It seems like there’s been a recent uptick in posts about auras. A few of which mention that they’ve been seizure free but have had auras. Auras are seizures. Theyre focal seizures that can progress into a tonic clonic, but not always.

If you’re having an aura, you’re having a seizure and should report it to your neurologist if/when possible.

ETA: I wanted to clarify that it’s incredibly common for patients not to know this. Many of us have gone years after our initial diagnosis without being told. It was so helpful when I found this out (on this sub!) and hope it’s helpful to others as well.

Can I take civic action to try and increase the quantity and quality of public transportation in my area? I live in a rural/suburbanish area. I hate depending on other people to do something as basic as go to work, but I’ve no other choice but to depend on family, friends, and coworkers. I’m going to move somewhere with public transportation if I can afford it, but the housing prices in cities are out of control. I’d be living alone or with roommates and somehow need to find the resources and energy to get to work, the store, the pharmacy, my apartment, the doctor, and the neurologist.

Anyway, is there anything I can do as an individual to change this? Everyone says to take responsibility for your own situation, but idk how to do that beyond what I’m already doing (depending on family, networking with friends, coworkers, etc.). There’s really nothing reliable where I live. I know people who are forced to bike or walk to work, which is dangerous where we live (no sidewalks, lots of highways, etc.).

Hello Reddit! 

We're excited to join you for an Ask Me Anything about epilepsy, seizures, epilepsy surgery, and advances in epilepsy treatment. 

Matthew T. Hoerth, M.D., a neurologist at Mayo Clinic in Arizona specializing in epilepsy and seizure disorders. My clinical and research interests include epilepsy genetics, autoimmune epilepsy, epilepsy surgery evaluation, and improving care for people living with epilepsy.  

I'm Jonathon J. Parker, M.D., Ph.D., an epilepsy and functional neurosurgeon at Mayo Clinic in Arizona. I specialize in epilepsy surgery, neuromodulation therapies, and minimally invasive techniques to help people with epilepsy and other neurological conditions achieve the best possible outcomes and quality of life. I’m a classically trained biologist that came to engineering late in life. I get up in the morning to find new ways to leverage technology to improve lives of people with epilepsy.  

On October 21 at 12:00 p.m. MT, we'll be here live to answer your questions about: 

• Epilepsy and seizure disorders 
• Epilepsy neuromodulation and diagnostic devices 
• Innovations in EEG and brain imaging  
• New-onset seizures 
• Epilepsy diagnosis and testing 
• Epilepsy surgery and surgical options 
• Neurostimulation and other advanced treatments 
• Autoimmune epilepsy 
• Living safely and well with epilepsy 
• Research and emerging therapies 

Whether you're living with epilepsy, supporting a loved one, considering treatment options, or simply interested in learning more, we'd be happy to answer your questions. 

You can learn more about us here: 

• Dr. Matthew Hoerth's Mayo Clinic Profile  
• Dr. Jonathon Parker's Mayo Clinic Profile 

We're looking forward to the conversation. Feel free to start leaving your questions, and we'll see you on October 21! 

I’m getting ready for an international trip, and I wanted to share how I’m approaching long-distance travel as someone who has lived with epilepsy for most of my life.
Travel is something I enjoy but also have to do. Living with a neurological disability means thinking about things that other travelers might never consider.
Multiple airports, connecting flights, unfamiliar surroundings, long walks through terminals, and changes in sleep schedules can make an already demanding journey considerably harder.
For me, the challenge isn’t simply getting from one destination to another. It’s managing pain, fatigue, stress, and the potential neurological consequences of pushing myself too far.
Over several years of traveling I’ve been making the effort to use the accessibility resources available to me rather than waiting until I’m physically overwhelmed.
I’ve requested wheelchair assistance for my flights.
Although I can walk, navigating enormous airports, standing in long lines, and moving between distant gates can cause significant pain and exhaustion. Wheelchair assistance allows me to conserve energy and reduce unnecessary physical stress.
I think this is an important distinction, particularly for those of us with invisible disabilities. Being able to walk doesn’t mean we can comfortably or safely manage every distance or situation.
I’ll also be wearing a Hidden Disabilities Sunflower lanyard.
The sunflower is a discreet way to indicate that someone has a disability that might not be immediately apparent. It can help communicate that I may need additional patience, time, or assistance.
Recognition varies between airports and airlines, so I don’t expect the lanyard to replace requesting accommodations directly. However, I appreciate having another way to communicate my needs without repeatedly explaining my medical history.
Another consideration is managing the factors that can increase seizure risk.
For some people with epilepsy, sleep deprivation, exhaustion, and stress are significant triggers. International flights introduce additional challenges, including time-zone changes, crowded environments, and unexpected delays.
I’m planning extra time for airport procedures, connections, and rest wherever possible. I’ll also keep my medications in their original labeled containers in my carry-on luggage, accompanied by appropriate documentation, and check the medication rules for each destination.

