Hurricane warning systems are set up to protect people from storms of Nature. No warning systems exist for Hurricane Brain, a genetic disease. Hurricane Brain is a different, more severe form of Epilepsy. Differing from many cases diagnosed with Epilepsy, PNES, or seizure disorder. Hurricane Brain, a label I chose for my diagnosis, is a medical, neurological mystery in which seizures occur without warning or Aura. Seizures seem to have no known trigger. Seizures occur in clusters, more than one seizure at a time, or a single seizure in a day. Hurricane Brain is complex, difficult to diagnose, and almost always medically uncontrollable (Refractory or Intractable). You will not find the term ‘Hurricane Brain’ in any medical text or hear it as an official diagnosis as it is the term I use personally.
The diagnosis is known to the medical community as X-Linked Periventricular Nodular Heterotopia with Refractory Epilepsy. Hurricane Brain summed it up and is much shorter for the average person to understand. Hurricanes occurring in Nature and in the brain are different yet similar. One working in water and on land, the other working in the tissue of the human brain. Both bring destruction and leave paths of brokenness behind. This book, Hurricane Brain, is the story of the Hurricanes I experience in my brain, the destruction and brokenness left behind, and what I have done to overcome the waves of comorbid diseases overwhelming my every day due to genetic X-Linked Periventricular Nodular Heterotopia manifesting the hurricanes at nine different levels. The following is true to the best of the ability of my memory, when possible I used personal medical notes and records to fill in the lapse of my memory to give you a clear picture of what it feels like to live with a hurricane brain. Every person, adult or pediatric, diagnosed with a seizure disorder (a.k.a. Epilepsy or PNES) may have a different account of what a seizure, a hurricane, may feel like. This is my personal account of each of nine different types of seizures I have experienced during over 30 years of diagnosis of Refractory Epilepsy. Readers will discover how I survive and eventually thrive before, during, and after each hurricane in my brain, the waves of co-morbid disease, and destruction brought about by electrical surges and physical destruction of each hurricane in my brain. Please keep in mind, I am not a doctor or therapist. Any medically related advice you find here must be taken to your treating doctor before you decide to test it on yourself. Although much of the advice I tested and continue to follow today was intuitively inspired, I brought the ideas to my doctor before taking action to discuss the “pros” and “cons” while letting him remain up-to-date in what I was choosing for my own healthcare. Discussing these decisions with your doctor is the personally responsible thing to do. As you read through my experience with Hurricane Brain, you will also come to know my daughter, Jesyka, also diagnosed with Hurricane Brain when she was quite young. You will discover some of the challenges she faced as a teen while managing this unforgiving disease. You will become witness to some of the intimate conversations we had involving our shared diagnosis. You will also be among the few to peek inside the first meetings creating innovative resources for people like us. Together, through the words I write, we will experience life lessons and learning moments stirring a sense of hope, connection, celebration, and grief. Remember, as you read, you may feel the urge to send comments of support. I encourage your words with one request; feel the intention in them before you send them. I appreciate authenticity and no pity. Always remember, dear reader, you are loved.
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