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Suicidal ideation and seizures.
Epilepsy & Seizures | Last Active: Aug 30, 2021 | Replies (37)Comment receiving replies
Hi @jennsprung
Thank you so much for sharing this experience. How terrifying! Now I understand very well what you have meant in your first post. Thank God those experiences have become rare with this second medication you are taking. I am happy for you!!! Curious to know which medication is that! Can you tell us? Also interested to know how long do your simple partial seizures last. It is also great to hear that you have found a way to better handle the fear of those seizures. Congrats!!! Hope you can eliminate 100% of the déjà vu moments from your seizures in the near future!
My TLE is also on the left side. Most of my seizures evolve from simple partial/aura to complex partial, being my awareness impaired by then. This is why I have difficulties recalling the deja vu experience.
Sharing my TLE typical seizure. When a seizure starts, I feel as a movie I have already seen will start. In the past, I could also smell a strange odor, not anymore. I understand those moments as my auras. Very few times, I am able to interrupt this seizure process, by getting up and trying to do something different from what I was doing. My auras are quick, some very few seconds. During the aura I am still aware, being able to communicate with my hands (in the past I could speak, not anymore) and to move. That is all I can remember from my seizures since my awareness is then impaired. In the past, I recall that some seizures were pleasant, having a feeling of relief. Not anymore, they are not terrifying though. My husband says that in the complex seizure I stand still with wide-open eyes. Sometimes I have repeated chewing movements. With some AEDs I had complex motor seizures (repeated right arm movements) and strong contractures. Not anymore, Thank God! The whole experience lasts about 20-30 seconds nowadays (I understand it is reduced through the THC rescue spray I use). When I was in my thirties and forties (I am fifty now), I could go right back to my activities after such a seizure. Today I need some minutes to be able to speak again. I also get quite confused after a seizure, not knowing the day of the week, the time of the day, what I was doing before the seizure, etc. Seizures do steal a lot of my energy today, needing some time to rest afterward. With the usage of my current medication (pure CBD), my seizures have become softer and the recovery time has been reduced. With that I have been feeling more secure to leave home by myself, retaking some activities.
As you have written in your first post "Everyone experiences epilepsy in their own personal way".
Have a nice evening!
Santosha
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Hi @santosha
The trouble with providing the length of time they last is that they cluster together. For instance, which was a doozy, my husband was on the line with 911 for 11 minutes. All the while I was in and out, in and out. Then I had another couple while waiting to be seen. My sense of time is very distorted. I had another bad cluster where I lost about 8hours- I remember bits and pieces of the day but not much else, even though I was awake and answering questions the whole time. I know I wasn’t seizuring the whole time but my pupils were dilated and my speech was slurred, couldn’t walk a straight line either. I end up with Todd’s paralysis afterwards every time. It’s a real bummer.
With the first few I was on Topiramate. That was well before diagnosis as I was using it as prophylaxis for migraine disorder. Side effects were wicked bad though. I still think it odd that I was actually on an anti seizure drug before I was diagnosed with epilepsy and yet here I had it the whole time. The dr suspects I’ve had it most of my life but it was sub clinical before the last few years. I actually thought the Topiramate was the cause of the seizures and stopped it but that was me being super hopeful that I would never have another. I hoped that the diagnosis was wrong. I have come to accept it though.
I’m using oxcarbazapine now. It’s not so bad. Seems to have me mostly under control, and while there are side effects I honestly can’t tell if they are because of the drug or because of the diagnosis. I still have horrendous migraines, but I’m doing ok.
I’m pleased to hear that CBD/thc is working for you! It seems to be a big trigger for me. I haven’t touched it in 3 years now. I make a wicked topical pain cream from it though. Dunno where I would be without it!