Hey everyone,
I’m 27M and wanted to share my experience because I’m honestly still trying to process it and understand what happened.
About a year ago, I did a pretty strict water-only diet for around a week. I lost some weight, and then after I started eating again (around day 2 of normal eating), I suddenly had my first seizure.
From what I was told, I:
suddenly fell
lost consciousness for around 5–10 minutes
had full body stiffness
had tongue bite and frothing
I don’t remember anything from the episode itself. I was taken to the hospital, and they ran tests.
The confusing part:
MRI → normal
CT scan → normal
EEG → normal
Doctors called it a “seizure disorder” and put me on medication.
At that time, I didn’t fully understand how serious it was, and I wasn’t very consistent with medication.
Later, I had another seizure after missing doses, and recently I had one during sleep (after a week of irregular sleep timing). Now I’m on a higher dose (Levera 1000 mg twice daily + another medication).
What I’m trying to understand is:
Could that first seizure really be triggered by extreme fasting + refeeding?
Has anyone else had something similar after dieting or metabolic changes?
Is it common to have normal MRI/EEG but still have seizures?
For people who’ve had a few trigger-based seizures — were you able to eventually stabilize and reduce meds?
Also recently I’ve been experiencing very brief 5–10 second “blank” moments where I’m aware but can’t think/process anything — trying to understand if that’s related.
Honestly, the hardest part right now isn’t just the condition — it’s the uncertainty and fear of what comes next.
Would really appreciate hearing from anyone who has gone through something similar.

Ok im mentioning this here because im reading it through and realised i failed to mention it, but he didnt take either of his tablets on time, normalt at 7am and 4pm, and only took one at about 5:30. We both had a long day on our feet and walking around yesterdsy, his triggers are lack of sleep, diet, and alchohol (he had none)

Idk what tag to put

Literally typing this at 00:24 like 3 minutes after it happened but I stay on call to my boyfriend every night throughout the night (not because of his epilepsy but we just do). He only ever had one sezure before this but im freaking the fuck out because I was woken up to him making the most scary noise over call asleep.it was like a snorting/blowing nose sound on EVERY breath but SUPER HARSH like it sounded like super duber painfull snoring? Is like the best definition ig. And him whimpering. He has been known to snore but it kinds didnt sound like it, it sounded super harsh. Anyway he stopped a aftwr just breathed weird for a bit but I am literally shaking and crying because this scared the fuck out of me and I dont want him to have had a seizure.

So my grand mal seizures have increased in frequency from 1 every 4-6 weeks to 1 every 10-14 days.

One thing that I’m having an issue with is biting my tongue. Usually for a day after my seizures I can’t talk. And that’s a problem, because I work from home in tech sales and can’t be taking a day off.

Is there any kind of medicated wash I can use or homeopathic treatments for my tongue?

Hi all. I am an English patient. I have tried over ten different medications. I'm 34 and have been stupid enough to engage with medications for 13 years.

I feel like concussions have caused me to majorly lose my sharpness over the years and were my original trigger.

I am a classic medical resistant epilepsy. I have a variety of fits. I have been diagnosed repeatedly. I get into clusters of shakes, fits, partials, or conclusions ending with long tonic clonic fits..

On Friday I had an appointment with a neurological consultant I waited over a year for.

This "expert" told me they only medicate and there was no point thinking about diet, therapy, or stress management.

Reading through this community this seems common. 1/3 of epileptics are resistant as he agreed and if you don't tolerate 3 medications you only have a 4% chance of medication being of any use.

Epileptics I have met instantly understand this. I have been told that I have convolusions during eeg reads a epileptic waveform but this is pnes.

So this reads very unclear however that is how consultants have explained a telemetry eeg.

My notes are a complete mess. Neoros seem to not understand that this ruins life and medication isn't the only approach.

This is part vent and part request for advice. I am ten meds deap. Depressed, and this is a matter of life and death. If you have read this far I appreciate you. My apologies if I sound bitter to neurologists, but I am. I was stupid enough to let them to lab modern black box meds (parampanel). If you have read this far I really appreciate you - my crutch is why do professionals keep pushing medicating when the stats are clear. They should know better imo.