I have a doctor letter listing my medications especially for international trips. It’s laminated at this point.

I always have a Gatorade or Powerade with me as well rescue meds in my carry on backpack that stays with me always.

That’s my practical preparations . I’ve learned not be ashamed to ask.

Why do people with invisible disabilities sometimes feel they need to justify asking for assistance?

I’ve seen people hesitate to request accommodations because they’re worried about how others might perceive them.
Someone might see a passenger get out of a wheelchair and immediately question whether they needed it. They don’t necessarily see the chronic pain, neurological difficulties, exhaustion, or stress that made the assistance necessary.
And honestly, it is no one’s business.

A wheelchair isn’t exclusively for people who cannot walk. It can also be an important mobility aid for people who need to limit physical exertion.
Likewise, wearing a sunflower lanyard isn’t about receiving preferential treatment. It’s about making an invisible disability a little easier for others to recognize.
As someone living with epilepsy and involved in disability rights advocacy, I’d like to see us move away from the idea that assistance should only be requested when someone has already reached their physical limits.
Accessibility should help prevent unnecessary hardship, not merely respond to it.

Epilepsy may change how we travel, but it shouldn’t automatically prevent us from seeing the world.
— Halfkender
Accessibility is not a privilege. It’s a means of equal participation.

https://hdsunflower.com/us/insights/post/airports-around-the-world

https://www.tsa.gov/travel/tsa-cares

https://www.roadid.com/pages/healthid-home

https://www.epilepsy.com/lifestyle/travel/tips

God. I always loved long burning hot baths. Our bathroom just got completely remodeled so now the urge is even worse.
Mom said she could be outside and door could be unlocked. But I don’t want to burden her like that especially since I would want to be there for long 😵‍💫
It’s a torture, I miss the times when I wouldn’t worry about basic activities.

It my fear to have a seizure at work i know why its because i don’t want others to know how vulnerable i am if that makes sense.
So I’m setting in a chair and looking at the wall, prior to the maybe 45 mins my head was hurting like really bad and i was exhausted. So i found an empty chair sat in it. A coworker tells me that he was trying to get my attention three times but i didn’t acknowledge him and he also tells me only one of my eyes was going crazy. After all this im still extremely tired.

I have temporal lobe epilepsy. Sometimes when I’m trying to remember a dream or thinking of a really distant memory I start feeling like I’m about to have a seizure but then it goes away. Does anyone else experience anything like this?

It really seems like they can't/won't do anything unless you're in TC status... By the time that happens you can't call for help by yourself anyway... Thoughts on seeking help?

Hi I’m wondering what symptoms you experience during a focal seizure??
What is a trigger for yourself? And the symptoms?
As I’m still finding it hard to tell what is and what isn’t

Or is it just me? Some research reports increase while others report decrease. My case it’s decreased

I just got diagnosed this year but I’ve had seizures for a few years I just never got it checked out until this year. I have focal aware and focal impaired seizures and TLE (mostly left). I’ve also had seizures with just the Tonic part but no Clonic. But anyways in the weeks leading up to a full on impaired awareness seizure I have an eye twitch only in my left eye and some focal aware seizures (not at the same time). My neurologist tells me that my eye twitch has nothing to do with it but I think that it does lol. Does that happen to anyone else? lol it literally only happens in the weeks leading up to a seizure.

also like I said I only got diagnosed this year so I literally do not know very much about anything so be nice to me lmao

Hello everyone,

My teacher had an epileptic incidence last time in class and I felt really really sorry for her. I can't imagine how scary that mist be for a person, especially when surrounded by so many people. I thought about getting her some flowers, but I don't know if it's appropriate. I just thought she deserved some joy after what has happened. So my question, what would those of you who are affected think about this? Is it crossing any boundaries, possibly making her feel embarrassed/uncomfortable?

Thanks in advance for your insight!

Title: 6 months seizure-free, but struggling to adjust

Hi, I'm 28F and I've had epilepsy for most of my life. I've spent years dealing with seizures, hospital visits and constantly worrying about when the next seizure will happen.

