u/Far_Wrap_7131

Dx Focal Epilepsy, seems to be deep in the brain (neuro suspects insular cortex or ACC) but when it spreads it's very similar to right sided TLE.

I'm taking Lamotrigine 100mg twice a day.

The seizures I get where I'm awake and aware are always ictal fear, "deja vu" that lasts minutes, and a metallic taste/smell. It doesn't usually turn TC but it has before.

After the EMU stay & medication, I'm just getting a lot of small deja vus, but I don't know if they're normal or brief tiny seizures/auras(?)

How are people able to tell?

These "mini deja vus" only last about 3 seconds and are accompanied by a similar dreadful fear, I feel the room spinning for a second, that "oh no" feeling, but then it quickly goes away. So I'm thinking it may be the normal deja vu??

Unsure if to bring up to my neuro, it's only been about 2 weeks of taking the meds, so. I understand it may take time for the full effects/benefits to kick in.

Dx Focal Epilepsy, seems to be deep in the brain (neuro suspects insular cortex or ACC) but when it spreads it's very similar to right sided TLE.

I'm taking Lamotrigine 100mg twice a day.

The seizures I get where I'm awake and aware are always ictal fear, "deja vu" that lasts minutes, and a metallic taste/smell. It doesn't usually turn TC but it has before.

After the EMU stay & medication, I'm just getting a lot of small deja vus, but I don't know if they're normal or brief tiny seizures/auras(?)

How are people able to tell?

These "mini deja vus" only last about 3 seconds and are accompanied by a similar dreadful fear, I feel the room spinning for a second, that "oh no" feeling, but then it quickly goes away. So I'm thinking it may be the normal deja vu??

Unsure if to bring up to my neuro, it's only been about 2 weeks of taking the meds, so. I understand it may take time for the full effects/benefits to kick in.

i don’t like saying it, but I‘m F under 30 yrs of age, somewhat physically fit. I’m so tired of feeling dismissed by doctors… I understand they have to go by statistics and at risk demographics, but I’m so tired of not fitting their idea of what a disabled person looks like 🫩

started since I was a teen, taking antidepressants to not end it all diagnosed with chronic depression, and getting questioned by doctors of “how could someone so young need those.“

then, a few years ago I got diagnosed with mild sleep apnea. no risk factors for it, young, slim, active enough. whatever. symptoms did not improve with cpap but did make these weird “””panic attacks “” ive been getting for a few years now go mostly away.. (deja vu, panic/cosmic dread, metal taste/smell, 2 minute episodes.)

then, get a neuro telling me I might have narcolepsy. get tested, turns out I do. big shocker to me despite lifelong struggles with wakefulness and the classic sleep paralysis, hallucinations, vivid lucid dreams/nightmares, etc. awesome. validating. nvm the several doctors that raised eyebrows at me as if it was a self diagnosis and not neurologist giving it.

next, come to find out talking to my psych, my panic attacks sound neurological in their symptoms and very atypical. talk to my doc, mentions partial seizures line up a lot with my symtpoms. work on diagnostic build up. see a few neuros.

bring up to the neuros the narcolepsy diagnosis, reasoning that maybe the symptoms better line up with a sleep disorder? just trying to get information and help detangle any confusions with comorbiditities /avoid misdiagnosis.

get told a million times I am much too young and how unlikely it is to have narcolepsy statistically speaking, as well as seizures, let alone comorbidity mix alongside mild sleep apnea. they refuse to give me anti seizure meds. fine with me as I am not keen on over medication, much less without a diagnosis.

i get dismissed so often, get reminded how rare it is to have x y thing, how I am much too young, how I am out of the risk demographics and it is just too statistically rare for this to happen to me, just dismissed as a hypochondriac despite never knowing this could have been a thing if it wasn’t for my doctors raising red flags.

i go ahead and stop exploring seizure possibilities. I don’t do an EMU. I just go in living life and focus on treating the narcolepsy and sleep apnea.

