Coming off massive doses of phenobarbital after surviving status

I had status and was having 40 convulsive seizures an hour. That was before there was 911. It started about 10pm. We had to wait for a neighbor to get home so I could be put in the back of his station wagon. I got to the hospital about 5:30 am. I was told that they got me out and had called Mom to come pick me up but before she got there I was in status again.All I do know is the doctors had done everything they could do per the head of the hospital who was the head neurologist. I came to 3 days later. As for phenobarb. When I was taking it I always took a high ammount. After moving to Dallas from Califirnia I had to get a neurologist, One of his first questions was "How do you get up in the mornings" I told him I put my feet on the floor and stand. He informed me I was taking the highest dosage he has ever seen. Followed by "You take enough phenobarb to put the average man to sleep for 24 hours.. So yes a person can survive status. There are things that need to be looked at and the neurologists are doing what they can to keep his seizures controlled. By reducing the phenobarb at smaller rates they can stop the reduction faster if seizures start happening. As far as you have been told NOONE has done it before. But do they have facts of all patients. Each person is different which is also why they are looking at other things that can help.Yes I was on phenobarb at the highest levels doctors had ever given patients.The medications I was on I had been on for about 30 years. Dilantin was the medication I had to come off of and it had to be done fast since I had gotten toxic on it after that period of time. The hospital switched me without weaning me off and I was there for a few days. I was at family members home for the next week so if anything happened I could be taken to the hospital fast. I had no problems. Yes there are draw backs but over a short period of time they resolved themselves.Since 1970 I haven't had a convulsive seizure. I have used many dofferent meds. I currently taking keppra (at the highest level) along with vimpat. When out I carry lorazepam which I take to stop the possiability of clustering.I have always taken higher dosages then mote people. Like I posted each person is different so they all have their own tweeks and turns that have to be looked for.I hope this helps anad he gets seizure freeJoe

As Joe said each person is different. Pheno has always been an old standby for immediate treatment of seizures. If his VNS is helping that's great and bear in mind his brain needs this pheno too. The side effects are minimal .I was once on over 900 mgs a day by choice because I wanted a baby and my Dilantin had caused 3 with severe birth defects  This was in 1984 and there were no other options. I researched phenobarb and found the birth defects were minimal. My doctors were reluctant but I insisted on trying so I was upped to 900mgs, weaned off dilantin, got preg and had a baby boy who only had a cleft lip/palate with no harm to his brain's development. The worst side of the pheno was simply feeling tired. I went back to my usual meds after with no harm to me. I've relied on pheno for over 45 yearPlease ask your son's doctor why his dosage must be lowered esp if he is having such a bad reaction to not having it.