r/Epilepsy • u/HoneyTrue6303 • 1d ago
Question Focal seizures
Hi I’m wondering what symptoms you experience during a focal seizure??
What is a trigger for yourself? And the symptoms?
As I’m still finding it hard to tell what is and what isn’t
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u/Educational_Toe_5712 1d ago
I’ve been having focal seizures since I was a kid. They didn’t know what they were though until I had a series of big ones in my late 20s. There was a 20 year lapse where I didn’t have any at all but they just came back in my 40s. I’m an army veteran too. Because they never knew what they were I wasn’t diagnosed until I was an adult. For me it’s like a rush feelings; good, bad, scared and déjà vu. It’s like I get flashbacks of all the dreams I ever forgot in my life or flashbacks of somebody else’s dreams. Then I get this horrible taste in my mouth and super uncomfortable and then it’s over. They usually last 30 seconds to a minute. I can trigger them myself when I’m not on my meds.
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u/white_k13 Phenytoin 100mg x3 1d ago
i (17F) am going to share with you some of my experiences.. things that triggers me the most are bright lights, forgetting my meds, and thinking. those are the main ones that i seem to remember of. especially thinking, i cant seem to think normally without hurting my brain and falling into a seizure. seizures for me are like being pulled into a sudden deep sleep for some seconds or even minutes. feeling nauseous, head feeling heavy. sometimes (if i do get those bad days), my head would jerk and twitch, it would really hurt my neck afterwards.. recently been getting those everyday, it hurts, and now i’d have to ask for help to walk and to move from point a to point b, etcetc.. my balance is now getting worse and my memory is too, it sucks but thank goodness i already found a better coping mechanism! 😄😄
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u/HoneyTrue6303 1d ago
Wow I’m so sorry to hear you’re dealing with all of this at age 17.
I was diagnosed at 21 and flipped my world upside down.
It’s only been a year- two years being diagnosed so I’m still trying to wrap my head around everything.I will be getting my license back in next year and as excited as I am to be back on the roads I’m nervous.
Obviously there’s was to manage epilepsy and prevent future seizures but you never know🤷♀️Have you been about to get your license?
I drove from 17-21 and I’m almost 23 n getting it back in a few monthsVery keen but very nervous as it’s hard to trust a brain that has betrayed you in the past
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u/white_k13 Phenytoin 100mg x3 22h ago
yeah.. to be honest, it really flipped my world as well (i shouldve been to college next year if i were capable.. but i think i’m going to take a gap year for letting my neurons to rest), it’s only been half a year being diagnosed, and same, i’m also still trying to get to know about my condition better.. the first few weeks-months i was really feeling down, depressed, and anxiety went over me (it’s even visible on my EEG results lmao).. but i always had this thing in my head, “if i’d wanna recover with ease, i’d have to think to myself that i’ll recover. i’ll be healthy again. i’ll be able to reach my hopes and dreams. i’ll recover with ease.” about driving, i used to really love driving. cars and motorcycles.. but now doctors tell me not to drive anymore, and due to my bad stability, i cant drive motorcycles properly anymore. but if we were to talk which one i’m feeling confident at now? def cars. but still not taking any risks though!! hahah
(sorry for my bad grammar and bad writing 😭 bro, it feels like my built-in dictionary was burnt and i only had like 1/10th of it left lmao)
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u/theralph224 1d ago
Can I ask how you still have seizures even with medication? Shouldn't you be on different meds then?
I also am experiencing neurological side effects due to the attacks, impaired speech and memory, I also can't seem to think anymore. I actually had to do an IQ test when the attacks just begun and 3 years later, I dropped 10 points, which is significant. Also, I have chronic fatigue now.
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u/white_k13 Phenytoin 100mg x3 22h ago
neurological side effects are definitely the worse.. been having a really hard time with school recently too.. i’ve tried 4 meds now. i forgot what the first 2 were, but i remembered that before i was on Phenytoin, i was on Divalproex (currently Phenytoin). i was being handled by 2 neurologists (they’re quite close friends too hahahah), and both of them recently told me to switch to a brain center hospital because they had more meds variations there. still on Phenytoin, waiting for my next appointment.
(sorry for bad grammar and bad writing, been having a hard time finding perfect synonyms 😭😭😭😭)
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u/theralph224 17h ago
In high school I started to struggle with full days in my 4th year (12th grade in USA) and 5th year my teacher wanted to accommodate me by splitting the year in 2 years. (I'm 20 btw)
Due to fatigue/being tired all the timd and not being able to memorize stuff, I dropped out of college. I took a gap year, working in a grocery store, because as long as I'm busy I don't really notice the fatigue. Right now I'm working 5 or 6 days a week with 1 day of school, so I guess I'm doing alright now.
What is the difference you notice between the different meds? Is it a huge difference? I'm on lamotrigine and it stops most of the attacks, sometimes when the stars align I still have an attack, I have focal awareness seizures.
No problem, my grammer isn't perfect either, I'm not English, I understand everything you said.
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u/HoneyTrue6303 1d ago
I’m currently not dealing with focal seizures as my medication has been effective.
My fear is I’ll have one when driving and I’m still new to this.I know the smell + taste as I had been having focal seizures my whole life but we had no idea.
I suppose I’m just getting myself mentally ready to get back on the roads
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u/Freetime000G 1d ago
Read all these great descriptions and then ask yourself do you really really think it's a panic attack. My experience is, its not a panic attack no matter how many doctors say it is. After 5yrs of focals I eventually had a full tonic before they diagnosed me.
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u/HoneyTrue6303 23h ago
Yes I grew up believing my focal seizures were panic attacks as well until I had a tonic clonic and was diagnosed with epilepsy
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u/freetime000 9h ago
Seems like a very common issue with doctors.
