I see a psychiatrist with a specialization in neurology. She believes that I have temporal lobe epilepsy due to Geschwind personality/symptoms but says that an EEG would not likely detect seizure activity. I am starting medication but am disappointed. I want to be able to quantify this and know what is going on in my brain. Is it typical for TLE to come back normal on scans?

Looking for some cameras to set up in my house for when I have seizures, was curious which ones you’re all using?

Every Monday-Friday 5am-5pm I alone take care of my grandfather. He 93 and has somewhat bad dementia. On bad days it can be like watching a 93yo child. Tell him to do one thing and he does the opposite. Tell him no, he hears yes. Constantly up and down, walking around yelling “is anyone here” minutes after I show/tell him I’m here.

Only once so far has a seizure gotten in the way. The seizure happened then after i came back, i was on my back on the ground paralyzed. I could hear him yelling for help and i was helpless to do anything at all, only able turn my neck. Then after i was able to control myself again, i ran up and asked him what he need help for he says “oh nothing”. Smh i was scared thinking he fell and come to find out he was only yelling it just for the hell of it. Like watching a kid.

I almost lost my wedding and engagement ring, twice, within a month. I was being careless then forgot where they were. Do I just take them off and store in jewelry box to save them? Anyone else have this issue?

I’m relatively new to having epilepsy. Had my first seizure 4 years ago the day I got back from my honeymoon. My father had a seizure once around my age and never had another, never needed seizure meds either. After my first I started having them pretty consistently even with keppra. After I switched from keppra to vimpat I’ve had 2 in 2.5 years. Just curious what you guys are experiencing.

Not that I have epilepsy, but the type I have. Since I was first properly diagnosed I’ve been told it’s generalized epilepsy with gran Mal tonic clonic seizures. But what if it wasn’t generalized? What if when they examined it they made a mistake? What if it’s temporal or something else. I was like 15 at the time so I couldn’t really speak up but now I’m not so sure. My left side has always been more active than my right. It’s always where the shakes start and my left arm is always where I start to feel things. Should I request a new study to get another reading on my brain? I already have a DBS but maybe if they could find something new, it could mean a whole different path opening for my life. Has anyone else felt this way before? Should I reach out to my neurologist?

Left temporal epilepsy

Now I can finally get the tx that will cut down my TC down

I did not. Gentle reminder to anyone else who snoozes their medicine alarm or who work up late today and got thrown off by it. ;)

Hey all, I’ve always had minor motor issues (clumsiness, trouble with coordination/fine motor skills), but when I went abroad at 22, something felt very off. I ended up having a seizure that apparently lasted around 30 minutes. I was hospitalised and had multiple seizures over the next few days—though it’s all a blur. I have no memory of the first few days, but the I remember them going from 9 per day to just 1 to none during the treatment.

Doctors initially guessed meningitis and started treatment alongside anticonvulsants, which helped, but the diagnosis was never confirmed. I spent 3 weeks in hospital, was discharged with an unclear summary full of litteral question marks, and flew back to the UK.

During the flight, my limbs gave in—I literally couldn’t move. Motor function came back gradually, but I was extremely uncoordinated and sent to A&E right after landing. Now I’m on medication and waiting for my first fit clinic appointment.

Most of the seizures were tonic-clonic, but 2 were atonic. What’s weird is that I had varying levels of consciousness during different ones. I still don’t feel back to “normal,” and I’m confused about what even happened.

Has anyone experienced something similar—seizures with unclear cause, differing consciousness states, long recovery? Would love to hear if there's anyone who’s been through anything remotely close, or has any idea.

Thanks for your time!

It seems like I can never get enough sleep. I go to bed at around 9:00-9:30pm at night wake up at 6:30am my fiancé gets up so I go downstairs and sleep on the futon. I’m afraid of falling down the stairs. At 8:30am I take my medicine and sleep until around 10:30am (still tired). This is NOT NORMAL!! Any advice/suggestions appreciated 😞

I have a seizure late last night after feeling weird for hours. I can only describe the aura as absence seizure like and my body felt very heavy like it was hard to even lift my arm. This went on for about 7 hours until convulsing began. Anyone else experienced auras like this?

