All I can say is, WOW I'm glad I changed cardiologists. You may recall that the last cardiologist told me that I had P.O.T.S (http://www.dinet.org/pots_an_overview.htm), tried some drugs on me (which put me in the ER) and then said to fix my problem I had to wear compression hose, prop up the head of my bed, eat a lot of salt and drink a lot of caffeine. He blamed me for not listening to my body and I never went back because I was embarrassed.

My new cardiologist spent an HOUR + with me today and said that P.O.T.S. is just part of the syndrome. I gave him a full list of all of my medical issues (liver, heart, head, adrenal, etc.) in a nice table with dates of diagnosis. He said that the form of dysautonomia I have is a full on malfunction of the nervous system and is both cardiological and neurological. He said that my previous neurologist needed to be replaced as did the previous cardiologist because they should have figured this out easily if they would have just spent the time asking questions. He said the previous cardiologist was right about eating lots of salt, and drinking lots of caffeine, so keep doing it, but the previous cardiologist was wrong in not investigating further.

He printed out a sheet for me to read about dysautonomia and said he'd give me 10 minutes to read it and that I would agree that it was just like checklist of all of the stuff I have wrong. He was right.

He then told me that he was sorry that I've gone all these years without a true diagnosis because this is an extremely difficult syndrome to live with and its easy to be misunderstood by friends and family. He said that my body doesn't regulate ANYTHING, including sleep cycles, moods, temperature, energy levels, etc.

Maybe now I can be honest with everyone and tell you that there are days that I pretend so hard that I'm feeling normal that it's exhausting and EXTREMELY unhealthy for me. I don't like being a drag, so I keep a lot of it inside until I feel at the end of my rope. I often feel that living alone would be much easier because then I wouldn't have to pretend. HOWEVER, BJ is stuck with me so I push those thoughts right out of my head.

So, moving forward, the cardiologist recommended a new neurologist who will work with him to find medications to help my brain regulate my body and he will work on regulating my heart. He said he wants to put in a little monitor under my skin that will monitor any abnormal heart rhythms that I'll wear for 2-3 years. He said that I'll probably need a pacemaker.

He even told me that losing weight was next to impossible for me because my system is so out of whack. It was nice to hear that because I have been walking at least 15 miles a week and eating next to nothing (coffee, two protein shakes and a banana would be my typical daily intake) and the weight has been stalled for a month. He said to not even worry about my weight. My blood pressure is super low as is my heart rate.

There is so much more to the conversation we had. He said that it's common for people with this syndrome to need to sleep for 14 or more hours at a time, which made me feel better about my sometimes excessive sleep. He said that I've probably been misdiagnosed as depressed, when actually it was just my brain not being able to regulate my emotion as well as my body needing excessive sleep. I'm glad I went off the anti-depressants. They never really did anything for me even though we kept upping the dosage.

I guess long story short is.. My body is just a big old hay wired mess, but at least now I know the reason behind lots of the stuff that my body does (even getting startled so easily.. Which drives BJ nuts...) This is also what happened at the dentist. My adrenal glands went crazy along with my heart.  Several things happened within my nervous system to make it the perfect storm.

He actually offered to call the neurologist from his cellphone in his office to get the appointment set up ASAP. I said I'd call on Monday. He seemed very intent in getting me "fixed", which feels like such a relief to me.

Word of caution to my family. This is hereditary so you might want to read up on it and talk to your doctors about it. There are many sub-syndromes of dysautonomia.

http://www.medicalnewstoday.com/releases/76785.php

I'll let you know how the neurology appointment goes...