Loss of sync in epilepsy

General
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I have temporal lobe epilepsy that is focal and has cognitive effects like a deja vu so strong it feels like you’re trapped in a time loop, and smelling things that aren’t there, they’re part of a memory of an experience without context. Bread baking smelled great, but when it happened in the parking lot at work where there was no way it was real. Then I was listening to the radio on the way to work and a song by Journey came on and I started crying. Then I remembered I hate Journey and made an appointment with my doctor :joy:

When I finally had a video EEG done, it showed that part of my left temporal lobe was occasionally out of sync with the rest of the brain, a common interictal effect. That causes aphasia, and stuttering and stammering have a similar cause.

The much worse effect was that the temporal lobes are part of language, and I lost the ability to understand software languages, which was the end of my IT career, along with mild ‘word search’ aphasia. With software it was very confusing because I knew the words, but they made no sense combined together. I always thought that like ‘music is a language’, ‘software language’ was a metaphor. I can assure you it’s not.

That was 2017 and in 2023 I needed to try to fix something on my server and was ready to struggle, to my surprise I opened the file and understood it. Way too late to go back to IT. Temporal lobe seizures and migraines are related and occur in different layers of the cortex.They appear to be triggered, but they are aggravated by stress lowering the threshold for their occurrence. Auras are part of the seizure or migraine not a warning it’s about to happen. Migraines are a patch of oxygen deprivation that moves over the cortex and ‘visual migraines’ happen when that patch is in the occipital lobes.

The pain of a migraine is like phantom limb and tinnitus, it’s a loud alarm that part of the brain/nervous system is ‘not answering’. In tinnitus the frequency you hear is the region in the cochlea that detects the frequency where the nerve cells have died. Hearing aids amplify those frequencies to compensate for the loss. Interestingly, mindfulness can’t turn it off, but it can turn it down and put it in the background. I have been a musician since dirt was new and religiously wore hearing protection playing gigs, going to clubs, and using tools. Lipitor is ototoxic, and it gave me tinnitus. Because of previous ‘rare side effects’ I looked up the latest prescription and got off it before it was intolerable.

The stress of dealing with the corporate IT world and incompetent management was setting off seizures nearly every day, which led to the loss of sync and mild cognitive impairment, so it wasn’t all bad news because at least I wouldn’t be tempted to go back to that hellhole.

I probably have better idea of how brains malfunction than how they don’t :joy:

But brain waves are definitely either the mechanism or the byproduct of the synchronization of the parts of the brain.

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First of all, this immensely sucks, and I’m really sorry that you have to go through this.

Second of all, while reading your post I started to wonder: might it be that whatever we perceive, in this case different brain wave patterns, is simply a manifestation of something deeper, that we don’t necessarily see or look for, or know how to look for? An obvious example in this case would be connectivity, but another not so obvious would be neurochemistry, i.e. particularities of the neurochemical balance and/or sensitivity levels within a certain area; or maybe it’s even several things at once, and we don’t necessarily know which ones. But that’s just a train of thought in the moment, I haven’t read about this and I’m not qualified to weigh in on this whatsoever

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Thank you☺️

I’ve been traveling on the Oregon Coast in an RV from the 80s with my cat since 2020 when my SSDI was approved. I’m having a blast😄 I gutted the interior and customized it to my needs, and it has solar to run the fridge. I’m upgrading the rear end, the rear springs, and replacing all the front end parts that move in a couple weeks. I grew up in 60s rural poverty without a phone or electricity. This is leisure time. If I didn’t have the pile of skills I’ve accumulated I would stayed in an apartment, because rebuilding a differential is $300 in parts and $3000 in labor. Same with the front end, $400 parts $2200 for labor.

So I’m free to go wherever I want, and in the modern world I can be on the beach drinking a beer and typing this (I have gastritis and can’t drink, but I would be😊)

I can’t express how it good it feels to be conversing with people who can ‘understand the words coming out of my mouth’. I’m one of those ‘Good Will Hunting’ outliers, and I rarely got this opportunity, even working in IT. I went to Dim Sum with a friend and met his brother’s husband who has the same type of epilepsy but it was near the area where arithmetic is done. He couldn’t do math, but he could still do Calculus because Calculus is language. I had been following Jeff’s work and pestering rhyolight on Twitter, so of course I started to talk about it and he rightfully said AI as we had it was bullshit, so I gave him a quick overview, he commented, and we looked at each other and at the exact same time we both said, “You can understand me.’ And the rest of the table burst into laughter.

