Hello there. I am SO sorry to hear about what is happening to your daughters Robrich and Larryweich - it is absolutely frightful. It does NOT sound anything like anxiety Robrich, grrr! I know because, if it is the same illness as mine, it happened to me too. One time I was carried into ER, body writhing, blood coming from my mouth and a pulse of 140 and dismissively they said I must be having a panic attack. I don't think so. I was 20 years old and, also, there seemed to be no obvious precursor. After a year or so I was diagnosed with Paroxysmal Dystonia (or PD/PNKD) by a top Neurologist. I was very fortunate. Once I was started on Topirimate (Topamax), the attacks began to taper off. It had got to the stage where I was experiencing 3 severe attacks a day; each attack would last for 2 hours or so and would leave me listless and terrified as I never knew when another would happen. It was the most painful experience of my life: my feet would turn inward and could not be moved by two grown men, then then stone-like spell would spread upward through my legs. My eyes would roll into the top of my head and stay there and my head would fix as far back as it could go. But the worst was my jaw: it would twist sideways, almost dislocating itself, my teeth shredding apart the inside of my mouth until it bled. I had to have my four wisdom teeth removed.
I have been on Topamax for 6 years now (200mg a day) and now only experience a tightness in my left foot/leg, which was perviously a warning symptom before an attack. But it still scares me.
Currently, through my neuro., I have been gradually adding in a new anti-seizure med called Lamotrigine until reaching 200mg; and will now very gradually begin to reduce the Topamax which is terrifying! Topamax is known to cause birth defects so one is not advised to begin a family on this drug. Lamotrigine is a slightly safer bet. I cross my fingers, hope and pray that Lamotrigine will keep me as safe as Topamax has.
And I hope that your daughters find the best in specialists and medicines, as I did, in order to reach the quality of life that Topamax gave me.
All the best, Tamsin x