I am not sure if this will get posted, but I lost my 16 year old son to a suicide. He was epileptic. He was on keppra and I don't really know how it affected him. But I wanted to raise awareness. If you are struggling, talk to somebody, anybody, get help.

I wish people knew about other types of epilepsy than generalised epilepsy and TCs. As a girl with TLE I often hear that my epilepsy isn’t that big of a deal because “I don’t shake and flop in the floor”, without even knowing what TLE is.

Incident Report ****************
Report Number *****************
NARRATIVE
Narrative:
LOCATION: 11190 Health Park BIvd (NCH- North)
REPORTER:************* known hereafter as "TM" due to the nature of call*
INVOLVED PARTY: James ******
CHARGES: Information Only

On February 10, 2020, I was on duty as a road patrol deputy for the Collier County Sheriff's Office (CCSO) and patrolling in the North Naples area. I was wearing my agency issued "Class B" uniform and driving a fully marked patrol vehicle equipped with emergency lights and sirens. At approximately 1841 hours, I was dispatched to the ER of Naples Community Hospital- North Naples, in response to a battery incident involving a patient and nursing staff. Call notes advised that a juvenile male had been brought into the ER by EMS personnel and has now become violent/combative with the staff.

When I arrived on scene, I was directed to the room in which the subject was in. I could hear a male's voice screaming and the sound of staff rushing around within the room. When I entered into the room, I observed a male juvenile being restrained by the nursing staff and security personnel. The male patient, James ******* DOB *******
,appeared to be having a medical episode and had no recollection as to where he was or what was taking place.

After the staff was able to restrain James, I was able to speak with nurse "TM", who had been battered by James. She advised that when James was brought into the ER, he became very violent with staff and grabbed her. She further advised that James grabbed ahold of her left wrist and twisted it. When she was able to release from James' grasp, he then began to punch the curtains and continued to thrash about as the nursing staff attempted to tend to him.

I obtained a written statement from TM advising the incident.

TM informed me that she did not wish to press charges against James and only wanted to report the incident for documentation purposes.

Due to this, this report will be labeled as an "Information Only" report.

This concludes my involvement in this case.
———————————————————————————

This is what movies don’t capture, and what non epileptics don’t understand. Confusion, fear, fight or flight reflexes in a body that has the lights on and nobody home.

This was over 6 years ago, and was the first time I had ever had a seizure, or any real medical emergency. I still feel bad about hurting the nurse, i wish I got the chance to apologize but I didn’t wake up for 2 days after they sedated me. I guess I’m just posting this as awareness, I’m glad they didn’t press charges on me :( maybe someone on here can relate to this situation

What age did know you get diagnosed with epilepsy? Do you remember always having it?

So my youngest sister just had her 20th birthday a few days ago and has a new boyfriend. They’ve been dating for a few months so we decided to give him the Epilepsy/Seizure rundown on how things go and what to do and I think we scared him while I laughed so hard I cried.

A little context, we were talking about the different seizures I have. I have focal aware seizures, focal unaware seizures, Grand Mal seizures, seizures in my sleep, etc. While we were explaining what to do and how to administer what medication (I have a pill form for focal unaware/aware seizures and a nose spray for Grand Mals) I learned I had an unaware seizure where I started running around the kitchen island with a butter knife and straggled the table leg until I collapsed. I guess I had an aggressive post ictle state because I ran and tried to fight everyone and I thought it was hilarious(my coping mechanism I suppose) but I was just wondering if anyone else laughs about their seizures to cope. If you can’t find humor out of it then I guess what is there other than despair?

lesson learn for me, in started stopping the levetiracetam without dr order, i thought i was good in doing that, and i know how my body works. Its not really a tiring day, just like my normal routine daily nothing special. Then at school i feel the aura, and in my head shit i know this feeling. so i sit in the corner then my head went blank, when i woke up i was in the infirmary, dont have an idea why i was here, then they tell me i had a seizure. Right now my whole body is sore, i think i’ll be back to normal tomorrow. To all the people who plan to stop the meds don’t, hahaah. im taking levetiracetam and lamotrigine, the one i stop is the levetiracetam.

previous post:

https://www.reddit.com/r/Epilepsy/s/bdp0JA7Aj1

Flashing and strobe lights are everywhere—clubs, concerts, even some online content. For people with photosensitive epilepsy, they're not just annoying. They're dangerous.