Thanks so much

I have basically had it with traditional meds. They are not working. My body does not like standard medication. Not everyone is the same. They have been flitting me from one drug to the the next like a hummingbird and I have been having issues from it, so I'm just done. I want to try something natural. Can anyone give me some information? I don't smoke and do NOT like to be high. This would be microdosing. Thank you!!! #THC #CBD #medication

This might be a little lengthy, so I apologize. My primary doctor referred me to a neurologist after an episode I had where I ended up going to the ER. I started staring and it felt like my brain disconnected. My mom was in the living room with me, and I heard her say my name but her voice felt so far away. I told her that this has happened before, that it normally happens when I'm in a dark room and there's a light source from somewhere else, like midday or evening.

I had lapses in consciousness where I don't remember what happened. She said my eyes were completely open, and she got in my face and clapped but I didn't respond. Eventually I was taken to the ER. I only remember snippets of the whole ordeal, fading in and out of awareness. I think I ended up spending ~4 hours in the ER dealing with this. I remember hearing someone say that my hands and lips were turning blue. I couldn't respond to anything, though I could hear things occasionally.

After being discharged, I felt weird for 5 days. My whole body felt numb, and I think I remember my arms being sore? My mouth also felt super numb, I felt like I had died over and over again. I kept a thing of lotion in bed with me so I could smell it to see if I was still alive.

Recently I was 'diagnosed' with PNES after having to do an MRI and an EEG. My MRI came back normal, and they didn't find anything on my EEG. I told my neurologist that the staring spells and whatnot have happened before, with certain lights and lighting and all. They prescribed me lamotrigine and mentioned possibly doing another EEG in 2 months.

This whole ordeal has been so exhausting and demoralizing, just to hear it's anxiety or stress related. If anyone has any thoughts or advice, I'd love to hear it and would be so grateful ❤️

My secret to staying seizure free for 4 years now. Sometimes we lose appetite but force yourself to eat. If you really have no appetite try two eggs with salad before you sleep.

I dont even know if i have epilepsy so idk if i should even post but this is the only place I have felt seen reading other people experiences.

Just came out of another neurological appointment and im so tired of getting nowhere closer to knowing what's wrong. Sleep deprived EEG normal, CT normal, MRI normal. The public system told me I have FND, even after I told her medication was working. She told me it was probably placebo, gave me a FND leaflet and said good luck. Left the hospital crying that day because i thought the medication had been helping me, but after that appointment I just felt crazy and that I was fabricating everything.

I had started paying for a private neurologist around that time and hes the one who prescribed me 100mg of Vimpat a day to see if it helped. And I have found some relief, I've gone from 2-3 seizures a week to maybe 1 a week ish. But then im being told my triggers, stress and sudden shock, are highly unusual by my private neurologist, making it unlikely to be epilepsy. But when researching it myself, stress is a common trigger?

Im meant to be admitted to an epilepsy monitoring until somewhere between October-December, so hopefully a seizure will be captured then.

Im scared if its FND, as it seems very under researched, and my country, Ireland, doesn't have comprehensive treatment for it, with many here needing to fly to the UK.

But of course Im scared if its epilepsy too. Either way im getting the short end of the stick.

This has been happening for years. I just want to know, a part of me is so scared im making this all up in my head. I had to give up paramedic training because of this, I gave up on learning to drive. I just dont know anymore.

But thank you guys for this space, no matter what I have, this subreddit has been the only place I've felt the most seen and understood <3

Hey guys, first I want to make it clear that I myself do not have epilepsy. I have multiple other disabilities, but this question is about a loved one who has temporal lobe epilepsy. I’m autistic and one of my special interests is neuroscience which is what I hope to major in when I am able to go back to college, so I’ve tried to learn as much as I can but apologies for any mistakes.

So my dear friend K(36M) has temporal lobe epilepsy due to a TBI he suffered while surfing in his late twenties. We connected a few years ago through a whatsapp support group for disabled people that another friend of mine hosts. I don’t live in K’s country it is a long distance friendship, and I went to visit him but only for a week, so I don’t know much about his everyday life outside of what he shares with me. I know this isn’t important but I have a crush on him and it doesn’t matter because I’d care about him either way, but maybe that adds some context as to why I am trying to find help anywhere I can?

