When they did occur, I'd find myself "detached" from whatever environment I'd been in, and then struggling to re-engage with those around me. Most-strange was that I found in some cases I'd not only forgotten memories but also feelings I'd had for others. Try re-learning that you love your girlfriend after a seizure.
I went through numerous EEGs, sleep-deprevation EEGs, MRIs and a slew of other tests and was able to regulate the seizures using medication. But it did impact my life. It prevented me from pursuing a career that required a clean bill of health despite having my condition under control with medication.
Later in life, when I was planning to have children, I worked with my doctor to reduce then eliminate my medication. Though there was no indication that it would cause a problem, it wasn't something I wanted to risk. I've been off of the medication for about 10 years and seizure-free for over 20 years - long enough where I've stopped keeping track.
I have no explanation for why I no longer have these seizures but I feel fortunate that it's something seemingly very much in my past.
The medication is a huge problem, considering how many side effects there are and trying to find the right one is so difficult. I've very jealous that you were able to get off the meds.
These types of medical problems seem so random and crazy things can happen. I always wonder what it'd be like if we had these problems 50 years in the future when the knowledge of seizures and medicine has made much more progress.
My wife started getting partial seizures much like during her second pregnancy and they culminated in a generalized tonic-clonic seizure. Her OB mis-diagnosed them as vasovagal syncopy, which is a very common phenomenon during pregnancy.
Based on getting a diagnosis it sounds like you've seen someone about this. Please, anyone out there who has similar symptoms, get it checked by a neurologist!
What a neurologist will do, at best, is give you an fMRI to pinpoint what part of you brain has "abormal activity". (I also have deja vous seizures, and in my case it was my right temporal lobe.) Which, as cool as that may be, is completely useless as far as fixing the problem. If your seizures aren't causing distress in your life, the neurologist will essentially just tell you to never drive or operate heavy machinery, and send you home.
If you do feel that your seizures are causing distress in your life, or might be putting you at risk of harm, then yes, you should definitely talk to a neurologist, because there are medications that may be able to help.
(I know what deja vous is like of course, I just have no idea how it fits in with any kind of seizure)
I've had, on occasion, days where I would experience 50+ déjà vus that felt like moments from some past, very vividd dream I had many years ago -- even if those moments came from a recent movie I had never seen before.
It's a very peculiar feeling to be conscious and fully aware of what is happening, but still completely lose such a fundamental part of my brain functions.
From there out I had complex partial seizures and would simply zone out for a minute, give or take. If I was around my girlfriend or coworkers I told them to let me know otherwise I'd have no idea that I'd had a seizure aside from occasionally peeing myself a bit. Incontinence regularly correlates with seizures.
I mentioned this elsewhere but there was one specific time that I was walking back down the street with coworkers, dropped my sandwich and kept walking. One of my buddies caught up to me, handed me my sandwich and that 30 sec. or so was just gone even though I kept walking down the sidewalk.
I was right temporal focal and have the pathology report on the hunks my surgeon cut out on my wall. The photo of my post op MRI with noticeably less brain on one side than the other is a great conversation starter.
My brain started malfunctioning about 6 months before that. I would get this sensation where I couldn't understand or produce language for 5-30 seconds at a time. It seemed innocuous enough, and people actually told me it was normal, that they forgot words all the time. I don't have any physical or emotional manifestations during those auras (small, partial seizures)
I wish I had gone to a doctor because they would have probably run an EEG and put me on epilepsy medication earlier. Medication can actually slow or halt the development of epilepsy. Unfortunately, these small seizures reinforce themselves over time (epileptogenesis) and your brain essentially learns to have seizures.
Temporal lobe seizures are interesting too because for me, it was just the word issues. I had one while riding a bike when I still didn't know what was going on, and I kept going being actively confused, like I knew something odd was going on with the word / thinking part of my brain, but nothing at all physical.
After I started medication, I continued to have seizures for a year, including one grand mal. Unfortunately, I was in the unlucky 30% group that doesn't respond to medication. I tried 2 drugs total, even at high doses.
