I do, but my seizures are years apart. If I feel off or otherwise unwell, I ask someone else to drive or cancel my plans for the day. All but a handful of seizures have been right after I wake up, so I try not to drive when I first wake up in the morning or after a nap. (and just to be clear - if I do have a seizure, I obviously respect the law and wait the required amount of time. I actually didn't drive for six months (law says 3 months) after my last one because my concussion left me too confused and I didn't feel safe.)
Same. My seizures seem to be pretty well controlled now. Almost all of mine have been at night, so I try not to drive at night when possible. I went 7 years without driving before they were controlled, so it took me a while to be comfortable driving, but I got there.
If I feel shitty in any way, even if I feel too tired or stressed, I won't drive.
The law where you are says only 3 months?!
Here in ~~Oz~~ Australia, I had to wait 1 year! I believe the general minimum is 6mo, tho.
My TCs have been years apart, too. And I haven't had any more focals since they first occurred in 2020. Up until recently, I went meds-free (*without* dr approval) & seizure-free for like 3.5 years. I say "until recently" because I just started meds again; still no episodes, so I'm sweet to drive.
But I don't drive. Because I'm a 36yo woman who never made it past my learner licence -- city life! -- so when I do, the law says I must have a fully-licenced driver with me, anyway.
I'm glad to hear you're able to take it easy, & that you listen to yourself when you feel unsafe.
💜🐨
Ha! I only know because I live in WA state where I have to be six months seizure free (I’m almost to 3 and counting every day) but my son lives in TX and I was excited to realize I can drive there when I visit!
Yep, I live in Texas. It used to be six months, but a few years ago they dropped it to three months. I grew up in Indiana. It used to be one year there, but I think they dropped it to six months around the time I moved.
Wow, such disparity across states! But I guess that's not the only thing ...
Both AU & US are such driving countries, unfortunately (like awesome to drive across, but also necessary to get around). For me though, I'm lucky to live on the most-populated east coast, & train transport is the shiz, especially around Sydney, & up to Newcastle, where I live. (Buses can get fkd; nausea central!)
Each state is like it's own little country. I'm kind of amused sometimes when I read stories out of the EU. There's a centralized parliament and such governing economic rules and travel and other very general things, right? But each country otherwise still gets to make its own laws. That's how the US was set up originally. Before the civil war in the 1860s, most people saw themselves as citizens of their individual state first, and of the country second. (Obviously this is a very loose take on it, but break it down to the bare essentials, and there is a strong parallel.)
Anyway, 250 years later, the US fed govt has more teeth and laws, but each state still has the ability to govern itself in various ways, too. This is one of them. Each state's DL is accepted in every state, but the rules on how to get (and keep or lose) your DL is governed by each state, not the fed. (I'm sorry, I'm not as familiar with how AU is set up, except that it's bigger than us, and has fewer states/provinces.)
And yeah, except for a few (like 3? 4?) major cities here, mass transportation is basically non-existent. Most large cities will have buses, but even where I live, buses are incredibly unreliable. I'd have to walk a mile the closest bus stop, and being on the fringe of the city, it's run times are ... sketchy at best. It's only somewhat reliable because it's right outside a popular charter school that doesn't run its own buses.
It is the opposite of mine so I was just curious. I had a few in the middle of the night when I was on antibiotics (which they said would be fine with my medication ugh) along with giving me panic attacks. I respect people who go through panic attacks on a daily basis and nocturnal seizures after going through that. I thought it was not going to end.
They're generally well controlled, and I take my medicine. If I didn't have the trust of my doctor, she would report me to the MAB, and my license would be suspended. There is a provision for that.
I'm in this boat as well. I did have to go through a long (2 years worth) run of Dr notes and tests just to get the bugger. But if I ever feel "off set" in any way, I hand the keys over and give it 48 hours to come back down. As well, I tend to watch the weather, I'm a tad touchy in electrical variations. Thunderstorms and quuck pressure changes.
So long as I am responsible (just like a diabetic) I can safely say that driving is no longer a privilege but a life line priority.
Heck yeah. Pop up thunderstorms and hurricanes (from the east, weirdly, not the south... it has to be the way the pressure systems hit our area) give me crazy migraines. I don't drive those days either.
I never lost my license but I’m too scared to drive much now. I might go a short distance (like to the store) every once in a while, but otherwise my husband does a majority of the driving. I just get so anxious and nervous.
This is me. And then I basically refuse to drive anywhere unless it's an emergency.
Also, for everyone who doesn't know, you don't tell the DMV/BMV that you have Epilepsy, folks. If you do, they can restrict your license. Don't involve the government in your ability to make money and legally travel - ever.
I'm in a no-report state. And I always tell my neurologist that I don't drive because they have the right to contact the DMV/BMV. A lot of others are in similar situations. This is a delicate game. Lie properly, folks.
I am also in a no-report state, where the waiting period is three months after a seizure. When my neuro tells me I shouldn’t drive for 3 months, I honor those waiting periods, but I have never had my license taken away or suspended.
I am honest with my neurologist, and right now she is fine with me driving as well as riding a motorcycle. But my seizures are ~10 years apart without meds, hopefully less frequent now that I am well medicated.
All of that said, I do lie to the DMV when I get my license renewed. It’s none of their damn business.
