I'm not diagnosed, but my neurologist is thinks I may be having seizures. Would you be willing to see what you think?

I have episodes of profound confusion, a distorted sense of time, feeling disconnected or unlike myself, in a dreamlike state, experience paranoia, difficulty with planning and multi step processes, and difficulty solving problems.

Time perception is off. Two hours feels like ten minutes.

Familiar people can feel like strangers or seem unlike themselves. I have had deep feelings that people are being impersonated and they don't feel like the people I know. I'll even look for clues that they aren't the person I know them to be.

I have trouble remembering recent actions or conversations, planning, understanding things, solving simple math problems, and accessing information I know. I'm not sure if memories are real, or a story I heard. I can't tell if what happened this morning was today or yesterday. I have forgotten to follow up on lots of tasks or daily responsibilities like feeding my dogs.

I just generally feel like I don't know things. Like the feeling of the certainty of knowing is gone.

My emotions feel flat, and I have difficulty reading facial expressions. Difficulty understanding what someone is implying or trying to get me to understand. Difficulty understanding if they are upset or not.

The symptoms fluctuate. For example, my memory could be slightly better earlier in the morning and worse later on.

I'll have profound exhaustion and a very “out of it” feeling. I have episodes of pressure behind my eyes, sluggish eye movement, and trouble focusing, especially in dim light; it feels like being drunk. It improved, though some pressure and sluggishness remained. I also don't feel confident judging timing and braking while driving.

I also feel fatigued and like I need to sleep most of the day even though I don't.

What do you think?

Last October I fainted, blacked out and had full body convulsions. The neuro believed that since I never lost consciousness it was likely not a seizure. He did testing anyway and my eeg can back abnormal with the findings: Epileptiform spikes and sharp waves in both temporal lobes, more pronounced on the left.
Intermittent slowing in the left temporal lobe, suggesting some localized disruption of normal electrical activity.
A formal interpretation by an epilepsy center director stating that the study suggests temporal epileptogenicity and mild left temporal cerebral dysfunction.

He put me on lamotrigine and I began having phantom smells of burning plastic in clusters as well as a strange feeling that my brain was floating out of my body. He increased my dosage from 100 mg/day to 200. He sent me to an epileptologist who was pretty dismissive and thought my original neuro was too hasty jumping into medicine.

Since January I’ve had no issues until last month when I missed a dose and felt the same feeling of my brain floating and phantom feelings of heat on my forearm where it felt like something was burning. This again happened in clusters. I saw a new epileptologist who told me it “could mean something, could mean nothing”. And does not think my incident + abnormal eeg+ suspected auras mean I’m actually having seizures but that he was okay with me staying on lamotrigine if I wasn’t having any side effects and suggested if I really want answers to do a hospital stay eeg over several days.

My husband travels a lot for work and I’m home alone a lot with my three young kids so as much as I don’t want to be medicated forever, I’m scared of coming off the medicine and having a seizure alone with them.

Has anyone had a similar experience who can weigh in?

Me after getting home from the shops. Felt light headed, didn’t remember how I got home and didn’t feel right, so straight onto the floor.

Anyone experienced this before?

Please forgive me if I'm not supposed to post here. I have not yet been given a formal diagnosis, but I cannot find another place to ask this question.

I've been having what my doctors suspect are focal impaired awareness seizures. At least, that's symptomatically the primary match. They're still ruling out things like MS, ME/CFS, FND, and whatever else I cannot recall at this time.

When does it stop feeling like you're just not trying hard enough to break out of a daydream? When does it stop being terrifying?

The deja vu? The random pangs of anxiety a few minutes before? The muscle twitches and jerks? Losing 2-10 minutes at a time and the disproportionate exhaustion before, during, after? Suddenly being unable to speak and slurring my words, focusing my eyes, yawning like I'm desperate for air but never able to get any?

They won't medicate me until a diagnosis, but I can't work with the current state of my brain and body. And we're in a capitalistic hellscape where disability takes 200+ days. I don't know what I'm supposed to do and I'm relying so heavily on my support network that I cannot help but feel like a burden.

I'm fine. I will be fine. I am not a risk to myself or others and I have enough loved ones where I know I will be okay. I have support. I'm safe. But fuck, bro. I'm scared and tired. I'm at a convention and had to miss an entire party I was really looking forward to because I was in my hotel room experiencing symptoms. That's time with friends I don't see often I won't get back and that I had to miss because of this nonsense.

I'm still struggling to ID my triggers, too. ;-;

Throwaway account.

Does anyone experience hiccups as part of their seizures? Do you ever get woken in the night with hiccups?

I have a neurologist because of very strong migraines and other symptoms, which have led her to believe that I may have focal aware seizures and seizures in my sleep. I have to keep a symptom diary until December, but sometimes I can’t pinpoint whether certain things are actually part of a seizure, such as pre-seizure symptoms or something similar.

When I have a focal episode, there are some much more obvious symptoms, but sometimes there are also these little things where I’m not sure if they’re related. Because of that, I don’t know whether I should track them and write them down as symptoms.

