My story is a bit complicated, as are all of our lives are.
I grew up in a close, fun loving, hard working family in Virginia. In my first days of college I took an Anatomy course, and was hooked. From there I began the path that lead me into healthcare, and high pressure careers.
As I reached my mid thirties my path diverged from what many others would have done with my education. During that time I was moving toward holistic health and healing through food, activity, and lifestyle choices.
All during my life I’ve had bumps and odd occurrences with my health, most of which would pass after a scare, or would fade into the background over time. Then around 2010, I began to have bouts of problems with food. I developed a handful of new food allergies. What had once been obscure allergies like mushrooms and pineapple now included reactions and positive allergy tests to bananas, wheat, eggs, peanuts, and chicken.
Off and on I dealt with a painful belly and sleeplessness due to digestive woes. Mostly I considered this an annoyance.
I had a scare with a swollen lymph node in my neck and a bout of Allopecia (hair loss).
Then came the pivotal moments that I began to have Tachycardia ( a racing heart) that came with dizziness, intense shaking, nausea, uncontrollable fear. In 2013 at age 42 I was carted off the beach by a 4-wheel drive ambulance, because of an intensely scary episode while kiteboarding. I felt like I was dying from something… a heart attack, low blood-pressure, something awful.I managed to get to shore and call 911 while people stood by watching me laying gray and near lifeless on the beach. A friend later said, “I thought you were checking out.”
The EKG on the beach indicated I had Bigeminy when standing, but normal when I was laying (Bigeminy meaning every other beat was irregular). I spent an evening in the hospital, received 3 bags of fluids and went home. Honestly I was terrified to leave the hospital. We live on a small island, an hour+ from the hospital.
Little did I know, that day marked the beginning of a very serious, and extremely frustrating experience.
Between 2013 and late 2015 I had several attacks of tachycardia, shortness of breath, dizziness, nausea, all of them completely out of the blue. I began to regularly have palpitations (PVCs).
The tachycardia when it came stopped me in my tracks.
One night I had just finished dinner. Once, I had just taken a hot shower. Once I was at a Thrift shop. Once in the grocery store. Every time I’d call my savior, my husband who’d rush to my side, and ride in the Ambulance holding my hand as my heart raced to 140 beats per minute for no reason at all.
My cardiologist ran a gamut of tests, Echocardiogram, EKGs, trans-vaginal ultrasound, extensive blood work. Nothing showed up. I was given an emergency medication to carry with me, a Beta Blocker called Nadalol (Coregard).
Between 2013 and 2015 problems continued.
There were unexplained episodes of reprieve. We spent 3 months in Costa Rica in early 2015, and not a single episode of tachycardia, but had a long run one gastro intestinal symptoms. ( I suspect this was my initial exposure to Ciguatera toxin).
As 2015 progressed, after my return to the United States, I gradually began to lose my ability to exercise. I felt winded, and tired. My heart rate would be higher than I expected it to be, just walking the dog outside for a few moments.
I had a very difficult time adjusting, I’d been so incredibly active all my life; mountain biking, surfing, kiteboarding at will. I never had to rely on anyone, I was always doing, and going, and extremely happy doing so. Now, to not even feel like strolling outside with my dog, not even coming close to feeling like surfing, I was devastated.
Our lives led us to Southern California for a 5 month stay for my husband’s consulting work in late 2015 and early 2016.
In January 16, 2016 I had a food-bourns illness caused by fish. I was treated in the ER with IV fluids for nausea, pain, and severe fatigue.
Then I began to have increasing problems. My body seemed to go haywire.
More episodes of tachycardia, shaking, nausea, dizziness, and extreme fatigue. I took 2 ambulance rides in 1 month. I racked up medical bill after medical bill.
This led me to Scripps Institute where I saw a new cardiologist. He was so compassionate. I was a mess. I remember sitting in his office crying by myself as I waiting on my first meeting with him.
He said, “I think I know what’s going on,” and tears poured from my eyes. Thank God, I thought. Someone who can help me.
After a whole series of new tests; tilt table, 24 hour urine twice, and blood work upon blood work, nothing became apparent. I passed the test he suspected would show I had POTS, or Postural Orthostatic Tachycardia Syndrome, a disorder that leads to a racing heart upon standing. That’s what he was sure I had. The one thing that was slightly off was my histamine levels… this could be a clue, both he and I thought.
I saw an Alergist and became a patient at the Scripps Institute for Integrative Health.
Histamine intolerance made sense on several levels and it also tied in with my past issues of food allergies.
I started down the road to a new plan, Low Histamine Diet. With the help of 2 nutritionists I had a meager menu of about 10 foods. Mostly vegetables.
My favorites and standby foods all got nixed (my husband and I ate a Paleo Diet and many of the foods were not Histamine Friendly). It was a very, very difficult plan, but I held out for hope that it would help.
