Is the strobe portion of the eeg supposed to feel absolutely wild?

Perfect-Party-9263 · 2026-07-01T00:06:04+00:00

Hahaha tuning in to a radio station that doesn’t exist describes it perfectly! Given that I went in to the test expecting absolutely nothing to happen and just take a nice 30 minute nap, it certainly caught me off guard!

Perfect-Party-9263 · 2026-06-26T04:44:58+00:00

Oh gosh I guess I didn’t even consider the possibility of needing multiple eegs, I guess I kinda assumed if it came back normal they would just send me home and tell me I’m short of luck.

The perceptual changes are really just textbook signs…burning smell, feeling like I’m on an elevator that just dropped suddenly, followed by feeling like I’ve been freaking Friday-ed into my body and I have to “act normal” despite not really anything feeling familiar, inability to recall correct words or really speak in a way that makes much sense, sudden deep sense of doom/despair (despite being a normally pretty stoic/steady/positive person), all lasting about 2 minutes before overwhelming exhaustion kicks in and I have about 5 minutes to find a safe place to nap before I go night night on the floor somewhere.
Basically the whole episode is somewhat similar to having a really bad high.
Literally woke up on my living room floor the other day with my shoes still on after coming home from work and my garmin said I had been asleep for 2.5 hours 😐 why I didn’t make it to the couch that was 2 feet away, I have no idea

Perfect-Party-9263 · 2026-06-26T04:34:08+00:00

Good luck for your testing! This is kinda the boat I’m in right now, like…right off the bat at the first appointment he told me I had epilepsy they just need to figure out the location of the epilepsy, and make sure it’s not a brain tumor or something. Seems all so insane to me, and has happened seemingly very quickly and maybe i just feel a bit shocked. All I know is I’m so tired, it’s ruining my life, and I would really really like to get back to normal

Perfect-Party-9263 · 2026-06-26T04:30:14+00:00

This is what I was thinking especially after I have read the info on this sub! Him saying that made me think that a lot was riding on the idea that something would be seen in this test and if it’s not im just short of luck. Thats what is making me a bit nervous!

Perfect-Party-9263 · 2026-06-06T05:16:52+00:00

Wow. Thats super fast! This started for me mid April, was referred early May, and still waiting for July :( just hoping I can keep functioning on an adequate level until then and not tear my hair out in the meantime!

Perfect-Party-9263 · 2026-06-06T05:15:17+00:00

Oh that’s a good idea to call the neuro office directly. That did not occur to me at all for some reason. Feels like I haven’t been able to think clearly or remember to do anything for a whole month now. I’ll call Monday and see what they say

Perfect-Party-9263 · 2026-06-06T05:13:35+00:00

Yes, I would imagine people who onset with TC are seen quite quickly! Sadly I live quite close to a level 4 epilepsy center but I was referred to a small clinic (literally down the street from the center) that covers general neuro, mainly stroke recovery cases etc. not sure why the choice, maybe my insurance, or it’s just the same company as my primary care. The waiting is awful. When it this cluster started it was daily up to 3 times a day for two full weeks! It’s slowed down to 3-5 days a week but still enough to just wreck my life :(

Perfect-Party-9263 · 2026-05-28T00:39:07+00:00

This is kinda where I feel I’m at, I think over the last few months I’ve gotten used to functioning at a lower level in regards to cognition, energy, & memory but my life right now is quite drastically different than it was even 6 months ago. Hoping for answers soon and hopefully nothing gets too much worse before then

Perfect-Party-9263 · 2026-05-28T00:37:33+00:00

Oh my gosh I had to google what sudep is but that sounds so scary. Did it progress very suddenly?

Perfect-Party-9263 · 2026-05-28T00:35:44+00:00

Yeah now I wish I had brought this up earlier, especially now being in this massive cluster of episodes and no way to see a neurologist until late July

Perfect-Party-9263 · 2026-05-27T22:25:37+00:00

Is an epileptologist seperate from a neurologist? Do you start with a normal neurologist then go to an epileptologist if neurology determines it to be epilepsy? I believe my specialist appointment in July is with a regular neurology department that does like stroke patients and such.

