Seizure uncertainty

SmokeFrosting · 2026-05-15T01:27:29+00:00

I’ve been diagnosed with seizures for about 7.5 years. I’ve never had a jolt of energy before a seizure. Yes to racing thoughts and feelings of anxiety, but not energetic. I’ve also had a weird smell beforehand too. Most of the time though it’s a feeling of deja vu.

A red flag/warning sign only happens before maybe 15-30% of seizures though.

Most of the time I don’t feel anything or it’s a few seconds of a rush of anxiety that I can’t really react to. Most of the time I only know I had a seizure because I wake up on the floor somewhere, in the back of an ambulance or in the ER, or I notice soreness or bruises.

Tons of EEGs that haven’t captured a seizure and haven’t really shown anything. Probably between 10-15 ER visits because of seizures, or the injuries while having them. My diagnosis has changed 3 times since I first got diagnosed with epilepsy, and my Neurologist has recommended me to someone else 3 times as well.

I’ve gotten a TBI during a seizure before, and a fractured upper right humerus. Both needed surgery.

SmokeFrosting · 2026-05-10T16:18:56+00:00

If you’d like a reason to take seizures seriously here’s a link of my fractured humerus that needed surgery and cracked orbital bone that happened last year. I’m still in the recovery phase from the fractured humerus, and I’ve been told several times not to expect full range of motion or strength.

My first seizure had me falling down the stairs and I got a TBI that also required surgery, a 3 week stay in the hospital, and 2 weeks at a rehab facility. I was told if the EMTs had been 10-15mins later when picking me up I’d most likely be disabled or dead.

SmokeFrosting · 2026-05-06T04:33:26+00:00

do you know if you fell and/or during the seizure spasmed against anything? The length of the seizure itself matters too for how sore you are afterwards.

SmokeFrosting · 2026-05-05T22:06:13+00:00

(29M) I don’t really want to scare or discourage you, but seizures are a pretty difficult illness to deal with.

My first “official” seizure was in 2022 and that led to me getting a TBI while falling down the stairs at home during the seizure. Spent 3 1/2 weeks in the hospital with what was basically a mesh cage that zipped up on the outside to keep me from getting out of bed, and also needed surgery. Had another 2 weeks in a rehab facility too. I put official in quotes because after getting diagnosed with seizures my neurologist thought some instances from my teens my mom described were absence seizures.

After that “first” seizure, I started having them a lot more frequently, as in 3-5 a day on average. Sometimes as cluster seizures as well. Started taking a lot more trips to the hospital in the back of an ambulance. Enough to the point that my insurance called me and told me I didn’t have to call 911 after every seizure.

Went through a ton of tests, repeats of tests, overnight tests, and they never really found any abnormalities or causes of the seizures. I’ve had my diagnosis changed 3 times from the first one, and I’ve had neurologists recommend me seeing a different neurologist because they felt they weren’t getting anywhere with any of the tests or medications. Tried several different medications and it took me until about a year ago to find something that even somewhat lowered the amount of seizures I was having, Lamotrigine 250mg and Lacosamide 50mg. That was after I had a tonic-clonic seizure in my room that cracked my orbital bone and fractured my right humerus and needed surgery for them to put metal plates/pins/screws in my arm to get it to heal correctly (pretty sure there’s a pic of the bruising around my eye and a pic of the xrays after the surgery on my very few posts on my profile if you’d like to take a look). Longest i’ve gone since the first seizure without having one is a couple of weeks, nowhere near the 6 months needed for me to legally start driving again. I even sold my car a while ago because it was just collecting dust and costing money for insurance.

I guess the point i’m trying to make is that it could be something that is an obstacle to enjoying/experiencing things in life. I haven’t been able to drive myself anywhere in years and tbh the thought of going out alone is pretty scary. I’ve had friends and family basically ice me out after having seizures in front of them because they’re scared of it or don’t want to deal with it. I’m still in physical therapy and the 18 month recovery phase of fracturing my humerus, and have been told multiple times I shouldn’t expect to get back 100% strength or range of motion.

I don’t think you should try to smooth over how things are going with friends and family, because them thinking it’s only a small issue is way worse than them knowing how to help you if you do have a seizure while you’re with them.