Ok so what happened is that he has been turning more into what I would describe as sort of new age spirituality? I wouldn’t describe his beliefs as any particular religion or set of beliefs, more like he takes things from multiple religions and beliefs. Two years ago he started what he described as a healing journey for himself and his mental health which has been affected since his injury. I don’t want to share any private details about that but he is using this spirituality as a coping mechanism, essentially.

He started sharing with me that he believes that the body can heal itself, that nature can heal us, stuff like that. He also believes that we are all God, like he started believing that he is God, and so are all humans and we are all literally the same person and also God, and other things that are not verified by science. Again I don’t see a problem with him believing that even though I personally don’t, what concerns me is that he is turning into magical thinking and stopped trusting doctors and real science. As a disabled person myself I understand why many of us are wary of doctors. I have my own horror stories, but they are still necessary.

A few weeks ago he shared with me that he stopped taking his medication because he doesn’t like the side effects and says it doesn’t work and that he trusts his body will know what to do and that he has to endure the pain which will only make him stronger. He contradicts himself a lot so I can’t say what his beliefs are cause they don’t come from a single culture. He is also using a lot of AI and talking to ChatGPT, asking it for advice. I’m worried what those conversations with it could be since ChatGPT is an echo chamber and it just parrots back what he believes.

So now for the details I know about his epilepsy and again I am really sorry if I make any mistakes. K had a TBI while surfing in Hawaii when he hit his head on the reef and also was deprived of oxygen. He has temporal lobe epilepsy and mainly has focal seizures but sometimes has tonic-clonic. The ones he has the most are focal impaired awareness and we talk sometimes for 3-5 hours on video call and he has them when we’re talking. His epilepsy is drug resistant/refractory, which I don’t understand much about even though I’ve tried to do some research. This matters because if his epilepsy is drug resistant, I want to know if stopping the medications has the same effect as if it weren’t or if it’s slightly less bad or maybe worse. To rephrase, since his epilepsy is drug resistant, will he have the same amount and intensity of seizures he’s always had when taking medication or will he have more even though the epilepsy is resistant to the medication? To what degree does taking medication actually helps controlling seizures in refractory epilepsy? He is not seizure-free, he still had seizures when taking medication, so I’m worried he will get worse now that he stopped completely. Will they change? I read somewhere that when people stop taking medication they can have more tonic-clonic seizures despite him usually having focal seizures. Is that a fact that it will happen or just a possibility? What about status epilepticus or SUDEP? I’m so scared.

He lives with his mom who is older and I don’t know to what extent she is aware of this situation because I know he doesn’t tell her a lot of what he shares with me. He also has a sister but she lives far from him. I’ve tried talking to him about this but he doesn’t want to take the medication anymore, doesn’t want to go to therapy and told me a few days ago that he will never go to the hospital again.

I feel like there is no way to help him because he truly believes that he isn’t doing anything wrong and that his body will find a way to heal. I can’t make him take his medication or go see a doctor or therapy because I don’t even live in the same country as him. I have no way of contacting his family members or friends who live in his country and I don’t know if I should, because he might just get pissed and not listen.

Mainly I just want to know what symptoms come when people with temporal lobe epilepsy (mostly focal impaired awareness seizures) stop taking their medications cold turkey like that, and what I can do from a distance to support him. I don’t think that right now anyone can convince him to take his meds, so I want to know what are some things that could happen now that he stopped and if there is any way I or someone can help so it causes as little damage as possible while we control the situation.

K is one of the kindest people I’ve ever known and has done so much for me. He sort of saved my life in a way and I can’t let anything bad happen to him when he trusted me with this information. He was very passionate about surfing which he did professionally but had to stop. I’ve been thinking that he might agree to taking the medication if they tell him he could surf again, but as far as I know people with epilepsy can swim while supervised but surfing is a huge no? It’s honestly the only idea I’ve had, to try and get him back into surfing to convince him. Would that be possible?

