r/focalawareepilepsy

Just that? No other symptoms, just varying degree of language deficit. Ranging from not being able to find the right words, to not being able to speak at all.

I have made a post inquiring about my
symptoms and trying to keep a open mind,
I had a large grand mal a few months ago before and after I have been what I suspect are focal seizures, I had a follow up appointment and the doctor says he suspected fnd and when I argued wouldn’t give me a chance, my eeg did come back with slight interference and they wanna do a sleep deprived eeg, he’s not diagnosed it with me yet but I’m worried now they will just throw this down on a peace of paper, I think I’m just ranting, I’ll be honest this is so tiring now I don’t know how people do it,

Hi all,

Im not diagnosed with anything but i do have homogenous 1:2560 and every winter I hop on this thread and post an update on stuff bc it seems like every winter something happens. God i hate winter. Recently i started getting random zaps in my body accompanied by…drumroll…lower back pain that feels like an injury..? It switches sides too sometimes its the weirdest thing ever. Mind u at one point i smelt metal in my nostril and the pain shot right up my eye and it went blurry for an hour. LOL? And the tongue too half of it just goes bzzzzt and the chest too its crazy

Was just wondering if anyone else has experienced this for the purpose of literally just knowing if anyone has experienced this not bc i want a diagnosis

I’ve honestly never heard of random zaps or neuropathy causing pain that resembles si joint pain or vice versa.

Edit: thought id add some more of my symptoms see if anyone relates.

- Sparks flashing in vision
- Occasional blind spots in vision in the middle
- Cold hands and feet
- Fluctuating tsh and wbc but anti tpo negative t3 t4 neg
- Word recall? Oof.
- Left eye pain and feeling like its abit uh cloudy its very slight. Feels almost like ive got a thin layer of vaseline but retinas were checked
- Ive noticed a slight tremor in my right hand when doing things like opening a bottle. Very slight and i cant tell if its constant.
- had nystagmus during the worst flares of said zaps now im better and its gone
- not going to lie i feel good in summer. Shit in winter. Sun nor hear are a problem.
- high protein to creatine ratio and albumin to creatine ratio. Havent seen a nephro yet. Idk how my doc sees positive ana and something with the kidney and decides its not autoimmune not even UCTD🙂

But brain and spine mri completely clear

Edit: ppl feel free to join in on the thread even if stuff has been said before or if u just relate haha :)

For a bit of backstory, I have Tourette’s syndrome and when I was getting diagnosed, I did an EEG to rule out seizures bc I have a history of seizures in my family. For the EEG I had been awake for over 24 hours. I don’t remember ever getting the EEG back or going back to another doctor but my mom assumed if it was anything, they’d call us. At the time I did have kind of staring episodes that I secretly thought might be something but I didn’t think they were seizures. Nearly 3 years later and I think I might be having focal seizures. I get this really intense out of it feeling, like I’m disconnected from reality. Everything feels slower and nothing is processed properly in my brain. I don’t understand questions being asked or what anyone is talking about. My mom asks me what I want for dinner and I don’t understand a word she said. I feel empty, no other feelings except unexplained anxiety and panic. Then I just freeze. Sometimes Im aware, I can hear people around me though I can’t really understand what they’re saying and I can see but only the spot I’m staring at and I usually don’t understand that either. My arms twitch or I drop my phone or whatever I’m holding. I’ll come out of it but sometimes I still have that feeling and it happens again. Other times, I freeze but I’m not aware of it and when I come back, I realize I had been staring at the same spot but I don’t remember what happened. Are these focal seizures? I’ve had an EEG which makes me think they’re not but what else is happening? It doesn’t feel normal.

Hi all,

I’ve been living with epilepsy for a few years, and one thing I’ve noticed is how many everyday environments aren’t really designed with neurological sensitivities in mind. I’ve also found myself becoming more sensitive to certain stimuli over time, even though my condition is currently well-controlled with medication.

Because of that, I’ve been thinking a lot about how isolating this experience can be for people.

I have a tech background, so I’m curious to know what challenges or unmet needs have you noticed in your own experience living with epilepsy?
This could be anything: apps, tools, accessibility gaps, or even content like blogs/videos that you wish existed.

I have focal seizures with impaired awareness which has caused me a lot of problems over the years as it probably has a lot of you.
Seizure usually starts with Déjà vu then intense fear in the out of my stomach then I sort of don’t remember until a couple minutes later.