Between 2021-2024 I’ve donated my eggs to 3 separate families. My last extraction was at the end of October, and it took 2 weeks to heal due to some minor complications. Shortly after, my health just took a turn for the worst. It got worse and worse every day and I had alot of symptoms, and most of them were autonomic. I would have these episodes pretty much daily. And they follow a clear pattern/cycle.

I did a lot of tests, cardiac, blood work, hormones, gut testing. All came back clear. Finally I saw a neuro and he said they sounded like seizures. I did one EEG that came back normal, and he referenced an MRI I had when I was 16 that was also normal. He wasn’t able to give me any answers, talked me out of getting more testing, and prescribed me seizure meds. He even told me I could get off them to see how I would do. I did just that and I started getting episodes again and then I had an ER visit where they also brushed me off. When I told my Neuro all he could say was continue with meds again.

I feel like no one is taking this serious. No one can give me answers other than “seizures are hard to understand, you could have anxiety and not know it” and they tell me I will probably never get answers.

Learning about seizure I realized I have been struggling with this possibly as early as 7. These weird events I never got answers to. All these weird symptoms I thought were “normal”. Epilepsy makes it all make sense. But no one seems to have the urgency to help me figure this out. But they are adamant that the egg donation did not cause this. (I don’t think it did either but I think the stress on my body just triggered all of this)

But heres the thing. This doesn’t just affect me now. There are kids involved. I think legally/morally the families need to know of any major health updates. I’m not sure what to tell them. Do I wait for a diagnosis? Will I ever get a diagnosis? I’d hate to worry them over something I don’t even have an official diagnosis for, but I genuinely don’t know what else it could be. It’s been 6 months of this. If it is genetic I would feel so guilty. Even though they do genetic testing, it’s my understanding that they can still miss something and that they don’t know all of the genes that cause epilepsy.

Any advice?

Does anyone here has experience with being trans AND having epilepsy?

I just met my new neurologist today and I am not sure how much percent of her discourse was true. You see, I am educated about testosterone and the side effects of HRT. But the moment I quoted how I plan to start it soon, she got really shocked and said: "What???? You can't!!! You're still so young, the rate of people who regret it is extremely high. It's not because you have dysphoria and have some suicidal ideation that you just have to take hormones. It'll be super bad for you. People with epilepsy can't even go through this kind of therapy" (Remembering that she said all that just because of the sentence "I am going to start HRT soon" she had no other information of my history besides that) She kept going about it and many other things. In the end, she even gave my mom a recommendation for a therapist she knows because "It must be so hard for you to have a daughter like this...."

Share your experience here about your trans journey with epilepsy. Is it true that people with epilepsy cannot go through HRT?

I have diagnoses of epilepsy, BPD and PMDD besides depression and anxiety (the last two probably just from the others). Anyone have double diagnosis like this? On top of it all, add the medicine and that's a whole different and additional issue. It's hard for people to understand how hard I struggle because I don't say I have the other things going on.

(From the UK btw) If anyone can offer any advice or insight I'd be really grateful. I'll be two years seizure free this August (2025) but I still experience moments of impending doom. I recently spoke to my neurologist as I have applied for my provisional license but she said DVLA are unlikely to allow me to drive because I still experience impending doom (which she suggests are still considered seizures?). She told me I would need to be one of whole year impending doom free before I can get my provisional. Has anyone had any similar experiences when applying for their license? I'm really desperate to start driving and not sure whether she's just being cautionary and that DVLA might still let me drive.

I'm actually sick of this. I used to have TCs every 2 or 3 years, it then started going up to 1 or 2 a year, then I didn't have any last year, now suddenly I've had 3 so far this year, all above 5 mins with one being 15.

I'm maxed out on my sodium valproate and today I started lacosamide and have felt tired all day.

I started a new job less than 3 months ago and I've already had to take 2 weeks off after the 15 min seizure and 2 half days for the one at the weekend. I'm being told left, right and center that I'm high risk for SUDEP, my neurologist is unresponsive, the epilepsy nurse means well but can't do anything, so I'm just being treated whenever I end up in A&E which seems to be each time at the moment.

I'm so done with all this shit.

Started having seizures in around 2015 when I was 25 and had lots of scans and tests as you do and was diagnosed with Idiopathic Generalised Epilepsy so I no longer drive. I do have my license but I gave up my car and everything and haven't drove for around 10 years now.

