I had two tonic-clonic (grand mal) seizures in October. I’m 45 and (to my knowledge) it was the first seizure I’ve had.
I was really goofy for a few days after the seizure and had a really powerful spiritual experience (I’ll describe it if anyone is interested). Has anyone else experienced postictal oddness?
I’ve read that postictal hallucinations are common in temporal lobe epilepsy; I have some upcoming testing to see if I have a DX of epilepsy (it could have been a drug-provoked or Serotonin syndrome seizure as well). My epileptic brother died during a seizure and I have a sister with absence/partial seizures – so who knows?
My dad developed epilepsy as an adult and says that when a seizure is about to come on, it feels like an overwhelming evil presence is in the room. Like satan himself is coming to kill him.
Yay! Okay, here’s the set-up: as above, you know that my brother died of epilepsy, this was about 5 years ago. 2 days after my seizures my favorite aunt, who had never had a seizure, died during a seizure.
The day after my seizures I was at home lying on the couch and started seeing a large black mass walking past the living room door, into the dining room, then up the stairs and back down to repeat the route. The mass “felt” like a loving amalgamation of my brother, aunt, grandma, and other people I’ve lost and this black thing was accompanied by an indescribable feeling of euphoria and peace. It seems like the mass paced back and forth and the incredible feelings lasted for hours (but I was dopey and had no concept of time). It was amazingly comforting and not scary at all. I don’t really have the right descriptors for the experience.
The mass eventually disappeared, but the euphoria lasted for a few days.
What drugs were you on prior to the seizure? What drugs were you on after the seizure?
A variety of ‘spiritual’ experiences have been reported by those experiencing seizures. Many others report a variety of experiences and emotions such as terrified, amused, aroused, hungry, out of body, out of mind, deja vu, jamais vu, presque vu, etc.
Good luck with your workup.
QtM, who has been paid to lecture health professionals on seizures and their diagnosis/treatment, and who also experienced partial complex seizures as an adolescent.
I’ve had partial complex seizures since I was in my 20s and I definitely experience a significant difference for days afterward. But my experience is very distinct from yours. First of all, it’s as though my emotion centers are turned off - I feel absolutely nothing, no matter happens, for about three days.
Second, my sense of taste and smell are either screwed up or gone.
Third, I might have a migraine afterward that last three days.
I also get a pre-seizure aura, and what’s fucked up about that is that I hear a Muppets song in my head that I can’t remember otherwise. If I remember that song, I know I’m about to have a seizure. It will even wake me up in the middle of the night.
QtM > Xanax and Prozac prior to the seizure, Ativan after the seizures. Changed to Tegretol and Klonopin last week. I was in the ninth week of the Prozac and it was killing me (agitated anxiety, wanted to rip my skin off), so the Xanax was to address that.
Hi Overly: I’ve just had the two seizures and the first one started in my sleep, so I don’t know if I had an aura. My sister has your type of seizures and she has some funky pre-seizure auras.
Oh no, not a Muppet song! I guess that beats out the Brady Bunch theme?
QtM> in your pro opinion, does having two seizures that were probably drug-provoked make future seizures more likely (esp given my family history)? Or can avoiding the “provokers” keep one seizure-free?
Chances are pretty fair it could be a provoked seizure then, and not epilepsy.
Hope it all works out.
Take what you can use from your post-ictal and post-post-ictal experiences, but don’t bet the farm on finding THE truth from a brain recently overactive and affected by multiple neuro/psychoactive drugs.
Yep, I figure it could be worse. It could be the Wiggles or something else my kids listen to (eldest is 6). I’d hate to have, “Fruit Salad/Yummy, Yummy,” going through my head every time something catastrophic was about to happen.
It’s funny, though, because while I wouldn’t wish my seizures on anyone (they’re excruciating for days afterward), they’ve made me a cheap date. I can’t remember most movies I’ve seen after I started having seizures in 1997. I’ll start watching something, insistent I’ve never seen it before, only to gradually recall bits and pieces as I watch. This doesn’t seem to apply to other memories - just movies and a couple of bits & pieces of other, pre-seizure memories here and there. Truthfully, I think having kids affected my memory more than my seizures.
Maybe your overall seizure threshold will be lowered a bit by the experience, but it’ll probably return to whatever your normal baseline was once the drugs are out of the system long enough.
