Let me just say Thank God I am back home. I felt like I was in lock down as a science experiment in that hospital. Luckily they finally realized I know what I am talking about and they even had interns and medical students coming into my room to ask questions about Dysautonomia. People were even taking notes. I felt a little bit like a professor.
The tests all came back and a group of doctors came in and informed me that I was correct it is a flaw in my ANS. Shocking.
After four days in the hosptial, normally someone would start feeling better. Well Dysautonomia is not like any other disorder, it always wants to rebel. They gave me medicine that made the room spin, and lowered my blood pressure and potassium levels that were perfectly fine up until the second day there. Take that hospital, you don't even know what to do for me on a normal day, so I convinced them after the MRI EEG and EKG that they were making me worse and I could do a better job. After explaining to them how each of their treatment methods were wrong, there jaws dropped slightly and I told them I would like to be discharged so that I can nurse myself back to health. They surprisingly agreed released me from the alarmed beds.
So I left concious yet dizzy from low blood pressure and this is what I ran over with my nutritionist and informed informed the staff of different treatments.
Dizziness when BP is fine and HR is below 100 (usually mine is about 130)-take half of my current dose of beta blocker until HR balances out again.
BP low- pickle juice shots
Potassium low from excess urination, flushing with fluids, and florinef- Bananas or something potassium enriched
Fidget a lot to keep from getting blood clots and to keep blood circulating
Lots of protein, veggies and fruit.
Keep drinking the gatorade and powerades
Do mild exercises such as yoga and stretching to keep up strength and keep your body fit
Never stop researching and take a stand- no one is going to care more about your health and wellness than you. YOU need to stand up and take part in your treatment. Make sure to ask about everything they are doing and don't be afraid to speak up. You are the expert when it comes to your own body.
Keep tabs on your vitals and health as much as possible. In order to control your health you need to know how it is working.
I hope all is well and all those suffering are in my prayers. Keep fighting the good fight and remember we are here to help each other.