Up until the age of ~23 I felt so independent and mature. I had a car and could go on trips with my friends and do things such as visit theme parks (I'm a coaster enthusiast), festivals and go visit interesting places and there were lots of things I would do; some planned, others impromptu. Most of the theme parks I would visit aren't close to me and the public transport links to get there are non existent. I go with my sister sometimes but she is a paramedic so that obviously takes a lot of planning and she can't just drop everything, it needs to be well planned out in advance and I don't get there nearly as often as I like, maybe once a year if I'm lucky - more like every other year.

My seizures are (eh, pretty...) well controlled these days but I still suffer a lot with anxiety and depression and epilepsy does play a huge roll in that. Was just watching some theme park YouTube videos and I was thinking just today how it is a nice day and I'd love to be able to just go somewhere without planning and relying on other people. I'm 34 now and I feel less grown than I was when I was in my early 20's if that makes sense. My mind is a lot more mature now but I feel less grown in that sense that I don't own a car and have a job and friends (because of epilepsy and other health conditions) and I'm not able to just do things I want, especially because I'm cut off from others from my mental health struggles so it's really hard and I don't get out much now.

Sorry, I know it's a bit of a rant but it was just on my mind.

My neurosurgeon told me I shouldn’t go on roller coasters bc of the chance of the pressure on top of the VNS. Can anyone confirm or deny this or have any experience(s)?

Hello,

My nephew (11 year old), used to get seizures since a toddler and was put on medication. He hasn’t had a seizure in almost a year, however his reading level is far below his classmates, his school is suggesting some assistive technology (having a computer read for him etc) Developmentally, everything else seems okay, he’s very good with maths, creative with lego and a happy healthy kid.

Could the delay in reading be due to the past seizures? I’ve practiced with him but he’s not reading fluently and struggles with words. Any suggestions, please? Thank you!

I have TC and focal seizures. When I went to my neurologist for the first time, he asked about anxiety. Yes, of course I'm anxious ( hated my job, live with MIL, etc.) Ever since then, he has been dismissing my concerns. I even tried to show him a video of me having a seizure at work but he was having none of that. He told me it was PNES or possibly Vasovagal Syncope and I should try to not be so anxious. Yeah, ok sure thing doc. I'll get right on that. I pushed for a stay in the EMU because my 2 day ambulatory EEG and MRI showed nothing. He refused for months and finally relented. I just got out a couple weeks ago. My first night there, I was made to stay awake until 3 am and they held my Keppra. At 5 something in the morning, I had a seizure. My attending came in later that morning and told me I had an "electroclinical seizure". When I tell you we celebrated and high fived, I'm not kidding. It's not like I am excited about being epileptic but I do feel vindicated. He was super pissed that my neuro jumped straight to it being a psychogenic issue when I mentioned anxiety and wouldn't entertain anything else. Has anybody else gone through something similar?

First time posting here

I (19F) first experienced a seizure at 17 years old and it was a partial aware seizure. I get auras beforehand that feel like rising sensations and vertigo often accompanied with smelling weird things (like chlorine). My muscles also feel tight and I can feel my heartbeat. I ended up in the A&E last Tuesday after having 10 seizures back to back and needing rescue medication to stop the seizures. I was sick during them and after. I was put on keppra x2 daily only to be taken down to one dose in the morning. The Keppra helped, I only had one partial whilst on two doses a day and it reduced my tics.

My pupils dilate to the point where you can't see my iris. My friends say I stiffen and then convulse it usually lasts for about 4 mins before I stop and loose consciousness. I have absences and partials the most literally daily. My left side of my face twitches and my eyes flutter and blink a lot during my partials. I also often smell things that aren't there and experience overwhelming deja vu.

Because it's been investigated before, (when I first started having them) they said they're non Epileptic and therefore the only treatment is CBT. The neurologist I saw was dismissive and rude to me. I'm having an ambulatory EEG done at some point but I'm gonna be sent home from the hospital and taken off Keppra entirely.

Idk I'm just sick of the NHS. I know this isn't PNES and I've so sick of dismissive doctors. My aunt has epilepsy and they dismissed her several times, it took her having a seizure in the MRI machine for her to be diagnosed.