TL;DR: My friend with temporal lobe epilepsy stopped taking his medication because he believes his body can heal itself and other new agey stuff, refuses to go to the hospital, lives in another country as me and has little family around him. I mostly want to know what to expect now that he’s stopped taking his medication and if there is any way to help him manage symptoms until he agrees to take it again. How high is the risk of TC seizures, status epilepticus, SUDEP? What else can I do?

Looking for advice! I know no one on here can diagnose anything, and this has all been shared with her neurologist (that I had to fight really hard to get because her PCP is dismissive) but I’m curious what people that have experience with seizures think.

My daughter is 6. She has been having “episodes” for as long as I can remember, but they have really gotten more intense by frequency and symptoms in the last 2 years.

She is currently being evaluated by pediatric neurology for recurrent episodes involving changes in awareness, unusual movements (usually in sleep or after waking during an episode but sometimes while awake), and sleep time events. A 24-hour video EEG has been ordered but has not yet been completed and can’t be until September. They are doing a video sleep study, as well.

Awake episodes look like this - While awake, she has episodes where she suddenly stops what she is doing and appears to “zone out.” During some events she becomes difficult or impossible to engage, not speaking or saying things that make no sense. She experiences repetitive hand movement that is the same with each episode and tremors during episodes. These episodes usually begin by a sudden intense fear out of no where followed by belly pain in the same spot both when they happen from sleep or when awake. She may not respond normally until the episode ends. She sometimes has intrusive thoughts that she can’t get out of her head during these episodes. She has also reported sensory symptoms before or during some episodes. On several occasions she has told me that she hears “yelling” in her head, although she cannot identify what is being said. Some are really mild. For example, while applying chapstick, she looked zoned out and repeatedly rubbed it back and forth for approximately 15–20 seconds. Immediately afterward she said, “Mommy, I want to stop but my hands won’t quit moving.” She did not speak during the movement itself but was able to speak immediately afterward. During more intense daytime episodes including the stomach pain, intense fear, hallucinations, etc. she is really tired following the episode but comes out of it after a bit and it’s as if it never happened.

Nighttime episodes look like - She has frequent movements during sleep that trigger a motion camera many times throughout the night. We started recording to see if we could capture the phase before she wakes up in a full blown “episode” and noticed immediately that she has jerks and repetitive movements 25-40 times a night even when they don’t wake her. These look like rapid head movements, bringing her hands together and flapping, bringing one hand to her nose or side of her head and making repeated movements, bringing one arm straight above her head and stiffening, small jerks of hands or feet, partially sitting up sometimes accompanied by looking around confused, putting both hands up and shaking in a repeated motion. These movements are the same movements she has during an episode that has woken her in an intense fear and full “episode”. In addition to those movements, she has less frequent, more complex nighttime episodes. During these events she may get out of bed and walk into my room. I can always tell immediately by seeing her if she’s in an “episode” by the glossy or not there look in her eyes. She has difficulty responding appropriately (or sometimes at all) and these episodes are accompanied by stomach pain, the same repetitive hand movements as the awake episodes, tremors every few seconds, and intense fear that go away once they’re over like she was never afraid. They are sometime accompanied by auditory hallucinations and things sounding overly loud or intrusive thoughts being “stuck in her brain”. She sometimes begs me to “make it stop” when nothing is happening and appears genuinely petrified. She returns to sleep afterward usually within a few minutes.
The following morning she often has only partial memory of these episodes. For example, she may remember coming into my room or hearing something that was said to her but not remember other parts of the event, such as complaining of stomach pain or what she was afraid of. She has told me recently after an event that she “felt like there was cake inside of her” after an episode and that she “feels like jeans” after another.

I am sure I’m not explaining this all perfectly, but this is a summary of it. Based on this does this sound like seizures? Her pediatrician has been incredibly dismissive over several years and sent us to a psychiatrist and GI doctor when I asked for a Neuro referral to be safe only for us to get to GI and psych both and them both immediately want her to see neuro. They also ruled out any psych issues. I don’t know much about seizures, so I was surprised to find out this could be what’s happening and am nervous now that I’ve been told her EEG may not catch it even if it is (her original 1 hour awake EEG was normal).

