Friends,
I am writing this letter in hoping that it will help you make a decision in a thought that will change your life’s story for the rest of your life. My story starts with one test that I was taking. My doctor put me on an EEG that was a multi day carry pack and was attached to my head. I was having petit-mal seizures every 4 to 7 days and I was going to college. My doctor put me on this test to see if we could document a seizure to get more information on my seizure type. The EEG battery unit was only good for 5 days, and in the 5 days I had no seizures. I had even stopped taken my medicine to force myself to have a seizure. I went to school with the unit on my head and carried the EEG pack ever where I went. On the 5th day, which was a Friday, I took the unit off my head at bed time. The unit still had ¼ battery charge and could have lasted 1 more day, but I was told to wear it for 5 days and bring it in on Saturday. Friday night was a nightmare. I went to bed at 10pm. At 10:45pm I had my first Grand-mal seizure ever. My wife, Patti, woke up because I was flopping around and had fell out of bed. She called the paramedics. They came to see me and I could not talk, walk, lift my arms, stand up, nothing. The Paramedics asked me questions that I still don’t remember to this day. I decided not to go to the hospital with them so they put me back in bed. Worse move ever. Around 1:00am I had another Grand-mal seizure and Patti called the paramedics again. I was in terrible shape. I could not control anything going on. My body was limp, but I refused to go to the hospital. That was one of the worse nights of my life. I could not control any muscle in my body. I slept for 13 hours after this happened. My body was in bad shape and I had sore muscles all over my body. I had bruises on my legs and my back. After this was over, my doctor made plans to put me in the hospital and remove me from meds and put me on special EEG and camera watch program for testing.
This was another change in my life. I was admitted to the hospital for testing. They did the EEG and took me off my medicine and video taped me and I had complex partial seizures. My doctor said that the seizures I was having were beyond his control, so he sent me to a better doctor. The new doctor put me on 2 new medications and set dates for hospital EEG and Wada testing. After these test it was discovered that I had temporal lobe epilepsy. We rotated medicines for 5 to 6 years and no success. At one point in time I was on one medication that kept me seizure free as long as I has a buzz from it. That is how I got my driver’s license back. I lied and did not go 6 months seizure free, but the buzz from the medicine kept me from having seizures. I drove for about 6 months, then I had a terrible single truck wreck that almost killed me. God was watching over me. I spent 8 days in ICU and 10 days in the hospital total. My wife was in tears every day. She was strong but had a rough time staying together. I lost my driver’s licenses again and I was in bad shape. At this time, all I thought is that epilepsy was the brick wall in my life and then a new door was put in the wall.
I had tried over 9 different types of medication and 5 types of combinations over the 11 years that I was with my new doctor. He then brought up a new thought that was shocking news for me. An epilepsy brain surgery that would remove the section of my brain causing the seizures in my head. This was something I had never heard of and I did not want it either. I know that sounds terrible to hear, but I did not want any person touching my brain. I believed that medicine combination could help, so we put surgery under the table. I tried more medicines and other combinations and even tried new medications on the market, and that’s what caused the problem that changed my life forever.
I started a new medicine close to Thanksgiving holidays called Vimpat. This medicine had a weird side effect. It caused me to become wired with energy and start to become isolated from everyone. On November 26, 2010 I isolated myself in my bedroom with my bible and began reading my bible from the start of the New Testament. The only thing that I ate or drank was my medicine with water over the next 12 hours. I then heard a voice in my head start to talk to me. Man, my world was turning upside down. I was beginning psychosis and bipolar disorder. There was a whole turn of events that began. The voice in my head began to speak out my mouth thru my vocal cords. It was like I was controlled by a demon. I had taken a back seat to this voice and my body was going crazy.
One night I was with my wife and I told her that God had been talking to me and that he was the voice in my head. She thought that I was going insane. I told her that God had been talking to me this whole time. She told me that I needed more help because I was not acting ok. At one point, we were traveling in the car and I put the car in neutral from the passenger seat and made her pull over to the side of the highway. I needed help, but I could not see that from my point of view. I got out of the car with both of our cell phones and started talking to the voices in my head. Patti talked me into coming back and asked me if we could go to a friend’s house for some help, I went back to the car with her. We went to the hospital with our friends.