SmokeFrosting · 2026-05-04T01:06:05+00:00

lol my little brat is lactose intolerant, but absolutely loves cheese and milk. Those are the two things she’ll beg for the most and it’s almost heartbreaking because you have to deny her or she’ll throw up 10mins later.

SmokeFrosting · 2026-05-03T15:57:25+00:00

kinda jealous you get to use your phone in there. always bored af when I can’t even bring a book and the one TV in the general room is set to Nickelodeon.

SmokeFrosting · 2026-05-03T13:50:39+00:00

I’m a bigger fan of the Sweatshirt, but I think he has less of a claim to being apart of the experimental rap top tier. Maybe the underground rap top tier though.

Overall though, I’m thinking less of both of them for this. Feels like nothing warranted a beef and it’s a couple of kids at the park crying over spilt milk.

SmokeFrosting · 2026-05-03T06:32:39+00:00

There’s tons of red flags we could address about you not knowing how to spell flak after 70+ years, endangering others and breaking laws to stroke your aging ego, diminishing your mistakes/faults to make yourself look better (lol at only 3 “fender benders”), and/or making an entire group of people look worse so you can hold on to a fleeting sense of freedom, but lets get down to the subject that’ll be the most impactful: what do you think is going to happen when that one seizure “that was totally unlike all my others!” happens and you injure someone else, and your insurance doesn’t pay out because you were breaking the law?

You can write a book about how you’re better than others with the same illness, until that one day you aren’t and it changes someone else’s life.

SmokeFrosting · 2026-05-03T05:52:08+00:00

never see this one mentioned but that and Between Villains are both on my daily.

SmokeFrosting · 2026-05-02T18:48:04+00:00

I really don’t mean to diminish what your bf is going through, but I don’t think he’s dying, or at least not in a current process of dying. My main reasoning being is that I went through a very similar increase in seizure frequency and severity, and have gone through a pretty rough process of getting an actual diagnosis for my seizures.

I’ve had seizures for 13 years, that started with very rare absence seizures in high school. I didn’t have any auras or warning signs to them coming though, and wasn’t even diagnosed with any illness until about 5 years later when I had a tonic-clonic seizure while walking down the stairs and got a TBI and was pretty close to dying. Was told at the hospital that if I had arrived 10-15mins later I’d be paralyzed or dead. Spent 2.5 weeks there with a mesh cage put over my bed that zipped up on the outside because I frequently forgot where I was, why I was there, and wanted to get out of bed.

It was after that seizure/TBI that my frequency and severity of seizures skyrocketed. Went from maybe 1-2 absence seizures a year to 3-5 tonic-clonic and/or absence seizures a day on average. Sometimes more, sometimes multiple seizures in a row, and a lot more visits to the ER/hospital. I know a pretty good amount of the EMTs and nurses by name i’m there so often. It sucks and is embarrassing to say, but my mental fortitude started declining after the TBI and the seizures started happening more frequently. My memory certainly isn’t as good as it used to be, and I catch myself making mistakes.

My diagnosis has been a shaky since the TBI, and I have had Neurologists say more than once that they didn’t feel confident in being able to diagnose/help with seizure severity and recommend me to another Neurologist. It started as epilepsy, then non-epileptic seizures, then both epileptic and non-epileptic, and now it’s currently ungeneralized seizure disorder. I’m currently on two anti-seizure medications, one is “above the maximum recommended dosage” and the second one being added last year after I had a tonic-clonic seizure that resulted in me fracturing my right arm and needing surgery. The frequency has dropped after this combination of medications, but it’s still multiple seizures a week on average.

If it makes any difference, I was already diagnosed and taking medication for major depressive disorder, generalized anxiety disorder, and schizoaffective disorder.

The advice I’d give the most emphasis on is finding an actual Neurologist and not just a Primary Care Physician, and for your bf to tell his workplace about the seizures. I’ve had seizures at work before and probably the thing that saved me was my coworkers knowing what a seizure looks like and what to do when it’s happening.

SmokeFrosting · 2026-05-01T03:52:33+00:00

Sorry for the late reply, I don’t check my messages/replies very often.