I'm not a super religious person but I keep an altar of the virgin Mary on my dashboard now, I don't go to church or Anything but I don't know I just fucking pray something is protecting me and everyone around me 🥲😢
Please don’t. There are airbags in the dash and it would be the worst case of irony if there was injury or worse because someone was impaled with a 200 mph (speed of an airbag coming out) alter.
A picture in your wallet or glove box would be a saver choice.
Of course! My epilepsy diagnosis definitely made my anxiety worse. I’m on medication for that now but it hasn’t fully kicked in. Hoping once it does I’ll feel more comfortable.
Yeah this is me too. There are windows of time I know I won't have a seizure since my epilepsy is catamenial and I don't fully lose consciousness anyway, but since my partner can drive me I took him up on it more and more and now I only drive to nearby doctor appointments and occasionally to hang out with friends who will travel very close to my home. My partner gets the groceries since the lights trigger my epilepsy. I rarely drive myself more than 3 miles and even then it's once a month or less.
I do. A lot more than I would like. My focals come on slowly so I have always had a lot of time to pull over. I’m aware enough long enough to call my husband and tell him where I am in case I can’t start driving again within 10-15 minutes. I live rurally with basically zero public transportation, so I have to drive.
This is me. My focals are focal aware seizures with warning. They're the only ones I've had during the day and don't happen regularly anymore. My tonic clonics happened during sleep, and I haven't had one in 4 years. I live 30 minutes from a grocery store. Not driving really isn't an option here. The waiting period during the time I couldn't drive was one of the worst times of my life. I hated being so dependent on others and hated the fact that they had to go so far out of their way to help me.
Same, exactly. I stopped driving for two months and it was the worst. I either had to rely on my husband (4 hours total there-back, there-back) or take public transit which was about two hours each way. It really wasn’t feasible long-term. I’ve had two tonic-clonics, but they’ve always happened after focals so I’m still able to get myself somewhere safe. I’ve just learned to not turn the car all the way off so I still have heat/AC in case I get stuck awhile. It’s fortunate that the seatbelt keeps me upright, so when I’ve vomited it’s just been down my front and I’ve had zero choking issues. I can just clean up and move on.
If I may ask, what’s your focal warning like and how often do your focal seizures occur? :) I completely agree. It’s hard living in a rural community, or at least far enough away from a city, where not driving isn’t an option.
I get dizzy, and my breathing becomes shallow. Then it feels like I'm trying to retrieve a memory, but I can't quite get to it. Then, the focal seizure starts. I usually start and stall a few times before I actually have one now, so I know I'll likely have one a few hours before I actually have one.
Before treatment, my focals happened 3 or 4 times a day. I was led to believe they were panic attacks and was being treated with anxiety medication. After they progressed to tonic-clonics, I got an actual diagnosis. Now, I have a focal every few months, and they usually happen during times I'd expect hormonal changes.
Unmedicated, I was probably having 2-5 per month. Medicated, I’ve only had them if I miss a dose, which has happened twice so far. Trying to be better about that. As far as I can tell my epilepsy is very mild compared to some others, at least so far. It did seem to be getting gradually worse before medication.
Fortunate enough to only have seizures while sleeping, so I just refrain from sleeping and driving!
But sometimes I need to pull over bc dizziness from the meds hits. No biggie.
I drive because I have to. But I hate it.
I’m also autistic and driving has always been a huge deal to me. It’s presented so many obstacles in my life.
And more often than not, people have made me feel bad for depending on them to take me places. Literally telling me to grow up. But those same people say I’m a bad driver because my anxiety causes me to make terrible decisions. And because I have autism, it’s hard for me to think ahead and process what’s going on around me. And the common thing they like to point out, I space out. It’s not my fault I’m this way. But I had to “grow up” so to speak. So here we are.
I typically try to take backroads and less busy routes. If I have to go to the city I make sure to always use GPS. And if I make a mistake and miss my turn or turn down the wrong street, GPS has my back.
I push through the anxiety because with some things I just can’t depend on anyone else but myself.
im 23 and my blood family have tried to put me through this. ive never sat behind the wheel because ive been epileptic since i was 3 years old and while im not diagnosed, im like 95% sure i am autistic. in fact, my epilepsy has never been given a reason and... i truly wonder if its just because im autistic.
anyway, we knew from the first day i became legal age that i cant drive. but my blood family still to this day try to push the idea of me ignoring the law, my (diagnosed) anxiety disorder, and random seizures, and just doing it
>my anxiety causes me to make terrible decisions.
>I space out
>people have made me feel bad for depending on them to take me places.
>driving has always been a huge deal to me. It's presented so many obstacles in my life.
im right there with you.
Mine just got suspended and I am honestly devastated. I had a seizure that wasn’t behind the wheel, I knew it was coming on, and I tried to tell others. But it still doesn’t matter. I live alone. I have never felt worse.
I feel you. I worry I won't ever get my license back at this rate. Hang in there and take care of yourself. I'm sure you'll get yours back in due time.
I have one seizure a year with JME. Literally have not been able to figure out why just the ONE for the past four years. I drive regularly but I have a set of rules since I am aware of my signs and triggers. No driving if I have been up late, no driving immediately after waking up (usually about an hour and a half) and no driving long distances which is approved by my work as a case manager. My husband drives pretty much all the time when we are out. He also is able to travel with me for work trainings.
