Of course, dealing with neurological and gastrointestinal pain is hard, plus the myriad of other bizarre and unpleasant symptoms. What I think makes it even tougher is that you are so isolated. There are no support groups; but it's beyond that. Because there's no definitive test, there is no proof you have it, so people might not even believe you, including doctors. They might think it's caused by psychiatric reasons- when in fact ciguatera can cause that as well. Also, there is so little research on it or information that it's hard to feel any sense of control about what your prognosis may be. Or how it interacts with activities and substances out there. For example- can it exacerbate pain during dental work? What are the chances it could ruin a pregnancy? Are there any medicines you shouldn't take? (eg I took Immodium, which probably caused it to absorb more fully- big mistake). Is it worse under certain conditions? (eg I had a terrible reaction at altitude).
Treatment is another frustrating aspect of ciguatera. Thankfully, there are no invasive or toxic treatments. But being able to do NOTHING for the most part is hard; other than painkillers and adhering to the special diet, there is little you can do to help yourself heal. And little help yourself feel a sense of control over the situation. I read that Vitamin B12 active form may help regrow nerve cells faster, so I've been trying that but it certainly hasn't cured me yet.
And because there is no way to know for sure that's what you have, it's scary. It is always possible that you have some awful underlying condition instead, like MS or cancer. Or that it can develop into long-term disability referenced vaguely in some journal articles. The international community isn't concerned about it whatsoever compared to some diseases that get mentioned in travel clinics and guides. There is a small community of experts, but very little in the way of action. Researchers in North Carolina and Australia are working on a possible antidote, but it is many years away from human-ready.
Slowing down is another challenge. I just can't do as much as I used to, and if I commit to some activity I might not be able to come through on it. Traveling is hard, because of the diet. Leaving the country is not possible, as I need to be able to trust and read food labels.
What are your frustrations in dealing with ciguatera? Comments welcome.
Thursday, August 27, 2009
My (ongoing) journey with ciguatera.
I am sharing my story in hopes of connecting with others to learn from each other. Surely each case is unique but there may be patterns we can detect to aid our recoveries.
I spent 6 weeks in southeast Asia last winter (mainly Thailand, also Singapore and Cambodia). I felt ill there much of the time with what may have been typical heat exhaustion/ travelers' stomach type maladies. Upon returning home, I felt quite sick, as if something very poison was attacking all of my systems. I had major gastrointestinal discomfort and pain (and still do) ranging from constipation to diarrhea, plus pains from the top of my chest to the bottom of my torso. I had cardio symptoms including rapid heart beat. I felt panicked frequently and still feel quite scared about my health. I began to have neurological pain- tingling in my limbs especially hands, then developing into sharp parasthesia pains, which can feel like you are being bitten by bugs, poked with needles or knives, or just itchy. I still have this daily and it is everywhere.
Strange symptoms include wrinkled fingertips (raisin-looking) any time I'm near cold air or apply any pressure to them. For months I had a feeling of pressure in my head, constantly popping ears, and swollen veins on my forehead. Now I have intense fatigue at times. My eyesight gets screwy during flareups- a bit blurry with floaters, once I even saw flashes. It's been hard to keep weight on and I am prone to dehydration- I do not react well at altitude as it triggers tachycardia (it never did before). I get mild headaches quite often, and have had odd moods- which of course could be related to dealing with having a neurotoxin.
Medically, the doctors first thought I was fine and just anxious. Initial tests all came back normal except for low potassium which was easily corrected. After I was still feeling badly and had many tests to rule out other causes, my general practitioner and neurologist made a probable diagnosis of ciguatera. I had too many tests to list, but they include imaging of brain, chest, and abdomen; tons of blood, urine and stool analysis; cardio workup; and EMG/nerve conduction. At one point I had high protein in the blood but that corrected. I have also showed trace blood and bacteria in the urine, cause unknown.
