A Personal Peek into My Life:
Living with Ciguatera

Suzie Cooney photo by Erik Aeder

photo by Erik Aeder

Aloha friends. Before the holidays really begin I wanted to send this to you; my supporters, clients, sponsors, friends, my Ohana in sincere gratitude for giving me the drive and strength to forge ahead.

I am so very thankful that I’ve lived on the beautiful island of Maui for almost 14 years. Living the island lifestyle and having the most amazing circle of friends is a real blessing.  As a personal trainer, water sports enthusiast and SUP athlete and one whose passion is being on the water helping and coaching others; this is literally my way of life.

But what if you discovered that you had a health condition where it was contraindicated and/or suggested not to exercise too hard or possibly the notion of being in the sun, or ever eating fish again may not be the best thing to do and trigger your nervous system to release a toxin, so painful and disabling with no way to escape?

What if you were in a career that required you to do all the above and it was your life-long dream and passion? And what if you were paddling on a downwinder and your skin, your eyes, your mouth, your feet, felt afire like a vat of acid being poured on your body the entire way because your nerves have reversed your normal sensation of temperature?  How would you navigate?

I feel compelled to share this with all of you, although I felt for some time it may be career suicide. As I pondered now for two years, I decided that maybe I could help others by informing them to take note of a condition that is becoming more recognized and common throughout the world.  This is especially true for those of us living in Hawaii and other subtropical areas.

Before I go on, I don’t want to alarm you, have you feel sorry for me or treat me any differently if you see me next to you at the next downwind race or out catching waves. I am training, I am paddling and I am on this planet to help others in many ways through the water sports I enjoy. So chalk this one up to one more way I want to help you become more aware or maybe help someone you know who may be or have had experienced similar symptoms.

You may be surprised to learn that this is how I’ve had to roll and cope since June of 2011 to be exact. This condition is often misdiagnosed as multiple sclerosis and is one that I will have for the rest of my life. It is called ciguatera. (ci·gua·te·ra) Pronunciationsee-gwuh-ter-uh  ( Reference links at end of article )

Some of the facts: As referenced by the The National Center for Biotechnology, they identify it as: “Ciguatera Fish Poisoning (CFP) is the most frequently reported seafood-toxin illness in the world, and it causes substantial physical and functional impact. It produces a myriad of gastrointestinal, neurologic and/or cardiovascular symptoms which last days to weeks, or even months.

They also state: Ciguatera fish poisoning (CFP) is a foodborne illness affecting humans worldwide. Humans acquire this illness by eating reef fish containing the naturally occurring toxins, ciguatoxins. Multiple ciguatoxins have been identified, but in this paper ciguatoxins will be referred to collectively as “CTX.” CTX is derived from benthic dinoflagellates of the genus Gambierdiscus, growing predominantly in association with macroalgae in coral reefs in tropical and subtropical climates. The toxin is transferred through the food web as the algae is consumed by herbivorous fish, which are consumed by carnivorous fish, which are in turn consumed by humans.”  ( more references below )

WebMd: “Ciguatera poisoning is most common in Florida and Hawaii. Red snapper, barracuda, parrotfish, jacks, and grouper are most commonly contaminated, but over 400 normally safe fish species may contain the poison. There are no good “rules of thumb” for detecting tainted fish. They look, taste, and smell normal. Testing for ciguatera is available in some areas.”

New York Times, January 2013:  “Fish Toxin Cited as Cause of Poisonings in ’10 and ’11    …” He was one of 28 New Yorkers to fall ill from ciguatera between August 2010 and July 2011 — more cases than had been reported in the entire preceding decade in the city..”  ( see more of this article below )

The symptoms are vast but the most notable are the ones I have like the constant burning (dysaesthesia), with varying intensities that migrates all throughout my body with no warning.  Sometimes I will itch incessantly around my nose, face and arms, but the most unusual one for sure is the feeling or sensation like my teeth are falling out. This is a noted symptom with severe cases. Don’t worry, I still have my own teeth but I’ll tell you it is not fun.

Currently there is still no 100% test or markers on a blood test that will confirm ciguatera. Collaborative efforts of rewinding the two years back of my record keeping, training journals and daily pain level journal; we concluded, I probably contracted the toxin while visiting my mother in the Bay Area in June of 2011 and eating fish the night before I returned to Maui.

How the first episode was revealed was upon my return to Maui that next day, June 11, 2011.  I decided to paddle 10 miles the next day from Maliko to the harbor, along with my good friends Bill and Simone.  I came into the harbor feeling like I was on fire!

At that time it was just on my left arm and then my lips swelled up so strangely I made jokes that I finally had lips like Angolina Jolie.  I headed to Kaiser immediately, where unfortunately my amazing and supportive internist Rick Sands, MD was out and I was put through a round of tests for allergies.  The usual Benadryl tabs routine, etc.