The last few days I’ve experienced something a bit different. It’s been just a sudden spike of fear and whatever I’m thinking about seems really loud in my head then a bit of emotion that I don’t really let out but it’s not quite the same as the epilepsy as I don’t lose awareness.

Also, my epileptic episodes usually happen on a morning but can be unpredictable at the same time. The new feeling can happen multiple times an hour, it’s making me feel almost detached from reality even more.

This newer feeling I’m experiencing only lasts a couple of seconds but it’s playing on my mind.

I have an appointment with my epilepsy nurse tomorrow so will be mentioning it to her, if she doesn’t think it’s necessarily related then I’ll just be phoning the doctors.

I suppose it could be something totally different to epilepsy but just thought I’d ask. Thank you

Is there a way to cool-off a huge uptick in episodes? I lost some sleep traveling to a conference and started having focal seizures. I got sick when I got back and can’t seem to reel them in. The neurologist increased keppra, took me off Wellbutrin, and I’ve been sleeping like crazy, but I keep having 5-8 focal seizures a day (sometimes 2-3 in a cluster).

I’m new to epilepsy (which is why I was on Wellbutrin, whoops) and I just have no idea how to get these under control. I’m 5 days on keppra, finally stopping the lower dose of Wellbutrin today because they were doing a slight taper. Is there anything else I can be doing?

Was it a gradual improvement, or did you just suddenly started feeling better?

It feels incredible to have reached nearly six months seizure-free — a milestone I’d worked so hard for and started to see as a new normal — only to have a seizure suddenly happen and feel like I’m back at the very beginning. All that progress didn’t vanish in that moment, but it still hurts deeply to feel like I have to start over, rebuild that confidence, and find my footing again. Even so, I know every day still counts, and I’m determined to keep going, one step at a time.

I do not have epilepsy. I do not know what it feels like so I want to try and educate myself more on what it feels like, possible triggers and really just how it actually works. I just did a bit of research, but I think it'd be a great help if I got some help and questions answered by people who actually know more about it through their own experiences, because frankly, I trust people who have those experiences for help and input then a website, because websites, even health websites, can sometimes be wrong, and I don't really want to get this wrong.

Okay so in the novel I am writing, there is a character, Jane, with epilepsy. For a bit of context, she is dead and a ghost, so it cannot physically affect or harm her anymore, but some triggers can still affect her and make her feel uncomfortable or make her feel worse, so she still tries to avoid them.

So I'm going to put down the bit of research I did just know here below, and anyone with experience or who is a lot more educated on the topic than I am, can you please tell me if it's accurate and what more things I could add. This is only going to be a for a small bit of the story and the character, but I still want to make it as accurate as I can and not fall into a stereotype or something like that. I also have some questions that I want to ask so if anyone has any answers that they're comfortable with sharing, please feel free to do so

This is the brief research I've done:

Causes for seizures:

Seizure triggers don’t cause epilepsy, but can trigger seizures in people with epilepsy. Most people with epilepsy don’t have reliable triggers that always cause seizures. But some factors make it easier to trigger a seizure:

• Alcohol
• Flashing lights
• Lack of sleep
• Hormone changes during the menstrual cycle
• Stress

Symptoms:

Symptoms depend on the type of seizure:

• Short-term confusion
• A staring spell
• Stiff muscles
• Jerking movements of the arms and legs
• Loss of consciousness
• Psychological symptoms such as fear, anxiety, or deja vu

Warning signs:

Focal seizures may have warning signs before the seizure:

• Feeling in the stomach
• Feeling emotions such as fear or sometimes deja vu
• Can be a taste or smell
• Sometimes visual (e.g. steady or flashing light, colour, or shape)
• Experiencing dizziness and/or loss of balance
• Some people may experience hallucinations

Please tell me if there's anything else I can add for this, or if anything's wrong.

Now onto some more specific questions:

• I couldn't really find anything about this, but I know there are multiple types of seizures someone can have, and I'm just wondering if epilepsy can cause any type, or is it usually just one? And can someone experience multiple different types of seizures?
• Do you know when the sun can shine through leaves in trees and kind of feel like it's flashing? Can something like that trigger epilepsy or make things more uncomfortable?
• Can astigmatism somehow be a trigger?
• I've heard that blue tinted sunglasses can sometimes reduce the risk of triggering epilepsy. Is this true and is there certain types of sunglasses that work better? And is it usually just blue tinted ones, or can other types of sunglasses work?
• Other than avoiding possible triggers, are there other things that can help? Like the sunglasses or something else?