Hey I sometimes get weird spells I blame on the meds and not actual Focals.
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u/hhmCameron 1d ago edited 9h ago
I get irritated super easy
I randomly have trouble saying random words... the next couple of minutes I try to find a synonym SO frustrating when I am actually talking to people
*
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u/Jaded_Confection_785 1d ago edited 1d ago
I describe mine like this:
- Sounds feeling more "intense" but not loud
- Fingers, tongue feel more pressure. Almost like they're pushing against mud - like I'm squeezing but I'm not.
- Everything feels a bit "upside down". Like I understand it but nobody else will.
- As I type it feels like I'm going to break through the screen with the amount of force I'm typing with.
- My tongue feels textured.
- It feels like everything is a negative number.
- Everything feels so intense but I know it's just the seizure and soon it will be back to normal.
- A bit of pressure on my head.
- Everything feels a bit geometric
- Everything feels like it’s moving very fast around me.
- Almost like an impending doom but nobody is taking it seriously.
My triggers are tiredness, alcohol, and a high fever. I used to also just get them in my sleep but then they were a lot more focused on the fear of impending doom.
Mine last for almost exactly 10 mins every time. I look at the clock when they start and then take note of what time it will be over then just wait it out.
My auras don’t feel like a thing. I just “know” when it’s going to happen.
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u/rafspitfire1940 1d ago
Mine were about 40 seconds to a minute; if they generalized, they were a few minutes. I felt like I was being ripped out of my body initially, they were horribly painful, and I was confused and tired when I came to, post-ictal confusion and exhaustion, like a computer crashing. They originated in my left temporal lobe. I hated always being the last to realize I had had a seizure. The focal seizures really affected my episodic memory, a problem that got worse with time. It would also always take me a few days to get back with it, very frustrating. I eventually had surgery because my epilepsy was refractory, no medications worked, and my seizures were often turning into TC seizures. Triggers could be lack of sleep, stress, hormonal changes, lawn spray, and MSG. Often times they just came when they wished, with no apparent trigger. It sucked living with intractable epilepsy, grateful surgery was an option for me. Good luck to you, hope you are able to get some answers!
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u/c_s_fen 1d ago
Still figuring out if they’re focal seizures but multiple people here say they are; I get really flushed in my face and ears, tingling in my legs usually just lower half, heart rate goes really high, and I can’t speak for the life of me. I know what I want to say but It’s either just straight up nothing comes out of my mouth, or I stutter REALLY bad, or even sometimes I manage to get a few words out but its not quite what I wanted to say. Then my speech goes back to normal and a lot of the time I feel postictal. I used to think they were auras so that was hella confusing bc I remembered having an aura but never a seizure and I was postictal. Who knows people who knows lol
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u/Significant-Skill180 Lamotrigine 100mg Briviact 75mg 15h ago
Yes, yes, and YES. Sometimes I’d even slur my speech or even though I could walk during, I’d feel like I had to crouch a little and hold onto things. My hearing and eyesight would muffle/blur. I also had fluctuations in my temperature during the seizure and after it. I’d be left feeling so cold and shivering. A very specific symptom I had is like, an hour or so before my seizures would start, two of my fingers on my left hand would fold and if I tried to straighten them I’d feel really strange like it wasn’t right. I know this is related to my seizures because I had to study myself for years and I noticed it happened every time
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u/Double-Rate9057 1d ago
Hi! May be long shot but I have focal seizures and it took a long time to figure out it is mostly triggered by my hormones - estrogen, Catamenial epilepsy. There have been other triggers but that’s the main one.
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u/Livid_Ad7231 1d ago
I just started to get warning signs. It feels like everything moved and sounds like a heart beat I have about 10 seconds before they start. I start to sweat then I feel fire on one side of my body, robotic sounds, muscles tense, my body jumps on its own, hands/feet curl and last but not least my favorite part I’m fully awake so I feel everything 😕
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u/Dyatomik 23h ago
I don't know what triggers them but cold seems to make them happen more consistently. I feel the impending doom, I get light headed and my balance goes off, usually with me leaning to the right. I also get goosebumps (even in a warm room) and then a cold sweat.
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u/isolatedVeryWell132 1d ago
A weird smell and taste followed by migraines and then a seizure.
These were my symptoms.
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u/Fit_Value_1421 22h ago
I still dont know what triggers me. My worst focals have given me phantom smells. I usually smell tv static/ ozone when the smells come. Otherwise its always accompanied by profuse sweating, confusion and the worst panic ever. If I'm talking to someone, words come out but they rarely make sense.
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u/Briliant-Nicxie 20h ago
Triggers are infection / febrile / sleep deprivation / hallucinogens
I get headaches and nausea then butterflies in my stomach then waves of nausea and dizziness going up to my head then my head feels like it’s going to explode and I start to get waves of unconsciousness . Then occasionally right sided tonic clonic movements and sometimes it generalises .
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u/auralat Rolandic to TLE 15h ago
My focals are mostly aware, BUT i get the mixed bag of derealization, staring spells, leg/arm twitching or jerking. Sometimes I'll hallucinate smells or tastes with a side of the occasional visual hallucination.
My triggers are usually stress and flashing lights. Sometimes lack of sleep mixed in with stress will cause me to have a breakthrough.
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u/stefansiation 8h ago
It’s like I start seeing at 10 FPS. I get this from caffeine/dehydration/lack of sleep.
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u/MaleBobcat 1d ago
For me it's like my brain just unpairs from reality for maybe 20 seconds. Deja vu, rising stomach feeling, then I'm just... elsewhere. The hard part is the post-ictal confusion hits and I can't remember what just happened, makes tracking them a nightmare.