When I was able to see Rick about 2 weeks later he was very concerned and perplexed. We tested for everything and I mean everything. There was also some concern that some of the symptoms I was experiencing was similar to that of as I mentioned early, multiple sclerosis.

This was very upsetting but I knew Rick was looking out for me as he always does, so we ordered a brain scan.  From that time until I had to wait for the results, my life flashed before my eyes in many different scenarios and I started thinking about what my life we be like with that disease. What in the world would or could I do for a living?  It was a very tough time. But luckily the scan was clear for that.

A month had gone by and it was July 2011 and the Naish SUP race was soon approaching.  I did my best to paddle and train through the burn. I was determined and so baffled how I could burn all the time like this? It was in my mouth, behind my eyes, my upper back, thighs at times, under my feet and always my left arm. Some days I would actually turn red as the toxin would move through my body.

People would say to me, “Suzie you look so tan.” Well I was red-brown. I didn’t have the heart to say anything. I felt I had to keep it to myself in order to keep my own mental strength and block the pain and not appear weak to my clients.

It was very difficult as I was still trying so many different medications attempting to alleviate the pain of this unknown condition. At this point all one could do was treat the symptoms.  Trying to maintain my livelihood, paddling and training and seeking different ways to cope to live my new “normal” life was very difficult.

Living with ciguatera is pure hell. I have to say this condition and being in this physical state was way worse than when I broke my legs and lived in a wheelchair for three months in 2009, or had serious back injuries from years past. At least I knew bodily injuries eventually would heal.

The day of the race was here July 24, 2011, and honestly I wanted to crawl under a rock and have it be over from the time I arrived to Maliko Gulch.  But I was so excited and all my friends were stoked and I was insistent to do it still not knowing what was going on, but I just couldn’t give up.

Suzie Cooney The gun went off and by the time I rounded out of Maliko with the pack and started approaching Hookipa, I thought I would die.  The medication was drying me out and I felt dehydrated already after ten minutes into the 10 mile race. The burn was so bad and the wind was so light, I just put my head down and whispered to myself. “IMUA Suzie, just go as best you can. Just go.”

I was thinking if I fell off maybe I could cool down but then I’d lose time and I didn’t fall the whole race. I could barely think of how hard that harbor would soon be. I also had a vision a jet ski coming around to pick me up so I could just disappear into thin air and no one would know.

On a lighter note, the funny thing I recall is that I caught this one glide and saw Rick Sands, my amazing doc of all people in front of me. I really really wanted to pass him. My laser focus was on him.  I yelled to him,  “I’m coming down the line and I’m not stopping!” He yelled and laughed back and said, “Come on Suzie I can take it.”

And sure enough I rammed into the side of him and deflected off his right rail.  We got a good laugh and he took it and still beat me! We had battled for at least a few miles. I gave it my best and placed a respectable 6th in my division considering I was toast ten minutes into the race.

As a tribute to my athletic pride I must note that, that it was only two months prior I felt so strong that in May of 2011, I placed 1st in the Olukai Ho’olaule’a (divisional) and that’s how fast my body’s strength and nervous system got tapped out.  It just plain sucked.

A few days after the race, the burn intensified, migrated everywhere and turned my skin very red so badly that I had to go to the emergency room.  I was desperate, angry and frustrated that this was happening.

When I met this ER doc, I thought he was blowing smoke up my rash guard and he called it right on that day; the possibility of ciguatera poisoning. I blew it off not being able to recall that I had had shrimp while visiting my Mom in the Bay Area the night before I returned.

I was sent home with much of nothing, but more meds for pain and a suggestion to rest and use cold compresses, which I couldn’t tell if it was cold because everything felt hot. Forget taking a cool shower because I couldn’t feel the water. The nerve pain or normal sensations was in reverse.

For some time I was trying every drug that was supposed to help nerve pain and it was awful. The side effects alone kept me contemplating whether or not I could tolerate them. I didn’t know what was worse, the medication or living with the burn?  Dr. Sands was so patient and so supportive for so many months and offered anything to help.

I am very conservative by nature and I tried everything form hypnotherapy to acupuncture, homeopathic alternatives, meditation and once in a while a stiff drink. Sometimes if I sat in my truck with the AC on full blast, that would offer some relief but the sensation of cold, almost felt hot but I would tell myself it has to help somehow.

I would train my clients on and off the water in blinding pain but I could not afford to stop working, nor did I feel I wanted to, as I would simply go crazy if I had to focus just on the pain.

Once in awhile Rick and I would toy with the idea of ciguatera but I was the one that continued to shrug it off.

I would continue to paddle, train and just try and live with this “thing” that took over my body like an unwelcomed alien.  Many days were unexplainable and so disabling and I was often quite depressed. Sometimes I would just go to bed crying and began to lose hope.

I started going deeper and deeper researching on the web and looking over my training schedules from the past and how I’d recover and how my burn was after those downwind races now in year 2012.  The same pattern repeated.