Before long my condition began to worsen instead of improve.
The attacks went from every few months to monthly, to weekly, and finally daily. My histamine levels were low on the blood work now so the Histamine Intolerance diagnosis did not add up.
When I would take the emergency beta-blocker it would lay me flat. I was exhausted, foggy, and rattled for 2 days after.
I began to have problems sleeping. Every time I rolled onto my left side I would jolt awake with nausea and an elevated heart rate.
My brain had become so foggy, I could not hardly work. I didn’t want to drive. There was no way I could exercise. I could barely stroll with my husband and dog without my heart racing and weakness. My life was a total mess. I now wondered if I would be able to continue my job directing a non-profit.
Then it was time to head back east to North Carolina in April 2016 and I had to drive one of our cars.
We would drive a little, and pull over.
It was 6 day long nightmare. I had a full blown attack in Memphis at a KOA campground where were staying in our camper van.
I tried to manage it on my own, but for 40 minutes my heart raced, my body shook, and the nausea was so intense I thought I would pass out.
The emergency medication seemed too slow, it was a terrible situation.We called 911.
The ambulance arrived in pouring rain, and I sat inside hooked to the EKG. After about 10 minutes my heart rate began to subside. After a lot of discussion we decided that I would opt out of going to the hospital. I climbed out of the ambulance and back into our van. I cried out of fear and exhaustion and uncertainty.
Somehow I managed to notice something new that day in Memphis, I was very bloated. As the attack went on, my lower left abdomen had become very distended.
Was Bloating the Cause of My Tachycardia?
The next time an episode hit I discovered I was bloated again. And again. Wait? Had this been happening all along? I wasn’t sure, but it seemed to be a hallmark of these terrible attacks.
I spent days and days researching my symptoms, because at this point everyone, Allergist, 2 cardiologists, Integrative Medicine specialist, Chiropractor, Acupuncturist, primary care, and multiple ER doctors had not a clue what was happening.
That’s when I discovered Roehmheld Syndrome on Wikipedia. Thank you, thank you, thank you Wikipedia. The clues that led me there was trouble lying on left side and bloating.
I was certain. This was it.
Roemheld Syndrome is a series of symptoms that occur when the Vagus Nerve is compressed by the digestive system (often from gas or bloating). The Vagus Nerve sends signals to the brain which signals systems, and things go haywire.
I was definitely noticing that if my colon bloated the attack would come on as the gas reached my left diaphragm.
Now, where to get help? That proved very challenging. My cardiologist in North Carolina didn’t believe me. He said “get over your self pity, take the medication, and move on.”
I was crushed. How could someone say this to a sick person?
Very few people in the medical world in the United States were talking about Roemheld Syndrome (Gastric-Cardia), even though the diagnosis has been around for 5 decades.
Finally one night I found a website of a Gastroenterologist in Italy. He had an extensive page about Roemheld Syndrome and was experienced treating the condition.
I wrote him and begged for help. I would fly to Italy if I had to scrape every penny up and sell all my possessions.
The next day I received a very kind note from the doctor. Dr. Paolo Cataldi agreed to talk with me to help me understand what was happening.
So I began.
I was so sick, I could barely be alone for the day, I was terrified and weak and felt very alone.
My faith in American medicine had been rocked to the core. I never realized how alone someone could feel in a place where you are surrounded by so much healthcare.
Within 2 weeks of starting to follow the food guidelines suggested by Dr. Cataldi I felt better.
Within 2 months I felt strong. As of October 2016, I am over 100 days without an episode of tachycardia.
I began to surf again. I began to take walks, I kiteboarded. I drove 7 hours by myself. It was amazing. I felt clear and focused. It was remarkable.
Only slight bouts of dizziness remain and I’m learning new techniques now to calm my Vagus Nerve more.
What I considered “harmless bloating” was not at all harmless.
I still face challenges of dealing with what is likely a genetically very sensitive digestive system, I am learning to read what my digestive system wants and doesn’t want. A big part of what Doctor Cataldi has taught me is to listen very carefully to clues from my body.
Being a health educator I was compelled to understand what was happening, why I was sick, why I was feeling better. Dr. Cataldi helped me learn about fermentation and stagnation in the digestive system which leads to toxicity and ultimately a long series of health problems.
That is the story that has brought me here today, to work alongside Doctor Cataldi to bring a traditional European food-based healing approach to Americans who are fighting to gain better health.
It’s truly shocking to see what bloating and abdominal distention can really mean, what bad digestion can ultimately do. It’s insidious and so prevalent in our society. When I look around at abdomens of people all around me I see that so many of us are on the road to destruction and disaster. My hopes are that we can help, that we can give people just like you and me a way to feel better.