Story about Ciguatera .

Ciguatera, Cardiac Symptoms- Undiagnosed for a Year

Aug 18, 2017

By: kp


My story is a long 12 month journey that began in January 2016 and possibly before.

In 1/2016 I ate Wahoo at a friend's house in Encinitas CA. The fish was from Baja, and was frozen in Mexico when it was caught. We ate it just a couple of months after it was caught. I became sick with GI symptoms about 6 hours after dinner. I also had overwhelming pain and exhaustion while I had nausea and vomiting. I was treated at Scripps Hospital that next morning for general food bourne illness. 

Within 3 days the nausea passed. Then I began to have symptoms that were unexaplainable.

I had episodes of Tachycardia (racing heart) and dizziness, shaking, and nausea. I was transported by ambulance to the ER multiple times. I also had burning feet, burning vulva, and odd sensations in my hands. i felt a debiitating depression that I had never experienced before. 

As time went on, I had more difficulty digesting food. Then each time I would get bloated I would get Tachycardia (140-150 beats per minute) coupled with terrible nausea, dizziness, and violent shaking. I used a beta-blocker, Nadolol (as needed) to control the heart rate, taken as an emergency medicine. This drug also stopped the shaking and made the nausea subside. 

I had also lost my ability to exercise. Walking, just a few yards, caused my heart to race and caused me to be extremely exhausted. Some mornings I would crawl to the bathroom fighting the symptoms.

Raising my voice caused my symptoms to flare. If I spoke loudly I would get violently dizzy and sometimes experience lightheadedness and a high heart rate. 

Months went by and my condition worsened. I was having attacks every day that left me debilitated. I was loosing weight rapidly. I could eat only a few simple foods. The ultimate irony in my story is that the only protein I seemed to be able to digest was fish. I was eating fish almost daily. 

I was evaluated by many different types of physicians and speciality clinics. No one knew what was happening. I was treated in the ER 8 times in 12 months. 

At many points I thought I was dying. Between cardiac symptoms, lack of energy, and weight loss I became a ghost of myself. 

Over these months my memory was failing, I could not finish my sentences. It was very hard to work. I had no energy.

I could not drive. I felt like my eyes could not properly adjust to speed. My hands and face were periodically numb and or tingly. 

In the 11th month I was treated in the ER for an episode of extreme dizziness and shaking all over. The doctor diagnosed Nystagmus, a condition of the eyes not tracking properly. He said I needed to see an ENT (Ear Nose Throat specialist) and a Neurologist.

I saw both within the next 2 weeks. The ENT had no idea what was wrong. The Neurologist said my autonomic nervous system and peripheral nervous system was malfunctioning. He said a toxin or a virus was likely responible. A month later he suggested I rule out Ciguatera.

That day I began the Ciguatera elimination diet. That was almost 1 year to the day that I ate the fish. My world changed in just a few days. I've been gradually getting better since.

I still have episodes of tacyhcardia, sometimes they are more mild. I still take the beta-blocker as needed. I wear it around my neck in a waterproof necklace.

I now exercise some. I drive short distances now thankfully. I am completing mental work now as I could before. My memory is coming along. The numbness and tingling is almost gone. My digestion is improving gradually. 

The diet is quite challenging at times. I may never eat seafood, nuts, seeds, or alcohol again. For me, the cardiac risks are not worth taking a chance. 

My protein sources that are well tolerated are lamb and bison. I have found that beef, pork, and poultry are triggers. I also find that fructose is a trigger for my tachycardia the day after I eat it so I generally do not eat fruit except lemon, lime, and avocado. 

Backstory- I have lived and traveled extensively in the Caribbean and Costa Rica. I've eaten many reef fish of all sizes over the last 20 years. Researchers now speculate there may be a "straw that breaks the camel's back" scenario with some ciguatera sufferers. It is possible I had prior exposures but did not know. I will never know. I only know that the meal I ate in January 2016 was nearly my demise. 

Thanks to Dr. Clemence Gatti and her team in French Polynesia for helping me understand Ciguatera. Thanks to Dr. Richard Hawley, Neurologist in Radford, Virginia for making the suggestion that Ciguatera could be a cause. Thanks to Dr. Paolo Cataldi Gastroenterologist who helped me create a survival plan that reduced the GI symptoms and thus reduced the tachycardia during months 4-12. 

If you want to connect we have a Facebook group called Ciguatera Information and Support. 

 

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