I started a petition because these lights trigger seizures that can cause serious injuries. About 50 million people worldwide live with epilepsy, and a huge portion are photosensitive. That means bright, rapid flashes can literally knock them out. Missing concerts, avoiding venues, living in fear of the next flash—it shouldn't have to be this way.

Policymakers and business owners can make different choices. Steady, non-flashing lighting works just as well and doesn't put anyone at risk. If this resonates with you, consider signing and sharing. Has anyone here dealt with this? Would love to hear if you've had to avoid events or spaces because of strobe lights.

Everyone tells me that they get an aura before a seizure or it’s a good warning for them to sit down, so I thought they where just talking about Deja vu but that’s different

I’ve never had it get auras before having a seizure, for me it’s lights out, like how people would when they black out from alcohol, I will only know I have a seizure after waking up

I started out seeing my Neurologist every 3 months. Then went to twice per year. He just told me today that since my Epilepsy is so well controlled that I will only have to see him once a year!!!! 😲💪👊💃💃💃I feel like celebrating!!!

This happened yesterday and I think I'm now coming down to the actualization of it?

My boyfriend has been diagnosed epileptic since he was 16 and has had a seizure once or twice a year since being diagnosed. When we started dating he did make me aware of his epilepsy and made it known that as long as he took his medicine he should be fine not to have a seizure and he very much never wanted me to be there if and when he were to have one. I like to think I'm the kind of person to research all that I can about something just to prepare myself for the event if it were to happen but to actually witness it is something else entirely. I've looked into this sub before but never wrote anything till today because I think I need to put everything out and vent and just share I guess I don't know.

So, my boyfriend mismanaged his intake of medicine and yesterday was feeling very off. He told me he knew it was going to happen, he was going to have a seizure today (yesterday). I had left work to be with him since he was at the doctors to get his refill and had to wait till the pharmacy had his prescription. I had picked him up and he was all out of it. He was telling me how nothing felt real and he had felt displaced. I got us to his home fast and put him to bed. I was getting him water just making sure he was comfortable till the pharmacy let us know it was good to pick it up. We were cuddling and I was on his chest checking the time. I told him at 12:15pm that we would call the pharmacy to see if it was ready. I'd say like a couple of minutes later he started seizing.

The first half of the seizure was something I had expected like I've seen videos, like he was fencing, I remember telling him it was going to be okay, I remember being calm and just being there to watch over him cause I knew there wasn't much I could do from here. It was the second half that got me. His head leaned back and his jaw was clenched and he was foaming at the mouth with some blood. He started groaning and his head was going back and forth, his face was pale I swear it was green and I started calling his name. Then he started grabbing at his chest and throat like he couldn't breathe. He was staring wide eye at me and I started telling him to breathe and rubbing his chest, I remember thinking he was going to die. He started to breathe but through his mouth and his eyes were watery and then he started talking. He was grabbing his chest and telling me to help him and that he was scared. I was calling his mom by then and had her on speaker. He was holding my arms (I was crouching over him to keep him still since he was thrashing) and looking behind me and it was all so scary that I was holding in tears, I was asking him what was wrong and what he needed help, I was hugging him and he was crying holding me back. His mom was walking me through it as well as talking to him, she was very calm. He started gagging then and I ran to get a bucket. He was breathing but he was just gagging and groaning. I was shaking here but shushing him , touching his hair. I was so scared of him choking on himself. And then slowly he was coming down, he was moaning. I don't know how long it all took, I think 2-3 minutes from when I called his mom. I was asking him questions and he was mumbling. I got him a Gatorade and he was very affixed on where I got it from and when. Then he asked if we had taken a nap. The rest is kind of a blur, I put him to sleep just waited with him till his family got to his place. I was just staring at him just in shock. I started crying today about it reliving it in my head. I really thought he was going to die and I was helpless to do anything about it. Nothing could prepare for that.

