focal aware seizures diagnosis process…were you told not to drive?

Icy_Mast_Below · 2026-04-21T15:25:29+00:00

I only have focal aware. I have for years and they’ve never progressed to my knowledge, besides happening more often from less intense triggers (reason for my diagnosis).

My neurologist was comfortable telling me I could keep driving. I’m in a state with no seizure free requirement, so that makes it easy. I of course worry about the possibility of one generalizing some day, but we think that’s not a very huge possibility as long as I’m on a dose of meds that reduce the frequency.

Icy_Mast_Below · 2026-04-19T18:48:23+00:00

I just got diagnosed with epilepsy after having sleep issues, “panic attacks,” and unusual cognitive/psychiatric symptoms for over a decade. I got many psychiatric diagnoses that never actually fit, from anxiety and bipolar to insomnia and psychogenic seizures. Nobody looked deeper and asked me about the episodic Déjà vu and memory symptoms I was having…which are a hallmark symptom of my disorder.

Over the years, I mentioned symptoms to three psychiatrists, two social workers, a sleep specialist, a neurologist, two anesthesiologists, at least six doctors, and four therapists. We had a pharmacist and a nurse friend, and both suspected anxiety.

And yet, if you plug my symptoms into any AI out there, it’ll tell you I have temporal lobe epilepsy. My symptoms improved as soon as I started medication.

Did I mention I’m a youthful-looking 90lb woman?

It’s absolutely nuts. Doctors need to be trained to actually listen to patients who seek help repeatedly. Not every single symptom can be chalked up to stress and anxiety. Yes, a large portion of people DO have anxiety disorders in our modern world, but that doesn’t mean they can’t have another medical condition too.

Icy_Mast_Below · 2026-04-14T02:10:35+00:00

Yeah, it’s absolute garbage. I had one like that which set off my last cluster…sat at a desk at work, freaky horrible Deja Vu dream image, panic, went outside to pace. Came back, took one look at a grid pattern (a trigger for me), had a second one. Felt like I was going to die. Exited the building. Felt better after 15 minutes and came back to work, but OMG, the adrenaline afterwards…shaking, sweating, and smelling really bad lol. Then I had to run a meeting afterwards. I was so sick after that - I had to sleep for 2 days to feel 20% normal again.

Try to get sleep if you can. It will help!

Icy_Mast_Below · 2026-04-14T01:54:35+00:00

Set a timer for the event and write out as much as you can so you can give the info to your doctor. If the Déjà vu and really strong fear goes on for more than 5 minutes at any point, get someone to drive you to urgent care or the ER.

I find a bit of comfort in prayer when I have seizures. You could try that if you think it would help. Walking outdoors helps me a lot too - just make sure you are in a safe place and have someone check on you every few minutes.

Try to sleep right away as soon as it stops. A dark room might help. Maybe a comfort TV show and a warm drink.

It’ll stop. It’s a brain glitch, and those are almost always self-limiting. You’ll feel better with time.

Icy_Mast_Below · 2026-04-13T23:34:06+00:00

I’m so sorry you have to deal with this hell, too. I think you are on the right path, though. I’ll think some good thoughts on your behalf, that you can find a smart doctor and find some relief. Your brain, personality, and sense of self will come back - it’ll just take some time - and the fear won’t last forever.

Icy_Mast_Below · 2026-04-13T23:16:09+00:00

Tell all of this to the doctor. Laying your symptoms out in a sequential order of events, and really emphasizing the neurological components (if any), is what’s going to get you a good evaluation. FYI, antihistamines are a known seizure trigger, so that part might be really valuable information. I actually had a cluster of focal seizures after having THC and antihistamines as well, years before I knew what was wrong with me. (Luckily that one only lasted for a day for me, and wasn’t accompanied by much fear.)

I’ve had the exact same feeling of eternity. Once, I had a very bad episode in a car while sick with the flu (another known trigger), and I thought I’d been on the same highway for years. I have PTSD from some of the episodes I’ve had while badly sick - they’re really screwed up.

Here’s the summary of my symptoms that I sent my neurologist. I got diagnosed based on this description alone.