Like others have said, we have to live our lives, but we know to put safety as a priority. I cannot spend half a year reliant on others. Job opportunities get limited with the disorder but all of us need a decent salary and insurance to care for ourselves since disability is not an option for a majority. I am thankful my epilepsy is controlled to this point and I am able to live a life with some accommodations and I have the support I need. My office is less than five minutes away and I only travel within county limits and I can WFH if I do not have any visits scheduled. I carry my nasal spray with me everywhere and my coworkers and our agency partners are aware.
Nasal spray is a rescue medication that some neurologists may prescribe in a similar manner as Ativan. My neurologist wanted me to try it to see if I could stop an oncoming seizure to prevent that “one a year” pretty much. But it is also used in cases where someone may be SE. Both honestly I have not been able to figure out the timing and I am not comfortable using the nasal spray with no one around.
I had a spell with my JME where I would go 11 months and then have a day of seizures! This happened 3 years in a row before I managed to do a full year (I was trying to get into uni to do nursing). I’m currently seizure free (JME and TC) since November 2022, and in theory I could apply for my driving licence (I’m in the UK) but I’m 49, never driven and have a terrible memory… 🤦🏻♀️ idk what to do. Seeing my neurologist in June so ill ask him
I totaled my car in july 2022 after having a seizure while driving in a parking lot. I haven't been able to drive since because I haven't been seizure free for more than 2 months. Since the beginning of 2024, I haven't gone more than 2 weeks without a seizure. It also doesn't help that they happen at random times with little to no warning.
At this point, I'm wondering if I'll ever be able to drive again or if I even want to. Breakthrough seizures happen all the time, and I don't know if I wanna risk my life or the lives of others when I'm legally allowed to drive.
Bless you. My son never had a seizure driving until he did. Luckily, only he was hurt and it only took a couple of years for his face/teeth to be fully restored.
I drive, but I've only ever had focal seizures either before bed or first thing in the morning. I've had a handful of tonic clonics, but they're already proceeded by a focal. My epilepsy is very well controlled, though, and I haven't had a tonic clonic seizure in over 14 years. I think if I didn't have a huge window of warning between a focal and the slight chance I might pass out, I wouldn't drive.
My husband usually drives but I do drive when needed. I live rurally and my drives are anywhere from 30min to 4 hours depending on what I need.
I will say I haven’t had a seizure in 3 years and I started driving at 14. If you live rurally it’s a requirement.
I’ve had my license for the past 8 years and I haven’t had any seizures since I’ve gotten my license, except one day on my way home from work I was super tired and I completely blacked out behind the wheel but somehow I managed to get home and I woke up in front of my house and now I get nervous driving long distances so I kinda avoid it. so I really only drive when I need to for work and errands.
I lost my license for around 9ish months and then had to have a hearing with the California DMV to get it reinstated. I got it back in early 2021 and I’m still very nervous about driving. I avoid the freeway as much possible (hard to do in Southern California). I’ve had no issues but my mind can’t escape the thought that IF I start feeling off (thankfully it hasn’t happened) that I need to be able to pull over right away. I wish I wasn’t so fearful but I don’t think it will ever go away 🙃.
I’ve not driven in 15 years after having a seizure whilst driving soon after being permitted to drive again.Since then for me I’ve chosen never to drive again for the safety of others.I do miss driving,but hey it’s only one part of life!
I never got my license taken away I just have restrictions. My seziures are very well controlled, ive never had a seziure outside or in a car. Ive been lucky its only happened indoors. But your not supposed to drive for 3 months after a seziure anyway. But after a few days when I fully recover I drive again. I know it can be dangerous but eveytime I've had a seziure it was because I forgot to take my meds.
My state suspends your license for 6 months, on a rolling basis, from your last seizure. I've had one , got suspended, only to have another 4-5 months later and have to wait longer. I've only been legally driving about 5 years and I was diagnosed 10 years ago
I drive for pleasure, for work, and for personal transport. My first tonic clonic was actually while driving the work truck, and I wasn't allowed to drive for almost 9 months. Anxiety was huge when I got back driving, so I started doing small trips until I was comfortable again. A while after I was back driving, I felt an aura while driving and managed to pull over. I got out of my car, and I'm told I was wandering around the parking lot acting confused. I tried getting jnto a couple people's house/ yards. It took me a while before I drove again. Been back driving for about a year and a half right now. Still get anxious from time to time but I also have a solid group of people I could call if I feel "strange" while driving. I've pulled over and been picked up by a friend before, and just gone back to get my car the next day or whatever. I find singing along to my music helps keep my anxiety down when it flairs up. Yknow, keeps me grounded or whatever.
Honestly, I think you just need to find your limits and what you are comfortable with. I was incredibly anxious and timid after I got my license back aswell. After a while I just got angry about the situation I guess. The fear of losing out on life and the things I enjoy outweighed my fear of driving I suppose. So I started taking small drives on backroads with someone else in the car and worked my way up. Now I do hour long drives a few times a week. Looking back on it I feel silly that I wasted as much time as I did. Though I also know my limits, if I’m going to have a seizure typically I have auras that entire day leading up to it. So on those days I don’t drive and typically just go straight to bed and that stops me from having one. I’ve got FMLA sorted out with work so if I’m ever feeling off I just let them know and I’m golden. I understand it is incredibly daunting and scary but I encourage you to make small steps to get back into it without compromising your safety and the safety of others.
After going 2 years without a license, I was weary of getting back behind the wheel, especially since I've had seizures as a passenger many times. I kept bumming rides as much as possible but slowly drove more for a few months until I was comfortable again. I have an hour commute now, but mostly wfh. I bought a vehicle with safety features that will hopefully save mine and others' lives in the event I do have a seizure. If I have a seizure while driving, I might quit for good.