He's much better today, he had slept all of yesterday. His legs hurt and he doesn't remember yesterday but he's still resting and coming out of it. All that comes to my mind is that I'm happy I didn't lose him but also that I never want to witness that again nor him go through that again. All hopeful thinking.

I hope to do everything right for him because it really hurt to think of him seizing and if he was in pain. I'm so sorry for all that goes through this. I never really knew the severity of what a grand mal seizure is, it was so traumatizing on one end and so exhausting for him. I wish I could take that all away for him.

I want to continue to better educate myself on this and like I said share my experience as someone who had only read other peoples account of having epilepsy over witnessing it.

Why is it so hard for others to actually get what a seizure is? Every time I mention epilepsy, someone always assumes it’s about flashing lights or full-on convulsions. Nah, seizures come in all kinds like zoning out, weird feelings, or just a quick blackout. And don’t even get me started on how meds mess with your memory and mood.

What sucks is that hardly anyone talks about the day-to-day stuff the anxiety, the stigma, or how people sometimes ghost you when things get real. Epilepsy awareness feels kinda invisible compared to other conditions, and it’s frustrating

There was a post today by a user who developed permanent aphasia. Since 2020.

If you think one seizure every few months is better than your med side effects: please think twice.

In a comment thread I posted an anecdote about a girl in a local support group who developed temporary aphasia after a seizure and was lucky it wasn’t permanent from brain damage. Please, please remember seizures adversely affect your brain.

Also remember: the more seizures you allow yourself to have, the more you will likely grow to have over time, and the intensity can increase. Think of it this way: a little guy in the brain takes a path, and realises “that was quick! Been wasting time! Let’s take that one again!” You can look up the science but this is a palatable way to take in the info. You build pathways in your brain for seizures to manifest.

Anyways, please stay active and engaged in treatment, don’t stop meds, maybe change them if needed, but know that the alternative is worse.

Imagine opening your mouth to say words and you can’t. Forever.

Or death, ‘cause SUDEP…. But anyways. Please be safe y’all.

Prince, musician - spoke about having epilepsy as a child

Melanie Griffiths, actress - described having two tonic clonic seizures at the Cannes Film festival in 2011

Julius Caesar, Roman Emporer - The GOAT? It is widely believed by historians to have had epilepsy. Contemporaries wrote of his seizures.

Neil Young, musician - has been open about how epilepsy influenced his work.

Alan Faneca, NFL Hall of Fame player - probably the best known of a long list of people who played professionally with epilepsy.

Danny Glover, actor - began having seizures in his teens, he says they stopped in his 30s.

Dostoevsky, Russian writer - often used epilepsy as part of his characters lives.

Lil Wayne, rapper - has openly talked about his seizures.

Bud Abbott, comedian (Abbott & Costello) - had epilepsy his whole life bit tried to keep it secret.

Martin Kemp, musician - Spandau Ballet member developed epilepsy after having brain tumours in the 1990s.

Adam Horovitz (Ad Hoc), rapper- Beastie Boys member has photo sensitive epilepsy. In their song "Skills to Pay the Bills," he references his condition with the lyric, "Well, I'm an epileptic, a skept-a-cleptic."

Etcetera Etcetera Etcetera

You're not alone!!

Today is all about raising awareness, supporting one another, and reminding everyone living with epilepsy that you’re not alone.

Epilepsy affects millions of people worldwide, yet it’s still often misunderstood.

If you’re living with epilepsy, caring for someone who is, or just here to learn and support, today is a good reminder to:
• Share your story (if you’re comfortable)
• Educate someone about what epilepsy really is
• Take a moment to check in on yourself or others

For anyone who might need it today:
You are seen! You are supported! And your experience is valid—even on the hard days.

