I have been diagnosed with dysautonomia for almost 3 years. I can remember the day I started feeling different. All of the sudden I couldn't swallow. It felt like there was a lump in my throat. I felt like I couldn't eat or drink anything. Then I started having blurred vision and heart palpitations (I had been diagnosed with MVP several years earlier). My ENT doctor thought it was some sort of virus (i also had terrible neck, back, and joint aches) so he gave me steroid shots which put the disease into overdrive.
For the next 10 months I experienced such a range of symptoms that no doctors could figure out. My heart would race and flutter, I couldn't sleep, terrible digestive problems (was prescribed to Nexium for the heartburn), neck/back aches, blurred vision, numbness in the hands and feet, terrible fatigue, extreme anxiety, headaches, stomach aches, fainting, stopped menstruation, leg cramps, and awful ringing in my ears. I also had a very low blood pressure. I went to neurologists who gave me MRIs, CAT scans, and shock tests (very painful). I continued seeing Gastro doctors who gave me barium swallow x-rays to see if I had a tumor in my throat or stomach. I went to allergists, more ENTs, General practice doctors, and an Infectious disease doctor who was convinced i had Lyme disease and gave me a spinal tap. I had every test you could be given. Finally the allergist suggested I see a Dysautonomia specialist. The second I got my results I cried I was so happy to have a diagnosis.
Since then I have been living with all of the normal/awful symptoms of Dysautonomia; POTS, Orthostatic hypertension, Scoliosis, Anxiety and Sleep disorders, MVP, IBS, etc. Just like most people with this disease, there are good days and bad days. The bad days are just so hard. It's a lonely disease to have because no one really understands what you are going through and it is so hard to describe. I have had several break downs to my family thinking that I'm the only one who feels this way, and I'll never get better.
I know that God gives everyone different struggles for different reasons. I also am happy every "good" day that I have, and I hope that my story will help others who feel like they have no one that knows what they are going through to understand that others do.