That’s pretty close to this so far. I don’t get lonely, but not having people I can talk with who ‘get what I’m saying’ is really hard. I was never able to afford to go to college, and oddly when I worked as a dishwasher people were more accepting and thought I was just eccentric and quirky. IT is full of people who hate to be wrong, and who usually are wrong about things outside of programming. So that’s awkward. But everyone here is willing to be absolutely wrong, and try to see where they got off course. The brainstorming sessions are must watch TV for me. I love watching everyone’s faces when they’re thinking about what someone is saying.

When a post got moved from general to theory I almost cried. Gabby gabba, hey hey, we respect you, one of us, one of us.:grinning_face_with_smiling_eyes:

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“Zen and the Art of RV Maintenance” FTW!

Your discussion of the interior view of your brain function reminded me of a rather cool TED talk: My stroke of insight | Jill Bolte Taylor | TED.

Jill Bolte Taylor got a research opportunity few brain scientists would wish for: She had a massive stroke, and watched as her brain functions – motion, speech, self-awareness – shut down one by one. An astonishing story.

One of the best parts is how she used the working parts of her brain to perform a task (dialing a phone for help) that would normally be handled by the disabled parts.

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That’s a wild TED Talk.

I also have a variant of DID, which is a strange world all it’s own. My therapist commented that my meta-cognition has meta-cognition.:joy::joy:

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@evanuno Cool post!

I always find it interesting when researchers perform research from within their own minds, especially when they have some cognitive variation that gives them unique insight. I think I remember at least one neuroscientist who had a stroke and had the impulse to study her own reaction instead of immediately calling for 911.

I myself have started to experience some cognitive impacts which have impacted my research in interesting ways. I’ve developed fibromyalgia the past few years which strongly effects your peripheral nervous system with chronic pain. At least for me, if feels like “my whole body is a sunburn.” This pain can be managed to a degree.

The other part that can’t be managed well is something called “brain fog”. For the longest time, I wasn’t certain that I had this as a symptom, but I can now recognize and attribute it to a number of difficulties I’ve been experiencing over the years. I think it can be generally be characterized as a “narrowing of attention”. I don’t have the spatial awareness, the physical coordination, the short-term memory, or the fast memory recall I used to have. I can operate like I used to, but I have to do it much slower. Also my daily experience feels very “dreamy”, as if I’m living my life in a dream. It’s very weird.

A common symptom that is most frustrating is recalling specific words I want to use when speaking. I know the word exists, but it seems like the act of seeking it deliberating inhibits its recall. So I’m forced to use a word that is adjacent to its meaning which actually is recalled quite easily. I have no idea why it happens this way. The same pathology occurs when trying to remember celebrity names (even very familiar and popular ones). The name doesn’t come, but a number of other names pop up in my mind that either sound similar or are in the same class of celebrity.

I think this latter behavior is one of the most interesting and I’d like to understand what is happening at some point.

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@jacobeverist An acquaintance with fibro noticed his cognitive symptoms seemed similar to ADHD, so he went to get tested, and ended up with an ADHD diagnosis. He started taking lisdexamfetamine, and said it helped mitigating the brain fog. Maybe worth looking into.

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I remembered the name of the abnormal waveforms. Interictal Epiletiform Discharge. If you search for that there’s a bunch of research related to the effects. They are short bursts of ‘noise’ and one term they used for it was ‘irritated brain’.

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It’s anomic aphasia. I still have a smidge of it. Mine was caused by focal epilepsy, which has no obvious seizures. The left temporal and parietal lobes deal with language, and that’s the most common area for focal seizures. Focal seizures also cause brain fog after and between. “Dreamy States” is a symptom too, sometimes called “spells”. Get a referral to a neurologist. There’s other possibilities, but TLE is pretty common and easily treated. Time to take your neurons in for a checkup.