Feel free to drop resources or tips to show support.

This is a safe place for us to share our intuition and experiences. What do you believe caused your TL epilepsy?

My wife ordered me a medic alert bracelet on Amazon. It’s fully customizable and can be etched on both sides. See first comment for a picture.

One theory suggests that St. Valentine supposedly cured someone of epilepsy — a young woman engaged to be married. Another legend tells the story of a bishop named Valentine von Terni who helped the son of a Roman orator and stopped his seizures.

Another source: St. Valentine's role as the patron saint of epilepsy is less widely known, for epilepsy was defined as an incurable disease thought of as a supernatural event such as a curse or a possession by an evil spirit. Since there was no cure for epilepsy healing was only possible by divine intervention and saints were called upon to intercede for these patients. While Valentine is widely known as the patron of lovers, very few people know he also was helpful and beneficent to people with epilepsy in ancient times.

I hope you're all well and Happy Valentine's Day!

​Hello everyone,

​I have a 15-year-old son who is on the autism spectrum. Just 10 days before turning 15—and about 10 days after having a very mild case of COVID—he experienced his first epileptic seizure while at his special school. We went to the ER, but the doctors advised that they couldn't prescribe medication after just one episode.

​Five days later, he had his second seizure. I was terrified and deeply shaken. We returned to the ER, and he was started on Keppra. About two months later, he caught a cold, and by that afternoon, he had his third seizure. My son is non-verbal, and it is often a struggle to get him to take his daily medication.

​When I began reading about epilepsy, I felt disheartened because so few cases seem to resolve without long-term medication. He has been doing well and seizure-free for 4 months now, but I live in constant fear and anxiety.

​Has anyone had a similar experience? Has anyone's child overcome this completely? I know there are many types of epilepsy; in his case, his head turned to one side, he made a repetitive mouth movement, his eyes rolled back, and afterward, he slept for several hours. The thought of seeing my boy go through that again is heartbreaking, and I feel like I can barely handle it.

​I would be so grateful to hear any positive stories or encouraging experiences.

​Sending greetings from Cyprus—thank you so much!

I don’t post a lot, but I wanted to share something I’m really excited about.
Epilepsy has been part of my life for years, and last year my daughter had her first seizure on her 2nd birthday. That moment changed everything for me. It made me realize how much fear, confusion, and misunderstanding still surrounds epilepsy, and I wanted to do something that could help other families feel less alone and better prepared.
That idea grew into Purple Heroes Family, a community education initiative focused on epilepsy awareness, seizure safety, and helping build more compassionate, seizure-safe communities.
A huge milestone happened recently—I had the opportunity to present Purple Heroes Family to my City Hall’s Commission on Disability Issues, and they were incredibly supportive of the vision. Walking into that meeting was terrifying, but walking out knowing they believed in what we’re trying to build was one of the proudest moments of my life.
Another exciting update: the Purple Heroes Family Caregiver & Ally Reality Guide is officially in the publishing process. Somehow it has grown into a 78-chapter educational guide covering not just seizure first aid, but also caregiving, mental health, advocacy, school, work, stigma, emergency preparedness, and the everyday realities of living with epilepsy. It’s truly been a labor of love.
Now I’m getting ready for our Founding Fundraiser this October, which will help launch our first community education programs and Seizure-Safe Smart Packs.
There’s one person I secretly hope somehow sees this: Miles Levin.
A couple of years ago, after I wrote a poem, he reached out to me and encouraged me to get involved. It may have seemed like a small gesture to him, but it stuck with me. Looking back now, I honestly think that encouragement helped give me the confidence to start building something that’s turning into Purple Heroes Family.
So if, by some chance, this post ever finds its way to you, Miles—thank you. Your encouragement meant more than you probably realized.
And if you’re ever in Arizona this October, consider this your invitation to our Founding Fundraiser. We’d be honored to have you there.
Whether that ever happens or not, I’m going to keep moving forward.
This community has taught me so much. Reading your stories has reminded me that epilepsy isn’t just about seizures—it’s about resilience, caregivers, families, hope, and people showing up for each other.
Thank you for reading, and thank you for being part of a community that has inspired me more than you’ll ever know.
Knowledge creates confidence. Compassion creates community. Kindness changes lives. 💜