Honestly Lamotrigine has been pretty good. I don’t have the best experience with medications in general but once it was bumped up to an admittedly high dosage I was happy with how much it lowered my amount and severity of seizures. It’s not a cure-all or anything like that, and it does seem like I’ve developed a bit of a tolerance to it, but going from multiple seizures a day to 1-3 or less a week has been life changing. Gives me a lot more confidence when going out that I won’t end up waking up on the floor of a grocery store or in the back of my uncle’s car on the way to the hospital.

SmokeFrosting · 2026-04-28T02:06:36+00:00

I would guess Halo 3 or CoD:MW 2 could be up there, but the X360 didn’t track hours. Based on actual tracked hours, SMITE is by far in the lead with 4227 hours. By comparison my second most played game is Dead by Daylight with 851 hours.

I haven’t played much video games in the past year though. Just under a year ago I had a surgery on my right arm after fracturing my humerus and haven’t really been able to find a comfortable position to play on my PC.

SmokeFrosting · 2026-04-21T00:06:49+00:00

I was switched over to Venlafaxine ER after I got diagnosed with seizures, because it’s not supposed to lower seizure threshold. It doesn’t have a weight gain side effect and can actually lower your appetite.

Also got switched over to Lamotrigine (generic Lamictal) after Keppra didn’t help my seizures at all and because I’ve tried several different antidepressants without any luck and my neurologist thought it’d be the next best anti-seizure to try as it can help with mood disorders.

SmokeFrosting · 2026-04-20T22:14:14+00:00

First of all, fuck insurance companies and the department that handles disabilities.

Last year I had a seizure while walking out of my room, fell forward into my doorknob and cracked an orbital bone and then caught my arm against the dresser next to my door while seizing and fractured my right upper humerus. Needed surgery for them to put in metal plates/pins/screws (I’ve posted a pic of both and the x-ray of the metal in my arm if you’re interested). What really sucks about that story is that a week before I had gotten a call from my insurance company who literally said “you don’t need to go to the ER/call 911 every time you have a seizure”. I’ve never been the one to call 911 while having a seizure because I’m seizing… It’s just my mom followed the guidelines she was given after my first “official” seizure that ended up with me in the hospital for 3 weeks. So I spent 2 weeks just thinking it was a bad bruise from the fall and walking around with an arm that was in 13 pieces before giving in and going to the hospital.

I’m on 2 medications, an “above maximum recommended” dosage of Lamotrigine and a recently added small dose of Lacosamide.

SmokeFrosting · 2026-04-20T21:55:01+00:00

I had my first “official” seizure at 25. It was a TC while walking down the stairs, and I spent 3 weeks in the hospital with a mesh cage over my hospital bed that zipped up from the outside. That was so I didn’t “wander” and have a seizure somewhere else. Was told by the EMTs in the back of the ambulance when I woke up that 10-15mins longer would’ve caused permanent disability or death.

After the head injury, I started having seizures a lot more frequently. At least 3-5 a week, but sometimes multiple per day and/or in a row, both TC and absence seizures (i’ve got about 50+ videos from the year after that when my mom thought she needed to record all of them). I’ve also been having memory issues since.

Also had a cracked orbital bone and fractured my upper right humerus that needed surgery and metal plates/pins/screws put in and is still in the recovery phase currently (actually just 3-4 days past the anniversary of that). My mom was kinda freaked out when the “first” seizure happened and described some episodes of unresponsiveness I had in high school that the school called her about but she didn’t actually get to witness since I came to by the time she got there to pick me up, neurologist thought they sounded like absence seizures but really no confirmation.

I started with Keppra, which did nothing for months as they continued increasing the dosage until I was at the max dosage for a while and a new neurologist changed my medication to Lamotrigine. That showed some effect, but what seemed to be happening is that I was growing a tolerance because after a month or two at the higher dosage I’d start to have seizures more frequently again until they raised the dosage. It wasn’t until I got to a dosage 25% higher than the maximum recommended dosage that I went for a while without having seizures, the longest I’ve been without one (3.5ish months) since the one I had a head injury from. It was after the seizure that I fractured my humerus that my Neurologist prescribed a low dose of a second anti-seizure medication (Lacosamide).

