When will rest come to they that fight Refractory Epilepsy?
“Come to me, all you who are weary and burdened, and I will give you rest.” Matthew 11:28
Are you an adult struggling against and fighting with Refractory Epilepsy? I am here to tell you; I have been in the struggle and I have found the is something more productive than the fight. The system of Refractory Epilepsy Self Therapy (R.E.S.T.) has worked for me since the early 2000’s.
R.E.S.T. is not a cure. It’s a way of life that allows me to live peacefully while I carry the diagnosis of Refractory Epilepsy due to genetic X-Linked Periventricular Nodular Heterotopia.
One crisp overcast Fall morning, Jesyka and I made our way through the winding, seemly never-ending hallways of Vanderbilt Hospital in Nashville Tennessee to arrive at our Epileptologists office. We had both been taking multiple Antiepileptic Drugs (AEDs) for several years, always increasing one as our doctor instructed us to do so for better seizure control. The goal was complete control of seizures with little or no side effects. This day was different, our doctor asked to speak with us in his office. A first in the ten years he had treated us.
Life was always an adventure and a game for the two of us. Periventricular Nodular Heterotopia, the mysterious genetic brain disorder we both carried added to the adventure. While we waited in the doctor’s office, we played silly word games and giggled over the numerous times we became temporarily lost in the halls as we found our way to this important place. Yes, we are both adults. Adults living child-like moments of fun. I stopped laughing for a moment, looked at her with a serious face and let her know whatever the doctor was going to share with us, we would grow through it together. She smiled and agreed saying, “We are one standing in the face of a force we are beginning to understand. Let the learning continue…” and as if on cue, our doctor entered the room.
Sitting in his high back leather executive desk chair, he cleared his throat and shuffled paperwork. Looking first at me, then at Jesyka his face struck a nervous grin. “I can tell this is serious by your smile.” I said aloud. Dr Khalil replied” Well, yes and no. I asked you both here to share with you our progress, some news, and brainstorm with you a plan for the next few months.” The next moments were silent.
“Just let us know what’s on your mind Doctor Khalil. We are prepared.” Said Jesyka, breaking the silence.
“Okay, here it is, we have had you both taking every anti-seizure medication known to modern medicine for the past almost ten years. Some worked temporarily giving good control then for reasons unknown, your brain and body developed immunity to them, and they lost effectiveness. Some we found you were allergic or extremely sensitive to. We have used cocktail combinations in hopes of gaining control and yet, seizures for both of you continue. During our last office visit the seizure count was in the 60’s per month for Tonya and much higher for Jesyka. This leads only to one conclusion; I have to let both of you know your cases of PVNH related seizures are now classified as Refractory Epilepsy related to PVNH.”
“What does this mean for us in a real world, daily life situation, Dr Khalil?” I asked.
“Seizures that are classified as Refractory are basically not able to be controlled by any medical means. We will continue methods of control if you both wishes, but the chances of a good amount of control to increase your quality of life are very slim – maybe none.” Dr Khalil answered.
“Yes, but we will still be living and functioning as best as we are able every day, right?” Jesyka questioned.
“There is the high risk of SUDEP as we spoke of earlier in your therapy. Of course, I can promise nothing. I can say you have no clear threat of further harm or death in the extremely near future.” Comforted Dr Khalil.
“Of course, this will take some time to unpack in our minds and digest before we have any questions, but when we do, we know you will have answers.” I directed toward Dr Khalil. He smiled, more relaxed this time, in appreciation.
“Where do we go from here? We do not want to lose you as our doctor unless you feel it is best. We are willing to listen to your suggestions on future therapies or other specialists.” I said with a bit of anxiety in my voice.
“Well, let us keep both of you on the same regimen right now until next office visit. When you are home, investigate ways to manage stress, manage better sleep habits, and then bring me what you find. Perhaps the key to control is outside of medicine. “And with those closing words from Dr Khalil, our meeting ended.
Over a quick snack out of a vending machine, Jesy and I began to verbally unpack what we had learned in the meeting with Dr Khalil. Refractory Epilepsy was a different diagnosis we both felt difficult to wrap our minds around, so we decided to take this news a day at a time.
Jesyka pointed out to me that our approach was like the point of view of Alcoholics Anonymous view toward addiction. In that moment, we were forming the basis of Refractory Epilepsy Self Therapy (R.E.S.T.)