Ciguatera poisoning and autonomic nervous system dysfunction

[Schu]

I am a 46 year old female who contracted Ciguatera Caribe fish poinsoning 9 years ago while in the Caribbean. Since that time, I have been demonstrating autonomic nervous system dysfunction symptoms, mainly diaphoresis, a fast heart rate related to certain activities ( getting out of bed in the morning, using my arms to do work, etc), shortness of breath related to vasodilation of my extremities (which was diagnosed with the aid of a Swan-Ganz catheter), etc. I underwent testing in February of this year to rule out a pheochromocytoma b/c my urine catecholamines were elevated; a pheo was ruled out, but I am now hypertensive. I am treating with a neurologist who has put me on Mestinon SR 180 mg. bid- he researched the physiology of ciguatera and found that it bore some resemblance to that of mysathenia. I have also been started on Labetalol (300 mg. bid) with the hope that the alpha/ beta blockers would help control my symptoms. I feel better with the use of these two drugs, but there are still times when my heart rate will become tachycardic at 120-140 and I am so short of breath that I need to stop whatever I am doing. Do you have any other suggestions for management? The symptoms are occurring  more frequently, and I am concerned about the effects of the vasodilation, elevated catecholamines, elevated blood pressure, tachycardia, etc. not only on my cardiac status but also on my quality of life. Thank you for your help with this. I appreciate it.

[CCF-Neuro-M.D.-CS]

I have no personal experience with this condition and can not make treatment recommendations. What I can recommend is that you have an evaluation by an autonomic specialist. If you are in the area our autonomic specialists are Drs. Shields (Neurology) and Fouad (Cardiology). Mayo Clinic in Rochester also has well known specialists. Good luck.