Long term Phenobarbitol use - Epilepsy Message Board

jhoffmann · 02-23-2007, 09:04 AM

Hello,
I am new to all this, Here is the question.
I have been on Phenobarbital for the last 34 years. My seizures have been totally under control since I was a teenager. For the last year or so I have been very tired and stressed. I missed my Pheno one day and felt better than I have in a year. I made an appointment with my doctor and come to find out I am one of a handful of people he treats that are still on Pheno. He is talking about switching my meds next month and I am wondering if there is anyone out there that has been on Pheno for 30 plus years and switched to a new medicine successfully. I am very leery about the change. It has been a part of my life for so long. I didn't even know there were options out there.
Any advice would be helpful.

cher1052 · 02-23-2007, 04:12 PM

I was on it when I was a child-that was over 40 years ago-I really can't answer your ? caht with your Dr-ask why he wants to change them-are there changes in your blood tests...I've been on several meds over these years-the past 5 years have been 2 meds-TegretolXR and Keppra-both are working for me. cherie

jhoffmann · 02-23-2007, 05:00 PM

Over the last year I have been getting more and more tired, don't have the energy I used too. I could just sit on the couch and watch 6 hours of TV, cry at the Charmin commercials and that would be fine. Had a little mental break down 3 weeks ago, spent the day in bed crying. Last year I was nothing like this! I have always had so much energy, been upbeat, humors, energetic, I had a great personality, until lately.
The Neurologist I see I don't really have a strong connection with, I only started to see him due to the death of my life long (30+ year) Neurologist.
I called to get an appointment due to the fact I felt better when I forgot my meds so he thinks that something has changed and a new med is in order. He continued to tell me Pheno is not really used anymore. I didn't know that. I just want my energy back but am scared of the change taking the pheno away will create. It's been a long time.
I will have results from blood work and egg results early next month but was just looking for some feedback from anyone on new drugs I might not want or want and if it really is hard to get off the pheno.