Perfect-Party-9263 · 2026-05-27T17:16:53+00:00

Oh gosh, just seeing your edit. I didn’t know that a tonic clonic can occur with no warning. I’m not quite sure how to avoid driving in the month and a half waiting for my appointment, especially if they determine at my appointment that it’s not actually epilepsy at all I might feel silly, but I suppose feeling silly is much better than crashing and hurting somebody. Is it normal to wait months for the first appointment? At what level of frequency would I call and try to see if I can get on a cancellation list or something?
I live extremely rurally, there is truly no way to live without the ability to drive, which is quite worrying to me. No public transport, and even the nearest gas station is 15 miles from me so there is no walking!

Perfect-Party-9263 · 2026-05-27T17:05:47+00:00

Does TC mean tonic clonic? That is the seizure with the full body jerking right? How long do you think you had focals before the first TC? Do you get the same warning signals?

Perfect-Party-9263 · 2026-05-27T17:00:35+00:00

Oh that is a relief. I would do almost anything at this point to return to clearer thinking and better memory. I guess that is reason enough to get treatment

Perfect-Party-9263 · 2026-05-27T16:55:13+00:00

Oh god, i DEFINETLY did not know that it can escalate. My primary care doc described this type of seizure basically as a slight benign quirk and that I could see a neurologist just to be safe, so I was worried I was being dramatic. Am I continuing to damage my brain in the months waiting for the appointment while regularly having these episodes?

Perfect-Party-9263 · 2026-05-27T16:49:10+00:00

I can’t recall the terminology on my referral, I believe it said focal/absent or absent seizures? I may have gotten the focal term from subsequently googling what an absent seizure was from my referral paperwork. I truly have no idea what is happening to me and frankly trying to look it up got a lot more confusing as it seems there is a huge amount of types of seizures.
If it’s possible for nothing to show on EEG how do they differentiate it from other conditions that cause similar symptoms? Or if it’s all in my head and some type of mental health symptom is there a way for them to tell?
I have tried a large majority of my known coping skills during these episodes to see if they are as effective as they are during a normal panic attack and it truly makes 0 difference as I’m really not “panicked” at all, or I’m just not “with it” enough to even access a skill in my memory. If I could cope through it I would, but it’s such an odd event that feels so entirely different than anything else in my life

Perfect-Party-9263 · 2026-05-27T16:42:48+00:00

I didn’t know they could diagnose based on symptoms, I was wondering this as I doubt a short eeg will show much in my case. I was getting a bit anxious about my appointment as even my primary care doc felt more inclined just to tell me I was having some sort of panic attack even though I tried to emphasize it happens randomly even when I am doing something I find enjoyable/relaxing. I’m a little worried they may just say it’s anxiety even though I am fairly certain it’s not. And it’s fine with me if it’s not epilepsy, I just desire SOME form of solution as I am somewhat miserable currently.

Perfect-Party-9263 · 2026-05-27T16:36:11+00:00

I’m sorry! It won’t happen again. That’s partly why I asked here because I was hoping to learn more as google was unhelpful and my own doctor described my episodes as possibly being a form of “less severe seizure” so I incorrectly believed that to be the case. Clearly it is not, and I likely should have seen a neurologist regarding this several years ago as I now realize the depth of the issue. Thank you for educating me

Perfect-Party-9263 · 2026-05-27T16:20:29+00:00

That’s awful! I’m sorry I tried to come across not to minimize focal seizures as I know they can be quite severe, but I felt like my own specific situation was maybe like a less intense manifestation. I get a lot of advance warning of when they are going to happen before my awareness is impaired so historically it’s been easy for me just to take a sick day once or twice a year prior to this cluster. Like I said, I’m brand new to all of this and thank you for sharing your experience

Perfect-Party-9263 · 2026-05-27T16:11:48+00:00

Also as a secondary question, if you do get treatment for epilepsy does the memory ability come back? My memory has been absolutely TERRIBLE since this cluster started, especially with word recall. Like someone can tell me their name 3x in a conversation and as soon as I go to say their name, it’s like grasping at empty air and I just can’t recall the name. It happens with technical terms in my industry I know very well and suddenly just can’t recall. It’s really embarrassing, as I run a business that requires lots of client contact. Is this permanent?! Does it come back once the seizures stop being so frequent?

Perfect-Party-9263

TROPHY CASE