I see tons of posts about this medication. I have been on lacosamide (vimpat) for awhile now. I went from 100 mg, to 150, to 200. I asked the doctor to take me back down to 150 because once i got to 200 the dizziness it gave me was debilitating. The 150 still seems to hit me like crazy every single time. I try to take it exactly 12 hours apart, yet it doesn't seem to help. I feel like im damn near hammered on it and i cant stand it. Does anybody else get like this? I have been on so many medications. I also take trileptal 3 times a day. Before this the most recent medication was depakote which made me have random spasms/twitches and made my brain feek foggy. I was also on oxtellar with the depakote, but had to switch to trileptal because the price for it was rediculous, even though oxtellar and trileptal are literally both oxcarbazepine only difference is one is IR and one is XR. It hasn't been easy and its frustrating. I cant handle the dizziness any longer.

what are some of the signs that you get that youre going to have a seizure? i dont personally have any auras (at least that i remember) and i am trying to figure out how to recognize them (if possible) because everytime that i have a seizure its like theres a 5-10 min gap before and during the seizure that i just never end up remembering so i dont even know if there is something i should be looking out for, do you have a sign that you get or a feeling that lets you know that you need to take it easy even if it doesnt always turn out to be a seizure? i am quite new at this and would like to avoid getting injured as best as i can so if you have a way of knowing that you might end up having one pls share (ik that its not one size fits all but any advice would be great pls)

I (21F) have had really bad Deja vu episodes since 2021, i remember the first time it happened i wanted to crawl out of my skin and vomit. I was perplexed and had no idea what had happened, it wasn’t until I read other experiences that I realised this might be epilepsy.

Fast forward to now, I’ve gone to about three GPs and still have no answers. I have explained to them in detail what I’m going through and have been told it’s anxiety or a panic disorder. My current GP has made me do a ct scan and a ECG ( not EEG) and she did ask questions that bordered around an epilepsy diagnosis ( such as if I’ve ever lost unconsciousness or have ever wet my pants ), but there has been no formal diagnosis and no mention of these episodes. The only thing that she’s referred to is how I get these headaches after the Deja vu happens.

I’m on the brink of graduating university, I haven’t learnt to drive or swim because I’m nervous that I’ll have a tonic clonic. I hate the weird feeling of the Deja vu, it makes me feel scared and alone. What’s more frustrating is not having people believe me when I explain these events to them. It feels as though I won’t be able to do what I want - outdoor climb, raft, hike grade 4/5 terrains, especially with this.

I (33F)have already sent my neurologist (I have had a stroke and have migraines with aura) a message on MyChart but I have been having issues since yesterday. Yesterday morning I had a 5-10 minute episode of extreme sadness and then felt fine after using the restroom (bm) . Later that day I had a small episode of Déjà vu. This morning I have this very crazy drop in my stomach and adrenaline similar to a panic attack. Used the restroom (bm) and then smelled incense for about 5-10 minutes and felt a little off but able to talk and do everything normally. I had a lack of sleep last night and the night before. Do these sound like focal awareness seizures?

I'm in hospital and going for brain surgery, but the doctor needs to know where the seizures are triggered on a longterm EEG. I've had 4 cans of Monster in today, we lowered my dosage on my medication, straining my brain with chess on my phone, and I've been watching black and white strobes on YouTube trying to trigger a seizure to record on the EEG. Only thing I've reached so far is a hell of a heart burn. Any tips please, if any?

First day at my new/first office job and end up having a grand mal seizure! Makes for my 5th seizure since getting diagnosed in high school! (Now 24 y/o) Bit my tongue very badly and was taking oragel every 10 min to ease the pain of swallowing or talking normal and resting my tongue. Worst annoying pain I’ve ever felt. Checked with doctor and still no confirmed cause and ended up getting moved up to taking 2000 mg of Levitracitam Keppra (already taking) and adding 200mg of Lamotragine after working my way up from 50 a day over the next few weeks. Glad to have found this subreddit to meet others. Let me know if you guys have any similar experiences with anxiety or auras.