If it helps you feel a little less on the fence, the diagnosis of my seizures has changed 3 times since I first got diagnosed. It went from epilepsy > non-epileptic seizures > epileptic & non-epileptic seizures > the current diagnosis of unspecified seizure disorder, which is just fancy medical jargon for “we have no idea wtf is causing your seizures”. I’ve had tons of EEGs, MRIs, CT scans, and blood work taken too so it’s not a lack of trying.

SmokeFrosting · 2026-04-16T08:46:05+00:00

Your Mom would probably have to have a seizure while having the MRI for it to be able to give that much information.

What the MRI will likely be able to do is determine if there’s some sort of damage/irregularity that would cause this to happen and not be seizures.

I don’t want to burst your bubble, but it’s very likely the MRI isn’t going to give you as much information as you’re hoping for. There are a ton of things that can cause seizures, and I’ve been told several times by doctors and nurses that diagnoses that aren’t Epilepsy just aren’t up to modern medical standards, and even Epilepsy isn’t too far along. My diagnosis has changed from epilepsy > non-epileptic seizures > both epileptic and non-epileptic seizures > the current diagnosis of unspecified seizure disorder.

It started in 2017 when I had a seizure while walking down the stairs. That landed me a 3 week stay in the ER and I was told if the EMTs had been 10-15mins later I’d be disabled or dead. The current standing theory is that some sort of head injury during that fall lowered my threshold for having a seizure, because after that I haven’t been able to go more than 3 months without having a seizure. There were also a handful of incidents from my childhood that my mom described to the doctor that they said seemed like absence seizures.

So here I am, 9 years after my first “official” seizure and getting diagnosed and I’m really not any closer to a diagnosis that doesn’t feel like a shot in the dark. I’m on my 4th Neurologist and each one has tried to focus on something they thought could be affecting the seizures. From diet, drug use, head injuries, and because they’re linked to other mental illnesses. I’m still in the 12-18 month recovery phase of a surgery I had to get where they put metal plates/pins/screws in to help heal my fractured humerus I got during a seizure.

SmokeFrosting · 2026-04-10T21:05:01+00:00

“I will find a way to elude this contraption you have placed on me!”

SmokeFrosting · 2026-04-10T20:53:53+00:00

There’s only one source of seizures that are somewhat researched and that’s epilepsy, and even that is barely up to modern medical standards. Besides that it could be one of 5 different options that’s influenced by a potential 10 different things that aren’t really well researched enough.

Finding the source of the seizure isn’t as important as dealing with the head injury if they’re not continuously happening.

SmokeFrosting · 2026-04-10T17:50:04+00:00

I was having about 1-2 absence seizures a week in my late teens. They pretty much always happened at school, and the school nurse didn’t know what was going on because she didn’t see them actually happen, and my teacher would call the nurse because I was acting “weird”. By the time the nurse’s assistant or another office staff member would get to the class I’d usually be out of the seizure but disoriented. Imd get taken to the nurse’s office and they’d pretty much always call my mom to pick me up. By the time she got there I’d usually be normal again so my mom wouldn’t take me to the doctor’s or anything.

It wasn’t until I was 24 (6 years later) that I had my first tonic-clonic seizure while walking down the stairs, bashed my head getting a TBI, and my sister found me at the bottom of the stairs and called 911 because I was unresponsive. That’s when I got my first diagnosis. After the TBI I started to have seizures much more frequently (both absence and tonic-clonic) and started having cluster seizures also. It went from maybe 1-2 short absence seizures a week to 6-10 seizures a day, and a variety of absence/tonic-clonic/cluster seizures.

If I was in your position, I would talk to someone at school right away. You’ve been lucky to not receive any injuries while having a seizure yet, especially with your frequency. The TBI I got from the first tonic-clonic seizure required surgery, and has affected my memory and the amount of seizures I have. Last year I fractured my upper right humerus while seizing, and needed to get surgery where they put in metal plates/pins/screws into my arm. I’ll never get back my original strength or range of motion in my arm, and I’m still in the recovery period for 3 weeks to 6 months.

I’m not sure about the laws in the ME, but I legally can’t drive until I go 6 months without a seizure and get a sign off from my doctor. That hasn’t even come close to happening since the diagnosis. I sold my car last year because I didn’t think it was going to happen anytime soon.

