Things I have Tried

The journey has been long. At times I feel like I have tried everything under the sun and then some other-worldly things. I have been on every anti-convulsant out there. Keppra, Topamax, Dilantin, Tegretol, Phenobarbitol, Meberal, Depakote, Mycelin, Tranxene, Lamictal, Diastat, combinations of these and probably some others that are not on record. I now know with recent research that if someone is not controlled with medication after trying two or three drugs, the likelihood of ever achieving control with medication is not very high. I even tried birth control for a time to help control seizures when a physician suggested I might have catamenial epilepsy.

There have been plenty of alternative therapies that I have tried also. Chiropractic, acupuncture, homeopathic, massage, the modified ketogenic diet (without a team...that was awful), nature paths, and others . My parents took me off of sugar, my mom even tried to make a sugar-free birthday cake in the 80's (it didn't turn out so well). I saw some guy that had a shop above a garage who put copper plates on my head and rubbed his fingers around on a machine that he made me swear to never tell the government that he had. He made me drink "living water" and alove vera. I hung a metal weight from my head while I was laying down, to stretch my spine and take pressure off of my nervous system. I have had a chiropractor place me on a special bed that made waves in water to help my back. Small machines that sent electricity to my nerves telling them, "Don't seize! Don't seize!" There was a time that I was taking 52 pills a day in college. A combination of natural medicines, anti-convulsants and vitamins. I can swallow 19 pills at once :) These and other treatments were all going to be "the one" that made everything change. We tried everything, just hoping that this would be the treatment that helped.

During all of this, every physician I saw could not give a reason for my seizures. All of my tests-EEG, MRI, CT came back normal. Someone told me once that my epilepsy was probably due to birth trauma since I had to be delivered with assistance of a vacuum and I have absolutely no history of seizures on both sides of my family. I spent a week at the University of Utah when I was 23 for an intensive video EEG with hundreds of electrodes. After praying for a seizure (you can't imagine how weird that was), I finally had one after a week of not sleeping and just eating french fries and sugar. My mom went to push the button to mark the beginning and the entire computer system crashed. Lovely! The only thing the doctor could tell me was that my whole brain is involved and surgery was not an option. They suggested the Vagus Nerve Stimulator, but the side effects were not worth the risk of only "possible" control.

The brain is such a mystery. No one really can say that they understand it. After working professionally with physicians for years, I understand why they say, "I PRACTICE medicine". The human body is so complex that only God can comprehend everything about it. They really are just practicing. I had a lot of anger for many years towards the medical community, because they couldn't "fix" me. They weren't trying hard enough, they didn't care, etc. I have let go of those feelings and it sure makes my life easier. After all of the specialists I have seen, and after working with physicians professionally, I know that they are just people. SMART people. There are some that just have a horrible bedside manner, but they work hard. There are others that are empathetic, but you don't feel they are trying to push the envelope. My advice is when you feel comfortable with a physician-you're lucky. Take it and run. You might have to try three or more to find the right fit. I am so grateful that my sons neurologist is someone that I connect with and listens to me as a parent and someone that has epilepsy. I wish that my parents would have had someone like him when I was younger and they were going through some of the same struggles.

At this time I am not on any medication and have learned what triggers my seizures as an adult. STRESS. Life is definitely not stress free, but having epilepsy no longer plagues my life, it empowers me to be able to take care of my son and hopefully reach out to others who are struggling.