Originally Posted by LongRoad

Hello WaterWillow,

I thank you sincerely for taking your time to write a thoughtful and encouraging reply. I think it is the enormous lack of information and support from the medical community that is as difficult to comprehend, as the condition itself. I have not yet met a medical professional who truly understands the condition, and surely they have not provided any meaningful assistance. Rather, the quick answer is, "it's psychological stemming from a past emotional trauma - you need a mental health person". Yet, they can't identify/explain any basis for their claim, no evidence of their conclusions, but are still content to firmly document such diagnosis all over one's medical records and leave the person on one's own to deal with the very real symptoms. The doctors seem so comfortable dismissing any professional responsibilities to help, that it is disturbing. They run several expensive tests/labs and charge for the highest level of consult, and then turn you away! If I were diagnosed with cancer, and yet left on my own by the doctors to treat myself, it would be called "medical neglect", but somehow not with this condition. I live in a large metropolitan city in the USA, but yet there is not even one medical professional that has any real knowledge or training about this condition. They can't explain more than a simple paragraph that anyone can read on the Internet. I do not know anyone with this condition, nor anyone who understands the struggles of this condition. Instead, I feel very misjudged and alone, with no answers, no support, and don't know what to do next.

I do not have a "past trauma". There are a lot of people who have enormous stress each day, and yet do NOT develop these symptoms. There response/coping skills are certainly not any better, so why do they not have this condition? Can it really be chalked up to "emotional stress"??

I believe stress can surely aggravate the symptoms, but, I believe, that is after there is already organic, physiological mechanisms in place that are malfunctioning, whether it is the derailing of messages among the neurons within the autonomic/CNS system or present damage to the neurons, or an imbalance of specific chemicals at the wrong times. It is "not" solely psychological, but rather a concert of physical with the psychological. Could possibly the physical be explained by things that cause damage to the body that mega-corporations prohibit from being accurately researched - artificial sweeteners, mercury poisoning (amalgam fillings), cell phone/computer emissions, food pesticides, sick buildings, medications, etc. My seizures began after I began taking a prescribed medication for my blood pressure, called Methyldopa. The seizures (3 to 4+ hours) began out-of-the blue and severe, like a big bang! All four limbs jerked wildly, non-stop. When I told my doctor about this, he "immediately" had me slowly withdraw from the medication and then DISMISSED (via phone call) me as patient! Wow...

Like me, it seems people, of different ages, battle this condition for "many" years. Of all my reading, I have not read about one person who has completely overcome it, yet stress levels change with life stages/situations. Therefore, how is this condition fully explained, if it were simply only psychological? Everyone talks about how little information and help is available, no matter what country in which they are located. I live in one of the largest cities in the USA and there is no help, not even a support group, and not one person whom I know that has this condition.

Each day, as a parent, I push through with my responsibilities, with frequent interruptions of annoying and exhausting symptoms. The symptoms are severe enough to stop me from whatever I am doing at the moment. Once another seizure and slurred speech passes, I keep going again, but how can I live life like this, for the next limitless number of years??

I also struggle just as hard each day with extreme blood pressure surges and falls within seconds (e.g., 230/195, 48/35), and have for the past 11 years. (I've been to every specialist possible, and gave them ten's of thousands of money out of my pocket.) The blood pressure extremes are random, but daily. The surges can be from stressful situations, to simply laughing and talking with a friend; the falls are usually due to positional changes (sitting/lying to standing). It's as if the mechanisms (baroreceptors) that balance the blood pressure fail to work. Pheochromocytoma has been ruled out many times. I was diagnosed with POTS, but also Baroreceptor Reflex Failure, which has left me very confused. Would you be so kind as to ask the members of your group if anyone knows of blood pressure involvement with FND/NES/CD/etc.? Again, your time and efforts are sincerely appreciated. The symptoms are not easy to live with... Thank you.
LongRoad