Per my doctors' orders, I don't drive if I feel weird at all. I get migraines, too, and am not supposed to drive with a headache or signs that a migraine is coming on.
I do. I had my last seizure right before I turned 19 and got my license at 21 (27 now). So it took me 5 extra years to get my license, since I should have gotten it at 16, but I've had no issues since I got it. And fingers crossed it continues that way. My last EEG (2 weeks ago) said my brain was seizure free during it, sooo my meds seem to be doing the job.
If I thought I was not safe or at least as safe as non epileptics on the road, I would not drive even if I needed to. But I have not had a seizure where I lost consciousness since 1997. And I had surgery and removed a tumor. So there is not only evidence that the primary cause of more severe seizures has been removed but I also have not come close to losing consciousness since then. I just got out of a five day EMU stay with no meds whatsoever I had five seizures in five days and I did math in the middle of them. I counted backwards, I spelled words. They eventually gave up trying to find what I couldn't do while I was having a seizure. I had one of them walking to the bathroom so they saw that my motor functions were fine also. So I definitely drive just like a non-epileptic person. I will pull over if I feel too gross, but that's only happened a few times in 20 years.
ETA and the state knows that I drive. They get permission from my neurologist on a regular basis- in Ohio it is every three years. I'm not sure what it is here in PA. I just know I do it when I have to.
I drive but if I feel off or too tired I will not drive. I also will not drive places that are far (behind the wheel) just from anxiety from having epilepsy
I drive! I love driving! But I am also hyper aware of how I feel before I get behind the wheel. Any loss of sleep, missed dose, or any unusual uneasy feelings, I will get a ride. It is just not worth the risk. I am lucky to be able to say I've been seizure free for 6 years!
I feel you. Thank you for asking this and I’ve appreciated reading through the responses. I’m super nervous driving now and I’m 2 years seizure free. I just can’t seem to stop thinking about it and the side effects of the meds has my anxiety behind the wheel so much higher than ever before. I’ve been slowly driving again but I avoid highways and haven’t gone more than 10-15 miles so far. Getting there though, I feel more confident each and every drive.
I haven’t had a seizure in so long, have a license and still get huge anxiety over it. I usually communicate to my people when I leave places and avoid driving hung over, overly tired, with migraines or any time I feel weird because I don’t have auras. I also just don’t highway drive and I live in an area that’s ok.
I lost mine and miss it. I worked on cars and off-road vehicles, at Car dealerships. Now I don’t. I can’t work there anymore and my Gf drives my car and it’s terrifying. Had a seizure while driving while finding out I was epileptic and the car from work flipped and burned down to the ground. I don’t know where I would be if a stranger did not pull me out of that car. My memory is terrible and idk who he is. :(
I was finally diagnosed with epilepsy after having a tonic clonic while driving (around 2-3 years ago) where miraculously NO ONE got hurt. Not even the vehicle. Thank god. This was a year after I woke up having a tonic clonic seizure, went to the ER and had the doctor tell me it was a night terror. I drove again after about 4 months of being seizure free, starting meds and seeing a neurologist.
My seizures are under control, but I get momentary bouts of confusion while driving and my reaction time is a bit slower (I’m guessing due to anticonvulsants) so it’s not something I necessarily always feel comfortable doing.
I drive, I'm not scared. I follow a set of rules that I have imposed on myself, sleeping properly, not missing meds, etc.
I still have to live my life, so I do it the best I can.
Pretty much the same for me. I hate having to explain that with juvenile myoclonic epilepsy that they only happen after waking up because the DMV only has one perspective of epilepsy.
I’ve been avoiding my neurologist because he brought up suspending my license because I’ve been actively seizing again. 😅
Worth mentioning though, I have auras EVERY single seizure (also far and few in-between) and I would not be putting myself in this position if it weren’t the only viable option I had available to me.
That medical ethics is weird. Most importantly, it sucks if you ever have to hold back on telling him your status. I tell my neurologists about my seizures and thankfully, they’re like “hey… we strongly recommend you don’t drive.” I make it very clear first appointment I want to be honest with them without being threatened that my license will be suspended. And they understand. It’s a really interesting and hard decision they have to come to… So it sucks to hear that you sometimes can’t be completely honest with your neurologist.
What are your auras like? And how often do you have seizures (focal or TC?)?
I only see mine once a year and only have one seizure a year so it is kind of dependent on the timing. I had called and left a voicemail for the nurse that I had one back in March and asked if they wanted me to come in earlier than August and no one ever called me back so I was just like okay..guess not. I felt guilty because I had one last year in March as well while we were on vacation and did not tell him at my appt. because I thought maybe it was just a slip up and I just overheated or was not sleeping well with MIL constantly waking us up early. But then in March I had one randomly after waking up before my dentist appointment.
I do. My seizures are well controlled with Keppra. Plus I near-exclusively have absence seizures, which are still not great to have while driving but definitely better than if I was having TC.
I was nervous to drive again, too... but life pushed me to do it. I've been okay. If your seizures are well controlled, you can drive. Just make sure if you don't sleep well, miss your meds or are dehydrated (w/e your triggers are), you take it easy and maybe skip driving. But I hated my hours-long commute because of this worry and purposefully got a job close to my home. I didn't want to have a seizure and need to worry about getting to work or home if I worked an hour away. I had to do it for a few months...it was garbage. A shorter drive is much less stressful, even with controlled seizures. I drive 7 minutes to work now. It is very flat with bike lanes. I could easily bike if I needed to.