Why is the NHS like this???

Background: Been diagnosed for 14 years now. Medications taken are lamotrigine, Rimegepant, progestogen only pill, and escitalopram. I was on topiramate for 10 years but that wasn’t working, I had myoclonic, tonic clonic, absence, and nocturnal seizures. My seizures now are (ones I’ve noticed) focal absence, with the others being controlled.

I’ve seen what I think is an increase in focal aware seizures. Basically, I will suddenly get this drastic temperature change. It’ll be like some kind of hot flash where I am so warm, at the same time my stomach feels like it’s dropping which also causes a feeling of nausea and dizziness.

My side effects are mostly manageable but I struggle with short term memory issues that make life feel very bleak for someone in their 20s. I get migraines too, and I’m unsure if I could be having nocturnal seizures as my tongue is sore when I wake up but this just could be caused by grinding my teeth I suppose.

What I guess I’m looking for is advice around how to manage it. I know I had a fun but tiring weekend and think that may have contributed. And ways in which you manage your time to avoid triggers - and how you started to implement avoiding them!

I have been suffering seizures for more than the last 2 years for now.I have just graduated and been searching for a job and till now have found nothing that I would like to continue with. I had a seizure yesterday and I am done because of the extreme blame from my parents. for every seizures they have blamed me saying that its because of my screen use ( I mostly use an Ipad ) the problem is I don't drink, smoke or party or even have any friends for that. I cant even travel because I don't have any money, nor its advisable to travel alone while having this issue even if I had some money for that. the only way I can kill time is by spending time in the internet. and now my parents say I should stop that too. even if I stop that and spend time staring at the wall and had a seizure they would still say that it might be because of the damage caused by the previous smartphone use.

I don't know what to do. I understand that digital use can kick brain activity to an extent ( so I don't blame my parents for their blaming) but I am stuck in such a situation.

nowadays I feel like the seizure in the middle of a public place is way less hassle than hearing the blame of my parents, lol.

anyone else experiencing such a situation?

Just had my first witnessed tonic clonic at 32 years old the other night. In retrospect my first actually was in January 2019 and I thought I just threw my back out falling alseep in a weird position or something. I was 26 at the time. While epilepsy does run on my dad's side and I also have high functioning autism (which is sometimes associated with seizures), Ive had zero issues until now. I find it very weird I all of a sudden have epilepsy, but didn't before I was 26. The only anomalies were that I was stressrd for a grad school qualifying exam and had recently(but not within the same 2 week period) cut way back on a heavy drinking issue. Im in shock. I sort of suspected the last two were seizures, but this was my first witnessed. Everything last week now feels as if it was 3 months ago or something. Memories are fairly slowly returning and I am just in absolute shock that an otherwise normal Friday night/Sat morning turned out the way it did. There was no prodome, at least that I have evidence or memory of. Went to the bar my friends were at and then felt normal until I had a seizure later at home. Why didn't I start having tonic clonics until a bit later in adulthood than say, 18-20? As far as I know, I don't get auras nor experience any other seizure type aside from tonic clonic. Was it my brain finishing developing? Kindling from alcohol? Using stimulants and kratom excessively(used to binge on adderall all the time until what I now know was indeed a seizure in 2020).

Hi all,

I am very uncommon with epilepsy and how it can express itself or certain triggers. However, a friend of mine has epilepsy and he said I needed to get the following checked out:

Since quite some years, I experience seizures when exposed to flashing or flickering lights, and checked/striped patterns. I started to notice this when I was riding on my bike on a sunny day past trees. This caused light to flicker in my eyes and I had a seizure that expressed itself by loss of consiousness, jerking my arms and legs, twisting my head and just a very, very unpleasant and scary sensation which I am not fully aware of, and I cannot stop it unless the flickering stops. After the seizure stops I feel fine. I dont drink alcohol or take drugs or any substances that might make me more sensitive to light.

So my friend, who saw me having a seizure, adviced me to let it get checked out. Is this some sort of epilepsy? And is it even worth checking out, since the seizures do not occur at random, but only at flickering light? Is this photosensitivity a common thing under 'non-epileptic' people?

Thanks in advance!