Seizures. Epilepsy. Grand Mal Seizures. Tonic Clonic. Temporal Lobe Epilepsy. Nocturnal Seizures. All of these words were used to describe my condition my entire life. I’ve been in and out of hospitals and neurologist offices for the last 30 years but never had I heard “Seizure Clusters” to classify my seizures. I’m a research queen, but when this classification was brought to my attention, it sent the research into high gear. Where does this term come from and does this put more people in a new category and should we have an action plan specifically for it? Why isn’t my Health Care Provider telling me about this? Yep my gears are turning and my neurologist is about to have “Whit’s Hour” next visit. Let me explain.
Seizure clusters can be defined as acute repetitive seizures. These can be seizures of any kind. They usually happen closer together than normal, over a period of hours or days, and often rescue medicine is given. If the rescue medication does not work then it can in fact turn into a medical emergency. After finding all of this, my face was like really? *side-eye* Something came to me. I reached into my purse and grabbed my Clonazepam. The label reads Take one tablet by mouth twice a day during menstrual cycle and take one tablet as needed if multiple seizures occur. My HCP (Health Care Provider) gave me additional instructions to really monitor the seizure occurrences during this time and take the tranquilizer as needed even outside of the window. I wrote a blog on this matter a while back called Women, Hormones..Seizures?! Detailing the hormonal changes that causes an increase in seizures every month. See my neurologist never stated this could also be notated as “Seizure Clusters”.
My seizures are controlled with my normal self-care and meds. Watching out for common triggers, taking my regular medications daily, getting the adequate amount of sleep but the hormonal changes every month, that is one thing we have yet to conquer. With those monthly changes, comes the cluster of activity. See I have an entirely different recovery plan for these than I do from day to day. If I’m finding this out, and was completely unaware, how many others are? How many HCPs are misinforming or under-informing patients and caregivers? This needs to change. See he never mentioned there was actually a term for this. That even though my Temporal Lobe Epilepsy is well-managed and controlled, there is a possibility that a clustering effect may occur outside of that.
After combing through the March issue of Epilepsy & Behavior’s Perspectives on seizure clusters: Gaps in lexicon, awareness, and treatment, I found so much more intriguing information. The social media review of www.epilepsy.com, showed there are so many more like me with the same questions. More alarming, there is a huge disconnect between patients and HCPs. Its not brought up in medical appointments because there is no common term for “Seizure Clusters” between the two. We (the patients) may say “clusters” and they (the doctors) may say ” multiple seizures”. One of the main reasons for this is the term “Seizure Cluster” is not part of the International League Against Epilepsy (ILAE) Commission on Classification and Terminology.
As an Epilepsy Advocate and patient, it is part of my mission to learn more and fill the gap. On this Purple Day, get the facts. Know the difference between your “norm” seizures and ones that may occur outside of those. Approximately 175,000 people in the U.S. suffer from cluster seizures(www.clusterseizures.com) Just think, there are so many more that are undocumented. I always promote self-care and paying attention to your body. Above all, I promote being your own advocate and asking the right questions. If you feel like this is something you have been wanting to ask your doctor about then ask. If its something that sparked interest, then read up and ask. Just don’t go in there saying Whit said LOL! You have a right to know if you should have another action plan in place for seizure clusters that could possibly be causing you to lose sleep, miss work and feeling like something is just not right. Take control and work WITH your doctors.
Have an awesome day!