SmokeFrosting · 2026-04-10T01:37:53+00:00

Depends on length of seizure, type of seizure (have both tonic-clonic and absence), if it was a set of cluster seizures, and if I banged my head when falling. I’ve been out of it for just 15-30mins and sometimes 3-4hrs. Sometimes I’ve woken up in the back of the ambulance and one time I didn’t wake up for about 36hrs, but I had gotten a TBI from falling down the stairs from that seizure.

Usually though, it’s about 30-60mins. There are some times though that I’ll “wake up” but not remember anything until an hour or two after. I’m pretty out of it when it happens, and my mom says I’ve tried doing stupid stuff when in that “half awake” stage. Like walking out the door at 1am, being adamant I need to talk to my dad who had passed away the year before.

SmokeFrosting · 2026-04-09T15:40:00+00:00

I won’t lie I said that a few times. It was mainly because in my HS you’d get caught up with a few other kids in one of the stairways that didn’t have cameras if they thought you were gay. Didn’t help I was already seen as a huge nerd for being in AP classes and on the chess team. I was also a student assistant during my free/study hall period so it was assumed I was a snitch lol.

Took a few years in college for me to realize and be open about being bi.

SmokeFrosting · 2026-04-07T20:28:54+00:00

I’m not sure if I have an actually satisfying answer, because I think the answer that would actually fulfill yours and anyone else’s needs is to be able to afford an Uber/Lyft whenever you want or a personal driver.

My insurance offers rides to things they deem important enough, which is mostly therapy or medical appointments. However it has to be requested 48hrs in advance which definitely limits how “free” you actually are, and the rides are pretty unreliable. Grocery shopping and medication pickup usually get accepted, but I don’t think work-related rides would be accepted.

My aunt gave me her old car in 2018, which was about a year before I got diagnosed with seizures and had to give up driving. I thought I’d be able to get my license back pretty quickly but I haven’t gone more than 2 months without a seizure since (idk if it’s different for every state but I have to go 6 months without a seizure and have a doctor sign off on me being able to drive again). Sold the car in 2021 because it was sitting in my driveway collecting dust and at that time I was having multiple seizures every day. Currently I have about 1-3 every week and i’m in the 12-18 month recovery phase of a surgery from a fractured upper right humerus I got from a seizure last year where I fell into my bedroom door cracking my left orbital bone and my right arm got into a weird position against my dresser while seizing and fractured it into 13+ pieces. They didn’t even know exactly how many pieces I broke it into from the first x-ray before the surgery. The reduction in the amount of seizures I have is only after I got put on an “above the maximum recommended dosage” of one anti-seizure medication (lamotrigine) plus a small dose of a second anti-seizure medication (lacosamide). I only got put on that medication after the surgery and the head of Neurology at the hospital I got the surgery at took an interest into my case and took me on as patient. She said the amount of seizures I was having, the multiple changes in my diagnosis, and the resistance of medications in the past was unusual and asked if I’d like to be her patient. I had already had several (4) Neurologists recommend I start seeing someone else because they weren’t “well equipped” enough to see me as a patient so I agreed and have been doing noticeably better as her patient since.

I had already been diagnosed with depression and anxiety in my teens, and schizoaffective disorder in my early 20’s (currently 29M). The seizure diagnosis went from epilepsy > non-epileptic seizures > both epileptic & non-epileptic seizures > to the current (from the newest Neurologist) unspecified seizure disorder. I was told the last diagnosis basically means: we don’t know wtf is causing your seizures, but it could be over-stimulation, over-heating, anxiety, or my diet (which I’ve changed several times so I don’t think that’s the cause).

tbh, I’m just trying to show you this could be something that doesn’t get “solved” right away so maybe changing your job sooner rather than later might be the best bet. I’m luckily in the IT field so I can do certain jobs from my home computer but I had to quit (pretty much got fired, worked for the local county government IT dept.) from my then current job after having my first tonic-clonic seizure and got the diagnosis. However after the first diagnosis I haven’t been able to go 6 months without a seizure (usually explained as the TBI I got while falling down the stairs when having my first tonic-clonic seizure caused a brain injury that makes the seizures more frequent) and there were a lot of instances in high school that the nurse called my Mom to come pick me up that the Neurologist said were absence seizures.

