Is it normal for Simple-Complex Seizures to Change?

Hi, I have Left-Lobal Simple Complex Seizures controlled by Keppra XR and Lamictal XR. I want too share my review of my Long-Term EEG Testing and how I truly feel. On April 12, I went to the Epilepsy Center at Strong Memorial Hospital in Rochester, NY. They team hooked me up to a monitor with all different wires glued to my head to record all of my seizure activity. Then the put me into a private room with my wire-set to keep hold of with my red emergency button, the monitor with all the brain activity being recorded live, and a TV. Each time I have a small seizure or an aura, I press the event button and doctors will come in and ask me questions. My mother was with me the whole time because I am not fully independent. We did this interesting 5-7 day Longterm EEG monitoring process in hope to prevent the weekly looping seizures that have started since 2015. They do get stopped with PRNs (Klonopin). It took courage and strength to successfully sleep, think positive, keep my hopes up for another cluster to happen (although I had 10 days free of any looping seizures before), and not scratch my head. They also decided to lower my dosages to provoke a cluster but not bring the previous attacks now protected by my Keppra XR. The next a day, a chaplain came in and we both prayed for a cluster so the doctors can find ways of new medicine to stop them. Before I continue with the question, I need to explain all the differences between the old seizures I have had for over 25 years and the new looping cluster that started in 2015, so here they are: The symptoms I get from my Left-Lobal Simple Complex Seizure, which are protected with Kepprea XR and Lamical RX, will cause me to stare off, tremble, bite my cheek, drool, not speak, and end with deep sleep for an hour until I ask questions. I am unconscious from beginning to end but I get auras as a warning sign. The new "looping/cluster seizure" that started in 2015, are somewhat different. These cluster seizure bring no trembling, biting, or drooling but an odd and fast euphoria/dysphoria of something twisting my mind like a mental disorientation. There is still a De-Ja-Vu trigger word like my primary seizures but there is no aura and they mostly tend to happen when I am resting, over-excited, over-whelmed, exhausted, depressed, stressed, and worried. The seizure itself is done in 10-15 seconds and I am fully conscious to walk and get a PRN or text my mother "I had another one" in-between each one. Within minutes to seconds, that same symptom breaks out and another seizure happens. This process goes on and on, which is why we call them looping seizures. During these new looping seizures, I often stutter on sentences, get lost on a random word, speak or text random language, but still have perfect balance to walk to the next room and sing or talk in-between each episode. After around 30-50 of these continuous seizures, I become fully unconscious and must be awaken by an IV. I believe that these seizures can more difficult to monitor because the neurologists have to remember that I when pressed the event button, I pressed it 20 seconds after I had the seizure and I sometimes confuse them with "blocked" seizures that barely make it through but gets stopped by the meds. Luckily, we did have a small cluster of 15 seizures during the second night, so God answered our prayers. The cluster sensation was so intense for me (because they reduced my meds) and they happened so fast that I was able to recite the alphabet right as the nurses came in or say that I had another seizure. The next seizures all happened 3 minutes later and so forth with the other ones. After 15 of these looping seizures, which might have actually been breakthrough seizures as I was fully aware for 5-6 minutes instead of 1 minute before the next, they gave me an IV of Ativan which gave me a hallucination that lead to 2 more intense seizures. It was an odd but strange experience. I felt that if they kept going, I would be less conscious in-between as the time shortens up and become unresponsive for a while like the past ER visits though. Mom believes it was a full blown cluster but I still believe it was the start of a cluster and I wish they could have waited a bit longer as they were getting a bit stronger to the point where I don't remember what happened until I was driven home (or in the case, back in the bed). I fell asleep happy to hear the doctor's results, especially because he had them install extra electrodes above my left cheek because I have left-lobal seizures. When the neurologist arrived, he said the team and Him didn't find any good epileptic readings during that night. He still has a feeling these seizures are left-lobal because the most of the team members who monitored my brainwaves are the same team-members who watched my looping-clusters when I had them for the first time in 2015 during the emergency ER visit. They were left-lobal back then. What he did say next was quite shocking to us and it explains the title of this post. The doctors have a strong feeling that they are classified