My name is Andrew and I am 37yrs old. I have a very rare type of epilepsy known as Pyridoxine Dependent Epilepsy. I had my first seizure at two weeks old. I was in mumâ€™s arms at home and the seizure was in the form of a slight tremble. I was about 3 weeks old when I had my next seizure. After this I was having many â€˜different typesâ€™ of seizures a day. Phenobarbital was administered, which turned out to be ineffective. At about 5 weeks old I was admitted to hospital. I spent the first five to six months of my life in and out of hospital. Doctors were mystified by my illness. None of the â€˜normalâ€™ antiepileptic drugs that were administered had any positive effects. When I had a severe seizure in hospital doctors administered Paraldehyde to bring me out of the seizure and keep me sedated. Countless tests were done including, EEGs, lumber puncturesâ€¦ etc. A top pediatrician from the main city hospital told my mother that he was going to a meeting. He said he would talk about me in the hope that someone there would be able to help us. At this meeting there was a professor who was doing research into childhood epilepsy. He suggested a trial of Pyridoxine HCL (vitamin B6). All antiepileptic drugs were withdrawn and the Pyridoxine HCL was administered (I was five months old). Within two to three days my mother noticed a big difference in me. Iâ€™d stopped having severe seizures. Iâ€™ve been taking Pyridoxine HCL ever since.
When I was 15 years old I underwent a very unsuccessful two year therapeutic trial of AEDs. At 19 years of age I discovered a multi B complex tablet. I had searched for one that contained at least 50mg of Pyridoxine HCL (same as what is in one of the B6 tablets that I am prescribed). The idea was to replace one of these. Since I have been taking this Multi B complex I rarely experience my aura.
The only seizures I have now are absent type seizures.
I also eat plenty of oily fish (Omega 3) and I have recently added a Magnesium tablet to my daily intake of B vitamins.
I do not use any AEDs to control my seizures.
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Thank you for your time,