Just MHO, somewhat educated on the topic but woefully lacking in vital details about your experience/situation, so take it for what it’s worth. Vague reassurances on the internet.
Jenn – Most definately… a very good friend of mine has temporal lobe epilepsy and experienced all kinds of postictal wierdness. He had surgery though, & hasn’t had siezures or wierdness either one for a couple years.
I wish I’ve had a religious experience. Never anything pleasant.
Mostly I feel really “out of it”, like I’m drunk. I have a huge headache when I first wake-up, like I can’t even move an inch. Then for a couple of days I’ll feel like everything is weird and unfamiliar. Even sometimes after smaller ones. Like one day I couldn’t talk – all I could do was stutter.
Your experience certainly sounds like an aura. I’ve had several over the past few years, and didn’t even realize they were seizures until earlier this year, when they started to progress to full-blown generalized seizures. In isolation, my auras have been of brief duration (never longer than a half-minute or so) but intensely emotional–in some aspects, bordering on spiritual. Typically, I experience a cascade of emotions: it starts with a dreamy, detached feeling (as though I’m recalling a long-forgotten memory or a dream, but it’s not a memory of a real past event or an actual dream); this is followed by a strong sense of euphoria–almost a disembodied feeling, which initially is actually quite pleasant; however, the euphoria suddenly dissipates and I’m gripped with panic, as I feel my consciousness slipping away and think that I’m about to die.
If it remains just an aura (a simple partial seizure), it’s about at that point that I recover, having convinced myself that I’m not dying and calmed myself down. In my generalized seizures, of course, I actually DO lose consciousness. I’ve had three tonic-clonic seizures since May of this year, each one progressively worse in its duration and symptoms (the first one was initially diagnosed by my doctor as an isolated incident of syncope), and started on medication after the third incident (when these incidents were diagnosed as seizures).
I haven’t had any auras since I started taking medication, but after the last seizure, it took me two or three weeks to really feel comfortable again, mentally and emotionally (and physically–when the seizure started, I apparently rolled out of bed and struck my head on a nightstand, and my arm muscles remained sore from the convulsions for a week or so afterward). My postictal mood was sort of hazy and pensive, if that makes any sense–not nearly as intensely emotional (and almost spiritual) as my auras have been, but during those weeks of my recovery, I reflected a great deal on issues of spirituality and the universe (and how I’m perceiving the universe through a set of–occasionally misfiring–electrical signals in my brain).
In reading up on epilepsy, I’ve come across lectures and interviews given by the neurologist V. S. Ramachandran (at UC San Diego), and he’s talked extensively about the spiritual experiences that some people with temporal lobe epilepsy undergo:
I have to say, my auras never quite attained the level of communion with God, but there has always been that transient feeling of euphoria in my auras–the one aspect of them that I’ve actually enjoyed, so much so that I almost regretted having to go on medications that would prevent them from happening. However, I of course accept such a prescription since the feelings of panic that follow the euphoric mood in my auras are NOT pleasant at all, and I don’t miss those feelings–and I’m certainly glad that (should the meds continue to do their job) I won’t be experiencing generalized, clonic-tonic seizures.
Incidentally, I’m 40 years old. The auras (as I recognize them, retroactively) started about four or five years ago (so, in my mid-30s), with nothing obviously precipitating them. I strongly suspect that the seizures originate in one of my temporal lobes, but MRIs and EEGs haven’t identified anything as the cause.
Oh, and I forgot to mention that, for some reason, the euphoric stage of my auras has almost always been accompanied with my recollection of a song by The Cure, “Plainsong” (- YouTube). It’s not an auditory hallucination, just a really powerful memory of the music, but my auras became predictable enough that as soon as I would recall this song (one of the many Cure songs I listened to, quite obsessively, in my high school years), I would think to myself: “Oh shit, it’s starting again.” A few seconds would follow of the happy, blissed-out dreaminess, and then, WHAM. The panic would set in, and I’m ready for it to end and just be all over with.
Somehow, as a signal for the onset of a seizure (simple or otherwise), it seems appropriate that this song is the opening track to the album Disintegration.
Okay, here’s the set-up: as above, you know that my brother died of epilepsy, this was about 5 years ago. 2 days after my seizures my favorite aunt, who had never had a seizure, died during a seizure.