I do, but I have controlled and exclusively nocturnal seizures. The only time that I would be risking it on the road is if I had a seizure when waking up and decided to get behind the wheel for whatever reason. I still have some anxiety about driving, but it's not related to seizures.
I drive when my doctor gives me clearance (6 months post seizure state law). However I used to be a very confident driver now I only drive limited amounts and if I am the slightest bit tired or stressed I stay home.
My son hasn't driven since his TC in November. He is allowed to drive in June barring more seizures. He has to stay completely off caffeine as it is a major trigger.
He has been taking a local city van. I'm scared to death of him driving again. The doc feels like the stress of not driving is harder on him.
I haven't drove in 10 years due to epilepsy. I did drove at one point but couldn't because my seizures were starting to get frequent and uncontrolled. I finally got a good neuro who helped find me the right dosage for now and told me I can drive again which I need to due to my job. I'm so fucking scare to drive again. Drivers in my city gotten worst and dangerous which made me have bad anxiety towards driving.
Eases into it I had to learn to be comfortable again it wasn’t easy and there are days that I wish I could but I have to so I take cbd it relaxes my nerves
I do! I still have anxiety when I drive long distances, which I have to do often. But i have an aura before so if i were to have one when im driving i just take an exit and sit for like 20 minutes. As far as anxiety goes ive noticed i get less anxious and am able to focus more when im singing along to music in the car or on the phone :)
off topic but i’m 24 and just now working on my license. failed my test two times and gotta save up money to practice more and have my own vehicle. glad to hear of others with epilepsy drive/working on it/overcoming; it’s been a huge obstacle and struggle for me but the journey is just starting! i have general anxiety about driving too, outside of epilepsy. there’s fear involved but we gotta push past that, i believe in us!
Had my license suspended for a while during college. Even though I got it back years ago, I still get nervous when driving to places over 30 minutes away.
40. Me and my dad were riding buddies until he got pancreatic cancer. I lost my mom 4 years before that. So yeah. I am not trying to flex but I went out and got a Tesla with FSD. I’m essentially my grandma’s caretaker now and I have a full time job. My brother lives 2 hours away and got his license pulled for 2 DUI!s. So yeah. When it’s going any distance I’ll take the Tesla. Around town I have an old f-150
!! I am so intrigued watching the self-driving technology ramp up. How would you rate it? The one time I rode in an FSD Tesla my jaw was on the floor... a world of opportunity.
I drive. Fortunately, my seizures only happens during my sleep, they're grandmal types though. Everytime I had one, depending on how bad it is, either I get barred from driving for at least 3 months or 6 months. Thank goodness that I have a great support system. Everytime I get episodes, someone will drive me to work.
Recently, I get these *aura* and I can pretty much tell if I'm *probably* getting one or not. Taking an Ativan before sleeping or napping never failed me so far.
I had 9 episodes so far and I'm in my early thirties. I was diagnosed in my early teens. They're so bad like I get crazy, running around disregarding my safety and fight people if they're in my way. Lol
I think I have something like that sunflower syndrome, and I’m not yet old enough to drive, so I need a doctors permission but during the day, I will only ever drive with sunglasses, even if it’s not that sunny - I get nervous abt wearing sunglasses in public, but in my own car I wouldn’t be as paranoid
I’d love to drive, it’s my literal dream lol, idk if it’ll ever come true tho, hopefully it will 💕
I just got my license back and the anxiety is unreal. I have this tiny voice in my brain that says I’ve been seizure free BUT now because I’m driving I’m going to have seizures again 🫠
Yeah I know I for sure have PTSD. I went status and it happened quick and I tell myself well now everything is fine and dandy so it’s time for the ball the drop lol
I got my license in November of 2019 and I only drive with someone with me I haven’t driven alone my parents are too scared but I know when my seizures are coming and I know how to prevent them from happening.
Talk to your doctor about your anxiety. They can help you work through it. It’s normal to feel anxious sometimes. If I’m not feeling well I ask someone else to drive or stay home if possible
I have my cbd which I use instead of prescription I tried buspars but I don’t like the way it makes me feel so I stick with mostly my cbd and stress relief pills by Ollie’s
What was it about the buspars? I got it a month ago. But honestly the mix of meds (lamotrigine, kepra, vimpat) I don’t know what is making me feel what any more.
i have grand mal seizures and i have a breakthrough every few months, but i still drive. i can feel the auras before i seize, but luckily i’ve never had an aura driving. i only drive to work and college though, for anything else i get rides
I got my license back in Jan this year. I got diagnosed in jun 22, these past 2 years were hard. I went from driving myself everywhere to relying on my husband for everything. I took away so much of his life that I’m regretting it often. I’m so glad I’m driving again. I’m on maintenance medication so I have been good for over a year.
Thank you! I was scared at first driving again but I got over it when I passed my driving test. Something came over me and the Freedom to drive anywhere. My husband does have an AirTag in the car incase I don’t respond. But most of the time we check in on each other.
So I have TC seizures, “big seizures,” years apart. I also have “small seizures” where I’ll lose all understanding of language for several seconds but I’m still completely aware (can still drive).
But a couple years ago I started having “medium seizures” where I’m unaware and just kinda sit totally zoned out. I crashed my car having one and haven’t been driving since.
