Hello, I am a mid 40s female and like your daughter had an active lifestyle until recently, when I began experiencing many of the symptoms your daughter has. The only difference is that my BP does not rise to high levels. I have also had blood sugar problems, including hypoglycemia and erratic blood glucose levels. I just had an EMG and it showed some neuropathy on my right side, although I am not experiencing any signs or symptoms of it.
I completely share your frustrations with lack of appropriate medical care and access to physicians who are knowledgable in this area. I am waiting to get into Mayo Clinic at this time, with an appt. in late January. I have waited months to get the appt. In the mean time I am seeing an endocrinologist, cardiologist, electro physiologist, and a neurologist.
I have been told my case is complex and that it will take a long time to determine exactly what is wrong. I have many symptoms, and the pieces do not all seem to fit together. For example, my adrenal system recently began to shut down and I now have adrenal insuffiency. I have been told I possibly have POTS, like your daughter, or that it could be M.S.A, a much more debilitating and progressive syndrome. Very little awareness of these syndromes is in the medical community where I live, and you are correct that EMS and hospital ERs have never heard of them. I have been to the ER many times and the Drs. do not believe me when I state my symptoms or explain what happened to cause me to go to the ER for treatment.
I wish all of the best for you and your daughter.