From 1980 though 2004 when Charley had clusters of seizures we found no information about them. I felt alone on an island protecting a huge secret that no one wanted to know about. The traits I saw that defined the type of seizures that Charley suffered with were not well known, or perhaps many were not known at all, during Charley’s lifetime. To find articles now that are about clusters of seizures and then find that there are medications that directly target clusters of seizures tells me that the progress that I doubted would ever happen is now becoming a reality.
I find huge irony in the wording used concerning the new medications that are available to help with seizure clusters: rescue medications. The term “rescue” reinforces the feelings of being hopelessly alone as I dealt with Charley’s clusters of seizures. I was on an island, alone and confused. I believe many people now are occupying their own island because clusters of seizures are not a part of epilepsy that caretakers are warned or educated about. When seizures take a person to some of the darkest experiences that their epilepsy has thrust upon them hopefully their neurologist will recognize that clusters of seizures are occurring. Hopefully, maybe, possibly this person who could be having seizures twenty-four hours a day for weeks at a time will be diagnosed and prescribed a medication that will stop the seizure clusters and bring that person back to their life. 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 only if the person suffering with clusters of seizures has the ability to recognize those seizures and ask their medical team for help.
Seizures are hard to live with on so many levels. One being that the person who has a seizure usually has no recollection of what happened during the seizure and/or if a seizure even occurred. Having epilepsy takes the “private” side out of life for someone who has seizures and often fractures their confidence and trust in themselves. If we break a bone we can see that injury and have the ability to remember 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 the harm a seizure can cause, 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 of clusters of seizures is for a person to have tonic-clonic (grand-mal) seizures repetitively (I use the outdated term grand-mal, it is familiar). When Charley had a grand-mal seizures he often had to go to the hospital. His doctor’s had prescribed Ativan to stop those seizures but if I gave Charley the Ativan and the grand-mal seizures kept occurring we went to the hospital.
There were times that Charley had only a couple of visible grand-mal seizures and they stopped. Initially when the seizures occurred and stopped, I thought that the seizure event was over. I learned to recognize that Charley had not stopped having seizures. I learned that follow-up seizures can manifest in different forms and last many days, thus my indoctrination into the world of clusters of seizures.
Charley hated having seizures and he fought them when he actually 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. I highly recommend that you try to keep track of the date, time, and type of each seizure 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 seizuretracker.com (s) website 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 still not have any idea how to actually recognize the mental problems clusters of seizures can create. 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.
Just as repetitive grand-mal seizures can be deemed clusters of seizures so can any other type of seizure that occurs over and over, even if there seems to be a break between those seizures.
When clusters of seizures caused Charley to be pushed over the edge mentally, he became agitated very easily and could not let go of the agitation, even if the problem that set him off was taken care of. He didn’t sleep well at night 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 what he was looking for. He took different things apart thinking that he was fixing them but actually ruined whatever he was “fixing” by being too aggressive when taking out or putting in parts and/or components to the item and broke them. As Charley’s seizures continued to torment him for longer periods, I became the enemy. He did not understand what was happening within his brain and could not control the anger that was created by having been robbed of a normal life. Though Charley loved me with all of his heart when clusters of seizures took over his mentality, he was unable to control his actions and/or words.
If you are the person who has seizures or a 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 and there are more and more solutions being brought forth to help both the person who has seizures and their caregiver.