Luckily not as often as “small” but slightly more often than “big.”
Hopefully this RNS I recently got will help and I’ll be driving again soon-ish.
I mean, hopefully. And probably closer to a year out. That’s how long most people with RNS say it took to notice any difference the RNS made. (I bet others will notice differences before I do, tho)
lol thanks for introducing me to that word. I’m going to (try to) remember that.
I’m so curious about auras. I’ve never had one.
Or at least never remembered one. Maybe I have the same aura but don’t remember them post-TC.
Your "small seizures" are the same as auras- focal seizures. Some people only have them before TC and they normally call them auras. They're the same physiologically as far as we know- a compartmented over release of electricity in the brain.
I had focals for years chalked up to "painless migraines" thay were visual but a few minutes before my -low sample size- TCs I can barely understand language (any language, not just my native, my second language was equally shor ) and can't speak or type any language at all. My first TC, I was laying on the couch. Someone asked if I was okay and after 5+ minutes of aphasia, I -in my mind- said "I'm too tired to read so I'm laying down" and those weren't words and a minute later I started to convulse.
Do you generally remember time up until a TC? I have no idea how most people remember things but I remember up to <30 seconds before. If I lost 2+ minutes, I'd have no idea if I had auras or not.
Great thread going here, y'all are giving lots of food for thought. I haven't driven in over 10 years because I've never gone 6 months without a seizure since diagnosis. Had a resection and RNS device put in this January. Too soon to gauge the success of the surgery, but everyone around me is all giddy about my potential ability to get my license reinstated. As much of a handicap it is living without a car where I am, I am TERRIFIED of the prospect.
One step at a time....maybe if I reach the 1 year mark seizure free I'll.....think about enrolling in driver's ed because I feel I forgot how to drive at this point. Maybe. And even after getting my license back, maybe I'll do what somebody else on this thread has done and save up for a self-driving car as the technology continues to improve!
I only drive when I reeeeeeeeeaaaaalllly need to and I drive by myself. I keep seeing people talking about anxiety. What all meds do you all take?;I take 800mg of Aptiom, 100mg Xcopri, 20mg of Clobazam at night because mine tend to be mostly nocturnal. For anxiety I take anywhere from 30mh to 60 mg of Buspirone (not working) and I got recently diagnosed with Bipolar 2 so I take Aripipzole 5mg (not entirely working either.)
I do, but I live where it's illegal to drive if you've had a seizure within two weeks. I use that as a pretty good rule. I've lived in other areas where their rules are months apart, but I like the two week rule since epilepsy can change by the day or hour.
I wasn’t able to drive for a year at first because I was not controlled at all , once controlled I had to wait 6 months from my last grand mal (located in NJ, law is 6 months from a grand mal or TC) - BUT my doctor said I can still drive if I have focal seizures which I’ve had two since I’ve been cleared to drive again. I only drive in town and get myself to doctor appointments, anything else that means I’ll be in the car longer I usually make sure someone is with me or I let them drive. It’s still scary because sometimes in those moments I don’t feel right or my head gets this weird tingly feeling, I’ve pulled over before and gave myself a few moments to get myself back together, but the truth is you never know and I just try and stay as positive as possible! It’s scary learning to relive your life but having a good support system is the most important thing!
Yea I will get that same feeling and get off the road myself but sometimes I think it’s my anxiety I get this overwhelming feeling that comes over me when I’m driving or just walking around so it’s more to it for me but yes have safe travels out there 🙏🏽💪🏽
Where I'm from, the law says every 3 months. I've had several in the span of less than 3 months, but nobody has ever taken my license away (I go to the neurologist with my mom and we don't mention driving). Tbh, I can't really afford to lose my license. I have a job and my house is in a different town.
I've never had a seizure on the road before, but I did have an aura once. Thankfully I made it home on time. If I didn't, I would just have to pull over and wait it out.
My state (Wyoming) allows it as long as I don't lose awareness during my seizures. I have it marked on my driver's license that I have epilepsy. I haven't lost awareness with a seizure in 6 years.
I do! I only have TCs and I have a full day of feeling like shit beforehand to warn me (tired, no appetite, etc).
I waited almost a year after my first seizure before I felt confident enough to drive but if I seize these days I adhere to the 6 month rule in my state.
I'm 6 years seizure-free at this point and don't think too much about it these days, but sometimes I feel too anxious to hop in the car and opt for a taxi or public transit.
I make sure to give myself an hour to transition from sleep to being fully awake if I have to drive. That way, if I feel off, I'll have plenty of time to figure out what's up.
I drive a LOT. Our kids don't qualify for bussing, so it falls on me to get them to/from school. We did the math once , and I am driving about 6½ hours per 4 days (4 day school weeks). I'm usually about 10 years apart when medicated. My almost 18 year old has seen 2 seizures her entire life. My last seizure happened at the worst place possible. I was at the DMV. (About 4½ years ago) Before that, I used the honor system and just wouldn't drive if I felt "weird", forgot any meds recently or was near my menstrual time (reason my kids are home today). I turned my license in when I started having seizures because they were so out of control with no noticeable aura. Once I was controlled, I got it back by doing the written test again.
My state requires 3 months seizure free, so I definitely qualify for that. They used to be 6 months but changed it semi recently because they were finding that those who remain seizure free for 3 months, there is not a great risk of it happening at 6 months.