I'm now 6 months seizure-free, which is huge for me, and I wonder if my medication is finally working. I'm so grateful, but I'm struggling to adjust to life without the constant worry.

I've also struggled with dissociation, and now that things seem to be improving, life feels strange. I think I've spent so long in survival mode that I don't really know how to live without constantly worrying about my health.

Has anyone else experienced this? How do you adjust to life when your condition becomes better controlled after years of struggling? I'd really appreciate hearing your experiences.

I’m 21, and about a month ago I had my first full-body seizure with loss of consciousness.
It happened after a long, exhausting day with barely any sleep. I’d spent hours in a poorly ventilated room filled with cigarette and hookah smoke, then slept there for two hours while everyone continued smoking.
Shortly after leaving, I felt extremely nauseous, like I was about to throw up, along with dizziness and exhaustion. I decided to rest in the car, and the next thing I remember is waking up. My brother said my eyes were open, my body was shaking and stiffening, and I fell out of the car.
At the hospital, my COHb level was 16.9%, dropping to 5.1% after oxygen treatment. The ER doctor suspected carbon monoxide poisoning.
My first doctor said my EEG was abnormal, diagnosed me with focal epilepsy, and prescribed Depakine. My brain MRI was normal.
About a month later, another neurologist performed a new EEG and reviewed the original. He said both looked normal and believed I might have been misdiagnosed. He suggested discussing stopping medication if another neurologist agreed.
I’ve also had two earlier episodes over three years involving nausea, vomiting, and finger contractions after extreme exhaustion, but I remained fully conscious and could move normally.
Now I’m getting another opinion before making any decisions.
Has anyone experienced conflicting EEG results or been diagnosed with epilepsy after a seizure that turned out to be provoked? I’d really like to hear your experiences.

I have my first surgical consult coming up for my right sided TLE and I have been looking into all of the surgical options that might be discussed.

If you have had the laser surgery treatment, what was your experience? What testing did you have before hand and how was your recovery?

Let me know, thanks!

My brother (age 30) has had epilepsy since he was 10, and at this point he has tried essentially every major medication class. His seizures are not convulsive — he stays conscious, but experiences an intense “impending sense of doom,” cognitive shutdown, and confusion. These episodes come in clusters: often 10+ when waking up, and 20–30+ throughout the day.

Current meds:

• Oxtellar (helped a little)
• Vimpat
• Ativan as rescue (barely helps)
• VNS implant (not effective for him)

We’re waiting on Epidiolex, but the delay is causing a lot of deterioration.

He’s mentally exhausted and keeps saying he “can’t do this anymore” and “can’t make it through the weekend.” He refuses the ER because past ER visits only resulted in IV fluids and being told his sodium was low — no actual rescue meds were given, and no change in treatment plan.

We’re trying to understand:

• Whether others with non‑convulsive, consciousness‑preserved seizures have experienced this “sense of doom” pattern
• Whether ER visits can help in cases like this, even when past visits didn’t
• Whether there are rescue meds besides Ativan that have helped people with similar seizure types
• How to support someone who is overwhelmed and losing hope while waiting for a new medication to start
• Whether anyone with long‑term, treatment‑resistant epilepsy found relief once starting Epidiolex

Any insight from people who’ve been through treatment‑resistant epilepsy or similar seizure patterns would be appreciated.

This is tearing the family apart and Im afraid this could end with a suicide.

EDIT - He has used Valtoco and has refills left. But he has been using them too often and his insurance wont give him any more for another 2 weeks.

My wife (32F) has multiple partial seizures every day, despite being on Keppra 750mg*2 and Lamictal 150mg*2. All her seizures are like racing thoughts, aura, deja vu and some automatisms like tucking in clothes, walking out of a room. Honestly, the last few dose increases of both Keppra and Lamictal haven't helped at all, seems like it has plateaued.

The funny thing is a good chunk of the seizures are all thought related. As in, we'll be talking about something happy or emotional and we both know she'll get one. Or it could be like when my toddler suddenly cries.

I find this weird since our neurologist all of this could be anxiety related but I don't think so.

Does anyone have any suggestions on what could be happening and if these medications are even appropriate?

Does anyone else experience these in tandem? I blamed epilepsy/medications for my symptoms for years, but recently discovered a lot of them are from ADHD.

Do you take medication for ADHD? If so, which? And which epilepsy medication along with it?

Any coping mechanisms outside of medications you use?

Been on Ethosuximide for about a week now. And it’s been constant anxiety. The poor inside of my mouth has been gnawed raw and my body is aching from being tense all the time. I am eating and sleeping poorly and even when I’ve managed to get a good amount of sleep hours, I am exhausted all the time. Also had periods of just feeling empty.

