As Kim has worked through he health challenges and digestive problem there has always been the lingering question, is there something behind this decline in her health? Some diagnosis that was not easily found. Was it a virus that affected her Vagus Nerve so drastically?
New information has led Kim to the likely diagnosis of Ciguatera.
Ciguatera is an illness caused by a neurotoxin found in seafood. In January 2016, Kim became ill after eating fish, Wahoo fish that was caught in Baja Mexico. She experienced vomiting, pain, severe nausea, diarrhea, and extreme fatigue.
Her digestive system seemed not to recover, and soon neurological symptoms became obvious.
Her autonomic nervous system was not regulating her heart rate normally. Each time she became bloated, her Vagus Nerve would react inappropriately and her heart rate would jump up and down.
Her feet felt hot when they were cold. She had urinary pain. She had severe mental fog, and could not remember common things. She felt like daily tasks took too much mental or physical energy to complete. Later her hands and face felt numb. She had dizziness when surfing, driving, and walking. Dizziness when speaking. Ringing in her ears.
When the possibility of Ciguatera was raised by a neurologist in December 2016 (almost a year later) all of the things seemed to fall into place.
Read more below about Kim’s experience with Ciguatera.
Kim’s Words About Ciguatera
I am writing this because I want to share what it is like living with Ciguatera. I hope it will help others.
First let me tell you that Ciguatera has no diagnostic test. The only way to diagnose this problem is through the subjective observation of signs and symptoms. The fact that I consider Ciguatera to be what I have is based on 13 months of reading, research, testing other hypothesis, dozens and dozens of medical test.
Backstory- I have traveled widely and eaten fish in many places including areas with known ciguatoxin such as the Bahamas, Costa Rica, coastal North Carolina, and Florida Keys. I have been exposed to many kinds of fish know to carry the toxin in the past 5 years. Ciguatera can build up, and a meal that triggers symptoms in one person will not affect everyone for this reason.
Ciguatera affects everyone differently some with mild illness and others with severe illness. Deaths have even happened. It is a neurotoxin and has the ability to affect every system in our body through the nerve cells.
My case includes odd nerve sensations but also some pretty serious cardiovascular and autonomic nervous system problems. Many people with ciguatera experience neuropathy and confused neurological sensations like cold, pain, heat, and other odd things.
This has been incredibly scary from the beginning. At times my heart races, I feel so incredibly ill all of a sudden that I don’t know if I am going to die, throw up, or pass out.
My digestive system nearly came to a halt. Everything I ate sat in my stomach and creeped through my digestive system. Thankfully Paolo applied his expert guidance and helped me adapt and change my eating patterns. This was my saving grace. As I controlled the bloating the tachycardia became more manageable.
I now carry an emergency medication in a capsule on a necklace at all times. It is called a beta blocker, it keeps the adrenaline my body is releasing during an attack from making my heart rate go high. When an attack happens my heart rate jumps from 60 to 150 in a few seconds. I shake. I feel extremely sick to my stomach. Then the other neurological symptoms come into full effect, dizziness, fear, odd sensations in my body.
I knew something terrible was happening to my body as this illness took hold. Yet no matter how bad I felt, I could hardly articulate the things I was feeling. So many strange sensations are in my body and my brain.
My nervous system feels like it is about to explode or implode at any moment, as if there were hundreds of misfires happening every single moment.
I felt that there was electricity stored there that was waiting to discharge… in the wrong direction. It is a lot like wearing clothing that doesn’t quite fit right. You might not know exactly what measurements are off, but it is just not right and is uncomfortable as hell.
My doctors were puzzled to say the least. Many were apathetic… “yeah, yeah you have something wrong, isn’t that little pill fixing it?”
No. It is not fixing it. Sure it helps lower my heart rate, but so much more is wrong.
I felt desperate to find the cause because then it might allow me to “fix” the problem. THIS IS NOT MY NORMAL.