It was noted in some white papers (research papers that actually has some factual weight); that this poison can be aggravated by intense bouts of exercise and cellular  depletion. I thought, great, just what I needed to hear. There goes my career.

As for being in the sun, well, I try to get on the surf before intense sun or go later in the day.  I also wear my ultra protective paddle top with sun protection of SPF 50 made by Bluesmiths to possibly help as now my skin is ultra sensitive.

Another trigger of the poison is eating fish. Some medical journals and scientific papers all come to the same conclusion that by ingesting fish of any kind may trigger the toxin to be released. Drinking alcohol, eating nuts, eggs, and chicken are unconfirmed notions that may aggravate the toxin and lead to episodes. Terrific!

Additionally it’s mentioned that most recurrences of the toxin get worse not easier as this was not what I wanted to know and I found and still find this is true. It is also noted that one will have this in their system forever but those that change their lifestyle may have relief. It’s not known.

There is research and those seeking a path through the body to help the toxin to exit, but nothing concrete just yet. Maybe one day.  Hell, I’d walk on glass if I knew it would help.

I continued to train others and myself and usually after a race or an “event” where I’ve REALLY pushed myself, it would take me a month for the burn to be somewhat manageable. I also recall that after I ate sushi or any kind of fish, whamo, it would return.  But still I wasn’t buying it or maybe it was denial.

Suzie Cooney Maui Paddle Board Championships 2013

photo by 808photo.me  2013 Maui Paddleboard Championships

Each recovery period after each and every downwind race got worse and worse. This July I was training to do the Molokai to Oahu race this year and for other reasons it didn’t work out. On that very day, one week after a local race here; I had THE worst episode of the ciguatera and thought there is NO way I would have been able to complete that race. I was not in good shape and was scheduled to catch a plane to Utah that night which I did.

Now I had a pattern to study and finally I had something to grasp, measure and monitor.  Having this kind of data and record from my training journals and pain journals was well worth the effort.

In the past Dr. Sands had suggested I try a heavier duty medication such as Lyrica, which is commonly prescribed for nerve pain. But it always scared me because of the really crazy side effects and the fact it was so expensive.

Just recently however as of October this year, I gave in to desperation and so now I am able manage a tiny dose and we’ll see.  Additionally the more I researched about how others were getting relief, I thought I’d try a Vitamin B12 shot which was only recent.  I am actually holding the line fairly well and have five days of freedom!  I’ve only had a few in two years that have been burn free.

It is hard to determine what is working but I honestly feel a positive approach is best; although I will be completely honest, that part has not been easy mentally. I am used to coaching and mentoring others to hold their head up but boy oh boy it’s been challenge I will admit.

I know I am winning and fighting as I simply must. Everyday as I move forward with strength, a strong spirit and courage. These words are also reflective of the Hawaiian word that has the same meaning, and that word is IMUA.

For years the word IMUA resonates deep within my being and has been my personal mantra for every challenge I face. I tell my clients and dear friends to think of this word and say it aloud or to themselves when they are faced with the ultimate obstacles. Thank you Tom and Pam Wright.

Thank you sincerely for taking the time to learn and allowing me to share my story. You see, by reading this you are helping me cope.  Writing is a form of therapy for me and really helps.

Suzie Cooney

photo by Bluesmiths: Berhuot Visuals

As I type and I close my final thoughts, I have a mild to medium sensation of burning on the left side of my face, under my feet and my left arm is red.  But it’s okay I will always conquer and be inspired with people like you in my life.

Sometimes I guess it’s okay to admit to one’s weaknesses for as I write I feel stronger. Is this career suicide writing this story?  No, I think I’m allowing myself to be human.

As I always say, “your health is your wealth” so paddle, windsurf and surf your heart out.

See you on the water!

Aloha,

Suzie Cooney

A warm mahalo goes out to my dear friend and physician of 13 years, Rick Sands, MD. If there were an award in the country that would go out to the greatest doctor and dear friend, it would go to him. If you know Rick, I’m sure you’d agree.

Thank you to my dear, close friends and clients for your love and support and holding me up when I needed an extra lift.

Also a mahalo to my sponsors/supporters: Naish, Bluesmiths, RAWElements, True Collection, OluKai, Kaenon and Indo Board Balance Trainers; for always being in my corner and believing in me.

Finally, a big hug to my loving boyfriend Tommy who puts up with me and helps me through it all.

 

References and helpful links:

The National Center for Biotechnology:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2579736/

 

Learn more about dysesthesia:

http://en.wikipedia.org/wiki/Dysesthesia

 

New  York Times Article on Ciguatera Fish Poisoning Jan 2013

http://www.nytimes.com/2013/02/01/nyregion/toxic-fish-caused-food-poisoning-outbreaks-report-says.html

WebMD

http://www.webmd.com/vitamins-supplements/ingredientmono-766-ciguatera.aspx?activeIngredientId=766&activeIngredientName=ciguatera&source=1

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