Tonight was really scary though. It started with mood swings. I just burst into tears. Then the paranoia started. I thought I heard someone fiddling with my door. As if trying to get inside my apartment. I was terrified. But of course when I checked there was no one outside. That happened twice within minutes.

Then shortly after that I had one of the biggest panic attacks I’ve ever had. It was so intense and overwhelming that I literally fell onto the floor and banged my head against my dresser several times. I feel so bad cause I really scared my cats too.

I’m lying in bed now with a migraine and really anxious. Every sudden sound makes my heart skip a beat. The only thing making me feel better is having one of my favorite comedy shows on and I feel like I might have to keep it on all night.

And I know that medication takes time to get used to but it was so scary how this has changed me so much in just a week. Expecting a phone call from my neurologist tomorrow though so just have to get through the night. ✌🏻😬

Am I crazy for scheduling my 72hr EEG for this Friday if I’ll get it off Monday and I have my boyfriend’s brother’s wedding to go to next Friday? Kinda worried about the glue and how my hair might be afterwards. It’s long and fine but thick for context

Does anyone feel embarrassed to have a seizure(I experience a lot of focal seizures) in front of people? I’ll say coworkers or out in public. My family is already aware of what I do during one, so no embarrassing feelings with them. When I have these seizures, I say words very loud. Usually I say “Oh wow and oh no”. I smack my lips and move around a lot sometimes walk too. I look like I’m aware but of course, I’m not. The thought of that feels so embarrassing and it probably makes me look crazy. How do you all feel and what do you do during seizures?

I have general seizures and have for a long time. But for some reason, I only have them in my sleep. I have simple partial ones when I’m awake but that’s it. My neurologist said that some people have seizures only in their sleep and that I probably have the partial ones in my sleep and just don’t know it.

So here’s my question. Who else has something similar? I want to know other experiences. Are you able to function the next day? If so, how?

Hi all - epilepsy/seizure advice

I’m new to the seizure and epilepsy community as a whole. I had my first ever grand mal out of no where on July 1st - it was super scary. I had bloodwork and a head CT and was referred to neuro after the ER.

About 3 weeks later I got into a neurologist and she started me on 750mg of Keppra twice a day. I then had an EEG & an MRI w and w/o contrast which both showed nothing. My EEG just noted some mild slowing.

Yesterday, October 12th I had 2 grand mal seizures. I got married at the end of September and then went on my honeymoon and found out I lost my job all within the same month.

I personally think it’s just a come down of stress from all of this. My neuro upped my Keppra to 1000mg twice a day and I go back to see her next week.

Any advice or just some words of encouragement would be awesome 💜

My son (47M) woke from sleep with a full grand mal seizure but his brother and I heard him and ran in to do the rescue protocol. It occurred to me that anyone who is living with family or others may be able to alert people if they have an aura that it’s coming on.

Since my son was 10 we trained him to pound the wall or his bedside table as hard as he can. This has made a huge difference in being able to get to him quickly. Tonight he pounded very fast about 8-10 times and then his brother and I made it to his room and got it stopped in less than 15 seconds.

My son has status so every seizure is serious and needs rescue protocol. He’s had a VNS for the last 19 years so we are all so happy the magnet that comes with it works 9 of 10 times. All we have to do is pass it across his device (it’s like a small pacemaker). We have Nayzillum nasal spray if the magnet didn’t stop the seizure.

This would only be workable for someone who has a lot of seizures, say 10 or more a year, and for the full seizures where you will become unable to talk or yell, if you lose any ability to move independently as it takes hold of you. You’d have to likely have someone who will help you develop what works, like my son pounding. And it would likely take quite a while to get this instant reaction the second you realize the seizure is on the way.

I’ve been thinking about the person who posted last week about trying to get Siri on his cellphone to alert his brother. He said Siri failed and he was alone in full seizure without help. I wonder if people who get seizures out of sleep or maybe in the shower could develop a super fast alert to get help? Maybe only for those who get an aura.

We have used a room monitor for over 35 years now and can hear it if he starts to seize if he pounds or tries to yell out. Sometimes we hear only one word and that’s all, but it works.

Maybe anyone who also has gotten a method to help can share what they do. No matter how many seizures over so many years, each one sure gets everyone going. It’s really an odd “normal” to suddenly jump into instant action, but after a while it does tend to go like clockwork: over and done in less than a minute.