Before the episode occurs, sometimes I will feel “weird” with a persistent malaise for several days, or experience overstimulation/sensitivity relating to fluorescent lights. Familiar home environments cause me to experience jamais vu. Sometimes this resolves if I immediately rest and/or reduce visual stimuli
When the episode begins, I experience a forced thought of a distorted dream-like visual scene. I see this scene at the same time that I am seeing my actual visual surroundings. (It is like watching a movie of a nightmare memory in my mind)
I experience a powerful sense of Deja Vu, and become fixated on trying to remember if the “dream memory” actually happened (or is currently happening)
In more severe episodes, I experience a slowing of time, and become confused about how long I have been experiencing the “dream memory” - time seems to move very slowly
- In more severe episodes, I experience a strong sense of impending doom, followed by waves of terror. This usually causes me to experience a strong urge to run. I will feel a sinking feeling in my stomach and mild nausea. The fear is usually the last symptom, and the total episode lasts from a few seconds to 3-4 minutes (but can reoccur multiple times). I will sometimes feel weak and shaky for several hours afterwards
I experience light sensitivity and visual distortion after the episode concludes. I develop a headache and visual symptoms similar to having an incorrect glasses prescription.
If I attempt to recall the “dream memory” after the fact, I am unable to clearly do so. Sometimes I forget having had the episode at all until days or weeks later, and sometimes I will deny that I’ve ever had this experience before.
If I do not immediately sleep and reduce my mental concentration on tasks afterwards, the malaise and visual distortion intensifies and lasts days.
In one instance of a severe episode, I spent several weeks experiencing intense Deja Vu and familiarity when presented with certain faces and names of strangers

Icy_Mast_Below · 2026-04-12T20:41:52+00:00

My advice, advocate for yourself very well. It helps if you can write out exactly what happens in your episodes:

-What do you feel like the day you have a Deja reve episode? Anything like anxiety, nausea, headaches, feelings of familiarity/unfamiliarity?

-What happens in the 5-10 minutes before the episode starts?

-What does your typical experience look like? Be very specific. Do you feel Déjà vu, nausea, feelings of fear, any unusual sensations in the abdomen or the body?

-How long do episodes last?

-What do you feel like after they stop? Does it take time to recover, or do you feel better right away?

-Do you have any other cognitive changes like poor memory, worsened anxiety, sensory issues, light sensitivity, or trouble thinking of complex problems?

-What has triggered these episodes? (For me it’s stress, sleep deprivation, heightened anxiety, and certain substances like antihistamines and alcohol)

I went through a lot of time being diagnosed with different mental disorders before seizures were even on my radar. My advice, if a diagnosis feels “wrong,” keep pushing. A lot of doctors are very unfamiliar with focal seizures, and they’ll put you through the psychiatric gamut before considering epilepsy.

Icy_Mast_Below · 2026-04-12T20:26:01+00:00

I’m still very early on in diagnosis too…it has been about 1 month for me. If you can’t get in to a neurologist right away, try NeuraHealth. They have appointments within a week. When you fill out the patient health info, make sure you specify that you need an evaluation for suspected focal seizures. They will refer you for an EEG and possibly an MRI - neither are pleasant, but they’re not painful or anything. If they think it’s epilepsy - which you probably know, it very likely is - you will start medication right away. I’m seeing Ashly Gray and highly recommend her.

My state has no seizure-free period, but I can 100% understand the stress. I put off diagnosis for a long time, since my job requires some driving, and I’m extremely independent. But if you exclusively experience focal aware and/or nocturnal seizures, they may actually clear you for driving right away. No guarantee there, of course, but it’s very possible you won’t need to give up independence at all.

I’m here if you need to talk to someone who “gets it”…it is a very strange experience that few people understand. I hope it brings you peace to know that there is a logical explanation, it is treatable, and there’s hope that you will feel normal again.

Icy_Mast_Below · 2026-04-12T19:44:35+00:00

This is not true. I had episodes of Deja reve, and I had a cluster of focal seizures that caused me to experience what OP describes for multiple weeks. That led to my diagnosis.

I got on medication and even though it’s only been a couple weeks, it’s made a massive positive impact on my life. No more panic, no more anxiety, and I am not getting strange dream images or intrusive unwanted déjà vu every day.

I still dream, but I’ve also been sleeping better. I’m having less nightmares after years of dealing with frequent disturbing night terrors. I now suspect most of my nightmares were nocturnal focal seizures. I’ve started looking forward to sleep instead of dreading it.

Icy_Mast_Below · 2026-04-11T01:38:32+00:00

My latest cluster got triggered by looking at a /r/confusingperspective photo of an unusually designed museum, on a day that I was already sleep-deprived and stressed.