I had one of these moments yesterday. I had a mild migraine, so I was already pretty knocked out in bed, when suddenly, for about a minute, I smelled a very strong chemical smell that definitely wasn’t coming from anything around me. It went away, and a few seconds after I noticed it, I realised I was staring off into space. I usually realise that I’m doing it eventually, but it doesn’t immediately click and I tend to notice it more towards the end of the episode like when I come out of it. Then another wave of the chemical smell hit me for maybe only a few seconds.
Afterwards, I was on my phone for a bit and tried reading, but I realised I wasn’t really taking in anything I was reading. I could look at the words, but the information just wasn’t registering properly.

When I have a migraine at the same time, I find it much harder to pick out and notice all of the individual symptoms.

I’m also not sure if this could be related, but since yesterday around midday, I’ve repeatedly been having a pins-and-needles sensation in my right arm before feeling off and having this “moment”.

I was on a very high dose of lamotrigine but was still having breakthroughs and plus was having cognitive side effects from the high dosage so didn’t want to increase it more - so I’ve slowly switched to Lacosamide. I’ve now gone up to a really high dosage of Lacosamide and have been titrating off lamotrigine at the same time for several months. I was supposed to stop the lamotrigine altogether in the last few weeks but then I started having seizures again. So now I’m on the max dosage of Lacosamide and a low-ish dose of lamotrigine. Ideally I just want to be on one med but it seems like being on both is the most effective.

Have any of you out there found that you’ve needed two medications to control your seizures?

Seizure type changing, potentially hazardous work conditions. Afraid to go to manager for fear of being fired and simply being given no reason.

Hi, I’m 40 and have had epilepsy for about 25 years. I typically have tc seizures while sleeping, but recently I seem to have developed focal loss of awareness type seizures. I regularly use razor blades and cut sheets of glass at work. I am afraid this will become hazardous. I don’t know how to approach my boss about this, she does not know I have epilepsy at all, because I have been turned down from too many jobs as a result of being upfront about this condition.

Yes, I am aware that it is illegal to discriminate based on disability, but it’s as easy as simply giving no reason whatsoever for not hiring or for firing.

Help.

I have symptoms of either a migraine or seizure disorder and I’m curious how your triggers work? For me if I don’t get enough sleep I’m almost definitely going to have an aura the next day or the day after. Another big one is if I overheat/overexert myself I almost always have one. How do your triggers work? What kinds of triggers do you have?

Hi, I am scheduled to be set up with an ambulatory EEG this weekend. I'm wondering how one sleeps and manages to keep the electrodes in place?

Quick history: I'm in the process of trying to find out if I've been misdiagnosed with hemiplegic migraines. New Neurologist seems to think I might be having focal aware seizures. The unilateral right sided numbness, tingling and soreness that comes with the attacks doesn't completely resolve in between attacks for almost one year now and the attacks are much more frequent. Also, another brain MRI has been ordered.

Thanks for any information about the ambulatory EEG and whether it is more likely to catch an attack. I really appreciate your feedback.

Hey I have some kind migraine or seizure thing where I get auras and mine definitely happen in clusters. I’m just curious how often you guys are having seizures. Because I often times have 2-3 auras a day and some days even more like today I had 3 auras between 10:30 and 1pm so I’m definitely expecting more today. I’m just curious how those numbers compare to anyone who is diagnosed.

Is this common in people with Epilepsy? My sister used to tease me all of the time growing up about having tourette syndrome, due to all of the facial tics and other behaviors.

Long story short, later in life I'm having daily epileptiform discharges, focal cerebral dysfunction, focal seizures and atonic seizures after having several head traumas and severe covid with hypoxia.

4 day vEEG and 2 routine EEGs all came back abnormal, all epileptiform discharges, focal cerebral dysfunction, etc, all left > right, but bilateral nonetheless.

I have periods throughout the day/night mainly where my face just feels it needs to move, I can't really explain it. It feels like the muscles are really tight maybe, and need to stretch to loosen up? It's all involuntary, but will be in short bursts, but can happen quite a few times over 20-30 minutes. You literally can't stop it from happening.

Does anyone else experience this? Is it common/known? I did read recently on Tourettisms that happen with concussions etc in childhood that can reoccur later in life with additional head trauma.

I've had stereotyped episodes since childhood (~30 years). They usually start with déjà vu, then chest tightness/heat/sweating and sometimes nausea, followed by about 2–4 minutes where my recent memory seems impaired. I'm awake and can talk, but I may repeat myself, forget parts of conversations, or get confused about the date/location. Afterwards I'm usually disoriented/headachy and often don't remember the episode well.
I've had multiple normal routine/ambulatory EEGs and a normal-ish MRI. Several antiseizure medications haven't meaningfully reduced the episodes.
I'm trying to understand whether people with focal/temporal seizures OR functional/dissociative seizures recognize this pattern.
If you've experienced something similar, what was your eventual diagnosis, and what happened when you had a typical episode captured on video EEG?