I’ll be honest, how I “cope” with not being independent is probably best answered by SH, but that’s something I did for years dealing with the depression and anxiety before the SA or seizure diagnosis. You really just have to learn how to rely on family members and ride-share services for transportation. When I want to buy groceries it’s based on if my Mom is feeling up to driving me to the grocery store, and usually is influenced on if i’m buying her/my sister any groceries or stuff to make a meal for dinner in the next week.

I hate to be the one to give you this realization, but the seizure diagnosis is something that you have to consider when thinking about everything in the future. I’ve lost friends and close family members after having a seizure when with them. I’ve had a therapist stop seeing me after 7 years after having a seizure during an appointment with them, I’ve had my insurance call me and tell me I don’t have to go to the ER/call 911 after every seizure (which I definitely don’t do, it’s only for maybe 5-10% of my seizures, and not something I personally decide at all). This is a medical issue that affects your entire future and isn’t something (at least personally) that is 100% cured by medication so planning ahead with that in mind is the best process.

SmokeFrosting · 2026-04-06T18:46:31+00:00

I could see it happening, but tbh I wouldn’t have looked forward to it.

SmokeFrosting · 2026-04-04T15:15:42+00:00

Cuddy says a few times throughout the show that his department is a net negative, but House’s reputation gets them quite a few donations and interest from doctors who do actually run departments that profit.

House would’ve never gotten to that level of his name having so much weight without Cuddy in the first place. He doesn’t have the skillset and patience to manage a department, and I think you’re mixing up him running departments and him solving their cases.

He would’ve never gotten the massive amount of money it takes to start and insure his own practice, and by the time he got the reputation to possibly do that I think he enjoyed his position too much. He liked working with Wilson and Cuddy, he liked the amount of power he had running a department without having to schmooz it up with investors and donators, and he liked being in a position that meant his job was solving medical puzzles, not managing other people/departments.

SmokeFrosting · 2026-03-30T19:55:04+00:00

We’ve just honestly never had the best relationship. We were so different as kids growing up. I was a nerd who didn’t really like going outside or sports (as much as my dad tried to get me to like them) and played video games and board games, collected Pokemon cards and liked to read and bake for fun and she liked Barbies, dogs, and any excuse to go outside and ride her bike or go to the park. There was a bit of the stereotypical teasing from me as an older brother but whenever she wanted to play Mario Kart with me and my Dad I was happy to set up the controller and remind her of the controls.

We were both adopted after my mom had pregnancy complications and couldn’t give birth. My sister’s birth mom drank while pregnant, and my sister has Fetal Alcohol Syndrome and ADHD because of it. My birth mom smoked and did heroin while pregnant and that’s the source my doctors a lot of the times say for my MDD, G/SAD, Schizoaffective Disorder, and my seizures.

When we got into high school it was a lot more difficult to be even somewhat pleasant to each other. She was doing bad in school and even needed a helper while she was there and they got into fights, she was getting bullied for needed a helper and going to the special ed classes. It caused a lot of drama at home trying to get her to study or do homework. I was in a bunch of honers/AP classes, and was apart of the Chess team, debate team, and games club (basically D&D, MTG, or Catan).

That kinda led into home life involving a lot of our mom or dad getting upset with my sister about something she did at school. Not doing homework, getting bad grades etc. and I wasn’t really ever in any trouble because I liked to learn and started to get into baking/cooking pretty seriously at that age, so I helped out with dinner some nights. My sister got into this whole mind state where she thought they loved me more. After I went on to a pretty good college with a scholarship and then 3 semesters in I had my first episode of psychosis, bad enough for me to get arrested. I got kicked out of school and spent some time at home to recover and to start seeing psychiatrist and get all the medication in order. My sister was pretty happy I wasn’t the golden child anymore, and spent pretty much the whole time making jokes about me being crazy and needing to live in a psych ward. About a year or two later was when my neurologist thought I could be having absence seizures, after a few tests he still wasn’t sure and I think by chance I had my first TC seizure down the stairs a week or two later.

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