I can't think of any more right now but I may add more later.

I hope this doesn't come off as offensive in any way, I am generally just trying to eduate myself to help write this, and it could come in handy later as well. If you have any answers or things to add and feel comfortable sharing, please do so, it would help a lot and I'd really appreciate it!

Has anyone here experienced seizures due to a flare here before?

I have had myoclonic seizures for more than 1,5 years now. They mostly happen in the evening/night every few days and it's mostly my right arm or leg that starts shaking.

During my autoinflammatory flares they get severely worse and sometimes I get flares that almost exclusively feel like neuroinflammation with "mild" other symptoms.

I recently had a flare that lasted 3 days where my right arm and right side of the face were spasming every few seconds. I went to the ER and laid in a treatment room for 8 hours and had 2 more severe seizure there where the whole right side of my body started violently shaking for a few minutes and my heart rate elevated to 160+ (it was the first time a seizure got so severe).

Thankfully my rheumatologist sent me to another hospital and he suspended that I had encephalitis.
The test there were inconclusive but thankfully ruled out encephalitis but l am treated for frontal lobe epilepsy with focal aware/ myoclonic seizures right now.
I am really struggling to find more information about the connection between seizures and autoinflammatory diseases.

Sorry for posting here again I accidentally deleted my post.

Would love to hear from people who have it and if they have had similar experiences! I’m booking a neuro appointment soon for this.

I recently turned 20 and for probably the last six months have been having weird unpredictable moments that feel like déjà vu but aren’t, sometimes multiple times a day, sometimes weeky, sometimes monthly. It’s the same vision every time but I can’t remember it at all after, just a vague idea that it involves something with building or breaking things down for a greater cause, and that it’s melancholy.

When these visions happen it’s like I’m being pulled out of my body as if I’m very high on something but I’m completely sober, and my whole body feels weird. I’m completely aware and can continue conversations as if nothing is wrong and no one notices anything, this even happened to me during intercourse.

I recently started looking into it because for a while I thought it was just some random thing and I couldn’t even describe what was going on but i immediately saw stuff about temporal epilepsy and the symptoms sound exactly like what I’ve been trying to describe.

Honestly part of me is doubtful and feels like I’m just being dramatic and it probably nothing but it’s so weird and every time I’ve described these visions to people they’ve never heard anything like it. I just find it hard to believe I have epilepsy it feels so random, and it’s only been happening for a few months and after the vision moment happens I’m completely fine and unaffected unlike a lot of stories I’ve seen.

If anyone could share, what was your experience getting diagnosed and treated, and is there anything I should know?

***I smoke weed occasionally if that’s relevant

update: I’m lowkey terrified to go in now that I know the meds are so awful and have such bad side effects, plus I might not be able to use weed anymore. Are my symptoms indicative of needing to go in or are they not that serious and I can go unmedicated bc my symptoms don’t affect my daily life?

I’m trying to figure out if what I’m experiencing are focal aware seizures/auras, or if it's something else, and I'd love to know if anyone here relates to this.

Almost daily, usually between 5 PM and Midnight, I get these intense "zaps" and tingling. It starts at the tip of my tongue and the back of my teeth, then shoots down my arms and into my lips.
During these episodes, I also get hit with sudden confusion and sometimes double vision. Over the last 8 months, it’s all gotten a lot worse and much more noticeable.

The weirdest part? Walking through doorways seems to be a major trigger for me. Almost every time it happens, a doorway gets me.
I recently had a routine 12 PM EEG that came back totally normal, but I told them my symptoms almost exclusively happen in the evening/night.
For context, I did a 5-day EMU stay about a year ago that actually caught focal aware seizures, but I didn't even realize I was having them at the time! (I also have a history of right front temporal epilepsy, multiple arachnoid cysts, and POTS).

Has anyone else experienced these specific symptoms as auras or focal seizures?

Did transitioning between rooms/doorways trigger them for you?

What about time of day?