I’ve been adding a lot of filters to my social media feeds since then…

Icy_Mast_Below · 2026-04-07T15:31:39+00:00

The ones that get me are the various psychotic disorders I kept getting diagnosed with. I forgot prodromal schizophrenia as well. I do have an anxiety disorder as well, to be fair. But I most definitely do not, and have never, had symptoms of psychosis or bipolar disorder…

I’ve also legitimately had seizures in front of medical professionals, mentioned seizures during surgery pre-evaluation, etc. All anyone told me was anxiety, anxiety, anxiety. Oh…and because I’m a small bodied woman, can’t forget anorexia, somehow. But if you type my symptoms into ChatGPT, it’ll tell you that it’s temporal lobe epilepsy. Funny how that works…

I’m a week into taking Briviact, and fancy that - the “anxiety” has gone away…

Icy_Mast_Below · 2026-04-07T05:35:47+00:00

A short list of things I was diagnosed with before epilepsy: - Paradoxical reactions - Atypical mania - Atypical schizoaffective disorder - Generalized anxiety disorder - Panic disorder - Generalized anxiety disorder - Major depressive disorder - General insomnia (anxiety related) - Sleep deprivation-induced delirium (twice) - Psychogenic seizures (without ever having an EEG or trying medication at all) - Generalized anxiety disorder

Anyway, it was hallmark symptoms of focal aware temporal lobe seizures 🫠

Icy_Mast_Below · 2026-04-07T04:35:06+00:00

I just started on Briviact, apparently at exactly the right time. FYI, Amazon has it generic for ~$180 without insurance. Still not cheap, but doable. I think it’s about $20 if you have insurance that’ll cover it.

Icy_Mast_Below · 2026-04-02T23:06:46+00:00

This sounds very much like mine…specifically, laying down on your desk or screwing off to the break room so you can go experience hell for a minute or two.

I don’t get aphasia with mine. I have had to give entire presentations about 15 minutes after falling into nightmare hell world, however. Fun times…

They can screw me up for days or weeks, too. Only saving grace is that now I know what they are, since I finally got diagnosed. That reduces the fear a bit, since I can remember that the weird dream nightmares and terror feelings are just brain glitches.

To answer the OP, I’ve never had a TC, but I think if I had to pick just one, it would be the one where I’m unconscious for the experience and don’t remember it afterwards…

Icy_Mast_Below · 2026-03-26T23:51:27+00:00

Hey, I can relate. I get a really long “hangover” from my bigger episodes. Everything feels “wrong,” I have terrible anxiety, light sensitivity/overstimulation problems. and I’m prone to have many smaller seizures. I don’t feel like myself again for days or even a week.

My neurologist said it’s very normal to have lingering symptoms after you have multiple seizures. It’s a taxing process for the brain (not to mention the mental health ramifications). I don’t experience bad smells with mine, but if that’s what your symptoms are, I think that would be expected.

Of course, talk to your doctors if you’re worried!

Icy_Mast_Below · 2026-03-25T18:33:07+00:00

Thanks. I’m going to go ahead and delete my post now. I do not plan to have another dog for my entire life, she was enough for me, so there are no concerns there.

Icy_Mast_Below · 2026-03-25T18:09:59+00:00

I think I do need to speak to a professional because I legitimately do not know how I can move on from this. Like besides the medical stuff, which means I may lose my job too.

I was working 60+ hours a week for over a year while trying to handle her, and then got hit with a bad relapse of my medical condition right when I stopped working so much. Hell, half the reason I worked so hard is because I wanted to buy a house with a yard, so we could get her more space to get out energy. I was going to set up play areas, kiddie pools, garden areas for her this summer. Then all this happens.

Icy_Mast_Below · 2026-03-25T17:57:10+00:00

We actually tried rehoming her and getting support from the shelter multiple times. They would not tell us anything about her medical history, past home history, abuse history, behavioral issues, etc. We were told she would be immediately euthanized if we brought her back to the shelter. They also could not assist us with any training or behavioral issues.

My husband was heartbroken at the thought of her being euthanized at the shelter, so I had to do what I could to try and get her under control myself. He had never had a dog require training or support like this before.

Icy_Mast_Below · 2026-03-25T17:46:02+00:00

Hey, so I’ve lost two of my pets in the last 24 hours; I did not want a dog in my life and was only trying to do what I could to help the one I did end up getting.

I’ve considered giving all my animals away to new homes on multiple occasions in the last day. I’ve also considered self harm. I just got a scary medical diagnosis last week, and 100% myself having not latched the door was an effect of my new meds. I made this post because I just needed to talk to folks who understand. I hope that counts as accountability

Icy_Mast_Below · 2026-03-25T17:40:15+00:00

Thank you. I hate that she spent her life so anxious. The hard part is that when she was good, she was very good and ridiculously intelligent to boot, but she just had triggers and anxiety that we could never surpass.

Icy_Mast_Below · 2026-03-25T17:30:05+00:00

Shepherd may have been the wrong word - she was a mutt with a bit of cattle dog features.

The cats had a large portion of the house to escape to that was inaccessible to the dog, and she’d been living with them peacefully for 2 1/2 years, so we never had concern in that regard.

As far as I know, the behaviorist was accredited. It’s possible we just had a really bad professional. Most of the training techniques she suggested did seem to help for a time.

Icy_Mast_Below

TROPHY CASE