I was taken to the hospital and I would not tell them what was going on. I kept everything to myself. I was released after a few days but all things were going wrong in my head. That Vimpat I was still taken was turning me into a time bomb. I could not sleep all thru the night. I would wake up with nightmares and the voices in my head were tearing me apart. It finally got to one point where Patti took me a second time to the hospital and they put me in the psycho ward. I was constantly talking to myself and the voice in my head had taken me over. This happened 3 times at 3 different psycho hospitals.
On the 3rd time I had actually attacked my wife. The voice in my head had taken over my body and it was in attack mode. I was taken off that bad medicine by this time, but it was too late. My life was in pieces. The police had picked me up from my house and taken me to the psycho-ward and I was talking to the voices in my head thru my lips. I was still having seizures but they were occurring every 3 to 5 days. Up to this, this was the end of my life and I was ready to call the end.
Then something new turned up.
My neurologist had taken records and got me on better medicines. He worked with me and got things under control with my epilepsy. I went to having seizures every 3 to 4 days back to every 2 weeks. I went to a great Psychiatrist and was put on a medicine that took the voices out of my head. I was diagnosed with bipolar disorder from the anti-seizure drug that I took. There was a new game in town, my neurologist wanted to do the surgery. I thought about this a lot. I thought it was time to change my way of life. My neurologist and I talked and we made plans to find the epicenter of my seizure circuit.
On the test, we inserted depth electrodes into my brain. There were 3 electrodes implanted on each side of my brain. These electrodes were touching my brain tissue directly. They were taking EEG reading in nano seconds. So they took me off medicine and went to watch over me for the next couple of days. I was in the hospital for 5 days and I had 3 petit-mal and 1 complex partial seizure. This gave the doctors all the information they needed to do the epilepsy surgery on me and to remove the section of my brain that causes seizures. I was glad to hear that. Finally, a solution to the problem that has been a nightmare with my life.
We set up the day of the surgery and everything was ready to go. I showed up early in the morning and got ready for surgery. I was a little nervous, but I was happier than anything else. The nurses came by and told me that they did not have all the equipment ready for the surgery and there would be a bit of a delay. So, the nurses finished my IVs and prepped me for surgery. The Neurosurgeon gave me a brief talking and I was ready to go. The surgery went on for 4 hours and when I was first woke up, I went right back to sleep. The doctors are not too sure why, but that is between me and God. When I say this, I don’t mean a voice in my head. I slept for a few hours after surgery and when I woke up, I was swollen on the left side of my face. I did not care. I was living a new life.
As of today, I have been seizure free for 20 weeks. That is 4 months 2 weeks. That is as of December 14, 2012. The surgery has been a blessing to my life. I can now work without everyone having to watch over me and worry that I might have a seizure. I am looking forward to getting my driver’s license back in January or February. My life has expanded greatly. Doing the surgery has been the best thing to ever do in my life. I highly recommend any person that has problems with their epilepsy and surgery becomes an option, DO IT. If you ever want to talk with me email me at: cnpgam@sbcglobal.net After a couple of emails, you might even get my phone number to talk with me person to person.
Lola:
I placed the words Chon so kindly wrote before mine because mine are insignificant in comparison. Chon has the same intentions as I do; helping others who are living with seizures to understand their epilepsy and encouraging them to pursue brain surgery if that is an option that will help them.
My knowing Chon is a complete God thing. Our friendship is something I believe happened because I listened to the Lord and in spite of the hard times, of which there were many, remained married for twenty-six years to my husband, Charley, who suffered terribly because of seizures. Though it was difficult to share our secrets about Charley’s insane behavior that I now know was the result of postictal psychosis I followed my calling and wrote Epilepsy Unveiled with the hope of helping others.
