PLEASE help me - POTS/severe dysautonomia

[wycky4]

Hi,
I am a 22-year-old female and was diagnosed with POTS/severe dysautonomia in 2000. My life has been a rollercoaster ever since. I have had good times and bad times, and right now I am having a lot of problems. I will tell you that I am American, but am currently residing in Italy (please don't remove my posting for stating this, it is pertinent) and there are only a few doctors here that even know what POTS is. Since hardly anyone knows what this condition is, nobody seems to be able to help me.
First let me give a brief medical history of myself:
in 1997 I had a lap-appy (the examination of the appendix showed that I had double the nerves, which, according to my doctors, was the reason why I was having so much pain);
in 2000 I had a lap-choley (what happened was I was having a BM and all of a sudden I had this terrible stabbing pain that caused me to hyperventilate. I was unable to walk. I was taken to the hospital and they saw that my gallbladder just "stopped working". They told me after surgery that the nerves had died, or been "turned off". I did not have any stones.);
in 2007 I had my descending colon removed because the nerves and muscles "died". The entire descending colon was smooth, there were no muscular rings present.);
a few months later I had to remove the rest of my colon because the same thing happened. I did the transit test and the rings were not expelled even after 10 days. I still had 80% of them in my colon. They also did numerous manometries and found that I had no sensation. The doctor filled the balloon up as much as he could and I could still not feel it or expell it. They thought maybe I had mega-rectum, but the other tests suggested that I did not. I had an ileo-rectal anastomosis and things seemed to be better until a few months after surgery. I started vomiting everything that I ate and even started vomiting blood and passing blood in my stool. All tests were negative.)
Now I am having problems again with having BMs. After this surgery I was having 20-30 BM per day, but they consistently slowed down. There were times when I did not have a BM for 2-3 days, eventhough I do not have my colon. I also started vomiting again, about 3-4 times a week. I did the test where I had to eat a green egg sandwich and then get x-rayed every half hour, I believe. This test showed that I had severe gastric emptying problems.
For a while I was doing fine. I was put on Mestinon and Effexor and seemed to be doing OK.
Two months ago I started having pulsations in my abdomen. They were always becoming stronger and started becoming painful. I went to the ER in Italy, who told me that it was not an aneurism, but they suggested that I go home to America to get checked out due to my complicated medical history and their lack of knowledge of my condition. I did this and my gastroenterologist put me on Lactulose (3x/day) believing that I was maybe having a problem with my liver in that it was unable to covert ammonia. He thought this because I seemed to have more problems when I was not passing stools (he said that they would ferment..thus producing toxins). This medicine has helped me to become more regular in going to the bathroom, but two weeks ago I started getting much worse. I now sleep between 16-18 hours a day and have been vomiting 90% of what I eat during the last 8-9 days. I also fainted last week and believe that I was on the floor for 3-4 hours. The pulsations in my abdomen have also come back. However, the WORSE new symptom that I am having are these electric impulse sensations in my brain, heart, and the area between. It seems to be triggered by moving my eyes or when I close my eyes. The pulsations in my brain are on both sides, but not on the top, back, or front. There are some days when I have this weird feeling about 90% of the day, and it is very freaky. When it happens so frequently I actually feel like I am dead, almost like an out of body experience. This symptom is freaking me out and I want it to stop.
I have talked to a few doctors in Italy, and saw a neurologist today, who both suggest that I should stay at home, in bed, and not be by myself. I did not have much luck with the doctor today, as she seemed very overwhelmed by all of my symptoms and seemed almost scared. This, obviously, was not reassuring. What I am going to tell you is the same thing I told her: I cannot live like this. This is not living. I cannot live in my bedroom and not leave the house for fear of hurting myself. I am not depressed, but I am starting to think that after all of these years living like this that it would be better to be dead. Please do not take this the wrong way, but rather try to understand the seriousness of my condition and the desperation I have for fixing my problems.
I spoke to a family member of mine, who is a nurse, and this person suggested that my new symptoms almost seem like epilepsy. I did some research and the "Simple Partial Autonomic Seizure" seems to describe pretty well what I am currently going through. Obviously, I am not a doctor, but I am trying so desperately to figure out what I have so that I can get back to living. I had to quit my job and take a medical leave from school. I am beside myself.
Another thing to mention is that last night my right leg moved on its own. It would jerk, shake, and tense up. I had absolutely no control and this has never happened to me before. I have however had past problems of random paralysis, but I did the test where they stick the needles in the muscles of the arms and legs, but it was, of course, negative. I also noticed today, thanks to my bf, that I have been having some dyslexic moments. I don't know what to make of this.
Other problems that I have always suffered from, including currently, are that I have an irregular heart beat (it speeds up when I breathe in, and then skips a beat and drastically slows down when I exhale), a pounding heart (where it literally feels like it is going to beat out of my chest, and when this happens I can "hear" my heartbeat in my ears, it is almost like a popping sound-like when you are on an airplane), severe concentration problems and memory problems (I had an episode in 2004, and I still to this day do not remember 6 months of my life. I happened across pictures from that time period of important events that I attended, and I felt like I was looking at fake pictures...I have no memory of those events. I had an MRI, order by my neuro, and he told me that not enough blood was arriving in my brain, and in order to protect itself, part of it became "dorment".), and equilibrium problems (I frequently run into doors and walls...which makes me feel like a complete idiot. I should also mention that I do not drink (seriously) or take drugs of any kind (not even pot). I have had alcoholic drinks in the past, but they would make me feel so sick, so I stopped. I haven't had an alcoholic beverage for over 14 months.) Another thing, that may or may not be pertinent, is that I was having vision problems, so I saw an eye doctor. I filled the Rx but the glasses were not helping at all. I went back to see him 3 days later and my Rx tripled in strength. He was speechless. He said that in all of his years of experience, he has never seen such a rapid change in Rx.
I know that I wrote a lot..but I am hoping that SOMEBODY out there can help me. I am just going out of my mind. My mom obviously wants me to come home to get checked out by American doctors, but everyone seems to think that I am not safe to fly right now.
I hope that somebody knows what I have or can give me answers by reading what I wrote, but I also know how complicated all of this is and am very used to not getting any kind of answers that make me feel better. Even if you don't know what I have, could you maybe provide me the name of somebody that might be able to help me??
Please..I am begging all of you..somebody help me......

[MG (Admin)]

Thanks for your question.

Please let us know the following:-

1) How was the diagnosis of POTS made?
2) Have you ever had an EEG?
3) What is your precise gastroenterologic diagnosis?
4) How did your doctor diagnose a liver problem (blood tests, imaging / ultrasound)
5) When was the last time you saw a neurologist and what was their conclusion?


Thanks in advance