The story of our long journey as a family with the condition of the autonomic nervous system that is POTs.
OUR LIFE WITH Dysautonomia (POTs).
Posted 18 / 01/ 2020
The symptoms of this condition are currently affecting 3 members of our family to varying degrees.
I was diagnosed with Epilepsy at 6 months old. I stopped having regular seizures by my mid teens. When i say regular i mean 6 monthly initially, fading out to more or less yearly, then every few years, often occurring in warm environments or during physical activity. My last seizure was twenty years ago, until last summer. I have had digestive problems all my adult life and weird symptoms such as head aches, dizziness, chest pain, nausea and palpitations. Difficulty thinking and getting my words out has always come and gone but has worsened in recent years.
Our eldest, now 16, had digestive problems from birth. Eczema plagued him until around 10 years old as well as chronic ear infections which caused language delay and hearing problems. Asthma, digestive issues and a sudden decline in his health in 2017 involving chronic head pain, loss of energy increasing Tics and finally seizures resulting in a diagnosis of Epilepsy.
Our youngest began having episodes of dizziness and blurred vision two and a half years ago, but has always shared the same digestive issues as us, though to a much lesser degree. She, like us has a diagnosis of Ehlers Danlos Hypermobility type III and problems with cold extremities.
Until our eldest became very ill in 2017 we had not even begun to put all the pieces together. We did not consider that our symptoms were the same condition. There has always been an unknown element in our seemingly unrelated array of symptoms, which for our eldest and I had been occurring for years. I did not know that i have had Dysautonomia for most if not all my life, as has our son .
It has thrown a lot of what i thought about my previous health diagnosis into question. We are all journeying through the painfully slow and frustrating process of getting appropriate NHS treatment. By sharing here, hopefully it will provide information and insight that we did not have in the early days.
AS I THINK I SAY. 