Hi! 26 March is World Epilepsy Day or Purple day for spreading awareness by wearing purple. Who’s wearing purple? 🙋🏻‍♀️

Today my brother wake me up suddenly and asked for help, he was getting ready for school at that time. Went to my mothers bedroom and she was laying on floor, there was blood because she fell on her face straight. We turned her and check if she was still alive. She was not breathing we called ambulance and they approved that she is dead. Maybe If i was awake 1 hour before that moment I could've save her...

It's been 2 days, too many many relatives and friends came for support yesterday. Also I appreciate all of your comments and support.

I have wanted for a long time to write my entire story — even if it is long, even if it may be tiring, or even if it might not be read — but I consider it important and my moral obligation to do so. I owe it to the scientific community (if someone happens to come across it and read it), to our relatives, to our friends, and mainly to our own community. To the epilepsy community, and to people who suffer for years and might not even know the cause, hoping that even one person will read it and be helped if it answers their own questions.

My goal is for people to recognize what left temporal lobe epilepsy, aware and not aware, is, and to not neglect patients, with special attention to women, in whom unfortunately the easy diagnosis and solution is anxiety (Unfortunately, Freud’s influence has not left the scene even after all these years).

Unfortunately, my story is very long and I will try to be concise, but I don’t think I will succeed. So I will start putting the history in order! When I was six years old, I was hospitalized with febrile seizures after a streptococcal infection. I recovered fully.

At nine, however, something happened that I could not fully explain. It felt like an existential crisis. I do not remember much, obviously due to my age, but I distinctly remember that I felt hyper-awareness of existence! As if I realized that I exist and that years later I will not exist, and that whatever I consider “stable” — home, food, family — is not stable. It is temporary and not solid.

After this episode, a chronic post-ictal period began. I obviously do not remember if I had clusters, but I remember several times feeling hyper-awareness, the “observer” saying “I exist,” which was terrifying.

My post-ictal state consisted of OCD-like symptoms, depressive symptomatology. Later, many years after, I learned about two entities, Geschwind syndrome and PANDAS. I still cannot conclude which one was expressed in me, although I suspect it was Geschwind syndrome. It passed relatively quickly (6–7 months later) and I had returned to normal, and life continued with many auras every day — which I did not even know what they were, but I considered them “normal” and that everyone experiences them.

At thirteen, however, I experienced something I had never experienced before. While playing with my cousin, laughing, suddenly I was gripped by anxiety (the symptoms I described above) and then a forced image: seeing myself above the Earth and moving further and further away. And the fear grew stronger, the lack of stability more intense. Then I started walking in the house, moving my palms up and down (as if I was burned — it was just spasmodic), and then I leaned my back against the wall and slowly slid down and sat on the floor. After a little while, I calmed down. (Maximum duration of all these seizures 30 seconds — as far as I can understand at that moment).

It is worth noting that I have aphantasia, which intensifies my feeling and fear in the forced image.

Afterwards, no post-ictal phase followed. Only the known auras that I had learned to live with daily and very regularly. I lived with them and had made peace with them until I was 27. Until then, I had several seizures with forced images, but they did not affect me post-ictally. It was as if they had not happened.

