Suicidal ideation and seizures.

Hi!

I have simple partials, left temporal lobe epilepsy, although my first one went into a complex partial so I don’t quite remember all of it.
I was 10 years trying to figure out a diagnosis. Initially I was diagnosed with chronic migraine with atypical aura (we used to laugh and call it “word seizures” because I would have massive difficulty trying to find words and put together reasonable sentences). I didn’t know there were different types of seizures.
Typically, it goes something like this:
I feel very unwell, enough to want to sit on the bathroom floor.
There is a really weird rising feeling in my stomach and chest. Kind of like I need to throw up, but not exactly. Like going over little hills in the car or being on a roller coaster.
It feels like something that has happened before. The most intense déjà vu you can imagine, but not happy floaty oh wow this is unusual type déjà vu- more like this is the moment you die and you are being forced to live through it over and over and over again type déjà vu. It goes in and out in waves. The first time I felt it I got really confused at first. Was it Sunday night, or a different day? Was I going to have to pack lunches for the kids or could I sleep in? Omg what day of the week is it? I can’t remember the day. I thought that I was having a stroke so I woke my husband and tried to ask what day it was. He couldn’t understand me (gibberish and bizarre cadence he says). He asked something about the kids and I forgot I had 3 of them. Like legit could not bring that information up in my mind. He called paramedics, and everything he was saying to the operator I knew he was going to say (déjà vu again) but somehow I thought it wasn’t supposed to be him talking, it was supposed to be my dad (no idea what to call that). It was like a memory playing out in front of me but all the wrong players were there. He brought me downstairs and then yet another round hit me, but it hit with ABSOLUTE terror. This is the moment that I die. I heard my daughter call for me. (Still feel horrible guilt over that part the kids were awakened by the noise and terrified too). I kept getting stuck in the loop, and at one point saying no over and over again. It for sure hits on my fear centre. I saw stars for a bit at the end of that round, woke up a bit and kept saying over and over that “I’ve dreamt this before…”
When I got to the hospital I had another few smaller rounds. “I’ve been here before” Nope. Never been to that hospital.
“Tonight is the night we get VERY bad news” Nope. They thought I was tripping (I don’t do drugs) It is always the same pattern of feeling ill, deja vu, fear/sheer terror, then when it’s over I get tearful. I know it’s run it’s course when I start to cry.
It took me 3 months to even explain what the heck went on in there because I thought I was surely having psychosis. But when I did find the words for it the migraine neuro was completely matter of fact and said that’s a simple partial. I still get goosebumps thinking about how messed up it is.
I’ve had many more in the past 3 years. I hate them.
I have gotten slightly better at handling the fear part by attempting to count my way through them, and the strangest part is that I only seem to hear what I want to hear during them. I make up my own dialogue. I swear that my husband keeps saying “it’s ok we know what it is now” all though he apparently never says this 😂. I have no idea if any of this makes sense but there you go!

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

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!

@santosha
Good grief another senior moment. At least I like to think their senior moments but in reality they’re more like senior hours. anyway it finally thank you and you were asking me a question and what I mean by “wonder.” i’m going to blame the spellchecker for changing wander to wonder. So I was wondering do you have during your Focal Impaired (complex partials) you go out wandering or walking around during your seizures. I had one at the Grand Canyon and still think about if it hadn’t been for someone guiding me away from the Canyon if I would have walked off the edge. My guess is that I would have since I had another one while I was driving. My mom managed to get the car stopped and I crawled over the top of her and out the passenger door and walked onto the highway. I’d much rather have a Tonic-Clonic, at least with those your down & out.
Later,
Jake

Hi @jennsprung
Now I got it, your seizures used to cluster together. UAU, 8 hours if a cluster of seizures. This must have been a pretty bad experience for you!!!. Happy that Oxcarbazepine is working well for you. Another contact of mine also takes the same medication (he also has TLE) and has well-adapted to it. I have tried Oxcarbazepine, but unfortunately, it did not work for me, it has greatly dropped my sodium levels.
So if I have understood you correctly, you have tried CBD before, but it has triggered some seizures, right? I am sorry to hear that but happy you can use it as a cream. I also use CBD cream for migraines (also from Farma USA), helping much. Attached some pictures.
Have a nice weekend!
Santosha

@jakedduck1
Hi Jake,
No problem, spell-checkers do sometimes change words we did not want to change.
Thank God someone guided you during this wandering in the Grand Canyon and that your mother could stop your car!
During my complex focal seizures, I usually stand still, not walking around. However, this contact of mine who also has TLE has shared with me that in some seizures he has wandered around (before being diagnosed with epilepsy and starting with medication). In one experience, he told me he was driving and when got aware again he could not tell where he was.
You see, the same type of epilepsy, but different seizure experiences.
Have a nice evening!
Santosha

Hi @jennsprung

Just sharing an interesting document from Mayo Clinic that I found on TLE symptoms. It explains well the difference between aura/simple seizure and complex seizure.

Santosha