Medication Cocktail

Like you say, no one mentions phenobarbital.  I didn't know it was prescribed anymore.  I was on it maybe 45-50 years ago.  I'm not sure how well it worked; I was too young to remember.  My seizures are also believed to be post encephalitic.  I'm told I had high fever and infection at six month old.  Does taking all that medication have any bothersome side effects?  I can understand the scary choice of reducing meds and risking lost control.  But the side effects I've had from the pills (sleepiness, mood problems) left me with plenty of incentive to cut back on the pills.  Even if my meds controlled the seizures people would wonder why I'm so tired or aggressive. I'm sorry.  As crazy as it sounds I cannot identify with wanting to hide my seizures from others.  For awhile when I was trying to get and hold a job I did want to hide my seizures.  That didn't work.  Sometimes I almost wish others could know I have seizures to support why I go through so much extensive treatment (brain surgeries) or why I do not have a regular full time job.  And I cannot relate with having 50 seizures a day; that's a lot!  

I am ultra sensitive about people knowing I have epilepsy because I don't like being judged and put into a box labeled 'disabled'.  I lived 18 years without epilepsy and I know the difference it makes when people know you have a disorder.  Epilepsy falls into the "ism' category (i.e. racism, ageism, sexism, etc) I do have a lot of side effects, but I don't know which pill is causing each of the effects.  Obviously, drowsiness has been a problem.  I still managed to go through college and graduate with a masters.  I wouldn't be able to work if I cut back on my meds because I would have seizures on the job - I would lose work.  

Hi Stacey,I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. I can totally relate to what you are talking about. I’ve talked about this in previous posts, like when people have asked questions about defining “epilepsy” and I speak about it from the perspective of discrimination because that’s the part that people seem to forget. You are right, you will probably be discriminated against and depending on the nature of your job you will probably lose it because that’s the world we live in and no matter what protections are supposedly available to us under the Americans with Disabilities Act, employers win more often than the employee and it also takes a hard legal battle even if you do prevail. But, your doctor is trying to warn you about the long term effects of taking so many AEDS and at such high doses of some of them. As one of my epilepsy specialists said to me when I was on three “you’re poisoning your body”. I’ve never experienced full seizure control and if I had that, I’m sure I wouldn’t want to give it up either. Your quality of life (ability to work) is obviously an important factor too, but without knowing details about your education and the type of work that you do...I can’t offer you any advice. There are times when we think our options are completely limited because of epilepsy, whereas we may have something available to us even if it’s just a short term solution with our employer as we work with our doctor to see if reducing our medication is an option.