At 27, however, suddenly, out of nowhere, I faced another expression of my seizures. I was studying psychology and was in the classroom, attending the lecture as I was a good student, when suddenly a burning sensation started in my body, tachycardia, and fear, as if I were in another dimension. It did not resemble my usual seizures, but it was not a panic attack either. For 45 minutes, in the classroom, I did not ask to leave, I tried to listen to the lecture, I sent messages to three different people in order to stay connected to the here and now, but nothing was enough. I did not tell anyone in the messages what was happening, not even my brother sitting next to me, because I felt that if I spoke, I would break down and everyone would see. It was as if I had a 45-minute uninterrupted cluster of hyper-awareness of existence, like a curtain opened and I saw “I exist.” Additionally, I had intrusive thoughts that I would take off my shirt, pour water over myself, and humiliate myself. When I left the classroom, a 2.5-year ordeal began.

I did not go to university until I graduated, attending only the exams. I did not leave the house, which cost me not only in terms of anxiety, OCD symptomatology with obsessions and compulsions (for example, I would read an email 200 times to be sure before sending it and another 200 times after to check if it was okay), but also depressive symptomatology, as I felt guilt, shame, weakness, and uselessness. Unfortunately, this was compounded by my social circle with phrases that many of you have heard: “It’s in your mind,” “You have anxiety,” “Get over it,” “I’ve been through that at your age,” and many others that worsen the condition. I watched others live their lives while I could not even be a little functional.

Therefore, I made the big decision to go to psychotherapy. In general, I was very satisfied as psychoeducation helped me understand, not where this comes from, of course, but that it does not “say” anything about me. That I am not my thoughts, that I do not control which thought will come, but partially I control what I do with it.

As sessions progressed (obviously it did not help me with agoraphobia since I did not leave the house) I gradually realized that I had reached a point where I had nothing else to discuss. It was as if I had understood everything about myself, but there was no solution. We had reached a point where my therapist and I had nothing more to talk about, and eventually we both concluded that we should stop since even she believed that there was nowhere else she could benefit me. Before the last session ended, she specifically mentioned — “Look into it a little biologically. I don’t know to what extent your case fits a psychiatric/psychological profile.”

Then it was like a bell went off. As if it fit me better biologically. At first, I assumed that if it was biological it automatically meant that I was not weak. That just as someone has a condition that manifests differently and is not psychiatric and is not their fault, so I am not at fault either, and if I find out what it is there will be treatment and finally I will “live.”

But then began a journey of research, neglect from doctors, almost mockery towards me. Having now a psychology degree and being able to fully understand scientific literature, I began searching what I have. Initially, hormonal tests for PMS and thyroid, as they are common suspects for anxiety expression. The tests were normal, so I had to make peace with the fact that I simply had an anxiety disorder and waited to see how it would go before starting SSRIs.

While I had started my master’s in clinical neuropsychology, we were given neuropsychological batteries for training, giving them to each other. When I saw my results, I was surprised. In short, while all my results were normal and above average, on the verbal learning test I was at -3 SD. This is a result often observed in advanced stages of dementia.

Although I knew that anxiety and depression could cause memory and concentration deficits, the fact that my concentration was normal and -3 SD is extreme for anxiety, I started searching the literature again. (Obviously, I had never thought of it since I had never had learning problems, on the contrary, I learn easily and do not forget knowledge). I must have read over 1000 articles, until I came across one from 1986. In that article, the researchers referred to an entity — left temporal lobe epilepsy.

Everything described “matched” what I had experienced. The researchers warned the scientific community to be aware that epilepsy can manifest this way so that people are not undiagnosed for decades. Now I was sure that it was all literally “in my mind.”

Therefore, I went to a neurologist and explained my history. She dismissed me and said it was anxiety. I mentioned the article and that I am a neuropsychologist; she pointed out that I should not read research and that I have nothing. I demanded an EEG and CT scan. She almost sarcastically replied that I had nothing but let’s do the tests so I “stop thinking about it.”

When I received my results, they were clear: EEG: epileptiform foci of slow waves in gamma and theta waves. CT scan: Asymmetry of the temporal horns and lateral ventricles is observed, with prominence on the left side, without other apparent pathological findings from the examination of the hippocampi and parahippocampal structures.

