From 1980 through 2024 as Charley’s epilepsy became more severe, he started suffering with clusters of seizures. We had no idea that Charley’s seizures had increased to the point of being continual. I have always wondered if Charley’s fighting seizures with everything in his being could have possibly caused his seizures to decrease in visibility and increase in intensity. There was no internet during most of the years of our seizure journey. Our only avenue for information came from the words spoken by Charley’s doctors. Together, Charley and I talked to his doctor about Charley’s violent outbursts. Charley explained to his doctor that there was no reason to be so agitated and that he could feel his demeanor moving toward irrepressible anger but could not stop that from happening. Every doctor’s answer was to look at me with the utmost puzzlement on their face and say, “You just need to quit making him mad.” So, as the years passed, we stopped asking because the doctor would blame me for the problem and listen no further than their false assumptions took them.
The traits that defined clusters of seizures were not well known, or perhaps many were not known at all, during Charley’s lifetime. Articles are available now that define clusters of seizures. Medications are available that directly target clusters of seizures. The progress that I doubted would ever happen is now becoming a reality.
The National Library of Medicine explains seizure clusters in a way that speaks to me deeper than many other definitions found on the internet:
Seizure clusters are an acute (critical) and transient (meaning short time but that isn’t always the case) increase in seizure frequency relative to an individual patient’s baseline and are associated with an increased risk of injury, morbidity, and potentially mortality if not promptly and adequately treated. Despite their clinical importance, the management of seizure clusters remains highly heterogeneous (diverse), primarily due to the absence of a universally accepted definition, which is determined also by the wide variability in seizure semiology (very deep and thorough detailing of of each individual’s type of seizures, frequency, etc.) and baseline individual burden; as well as by differences in care settings. Outpatient treatment relies largely on caregivers’ ability to recognize seizure clusters and administer rescue medication.
You notice nowhere in this article states, “the spouse or caregiver of the person who has seizures just needs to not make them mad.”
Clusters of Seizures are a very real aspect of epilepsy. Some people have visible seizures; tonic-clonic (grand-mal) as well as others and other people who have epilepsy can have the clusters of seizures sparking in their brain without any outward appearance of seizures happening. This is what happened to Charley. When his epileptologist told him he was having seizures twenty-four hours a day the reality of what had taken over our life became very obvious.
Now there are rescue medications available for people who have epilepsy whose seizures are running away with them. The medication won’t be administered if the caregiver or person who is suffering with the seizures doesn’t recognize that clusters of seizures are occurring. Realizing how serious these seizures are and following through with discussing the possibility of their occurring with a doctor is so important. When a person who has epilepsy convulses or has any of the many signs of a seizure occurring that’s an indicator. If those signs repeat themselves, please don’t think that repetitive seizures is a new normal that has to be lived with. Go to the hospital, talk to your doctor, research until you find answers and make someone listen to you if no one will. A brain can only hold up to so much abuse and seizures are brain abuse.
What if the person you love is suffering from clusters of seizures that do not show any outward appearance? These seizures can last for hours, days or weeks and wreak havoc on the brain. For Charley, clusters of seizures that we did not recognize manifested as severe agitation that led up to outbursts of irrational anger. At times Charley would pace and pace and pace seeming to be trying to churn the agitation out of his very soul. He became very angry and insulting for no reason. Sometimes Charley would sit and cry due to being completely exhausted with trying to hold himself in check and not understanding the torture his brain was going through.
Clusters of seizures are not a part of epilepsy that caretakers are warned or educated about in most cases. Now that there are groups of people on the internet who have epilepsy they can visit and share experiences with others for more support and information. When seizures take a person to some of the darkest experiences that epilepsy can thrust upon them someone needs to be able to identify the problem. Hopefully their neurologist or epileptologist will recognize that clusters of seizures are occurring. I have been researching different rescue medications that are available for people who have clusters of seizures. The availability of medications to help with seizure clusters is phenomenal but only helpful if the person suffering with clusters of seizures, or their caretaker recognizes those seizures and asks their medical team for help.
Seizures are hard to live with on many levels. One being that the person who has a seizure usually has no recollection of what happened and/or if a seizure even occurred. Having epilepsy takes privacy out of a person’s life and often fractures their confidence and trust in themselves. Breaking a bone is an injury we can see and recall the event that caused the injury. Not so with seizures. People know they had a seizure because they were told a seizure occurred, they have a rescue dog that clues them in and protects them from harm or they wake up bruised and/or bleeding from a mystery injury.
So, how do people who have seizures and/or their caretakers and family recognize that clusters of seizures are occurring? Clusters of seizures can manifest in different ways. One easily recognizable type is tonic-clonic (grand-mal) seizures. When Charley had continual tonic-clonic seizures and the Ativan prescribed to stop them did not work I took him to the hospital. Anyone who has tonic-clonic seizures will say that finding their way back to themselves after a seizure takes a few days. If you don’t find that path back to yourself after seizures talk to your doctor. If you are a caregiver and you see the person who has seizures change from their normal, easy going personality to a person with severe agitation that cannot be tamped down by anyone’s actions that could be a sign that clusters of seizures are occurring.
Charley hated having seizures and he fought them when he felt one beginning. I always wondered if his working so hard to push away the physical aspect of his seizures caused a greater toll on what was robbed from him mentally.
Don’t expect, if you are the person who has seizures, to instantly recognize that clusters of seizures are occurring. Keep track of the date, time, and type of seizures you have. Anyone who is familiar with seizures knows the toll they take and that no one who has just had a seizure feels good enough to jump up and record what just happened. You can visit Seizure Tracker® – Your comprehensive resource for tracking and sharing seizure information. and print different pages that correlate to having had a seizure and keeping a record of every event. That website has many different options to help with recording seizures, medication taken, breakthrough medications and much more.
You can record dates, times and medications and every other physical aspect of seizures until your fingers fall off and not have any idea how to recognize clusters of seizures. If you are the person suffering with clusters of seizures, in my experience, you may not be able to recognize that your mentality has been pushed beyond the brink of reality due to your brain being in overdrive for far too long.
When clusters of seizures pushed Charley over his mental edge he became agitated very easily, could not let go of the agitation and physically looked tortured. During the seizure cluster episodes Charley didn’t sleep well and at times, did not sleep all night. He paced around as if to be looking for his own sanity but could not tell me why he was pacing at such a rapid rate. Charley disassembled many things with the thought that he was fixing them. He ruined whatever he was “fixing” by being too aggressive with the components and breaking them. As Charley’s seizures worked into tormenting him for longer periods, I became the enemy. Charley did not understand what was happening within his brain and could not control the anger that was churning within his soul. Though Charley loved me with all of his heart when clusters of seizures took over his mentality, he was unable to control his unreasonable actions or harsh words.
If you are the person who has seizures or are someone’s caretaker and you think there is any possibility that clusters of seizures are occurring, please speak to your doctor and be honest about what is going on behind the closed doors of your home. The problems are not your fault. There are now rescue medications that can be prescribed to stop the seizures.
The longer these clusters of seizures torment a person the worse the seizures become and the possibility of irrational behavior occurring becomes greater.