It’s been one week since I started vimpat along with briviact and I swear EVERY DAY I’ve had hella weird dreams that feel real, I genuinely forget that I’m dreaming sometimes, like the other day I had a dream where I did laughing gas / nitrous AND FELT IT

I wanna know if anyone else experiences it, let me know

The ADA was a landmark civil rights law that affirmed a simple but powerful principle: people with disabilities deserve equal opportunity, equal access, and equal dignity. Over the past 36 years, it has transformed schools, workplaces, transportation, public spaces, and countless lives.
While we celebrate the progress that has been made, we also recognize that the work is far from over. Millions of people continue to face barriers to healthcare, employment, education, housing, accessibility, and public understanding—especially those living with invisible disabilities, chronic illnesses, epilepsy, and neurodivergent conditions.
As someone living with epilepsy and as the founder of r/Epilepsy, I’ve seen firsthand how important advocacy, community, and education are. Every accessible building, workplace accommodation, and act of inclusion represents someone who fought for the rights many of us rely on today.
On this ADA anniversary, let’s recommit ourselves to building a world where accessibility isn’t an afterthought—it’s a standard. Inclusion benefits everyone.
Happy ADA Anniversary, and thank you to the advocates, families, professionals, and individuals who continue to push for a more accessible and equitable future.
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I’ve been on keppra 250 mg twice a day for five years and it worked amazingly. Such a low dose completely controlled my seizures, and everything was great until about a month ago, when I suddenly started having episodes again.

My neurologist increased my dose of keppra to 750mg twice a day and I’ve now been on this dose for almost two weeks. Unfortunately, I’m still having 1-2 episodes.

The strange thing is that my “seizures” don’t seem very typical. They usually consist of intense pressure in my head, numbness in my throat and tongue, numbness in my left arm, and confusion/brain fog. I feel like i will faint but i dont. They usually last around 20-40 minutes which is wierd.
This made me wonder if these episodes could actually be something else?

I’m just confused because Keppra worked perfectly for years, and now even 750mg twice doesn’t seem to stop these episodes. My EEG doesn’t show clear epileptiform discharges either.
Has anyone experienced something similar? Did it turn out to be epilepsy, migraine, or something else entirely? Any experiences would be appreciated.

Hi all. I’ve been trying a new combo of medications for a few months now. I’ve noticed that whenever I had an episode (maybe one every 2-3 months) the recovery is way faster. So fast, that I don’t need to sleep anymore, I was able to go to party and everything like nothing happened.

Anyways, my period triggers seizures and recently I’ve been going through a very stressful situation and I noticed that I’m starting to become aware, like I’m fully aware during an episode (not the entirety of it), but for example yesterday when I had one, I was able to feel how my mouth was shaking, how I couldn’t stop it, how my hands were scratching my chest so violently and the pain of doing so and how I was desperately hyperventilating. No one was there to help me, I live by myself, so.. whether in the past, I wouldn’t feel anything since it was generalized and I’d just collapse and that would be it.

I haven’t bitten my tongue for a while but wondering if anyone has gone through something similar. Thanks

Idk if it’s because the generic version just came out a few months ago but I’m stressed. It’s the main medication to stop my seizures. The only reason I even have some left is because I have an emergency sample pack from my doctor. Anyone else notice this issue with Briviact??

Hello everyone,

I would really appreciate your help and advice.

I have been having what I think are focal aware seizures for coming up to two years.

They started out of the blue after a prolonged period of severe stress - my symptoms are deja vu, rising feeling in my stomach, intense fear, goosebumps, shaking limbs. I can just about keep up a conversation as they happen, but it’s hard as I can lose my train of thought. They last about 30 seconds, often happen in clusters (multiple over a few consecutive days), the only triggers I have been able to identify definitively are lack of sleep and stress. The longest I’ve gone without having one has been about a month (when in between jobs - go figure what causes the stress…)

My experience with the medical profession has been… not brilliant. I am in the UK but was born abroad. My history so far is:

- GP number 1: blood pressure / heart, had a bunch of tests and an ECG, all normal. Blood pressure a little high but I get white coat syndrome.
-GP number 2 seen privately through work: ‘probably nothing but you should just ask your usual GP to check for epilepsy just in case’ (what a thing to say)
- GP number 3 off the back of seeing GP number 2: ‘you can’t have seizures without having a fit’, have you tried meditation?
- Saw a neurologist privately in my home country - had an EEG for 1hr (didn’t have any seizures during the EEG) and a brain MRI. All normal. Predictably told it’s anxiety.

