Community Forum Archive
Three day episodeThu, 01/23/2020 - 00:14
I'm 35 and have had absence seizures since I was a child. I was lucky that one was caught on my first EEG. It is managed with Lamictal and I haven't had one since 2017. But this weekend I had a different experience. It started while I was at an arcade. I grew terribly sleepy. While going home I heard a loud buzz that wasn't there. Then I remember nothing but small bits and pieces. I sort of came to on Sunday. It turns out I was on a sort of autopilot on Saturday. I can only remember tiny pieces. I couldn't talk. I couldn't figure out how to get food or actually take medicine. I apparently took my clothes off (weird) and stared into space unresponsive for most of the day. On Sunday I came too in the afternoon. But I kept missing words. Was confused and could barely take a shower. The worst part was a terrible deja Vu. It lasted ALL DAY and was completely overwhelming. I wasn't able to articulate what was happening. On Monday I was finally able to see my neurologist. She specializes in seizures and is highly regarded in the field. But she completely dismissed me. Said it was likely psychological. That I wasn't having a seizure at the moment. That it might have something to do with seasonal depression... (What??). Said that I might have just been tired and needed to catch up on my sleep... to be honest it was devastating that she wouldn't even consider what I was saying to be real. I have had 2 episodes almost exactly like this while a teenager. But she disregarded it and said I don't have any medical records from it so nothing she could do. Even though my sisters wrote their account. I kept pushing it. I know my body. This was neurological. So she ordered an eeg for the next day. I was told I would hear back within 24 hours. Nope. After I called them a nurse said my EEG showed spikes that prove I'm epileptic (yeah, we already knew that). I asked if I should schedule a follow-up so we can figure out a treatment plan. The doctor again was dismissive. She told the nurse to tell me that I wasn't having a full blown seizure during the Eeg... Didn't offer any sort of follow up or med change. I pushed it with the nurse who said the doctor was gone for the day but she would talk to her. I am scared it will happen again and cause permanent damage. From looking at studies people can have more than one form of epilepsy or it can change. I am beyond floored that I was just dismissed. I had taken time to write a timeline or my symptoms and have witnesses do the same. And I did a checklist of all my symptoms to help her pinpoint it... She acted like I am faking it for some bizarre reason. I'm scared and don't understand why it is like pulling teeth to get basic care from a neurologist who is highly regarded for treating seizures.
I have been researching
Submitted by sunshinedaydream77 on Fri, 2020-01-31 - 16:33
I have been researching strange seizures as I had one the other day. My neurologist was somewhat dismissive as well, but I insisted that I be seen after two doctors I had appointments with said it sounds like a seizure. (Nobody wants to take responsibility.) . I describe my experience in a post above.Perhaps consider contacting a specialist I have not been diagnosed, but I do have partial seizures in the right temporal lobe and research shows that seizure activity in this area is responsible for "strange seizures" that don't include any kind of jerking or convulsing. Good luck. (Also I am on lamotrigine)
Hi, Thank you for posting. We
Submitted by Anonymous on Thu, 2020-01-23 - 09:09
Hi, Thank you for posting. We understand this must be very upsetting and frustrating for you to experience, especially if you feel like your neurologist is not listening to you and dismissing your concerns. It's best that you follow-up with your healthcare team, (that you’re comfortable with) to review this further and if you continue to experience any changes in seizure types /frequency, side effects, symptoms, behaviors and moods, to determine what individual treatment plan is best for you. It can be challenging to find a healthcare team that you're comfortable with, but if you feel you can’t talk openly with your team or aren't working towards the same goals, it may be time to get a second opinion. For information regarding second opinions or assistance finding a specialist near you, please visit: https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist We are glad to hear that you and those around you have been taking time to help write down these new symptoms you describe. Keeping journal or diary such as My Seizure Diary, is a great tool for identifying and tracking seizures & triggers, record medical history, set reminders, manage medications, side effects, moods, behaviors, and personal experiences that may affect seizures and wellness, which can be shared with your healthcare team.https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diarySometimes it's helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find & give support to each other. Contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. Or contact our Epilepsy and Seizures 24/7 Helpline: epilepsy.com/helplinewhere trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, email@example.com.