I was introduced to Chon because his brain surgeon recommended Chon read Epilepsy Unveiled before undergoing surgery to eliminate his seizures. Chon posted on my website and the few words he wrote portrayed such sadness; an anguished man with a wife who loved him and twins he wanted to be with that seizures and psychosis had chased away against all of their wills. I wanted to cry as I read Chon’s words. Charley and I had walked in the same shoes that Chon and his family were now wearing. We lived with endless seizures and the misery of misunderstood, relentless insanity. I prayed my book would provide encouragement and answers. Chon had ordered Epilepsy Unveiled and was praying something within the pages I had written would bring him hope and help.
When I began writing Epilepsy Unveiled in 2003 I was angry because no information could be found about epilepsy and psychosis being related or the insanity that seizures (and sometimes seizure medications) can create. I remained married to Charley because I loved him dearly and I knew the insanity we endured was caused by seizures. I searched but could find no answers or help. During the nine years I spent writing Epilepsy Unveiled the thought that kept me writing was if our experiences helped one person my goals would be met. If someone who was unknowingly living with psychosis that was caused by their seizures read Epilepsy Unveiled and recognized their symptoms which led them to get medical help and live a better life my writing would have paid off.
Chon is the first person to read Epilepsy Unveiled, stay in touch with me before and after brain surgery and tell me that reading Epilepsy Unveiled was a benefit to him. He is my one. Chon had decided to change his life before ever hearing about Epilepsy Unveiled. He did not have brain surgery because of reading Epilepsy Unveiled nor did he relate that he discovered any miraculous answers within the pages I had written. He found exactly what I wished to relay; hope and understanding.
If you are suffering with seizures I want to use Chon’s words to relate what he and I both are trying to say: Change your life’s story. If you have epilepsy and feel hopeless about the situation do something different. If you are living with misunderstood insanity or violent behavior perhaps you are suffering with psychosis. Talk to your doctor and tell them everything. If your medical team knows nothing about seizures creating psychosis then you need to find a doctor or medical team who are knowledgeable enough about epilepsy to acknowledge that psychosis can be a byproduct of seizures.
Chon states, “We put surgery under the table.” This choice was made because of fear and that is understandable. Charley and I did the same. We should have pursued epilepsy specialists and brain surgery years before we did. Seizures were our normal; occasional insanity our secret; hopelessness our life. If you have a chance at brain surgery eliminating seizures don’t put surgery under the table. Put you on the surgery table and make a new door in the brick wall that epilepsy has created in your life. I state in Epilepsy Unveiled that we should have been more frightened of the seizures than the surgery. I implore you to read those words and take them in. I lived for twenty-six years with a person who suffered with severe epilepsy. I watched the progression of seizures and witnessed the mental decline that they can cause. The more seizures Charley had the weaker he became mentally. The mental weakness caused him to become physically weak; he could do nothing but sit in a recliner day after day because seizures were stealing his life.
Don’t spend your life looking back on what you should have done. Look forward to what you can do to get your seizures under control or eliminated. Never give up. If there is no treatment today that will eliminate your seizures tomorrow there may be.
Seizures can take so much away from a person; the ability to work, think straight, drive, bladder control, memory, and even walking without falling down. In some cases seizures take away family and friends because they do not understand or cannot live with the illness. If seizures are robbing you of everything that is important to you remember Chon’s words and draw strength from them: “It was time to change my way of life.”
Congratulations Chon! I hope to meet you in person some day and hug your seizure-free neck and express face to face how happy I am for you and your family. I thank you from the bottom of my heart for reaching out to me and sharing your story with those who need to hear it most.
This is the latest update from Chon on his two year seizure-free anniversary:
Hello Everybody,
I thought that I would update my life story to help inspire more people to go for the surgery option. As of July 24th, I will be seizure free for 2 years and reducing down to only 2 medications. I also have my driver’s license back and I play taxi driver for my whole family. I have grown inside, teaching others about epilepsy and the options they have to look forward to. I have passed along the epilepsy unveiled website to many people that want information and that are looking for new answers. I want to say thank you to Lola for all the hard work she does. Without her, I might have never taken my first steps to surgery to have the blessed life that the Lord has given to me today. I thank God every day for the blessings that He has passed to me. All it takes is one step and you can change your life and enjoy it to the fullest…..
Chon C. Gammill
What an inspiration Chon is!! I am so blessed to call him my friend.
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