Once I got the diagnosis in April, I began research and an action plan. I found everything I could about ciguatera and emailed world experts- one of whom sent me the most up to date info available. I followed the recommended diet of no alcohol, caffeine, nuts and seeds- though seeds and some nut oils are too difficult to avoid altogether. My neurological symptoms did decrease on the diet, though gastro problems have been worse off and on. Oh, how I miss coffee and chocolate, wine and peanut butter!
In August, I decided to try phasing back in the foods one at a time, keeping my diet otherwise controlled. The results were not good; I experienced bad flareups with cashews, wine, beer, and even a tiny piece of chocolate. The flareups seem to last a few days. So I'm back to the restrictive diet.
Overall I am doing my best to keep a hopeful outlook but this is pretty frustrating- the not knowing if and when it may get better. What has it been like for others? How long til you felt better?
I spent 6 weeks in southeast Asia last winter (mainly Thailand, also Singapore and Cambodia). I felt ill there much of the time with what may have been typical heat exhaustion/ travelers' stomach type maladies. Upon returning home, I felt quite sick, as if something very poison was attacking all of my systems. I had major gastrointestinal discomfort and pain (and still do) ranging from constipation to diarrhea, plus pains from the top of my chest to the bottom of my torso. I had cardio symptoms including rapid heart beat. I felt panicked frequently and still feel quite scared about my health. I began to have neurological pain- tingling in my limbs especially hands, then developing into sharp parasthesia pains, which can feel like you are being bitten by bugs, poked with needles or knives, or just itchy. I still have this daily and it is everywhere.
Strange symptoms include wrinkled fingertips (raisin-looking) any time I'm near cold air or apply any pressure to them. For months I had a feeling of pressure in my head, constantly popping ears, and swollen veins on my forehead. Now I have intense fatigue at times. My eyesight gets screwy during flareups- a bit blurry with floaters, once I even saw flashes. It's been hard to keep weight on and I am prone to dehydration- I do not react well at altitude as it triggers tachycardia (it never did before). I get mild headaches quite often, and have had odd moods- which of course could be related to dealing with having a neurotoxin.
Medically, the doctors first thought I was fine and just anxious. Initial tests all came back normal except for low potassium which was easily corrected. After I was still feeling badly and had many tests to rule out other causes, my general practitioner and neurologist made a probable diagnosis of ciguatera. I had too many tests to list, but they include imaging of brain, chest, and abdomen; tons of blood, urine and stool analysis; cardio workup; and EMG/nerve conduction. At one point I had high protein in the blood but that corrected. I have also showed trace blood and bacteria in the urine, cause unknown.
Once I got the diagnosis in April, I began research and an action plan. I found everything I could about ciguatera and emailed world experts- one of whom sent me the most up to date info available. I followed the recommended diet of no alcohol, caffeine, nuts and seeds- though seeds and some nut oils are too difficult to avoid altogether. My neurological symptoms did decrease on the diet, though gastro problems have been worse off and on. Oh, how I miss coffee and chocolate, wine and peanut butter!
In August, I decided to try phasing back in the foods one at a time, keeping my diet otherwise controlled. The results were not good; I experienced bad flareups with cashews, wine, beer, and even a tiny piece of chocolate. The flareups seem to last a few days. So I'm back to the restrictive diet.
Overall I am doing my best to keep a hopeful outlook but this is pretty frustrating- the not knowing if and when it may get better. What has it been like for others? How long til you felt better?
Ciguatera: do you have it too, or know someone who does?
I have ciguatera and am starting this blog in hopes of connecting with others that have it. I'd like to exchange stories about our experiences in hopes of figuring out better ways of dealing with the symptoms, and to share what I've learned. I'll be posting about my experiences going forward. If you'd like to post, send me comments and I'll post them on the blog. Ultimately, if we can develop some data even if anecdotal, my hope is to foster more research about ciguatera to help those of us suffering from this little-known but awful toxin. Of course feel free to be anonymous as this is online.
Subscribe to:
Posts (Atom)