Cyst information if it’s helpful:

right anterior temporal onset epilepsy

Right temporal region (Right middle cranial fossa): This is the largest cyst and the one that was surgically fenestrated (drained/opened) via a right temporal craniotomy in 2020 to relieve pressure. 
Left anterior temporal region: Specifically noted along the left superior temporal gyrus. 
Left temporo-occipital region: Located at the junction between my left temporal and occipital lobes

This is all annoying 😆🤦🏻‍♀️ Any insight would be so appreciated!

Hi,

I was diagnosed with temporal lobe epilepsy 3 months ago. I only have focal aware seizures, mostly in clusters. They have the hallmark symptoms of intense déjà vu, Deja reve, seeing “dream memories” that are frightening and make no sense, vision issues, visceral terror, and nausea. A cluster or one intense one will cause me to experience lasting symptoms of fatigue/malaise and familiarity for days or a week afterwards.

I had a clean MRI and EEG but was diagnosed based on symptoms. Brivaracetam immediately improved my symptoms.

Thing is, now I find myself doubting my diagnosis a lot. I’ve had anxiety issues through most of my life. I have a black mark of a PTSD history on me. These “epilepsy” symptoms have caused me tremendous disruption and it’s been very challenging for me to work, between the cognitive symptoms and the med side effects. I’ve had to change my entire way of working, living, and taking risks. But worse than that is how it’s changed my (already strained) relationships. My family doesn’t believe it’s real, I’m pretty sure one segment of my family (estranged) will actively use it against me given the perfect opportunity. My marriage has been massively strained - without me able to do so much of the labor, and with the constant medical visits and me talking about feelings/symptoms, we’re having to start couples therapy.

Then there’s the work aspect. I can still drive. However, I’ve been acutely aware of the fact that if I lose the ability even temporarily, I will be forced into disability. We already had one incident of a woman getting access to everyone’s medical information and then using it to blackmail folks. Thankfully they didn’t know about my epilepsy…yet. Because she hated me and would have absolutely used it against me.

All this is making me think…it must just be that I have really crazy panic attacks that are all in my head and not seizures, right? And I overreacted until I got diagnosed with epilepsy. I want to go off my meds, never think of epilepsy again, and be cured. I know that makes no sense and may kill me if I try, but that feels worth it.

I just recently went for a few days to visit friends that live sort of a quiet life. Home in the country, near a a beautiful lake. Lots of nature to see.

Even though, it was a bad time for me (The week before that time of the month)I was coping with my seizures better. (Focal seizures) I was able to push myself to do more things. I was recovering better. My brain was not constantly buzzing with auras. This was only a few days, but it was life changing. I didn’t realize how stressed I was just dealing with everyday life.

My child and I share an ultra rare genetic X-linked variant on a highly conserved gene that has the potential to cause seizures. He’s substantially disabled in multiple neurological ways, including having very abnormal EEGs with interictal epiliptiform discharges in multiple lobes of his brain every few seconds, but he’s never had any clinically identified seizures. One of his neurologists said that my son’s high volume of frequent discharges is, in and of itself, considered a seizure disorder despite him having no full on seizures. He takes medication which have thankfully normalized his EEGs.

This has me wondering; I was diagnosed with Tourette over twenty years ago and I have muscle jerk “tics”… but what if they’re actually super mild seizures? And if they were, is it possible that there’s actually a version of mild seizures so inconsequential that a person could experience them unmedicated for decades and decades without it ever becoming a larger problem? And if so, is it possible that there’s actually a huge spectrum of people out there in the world having extremely mild seizures and they’ll never know? Like maybe everyone has some level of super mild seizures…

My epilepsy diagnosis was changed to PNES after several normal EEGs. My psychiatrists insist I have epilepsy. My neurologists insist I have anxiety.

My neurologist referred me to a functional neurologist, but it’s $900 for a first visit. 

I’m willing to try anything, but I have a feeling that $900 is going to get me a prescription for yoga to manage my stress…🙄

What have your experiences been?

I was diagnosed with left temporal epilepsy after having TC at 6, had complex partials and the occasional TC for years. All of my seizures started the same way, intense fear, déjà vu, rising throat feeling. Flash forward to 23 I start getting the throat feeling and fear (less déjà vu this time but sometimes intensely as well) but it is now followed with intense palpitations. I went to a neurologist and they gave me the last meds I was on at 12 (Lamotrigine). However, I keep finding myself doubting if they’re actually seizures due to my brain associating the feeling with the term “aura” instead and it’s making me second guess myself, does anyone has any kind of similar experience?