I want my life back. I want to trust my body to do simple things like go swimming or surfing. I wanted to drive and go to the grocery store without fear of an attack. I want to have the energy to talk with friends, or walk my dog, or cook a meal.
As you may know from other posts many of my symptoms are related to my heart rate and vagus nerve, the nerve that controls heart rate and blood pressure. My autonomic nervous system has been malfunctioning, my heart rate and blood pressure shooting up and down. My digestive system seemed to be tied in or possibly be the key. Every time I got bloated I would have an attack of uncontrollable heart rate. However now I know that if it is Ciguatera, my digestive problems are just part of the picture.
I have had all kinds of subtle neurological symptoms. At first I blamed them on reactions to medications or something I ate. I remember that my feet felt hot when I was cold. If I took walk on a 40 degree day my feet felt hot and irritated. It wasn’t like my feet were hot and I wanted to take my shoes off, it was like having pepper inside my veins. This has come and gone over the last 13 months.
The backs of my hands feel numb at times and so do my cheeks. It’s like I have rubbed on lidocaine.
I had pain early on, especially related to my urinary system. Thankfully this is mostly resolved.
I am often exhausted. I just do not feel peppy or as vigorous as I did only 13 months ago. In the beginning my exhaustion was constant, I wondered how I could even walk the dog around the block. I found myself sitting down all the time when before I never did that. Now it comes and goes.
My brain feels like it is firing on half of its cylinders. I know there is more intelect in there, more memory capacity, but I just can’t quite access it on some days. When I do feel my mental faculties coming back it feels like a window opening and suddenly I have the ability to quickly remember things and think of the words I want.
I have felt incredible sadness, maybe to the point of depression off an on during this whole illness. It seems to be most prevalent at the times of the attacks. I have tried to understand why this would come and go a a moment’s notice. You can easily think the depression comes with losing your abilities, but this was something “chemical” feeling to me. As if a switch was flipping and I was suddenly not happy or able to be happy.
There have been periods of incredible dizziness. My eyes didn’t seem to want to focus or track as they should. Again, something that is very hard to explain to a doctor. If I talked during an episode of dizziness it became even worse. Sometimes speaking loudly would trigger the dizziness. Sometimes the dizziness would hit out of nowhere.
Each and every one of these symptoms and signs has been investigated by a corresponding doctor or test. Multiple Emergency Departments, Internist, Allergist, Neurologist, Cardiologist, Integrative Medicine Specialist, ENTs & Opthomologist.
My symptoms would improve then crash back into my life. I had ups and downs as the Ciguatera toxin in my body fluctuated.
Treatments for Ciguatera
There are no medical treatments for my Ciguatera or the ciguatoxin in my body. It’s a waiting game. For some people the symptoms resolve in weeks, sometimes it takes months, for others it takes years. Some people experience a partial recovery then have the symptoms reappear if they eat a trigger or do a certain activity.
The only thing I can do, and anyone else can do is avoid certain foods and activities that might cause the symptoms to flare. The list below is from a variety of sources.
I am currently on as strict avoidance diet.
This is generally the list of foods that you are advised not to eat if you have Ciguatera:
- fish (fish with or without ciguatoxin)
- fish oil and fish sauce
I also understand that seaweed, carageenan, and other ocean derived foods and supplements can also cause relapse. I also look for these things in toothpaste and as additives.
My up and down relapses may very well have been tied to eating one of these foods. I am not certain.
My understanding is you should also avoid nut and seed oils in skincare products including Shea butter and oil, coconut oil, argan oil, etc… I have definitely noticed an increase in my skin numbness when exposed to shea butter and coconut oil.
Activities to be avoided with Ciguatera
Some people indicate that over-exertion and dehydration trigger flares. I have personally experienced this, I felt bad for several days after exercising in the heat.
Support Group for Ciguatera
I feel like there should be more support for people with Ciguatera. I have started a Facebook page for support and information sharing.