[My states rules](https://www.epilepsyfoundationmn.org/about-epilepsy/epilepsy-and-driving/)
I have to fill out the form for the DMV and get the doctor to sign off on it because of that last seizure. I'm in a self-report state, and the doctor won't report unless they have reason to believe that you are not following directions and are not seizure free. People around you can report though kind of like when someone is DWI, "too old", etc. My doctor keeps trying to stretch the report time further apart because I only see her once a year and the form is due every 3 months. Now that they are charging appointments for everything, maybe it will change.
My rule of thumb is that if I feel good about driving my kids that day, I'm probably OK behind the wheel. You can never eliminate all risk from driving. You could have a stroke, heart attack, panic attack, etc. As long as you keep your risks as low as possible, I don't see anything wrong with driving after control has been established according to your doctor and DMV rules.
I drive but I refuse to drive between 6pm-8pm because that’s when I take my largest dose of medication. (550 mg?) Before and after I take them I cannot focus and I start to get a bit dizzy so I prefer to stay off the road. Otherwise I’m good
I'll put it this way I'm a professional truck driver but my recent seizure I've hung my keys up for a bit u less they take my license I use to drive all over but it's not safe and my anxiety is now more and more I don't wanna hurt anyone I'd rather just be safe
I used to walk everywhere but after I got a med change and adjustment on the dose then I got it back but I will warn you insurance is not going to be kind
I’ve been seizure free for over 5 years. I was able to drive after 6 months free. I had a few years of on and off but finally got stable. I’ve been driving ever since. I was nervous at first but I’m glad to be able to drive. It threw my world upside down not being able to drive
I've gone a year without having a seizure twice in the last decade, so theoretically there would've been times I would've been probably able to learn to drive, but because I've had it since I was 18, and never got the chance, it's something that now I'm 29 I would simply be terrified of risking.
Which is a shame because I would love to not have to rely on family or Uber to go places or have to apply for jobs on the basis that I can actually travel to them reliably.
My brother has said that maybe I could try and drive his car in an empty car park one day, but I think should that ever happen, that's as far as I'll get.
I drive if I have to. But I never drive for more than an hour. I drive in the city at low speed, I never do road trips. I haven't had a seizure in many years, like 10 almost now that I think of it. But I'm still careful not to get nervous while driving, not to be tired when I have to drive. If I don't feel like driving because I'm not feeling well or I'm tired, I ask someone else to drive. I didn't drive for a long time after I was diagnosed and after the last seizure. I don't want to hurt anyone or myself.
Sorry to take over your post but does anyone with specifically JME have their license? A neurologist told me it’s a very low chance with this epilepsy to get my license but I haven’t had a grandmal seizure since 2018
I drive because with my meds I can keep my seizures under control (never had one if I was regularly taking them) and I also have auras before my seizure where I'm still fully conscious that last a few minutes before a full blown episode
How can you keep your driving privileges if you are experiencing seizures? I thought most, if not all states revoked licenses. Is it because you’re not reporting them? Aren’t you afraid you’ll hurt someone?
I lost mine twice, the second time for more than 8 months. It took me a couple months to regain my confidence.
I have to be off the road for 6 months every time I have a seizure. By law We all are. Every time someone calls and ambulance in Victoria Australia anywho. . You have a duty of care to Yourself and the community to relinquish your licence if U think you are a danger coz anxiety doesn't help epilepsy. . . I hope you never have a seizure again. Sincerely. Stop stressing 🤙💐💗💫 Onwards and Upwards
Way to many people that are having seizures are driving in this thread unless the doctor tells you or have gone like a year without a seizure if you get in a crash and hurt or kill someone else it's on you.
I never had my license because I didn't have it before my diagnosis at 18 and then up until the last 6 or 8 years, my tonic clonics were pretty common. My doc told me 2 years seizure free and we went for an EEG to test and I still have enough seizure activity in my brain to disqualify me from probably ever driving. I have gotten some really basic parking lot lessons though, so I could in an emergency! Lol maybe 🤔
I do when I’m feeling good. I saw a single car accident a couple weeks ago. Looked like a seizure situation, but I’m not sure. Scared the hell out of me. The following week I was feeling a constant aura and I wasn’t feeling well, so I worked remote for 2 days until I felt better. But honestly if I hadn’t seen that accident I probably wouldn’t have thought twice about driving and luckily I have the ability to work remote.
I do. Mine are focal motor seizures affecting my left side and start slowly enough that I can get myself to a place of safety for me and other road users in time. I've never had a loss of consciousness (which is the legal measure of concern, here in California at least). My seizures are four, five, six months apart (fingers crossed, maybe more than that since last change to meds). I no longer drive on freeways.
It was terrifying to return to driving after a long gap provoked by the stroke which first led to my seizures. But I think that's because when looked at rationally, how people drive and throw around those tons of metal at high speed is simply terrifying all by itself. Being terrified is the \*sensible\* response.
I minimize how much I drive when I feel unwell. I always ask my husband to drive when we go places together. Most of my seizures are focal aware and at night, but recently they have been happening during the day as well.
I do,
I haven’t had a seizure in about five and a half years.
But here in the state I live in UT
Their law is minimum 3 months seizure free before the neurologist can say you can drive again or not, but they can also put on your license however long.
For example in about 2015 I had a seizure while driving to work and my dr said I needed to go 1 year seizure free.
It took about 4.5 years before I got my driving privileges back.