as anxiety seizures (Non-Epileptic Seizures) that can be controlled easier, which is very good (no MRIs or operations needed). During our talk, we all noticed that although they happen randomly without auras, they never ever occurred during a social actions with more people, they often occur when I think about past people or times that provoked my cluster seizures (they used to happen every Tuesday around 4 PM for a month) and that I can easily provoke the euphoria sensation myself by thinking of places where I had my last seizures while daydreaming about anxious or stressful times, they are Non-Epileptic-Seizures or Anxiety Seizure that will be controlled with the right anxiety meds. He said that he got what was needed for the EEG Monitoring and instead of giving it another try to see a bigger cluster like the ones from the past, the team unhooked me to go home. To everybody else, this was great news. To me, it felt confusing, unfair, frustrating, and stressful. How can a Non-Epilpectic Anxiety Seizure have similar effects as a Simple-Complex Left-Lobal Siezure? Here is what I see myself: Same Euphoria/Dysphoria, Same Day-Ja-Vu triggers, I get breakthroughs of both if I miss meds, and there is a loss of response in similar ways. I can see the Neurologists's proof here. The big difference I see? I have still been having these current cycles stopped by PRN in the past few months when I was not worried, stressed, angry, afraid, or upset. I have had them on a relaxing day alone (although there is so much on my mind) so to me, this seems to untrue...but it may be, which is why I am posting it here. In my opinion, if I waited another couple of days instead of getting the wires hooked off my head to spend the day home in tears, I knew for sure I would have the full-blown cluster cycle of 30-60 seizures and maybe even more if they did testing (don't forget that they did put extra electrodes on my left lobe to get a better reading). Why didn't the biggest seizures get good details with the extra additions? Only God knows. As they glued those extra wires, I was ready to hear what the doctors would say as they saw the unusual activity...but when they said they couldn't find any good details, it felt like getting a serious phone call about of a best friend's recent death. I feel a great opportunity was ruined and having a seizure each week really effects my life. I was excited to spends months without calling Mom each night that I am having a seizure. I spent the rest of the day crying with tears down my eyes. I said yes to this Long-term EEG monitoring expecting them to see some useful recordings during a full 30-60 seizure cluster which can lead up to useful methods to stop them with the new and better medication. My hopes didn't work out as I wanted them to but the rest of my family is happy. Starting this month, a psychiatrist will officially diagnose me with Anxiety Disorder. My Mom says I am anxious all the time and I agree at times but I still don't believe I still have anxiety seizures. Out of the millions of seizures I had in the past year, I once had a seizure at 2 AM in REM, I once had a Seizure during a fun walk to work in a happy mood, and I had a seizure while playing a fun game that takes skill. How could anxiety or stress be related to these? Before 2017, my seizure log had anxiety and stress as the cause of most seizures (other than the ones I just gave you) but we decided to take that out because the past neurologist told us that stress and anxiety may lead up to more seizures but they are not the main cause for me. I am too frustrated to add all of those details back in the log now. At times, I wish I was still there in the hospital room waiting for a bigger cluster with unresponsive frontal lobal actions like odd words, unfinished sentences, repetitive speech, etc. because not all of the symptoms happened during the 2 day visit, so I partially feel that the trip was a waste, which also explains why I am sad. If the neurologist could analyze my seizures properly, I feel that better meds could be provided with almost no trial and error. Sadly, that will not happen to me. I am hoping for better plans soon and we do have upcoming appointments for anxiety pills, but I have had past failures with them. Seizures and Anxiety really interfere with my daily living skills and I am sad and frustrated that I did not get what I wanted out of this EEG visit. It it good to know my family, my local epilepsy team, and my neurologist got what was needed. If I had to take the test again, I would do it during the start or middle of a phase where I have a seizure each day in a row (not during a phase of 10-20 days with no seizures). The team wouldn't have to lower the dosage, they might see much better results, and when having the looping/clusters seizures, the feeling would have been less intense. Having a seizure almost every week really effects my life. All in all, it is good that I am feeling better and I am happy that I am healthy, I still have my job, and that do not have a serious brain injury. Thank you for reading this and I hope you have a great day.