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!
I was diagnosed with temporal lobe seizures when I was a teenager. What you described is very similar to my experience ... with the aura as you sense the seizure coming on, followed by a period of disorientation and short-term memory loss. As I got older, I learned to sense them coming on, and at times felt as-if I could almost fight them back and prevent them from occurring in some instances, but maybe that was just me pretending I had more control over them than I actually did.
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.
For me, when I looked up online and saw my symptoms were pretty much exactly temporal lobe seizures, I went to see a doctor at the Mayo Clinic (I'd tried a local one but I had to see a normal doctor first before a referral to a more specific one and that process was not the best) and the Mayo doctor did an EEG, MRI, and pointed at the tumor that was causing the seizures.
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.
Something that you should know is that simple and complex partial seizures (also sometimes called focal seizures, or less formally "auras") like this can and do generalize into tonic-clonic (formerly: grand mal) seizures. You should definitely see a neurologist about this, ESPECIALLY if it's new and the frequency is increasing.
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!
As someone who has lived with complex partial temporal lobe (deja vouz) seizures my whole live, I'll throw in my (perhaps arguable) 2 cents: a neurologist will only be able to confirm to you what you already know. They will NOT be able to tell you whether your seizures "might evolve into grand mal seizures". Epilepsy is just too unpredictable and unique to each person.
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.
Not the same person, but someone with diagnosed epilepsy that seems to match the profile.
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.
I get deja vous feelings once a month or so, and I don't really like it... sometimes I'm not even sure if it really did happen before or not - 50+ times in a day sounds horrible!
I have partial temporal lobe seizures as well. My primary symptom, which is visible from the outside that is, is that I lose the ability to use language. If I try talking, it just becomes a mangled mess of words in English and Swedish. I also can not understand what other people say.
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.
Great point on being conscious and aware of it. For me the entire time, I knew something funky was going on, but I was wondering why. Like I said in the top comment, words and letters go in shambles, but I'm able to think and know that it was an odd event.
Former Epileptic (brain surgeries in '17) here. After I had two generalized seizures in my sleep (good thing I was living with someone at the time or I'd have never known) I met my local neurologist and was put on Depakote.
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.
Yeah. I had a similar experience. I only learned the small, random "blips" I was having was epilepsy after one finally evolved into a full-on seizure and I woke up to a bunch of paramedics standing over me. Unfortunately I denied it and refused to take medicine until I had another grand mal seizure and was injured really badly.
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.
Exactly with mine. The first times I had these I don't remember them, but the people around me did. Where I'd just tell them to hold on before I could understand them again. Took until I was getting them daily where the hit of the seizure was enough to be noticeable.
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.
I was having 10-30 a day for a while near the end there. Fortunately, my auras aren't very disruptive. No memory loss, no physical, emotional, or behavioral manifestations. I simply lose the ability to speak or understand language. It's a different story if they spread or generalize though.
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.
The interleaving of external and internal observation made this a very interesting read! Thank you for writing this.
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:
The last test before my lobeectomy was a SEEG surgery. (I had 11 electrodes 3"+ long shoved directly into my grey and white matter) The last part of the test is stimulation. They're applying stimulation at different voltages, amperage and frequencies to very specifically triangulated ares to be sure there aren't any cognitive, motor neural or autonomous functions in the parts they want to resect. I had to describe what I was seeing, feeling or hearing for each stimulation. It was absolutely bizarre. For instance, during one of the settings I had no muscle tone and struggled to lift my arm to point at the TV, another I had an increasing frequency sweep from one ear to the other. It was neat-o.
The symptoms described are a very typical presentation of partial seizures as well. Deja vu is a common symptom, but it heavily depends on which part of the brain the seizure occurs in.
Do you have the deja vu experience every time? I have noticed that I get that a lot when I'm stressed or sleep deprived. I always thought it was just som random brain event but could it be a symptom of some kind of disorder or damage that only surfaces during physical low points?
Some relevant detail that you learn only after having visited with lots of neurologists:
- 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.
It was a deja vu feeling every time, but also involved other things after, like the tingly arm and the word confusion. Also, I could tell there was a difference between the seizure deja vu and the "normal" deja vu. I don't want to be the one to say don't see a doctor because of it, but I had much more going on and had had those before.
Please. If you're having medical problems, consult a doctor. Don't let hacker news speculate a diagnosis like in this post.
And don't get a dog to detect your seizures.
Most people have no idea what the majority of seizures are like. I certainly didn't, but I wish I did. Most people (55%) unfortunately only go to the doctor after they have a grand mal, meanwhile they've likely been having partial seizures unknowingly for some period of time. Getting checked out early can halt or delay the process of epileptogenesis, which could hopefully result in no, or less severe seizures. https://en.wikipedia.org/wiki/Epileptogenesis
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)
I have no doubt that you meant well and have good intentions. Nonetheless, your comment is insulting to its audience. You are assuming people are too stupid to take care of themselves and need this advice. Please reconsider before making obvious suggestions that make assumptions about the targets intellect and ability to make their own decisions.
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.
I think you misunderstood jackschultz's post. They were encouraging people to seek medical treatment if they encounter symptoms similar to what jackschultz experienced.
Isn't that the point of the comment you're replying to? A phenomenon originally dismissed as just being an extreme version of something that happens to everyone, turns out to be something that a neurological consult was eventually needed to identify, that required prescription medication and that could have been prevented by getting that medication sooner?
Finding the right kind of mental health doctor without going bankrupt in America seems practically impossible for anyone except highly paid individuals.
Wow I thought this was normal. I've been experiencing this for years. It's not a frightening experience at all, and hasn't been getting worse. All kinds of odd pops, tingling sensations, and flashes of deja Vu. One time I had about 20 deja Vu experiences in the course of 10 minutes.
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!