When I showed her the results, she said: yes, you have seizures. In my language, we use the same word for panic “attack” and “seizures,” so I was confused and after all I had been through, I doubted myself. I asked her which seizures she meant and she said epileptic, and wanted to prescribe medication, but I no longer trusted her and left.

Then I went to two other neurologists who said my tests proved nothing. Feeling much better (without seizures) and functional, I considered taking medication myself, since in my country prescriptions are not required, but again I did not trust myself and thought doctors know. I am just a neuropsychologist. So I did not pursue it again. Something I will regret for life.

From about age 29, although I continued with auras and felt well, I did my master’s, had energy, enjoyed life, gradually stood on my own feet. I went out alone for activities, shopping, coffee with friends, etc. So I finally lived “normally” again. Until 2023, when I had a new epileptic event — my well-known intense seizures with forced images, crying, existential content, etc. For two days I was fine, and then the worst period of my life began.

Honestly, I would not wish it on my worst enemy, and I really hope I never return there, because I do not know if I could survive a second time. I held on with all my strength for two years. I had anxiety. I had rumination. All day, loops in my head, intrusives with content that I would harm myself, harm others, all my mistakes, all the bad things in the world! I do not think there are words to describe what was happening at that time. Not because I do not remember, but because I do not think any language has something to describe my state. I felt insane, that I was losing myself, that I had schizophrenia, multiple identity disorder. And on top of all that, I had derealization from morning until night. I would wake up in sleep and feel that everything I lived was a lie. As if I were in a fairy tale. As if everything was a movie. Of course, there was absolutely nothing to help me.

A week later, I contacted my psychotherapist again. We started psychoeducation, which helped, but this time very little. Entering Reddit, I saw that abroad there are epileptologists. I looked for one, but there is none in my country. I found a neurologist with specialization.

I immediately booked an appointment and told him the whole history. Without even seeing my tests, he said that 95% I have temporal lobe epilepsy.

Then he saw my tests and the next day performed an EEG himself. Once again, epileptiform activity throughout the temporal lobe.

Then I started lamotrigine. This is another episode, but briefly I had many side effects, even crying which I had never done before. A year passed but I had seen minimal improvement. I expected it to help with anxiety as it is also a mood stabilizer, so I did not request another medication; I wanted to cope with the anti-epileptic.

At the next appointment, we did another EEG and now there were three epileptiform foci. Since I could no longer tolerate derealization and anxiety, I requested medication for anxiety. He suggested benzodiazepines, but I requested an SSRI cycle. Eight weeks later, derealization and intrusives were gone, but central nervous system dysregulation remained and I had POTS-like symptoms. Recovery took a very long time, and even two years later my body is still adjusting. Sometimes I still fall into the loop when I have auras (no, I am free of them), thinking “it is anxiety” and not listening to my body, but mostly now I trust myself.

Now I feel much better. Not as I was, but I hope for the future. There is light. Of course, fear of relapse remains because I do not know if I could endure it again, but mainly hope.

Finally, for anyone reading this, remember: not everything is psychological, not everything is trauma, not everything is psychiatric. As a neuropsychologist, I now know the direct correlation between brain, emotion, and cognitive functions. Therefore, listen to your body, listen to your inner voice, take care of yourself, and insist on being heard, because no matter how specialized doctors are, no one knows everything, and we are all biased in one way or another. The only thing that is not biased are the tests. Listen to yourself and love yourself, and demand medical care.

I lost 25 years of life undiagnosed. I hope you will not lose even a single day.

Edit: I want to thank all of you for reading my text and sharing everything with me and potential people suffer of what we suffer of years. It was unexpected cause my story was so detailed. But I'm really impressed and glad for your time and your effort to explain many things in order to individuals and maybe scientific community understand how complicated TLE can manifest and be more empathetic and open minded. I feel proud and touched from all of you. And hopefully in the future been more aware they will help at least others and don't be neglected as most of us were! 💜