Seizure Diaries: Pushing Pills
“I have taken nearly every drug in established medicine that is even remotely related to my condition.” So laments Charlie Hooper as he recounts the names of the various medicinal concoctions he has injected, ingested, and had implanted to combat his three decades-long battle with epilepsy.
Since first taking Tegretol and Dilantin for his seizures in 1986, Hooper has had ever increasing daily doses of new pharmaceuticals. And all of the drugs are taken in combination with other medications for high blood pressure and hypertension.
Hooper did not experience the standard onset of the disease. It lay dormant in his brain for over 20 years, and surfaced after his mother and primary champion died of cancer.
“My doctors said that I had a cyst in my brain my whole life, but the stress of losing my mom triggered the night seizures.” For the first nine years doctors simply dubbed the condition as “nocturnal episodes.” Expanding beyond night-only seizures, over time those episodes increased in frequency, intensity, and duration. Eventually they began occurring during the day. Eighteen years out, the seizures overtook his life.
No longer able to work or drive, Hooper is homebound, getting only occasional trips to the doctor and out of the house with his wife, Stephanie. Their lives are lived in and around epilepsy.
“I read about the 150,000 annual victims of SUDEP (Sudden Unexpected Death from Epilepsy), but I don’t want to go there…I have my children and my wife and my extended family to think about…I love them all,” he says. “My dad has congestive heart failure and is not doing well in Florida. I want to see him, even if is only to wipe the sweat from his brow.”
Seeing his dad in Sarasota one last time has its risks, no doubt. But Hooper insists, “I have lived with epilepsy for 30 years and I think I can handle the trip to Florida. It is the right thing to do.”
“I have my Vagus Nerve Stimulator, wrist my magnet, and my arsenal of drugs to keep me safe. I will be just fine,” insists Hooper.
Below is a list of the medicines I recall as a doctor’s prescriptions for epilepsy. I have been on heavy medications for over 30 years, so I may have missed one or two. These are listed from the best of my memory:
Tegretol – very first one prescribed
Carbazaepine XR – in the past and now currently
Lorazepam – currently as needed
Phenytoin – currently
Toprimate – Currently
On the Epilepsy Foundation website there is a list all the seizure medications and what each will do for the patient. www.epilepsy.com/learn/treating-seizures-and-epilepsy-medicines/seizure-medications-list
Other Medical Procedures
Each year I have my blood drawn two to three times to check the drug levels in my system. The tests help determine if the drugs are working well together or if other medical issues have arisen.
I have had numerous one week in-hospital stays to have EEG and V-EEG procedures done. These tests are performed without medication, so I have to go “cold turkey” from meds before the procedures can occur. The tests observe the electrical activity of my brain during seizures. The video monitoring helps the doctor observe how I am during seizures.
Four times I have had an MRI.
I have been taken to the emergency room several time because of gran-mal seizures.
- On one incident I fell onto a cement vase, cutting open my head on the left side. I also several arteries and split left ear in half. I don’t know how long I was unconscious. When I came to consciousness, I noticed a lot of blood on the floor. I called my wife to take me to the hospital. I ended up with 60 stitches (internal and external) on the left side of my body, including my ear.
In 2006 I had the Vagus Nerve Stimulator (VNS) surgery done. Here is a link to the WebMD website to explain it: www.webmd.com/vagus-nerve-stimulation-vns
I have had two battery replacements in my VNS since. The battery last from four to five years.
While having the battery, I have a magnet to use when a seizure occurs. I find that it works better on a petit-mals and not on gran-mals. I do not know why. One reason: it is possible that I am able respond cognitively to a petit-mal. During a gran-mal, I am completely unconscious and unable to respond cognitively.
Just about every six weeks I go to my neurologist, so they can go over things. I show the doctor my Seizure Diary. He or she checks the strength of my VNS battery, and any other issues that may have arisen since the last visit.
Complete list of Epilepsy Medications — family of medicines highlighted in blue (from Wikipedia) — includes the following:
- Carbagen SR
- Tegretol XR
- Depakote ER
- Keppra XR
- Oxtellar XR
- Qudexy XR
- Trokendi XR