There is HOPE!
Its been 2 months now since I have got my CVS episode and this is quite unbelievable because I never thought I would get better.
I am Vinayak Rao a CVSA patient from India suffering since end of 2013-my vomiting episode cycle was once every 10 days and each lasted for 12hrs a day. Recently I attended the 13th Annual CVSA conference organised by http://cvsaonline.org/ in Milwaukee, USA -end of June 2018.
The conference that lasted 3 days was extremely useful where I got useful information from specialist Doctors through presentations. We were updated on the history of CVS, popular treatment plans and the emerging research in this field. The organisers were extremely warm and the real heroes who got all of us on this wonderful platform. I also consulted Dr.Thangam V at Froedtert Hospital Wisconsin who was very warm and kind.
I got a chance to consult (paid) Dr.Richard Boles in Pasadena, California. He is a Genetic Doctor who has been studying and treating this Syndrome closely. I was prescribed a treatment plan which I followed since July 2018. My episodes stopped post 4th August 2018. Such a long gap between episodes has never occurred since I got my 1st episode 5 years back. Amitriptyline and COQ10 (Qunol brand – Ubiquinol ) worked for me. The dosage is very important I remember taking these medicines earlier however they were ineffective because the dosage was way too less and the earlier brand of COQ10 was not as pure as Qunol-Ubiquinol. Please consult your Doctor before you take these medicines.
Dr. Boles advised me that this is a good sign but I should continue with the treatment plan.
There is hope don’t give up! Things will get better.