over the next 10 years, my symptoms seemed to migrate to different areas of my body, each one prompting a new diagnosis being added to my infinitely thick chart. Fatigue was a constant, and good sleep became a very distant memory. While doctors were able to treat the surface issue, no one seemed to be interested in looking at what tied all of these “idiopathic diagnoses” together. During that decade, I received diagnoses including: Vasovagal Syncope, Endometriosis, Raynaud’s Phenomenon, Tachycardia, PTSD, GERD, Major Depressive Disorder, Anxiety, Intracranial Hypertension, Peroneal Nerve Palsy, Peripheral Neuropathy, Complex Regional Pain Syndrome, Scoliosis, Degenerative Disc Disease, Osteoarthritis, Anemia, and Ocular Migraines. 

As the years progressed, the more I was torn between 1) is my body dysfunctional? or 2) is this all in my head? 

On February 17, 2019, it felt like every single symptom I had over the past decade suddenly collided in one massive explosive episode. In the emergency room, that day the doctor told me what I was experiencing was just anxiety and I actually believed him, for a while since I was going through many major life changes at the time. Over the next several months however, the episodes continued happening and were increasing in frequency and duration. I saw some others who echoed the sentiment that it was anxiety. In August, I had a moment during an episode where I clearly knew, “This is not a problem with my mind, something in my body is not working right.” This prompted me to make an appointment with a cardiologist who upon hearing my symptoms and history immediately said, “You have POTS…” 

As I dug deeper into this diagnosis, I mostly felt confused from all the conflicting information to be found on the internet. I began the treatment prescribed by the cardiologist which included beta-blockers and a high-sodium diet, but these seemed to only give me very temporary relief and the episodes began getting worse. I met with some other medical professionals as I got sicker and was desperate for relief, but either they did not take me seriously or did not know how to help. The most difficult day for me was in October 2019 when a medical professional I knew and trusted refused to help me then said, “You’re a perfectly healthy young woman.” I sat in my car afterwards, crying, because if someone who knows me and cares about me refuses to help me, who will? 

I had been so discouraged by this encounter in October that when a friend sent me a link to POTS Care, I shrugged it off at first. But my symptoms had become so horrible, nearly disabling, and they were getting so frightening. At 30 years old I am fiercely independent and am proud of the life I am living, yet that life was quickly becoming extremely limited. I live alone which was becoming a concern amongst my family, friends, and doctor because there were days I could not get out of bed, take a shower, make a meal, drive, or go to work. Crushing fatigue was constant and there were times I would just lay in my bed curled up in a ball praying, because my heart was beating so quickly and erratically that I believed if I fell asleep it would give out and I would die. I decided to take one more shot at trying to get help in the hopes of preventing me from losing my independence, so I pulled up the POTS Care website and called them… 

From that first phone call I felt so hopeful. They reviewed over 10 years’ worth of my medical records and scans, ran blood work, asked me about hundreds of potential symptoms, did a physical exam, took optical photographs, did a poor mans tilt table test, and ultimately found the thread that was tying everything together. The underlying causes found in me explained every diagnoses I had received over the past decade. 

My POTS is inflammatory, which explains why the typical regimen of beta blockers and high-salt were actually making me worse! In my case, the chronic inflammation is caused by a genetic connective tissue disorder. Additionally, my intracranial hypertension which had in 2014 been diagnosed and treated with a lumbar puncture was still persisting and making everything worse. 

Not only did Dr. Driscoll explain in detail what was happening within my body, she showed me proof on my scans which is exactly what I needed after the journey it took me to get here. It was no longer enough for me to hear it, I needed to see proof that this had never been in my head. The team is amazing, and they are always available and eager to answer my questions and provide me support. 

I have now been on my personalized treatment regimen for 2 months and it has changed my life. My energy and vitality seem to be continually increasing to levels I did not know were possible. I wake up most mornings feeling refreshed and rejuvenated as my sleep patterns have drastically improved. I have taken up some new hobbies such as cooking and belly dancing which require me to be on my feet, and I do not feel like I am going to pass out! One of the largest improvements I am thrilled about is the mental clarity and sense of groundedness I feel. Not every day is easy, there are still some days when I feel my symptoms creeping up but I have been given the tools to nip them in the bud before they get too terrible…most importantly, the episodes now are easier to deal with because they no longer throw me into this mental prison of “This is never going to get better” because I know relief is coming back soon. Even my skin is clearer, my eyes are brighter, my smile is wider, and my heart is lighter because of POTS Care.