There were a lot of layers that were revealed over many years that kind of hinted at what’s going on. The first thing that I noticed in my kids and I was that we had high intracranial pressure and being an eye doctor, I know the symptoms, which is headache, neck ache, nausea, tremor, light and sound sensitivity, and others, but they were getting lost in that mix of a gazillion other symptoms. Even more frustrating, the symptoms would sometimes come and go, but when I took Florinef to see if it would increase my blood volume, as many of us do with POTS, some of the symptoms just went through the roof and I was able to tell immediately that my intracranial pressure was too high. It resolved rather immediately with treatment.
Then another layer was figuring out that my kids and I were hypermobile and we were diagnosed with likely Ehlers-Danlos Syndrome. We don’t always know the gene involved so we can’t say with certainty that it’s a genetic defect, but we were told that likely the cause of our POTS was from a gradual laxity of the vessels over time because we had EDS. That didn’t sound quite right to me because there was nothing gradual about my condition, nor that of my son. Both of us developed symptoms almost overnight after viruses. I couldn’t help but notice that many others were also hypermobile, yet for most doctors were not able to find a gene [inaudible 00:10:45]for hypermobility.