two months later, boom. witnessed nocturnal seizure, tonic clonic. I do not get taken seriously until after my partner speaks up due to being all freaked out after seeing me have a seizure. I get treated skeptically, but my partner is heard and slowly appointments start rolling in. still get treated with a slight eyebrow raise because “what are the odds??”. waiting game. fine by me.

then, boom, another seizure. just last week, get my typical atypical “panic attacks” deja vu, metal taste, but add blacking out. managed to call my partner just before and screen recorded, my awareness fading just after I clicked the record button and set the phone at the right angle. finally got video proof of a fucking seizure. stiffening, rhythmic movements, busted my face pretty bad.

send to neuro, backtracks on decision to not medicate me, expedites EMU stay for next month and the fastest neuro appt I‘ve ever received in this entire process. all on a whim since I managed to record myself - that I did while feeling entirely ridiculous and like I was just being dramatic & extra.

yeah, trust your gut, folks. Self advocate to hell and back.

I had seen focal seizures can progress into generalized, but I was banking on just being a silly dramatic woman as per the treatment of multiple doctors. feels like my brain just got worse due to not being heard/taken seriously. The worst feeling is now that I don’t live alone but did not so long ago, is realizing I’ve felt That post ictal eerie confusing state before a few times. i would have never guessed if it wasn’t for others + video proof - that I have been having seizures.

just had another TC seizure last friday. i’m a bit peeved since I had been getting these “panic attacks” for a few years now.. and only last year did a new doctor told me they sounded like partial seizures.

started doing the diagnostic workup, clean EEGs and a brain MRI. Neurologists made me feel like I was being dramatic/a hypochondriac & jumping to conclusions/self diagnosing like everyone online. I scheduled an EMU stay but felt so dismissed and disheartened that I cancelled it. the neurologist even refused to give me meds even if I am not keen on meds without a diagnosis- the sentiment was loud and clear.

not even two months later, I get a witnessed nocturnal tonic clonic. EEGs a week later, clean.
no more driving, steps taken for better sleep and less stress. That was in april, been pretty smooth sailing- till last week.

Had a very stressful night followed by poor sleep two nights in a row, then friday morning, I’m home alone and I get my typical “weird panic attacks” with the deja vu, stomach drop- etc. i call my partner through vid call for company, feeling like I was being dramatic- I screen recorded, went to The front of the house and waited for it to pass.

Wake up in a panic, with a neighbor and my partner already at home- letting me know I just had another seizure. Thank god the steps I took saved my life, despite initially feeling like I was just being dramatic. 🫠 now I’m on keppra, after hearing all the horror stories. I don’t know what to feel. I feel dismissed and upset. my “just panic attacks” seizures.

also busted my face pretty bad, mainly my eye. It looks like someone socket me in the face lol.

So, I got another sleep study, just the psg this time. My neuro told me it was to check if the OSA dental device could help me since my apnea is moderate/mild. Suddenly the psg showed less than the sleep apnea diagnostic criteria. so.. yay? no apnea? just nt2?

Despite using the cpap religiously for about a year & a half, of course my narcolepsy wont go away, but I can function soooo much better if I use the cpap. Really lessens the sleep paralysis, hallucinations, fragmented sleep, etc. I'm upset to suddenly not have this covered. Has anyone been through this?

I wake up with horrible migraines and overall every narcolepsy symptom is 10x worse. I still struggle even with cpap, but it's less dangerous in how the sleep attacks come on, and the sleep paralysis & the like mainly happen during my short daytime naps so my nighttime sleep is much better with it.

Anyone else been through this?? Now I can't have neither the dental device for the apnea, nor the cpap.

I had read about a connection with narcolepsy & its neurological culprit (orexin?) that seems to be responsible for the jaw area collapsing/paralyzing during REM & how that could be why sleep apnea rates are higher in the narcolepsy population than the general public. So, I'm thinking it's that?