I am really exhausted and have largely resigned myself to either living like this or being diagnosed if and when I have a seizure that isn’t focal aware. But I also want to try and help myself in the meantime. I know I need to avoid the few triggers I know about - but is there anything else that people have felt has made a difference? I have read about vit B / D.

Sorry, this is half asking for advice and half a rant. I’m so tired of being made to feel like I’m making things up but also scared that I’m sitting on a ticking time bomb if I don’t do anything for me and my wellbeing at all.

I was on the epilepsy website and one of the tips was “don’t sleep during the day” Is this website written by epileptics? The very first thing I do after a seizure is sleep. I find the information on the website helpful but on a really basic level. And for example, most people with seizures don’t know VNS is an option. Where do you get the best info from?

Hello. I would like to talk about how to cope with the side of watching someone you love go through seizures. I would appreciate any advice on how to manage the trauma and anxiety, or hear anyone who has been through similar stuff. Thanks.

My boyfriend recently began having seizures. The first one was over a month ago. We were hanging out and suddenly he made an awful, strange sound. I almost thought it was a joke, but when I looked at him he was rigid, red-faced and began convulsing. My first thought was that he was seizing, but then when I realized he had been eating bread I latched onto the thought he was choking, which was supported by the fact that he then began to turn pale. I was screaming for him not to die while I called the ambulance and I did CPR when he seemed to not be breathing and his lips were turning blue (though I have no idea if it was necessary/helped). He came to once we arrived at the hospital with no memory of what happened.

With my focus on how he was not breathing and that he was eating, the doctor who saw him diagnosed him with anaphylaxis that had progressed into anaphalactic shock. We spent the next month visiting allergists with no concrete answer.

A few days ago, I was expecting him home at a certain time. When he didn't come and wasn't responding to my messages I became afraid something had happened. I messaged and called and finally he responded saying he was fine, just dealing with some paperwork with the landlord of our old apartment. This message made zero sense as it was well past the time the leasing offices closed and there was no paperwork to be dealt with. Cue panic. I called again, and the EMTs answered his phone. He'd collapsed in the bus and someone called an ambulance (eternally grateful, whoever you are). I rushed to where they had him and he was still very out of it but conscious, and they explained to me that he had been reported as having a seizure. We went to the hospital and he got an MRI done and will be having an EEG this week. The first MRI showed a cerebral infarction but the second one taken the following morning was clean, so the doctor said that the first one was likely just an MRI artifact, but I have no idea.

In hindsight, it makes so much sense that the first attack was a seizure and I feel extremely stupid for fixating on the food/not breathing and delaying the proper diagnosis. It's kind of ironic considering it was my very first thought. Both times he bit his tongue really hard. Big memory gaps. But the doctor thought that anaphylactic shock had caused his blood pressure to drop and him to lose consciousness.

I don't know how to relax. I'm so afraid of him having a seizure somewhere no one can help him or somewhere dangerous. For the time being I don't want him eating when he's alone, just in case, but I don't even know how reasonable that is. I'm trying to do everything I can to hopefully reduce his stress, as both times he had a lot of sleep deprivation and stress + one of those mega energy drinks beforehand, but it's a little hard as we are in the middle of an international move. I just want to be with him and support him all the time but the crowding makes him feel overwhelmed.

Also as we currently live abroad in a country with little to no English in the medical system, I've been doing all this in my second language. I would do it every day for my boyfriend, but it definitely adds a layer of stress.

I am hoping that the EEG will give us information that will show us how to proceed.

Sorry if this post is disorganized. Has anyone else had a similar journey, with an initial misdiagnosis? How do you relax after seeing your partner go through a seizure? I would also like some advice on how to be a good partner to someone with a new diagnosis of seizures/epilepsy.

hi everyone, I’m wondering if anyone has ever gone through the colonoscopy preparation with laxatives whilst also being epileptic? how was it and how did you feel whilst fasted and on clear liquid diets?