All of the sudden, I stopped having them for 2 years. I got my confidence back. I could do anything - drink, drive (not at the same time lol), not sleep, handle stress. Nothing really phased me, I figured I was "cured". I took a minimal amount of medicine with no issues. Epilepsy can spontaneously go into remission for a lot of people.
Then one day, I had an aura, and just like that, it started up again. Daily auras and one grand mal. A higher dose of medicine did nothing. A year later, they suddenly went away again with no changes to lifestyle or medication.
I'm so confused why this is happening. No one can tell me. Normal brain scans (no tumors or other abnormalities thank god), abnormal but somewhat inconclusive EEG in regards to where they may be coming from. One pointed to left temporal lobe, another was somewhat inconclusive. No, they're not psychogenic.
Anyway, there are some really smart people doing epilepsy research, particularly with regards to cryptogenic focal epilepsy. I'm looking forward to the advances they'll make. Now, you can do minimally-invasive brain surgery via laser ablation which is pretty neat. I haven't gotten the full work-up for surgery, but I'm probably not a candidate since they don't like to operate on any part of the brain that has to do with language. I want to wait until some more research comes out. The autoimmune avenue looks possibly promising. They're doing a lot of genetics research as well. TBD.
I had something similar happen to me to: First, a feeling of doom and a strong headache on the left side of my head. Then a tickling sensation in my right hand, then numbness. Then, within minutes, I lost my words.
I could still think normally - for example I reasoned that it made sense that my right body side was affected since the left side of the brain, where the language area was located, controlled it. So everything else felt and functioned normal. When I found words and wanted to speak them, they were often switched up.
The human brain is fascinating. Have a look at this:
A review of 80 years of memories inducted by electrical brain stimulation http://gpe.ups-tlse.fr/memstim.php
>The patient reported hearing the theme music from film Star Wars, while at the same time "seeing birds" and feeling like "going through a tunnel."
- The accepted explanation seems to be that our brains have a seizure threshold. The idea is to try to keep your brain below it, and to not cause it to become lowered.
- Many (most?) folks with epilepsy have "triggers" or activities or situations that increase the likelihood of seizures. You would think of them as lowering your seizure threshold.
Stress and sleep deprivation are common triggers. Stereotypically, flashing lights are a trigger for folks with photosensitive epilepsy though you should be aware photosensitive epilepsy is quite rare compared to the overall incidence of epilepsy.
Convulsive seizures are also very dangerous, and often result in bodily injury, hospitalization, status epilepticus (a long lasting seizure which may result in brain damage), or SUDEP (sudden unexpected death in epilepsy)
Researcher Jacqueline French regarding delays in epilepsy diagnosis: https://www.youtube.com/watch?v=muPWaW-1Bqk
Open discussions of health issues and understanding that one is not alone can be both encouraging and directly helpful in pursuing a better diagnostic outcome.
That being said, I'm sure there are online forums for doctors out there like HN or StackExchange or Reddit with their own hilarious troll culture.
[1]: https://en.wikipedia.org/wiki/Sudden_unexpected_death_in_epi...
I also just want to note to people that seizures aren't always the kind that they're portrayed, with the person falling to the ground and shaking.
Couple years ago I had these events start which turned out to be partial temporal lobe seizures. I would get a big flash of deja vu, my right arm would tingle starting at the shoulder and creep down to my fingers for about a second, and then I'd get hit with a tiny thump in my head where for the next few minutes I couldn't comprehend. I could still think, and I was able to tell people I was talking to to hold on, and give me a little time before we could start talking again. I had one while reading for example and the words got completely meshed together, where the characters were combined in different orders and didn't look understandable at all. I was wondering why the hell I couldn't read, and eventually the words started coming back together.
The reason I'm saying this is that it took more a while to realize these are considered seizures. I didn't know what was going on and didn't think it was anything much until they started coming one a day and that thump getting a little bigger each time.
This kind of seizure was listed in the paper as one of the test subjects. Someone I know was the one to tell me that those events might be a seizure, and I don't know how much longer it'd have been for me to come to that realization on my own. So maybe me saying this can help someone else. That, or get a dog that can smell seizures like in the paper!