I've always mainly only had hypopneas, so to me that checks out given it's shallow breathing instead of a central brain issue - but even with chinstraps or sleeping sideways, even with cpap as my mouth falls wide open and air escapes (still best option I've had) I'm struggling. I figured the dental device would've been perfect alongside the testing and having my insurance cover it. But no chance now, I suppose.

(nt2) wondering how many of us experience this?

I mainly get lucid nightmares in nights where my body is uncomfortable and I get stuck in this loop of almost waking up (& if I do wake up, it’s into sleep paralysis) or it‘s this state where I have blips of awareness of my surroundings before being sucked back into a dream where the moment I become lucid, it’s like my mind kicks into “oh I can make this scary asf and show you the most deprived evil shit imaginable” & just 😭😭😭

then it feels like I’m trying to force myself awake before the nightmare keeps getting scarier, it feels like a bomb going off in my ears with upsetting imagery & then I either get the paralysis for a bit or wake up into a racing heart & borderline panic attack.

tips? anyone relate? 😭

(nt2) wondering who else struggles this way-

I am in a constant juggling of too sleepy or too much energy. I take my meds, time my coffee intake, and then take more meds midday bc otherwise I cannot survive.

Sometimes the energy spikes are wayy too much to handle, and I HAVE to move around (mainly when I’ve had too much caffeine overlap with my provigil) so I’m used to feeling it and quickly standing up to put the excess energy somewhere else before it turns into a panic attack.

Yet occasionally, instead of my usual sleep attacks where I drift off without realizing, I will instead feel this surge of anxiety/borderline panic. I’m only able to tell the difference when I get up and realize that I feel exhausted instead of the zoomies. But it will be so uncomfortable 😭 like I thought it was an energy spike but as soon as I move I feel like I’ve ran a marathon and am about to collapse. I will feel my heart pounding yet the only thing that helps is passing tf out

Can anyone relate? any tips to manage?

lmao I have been dealing with suspected focal seizures for a while now without knowing.. On my attempts to get tested and find some answers my primary doc (the one that told me about partial seizures) has been the only one to take me seriously 💀 an epileptologist also brushed me off since I wasn’t losing awareness during them & a 24hr eeg came out clean/inconclusive as I had no attacks

Had a longer study lined up but it entailed a week off of work, and coupled with how discouraged I felt after the epilepsy doc, as well as learning only 20% of simple partials may get picked up by the eeg- I saw it as a huge waste of time since it seemed like the odds were stacked against me.

I was feeling stupid and decided maybe it was nothing and maybe I’m just some hypochondriac, since that’s how that doc made me feel. After cancelling the study I had a grand mal seizure a month later witnessed by my partner.

now I gotta go for more eegs, already got prescribed keppra, can’t drive for however long, and while I feel slightly vindicated in the worst way possible- I’m hesitant about getting more eegs 🙃

I have a buddy with epilepsy that gets more tonic clonics than anything, and even for him having such a well recognized presentation, it took him over four different standard eegs 1hr/24hrs & TWO 5 day EMU stays, only the last one finally catching a seizure on the 4th day 💀

idk how to still not feel discouraged. considering how it seems to be a hit or miss with those tests. I feel like nothing will show and I will keep having to advocate while being treated like a hypochondriac liar. gr8

were you taken seriously before getting a tonic clonic? for how long did you deal with simple partials before that? do you still deal with the simple partials/auras, or did it progress and only get worse?

any tips on how to be heard? pretty certain I may have been dealing with simple partials for a while now… but only recently did I get a (witnessed) tonic clonic. my first, I believe; it was nocturnal. I do wonder though; that pain and confusion I felt upon waking, I’m quite certain I’ve felt it before.. Waiting to see a neuro in a few days. feeling a little lost rn and afraid to get dismissed, seeing how often it happens here.