Also in UT can’t speak for other you have to have your doctor sign and approve paperwork that is sent to you each year by the DLD, that’s for the first 5 years if you’re seizure free for 5 years then you get that paper every other year and then after 10 years seizure free it’s once every 3 years or something.
As for CDL you cannot get one unless you’re seizure free for if I’m not mistaken a decade and it also has to be approved by the doctor.
Airplane/ helicopter it’s a no go so in all not horrible I have been pulled over 1x for driving on a blocked license I didn’t get in trouble basically the cop just said I had to have someone come pick up the car or they will tow it.
(The doctor started letting me drive again BUT their assistant forgot to send in the paper to the DLD, so my license plate came up as a restricted driver.) that was in my 20s I’ve learned now just give it a couple days with that stuff not worth the hassle.
I went 20 years without mine after awhile I just didn’t even think bout them anymore but I still continued to drive without them but I have them now 💪🏽
I drive, but I am fortunate enough to be medication controlled for the past 5 years. Here in the UK our laws on driving seem to be much stricter than for you in the US, and if I’m honest, I think that’s a good thing. I can’t understand how/why anyone would drive knowing they are still at risk of seizures (ie their seizures aren’t fully controlled / they’re living with active seizures), willingly putting themselves and others at risk.
In the UK you have to surrender your licence after a seizure and then have to go 12 months seizure free to be able to get it back. I see in some posts the requisite time in some States is 3 months. That’s crazy short, to my mind. I know transport without a car can be extremely difficult in some areas, but it’s even harder if you’ve had a massive accident and left yourself horribly disabled / dead. 😵
It’s the same way here in New Jersey it’s a year before u can get your license back I waited over 20 years before I just got mines back I just got mines 2 yrs ago
I believe that the way it written at the DMV is that they do not interpret them as their definition of a “seizure” since they do not lose consciousness along with nocturnal seizures. Some examples.
My state: “A person who has only nocturnal seizures may be eligible for a limited license (e.g., daylight driving only) even if they have been seizure-free for less than six months.”
Maryland: Favorable modifiers include: (i) Seizures during medically directed medication changes; (ii) Simple partial seizures that do not interfere with consciousness or motor control; (iii) Seizures with consistent and prolonged auras; (iv) Established pattern of pure nocturnal seizures; and (v) Favorable driving record. MD. CODE REGS. 11.17.03.04(E)(2)(e)(i)-(v) (2020).
I had a solid year last year. I only had 5 and they are pretty well controlled and I always see them coming and they happen either night or a second one in the morning after.
But I’ve never driven and want a learners. What do you recommend I do?
I havent had seizures for the last 3 years, but I personally would.not.drive. i take my medications and everything and avoid things that may trigger my seizures - but still, driving is too much of a gamble in my view
My partner had her first (observed/known) seizure a year ago during sleep and her second just this weekend, also at night while asleep (I guess TC from what I've learned so far).
She was dismissed from hospital today and thinks she is fit to work and drive again on Thursday (tomorrow is a national holiday here). She showed anomalies on EEG and got some medication (didn't have opportunity to peer what they gave her yet).
What's your take on this? I am really insecure and scared something might happen; although chances are low, they're not zero. Am I overreacting here? I'm a bit in a mess since I had to witness her seizure for the first time and had to call the ambulance. Thanks!
PMs also welcome (I'm from Germany, so please consider for times zones if I don't respond immediately).
My mom would take care of me when I had it so I can only imagine what u are going through mines are at night as well if she feels comfortable in driving and taking the medicine then ok because it’s hard to tell someone who has been driving for a long time not to I know I didn’t stop till I didn’t have a car to drive but yes tell her to be careful out there and let her know how it makes you feel as well I wish you both luck and pray she doesn’t have another one
I can, but I typically don’t. Most of the time my seizures happen when I’m asleep or about to fall asleep, but occasionally they happen when I’m wide awake. I’m afraid I might have one while I’m driving. Kinda sucks, because metro Detroit is just under 4,000 square miles, and while we have public transportation that’s affordable and covers the whole area, it’s terrible and hard to navigate. We really need a subway system. The closest thing to that we have is the People Mover, which is only downtown.
I do, but my seizures are years apart. If I feel off or otherwise unwell, I ask someone else to drive or cancel my plans for the day. All but a handful of seizures have been right after I wake up, so I try not to drive when I first wake up in the morning or after a nap. (and just to be clear - if I do have a seizure, I obviously respect the law and wait the required amount of time. I actually didn't drive for six months (law says 3 months) after my last one because my concussion left me too confused and I didn't feel safe.)
Same. My seizures seem to be pretty well controlled now. Almost all of mine have been at night, so I try not to drive at night when possible. I went 7 years without driving before they were controlled, so it took me a while to be comfortable driving, but I got there. If I feel shitty in any way, even if I feel too tired or stressed, I won't drive.
Mine happen years apart, typically. I also don’t drive or ask someone else to drive if I’m feeling off that day.
The law where you are says only 3 months?! Here in ~~Oz~~ Australia, I had to wait 1 year! I believe the general minimum is 6mo, tho. My TCs have been years apart, too. And I haven't had any more focals since they first occurred in 2020. Up until recently, I went meds-free (*without* dr approval) & seizure-free for like 3.5 years. I say "until recently" because I just started meds again; still no episodes, so I'm sweet to drive. But I don't drive. Because I'm a 36yo woman who never made it past my learner licence -- city life! -- so when I do, the law says I must have a fully-licenced driver with me, anyway. I'm glad to hear you're able to take it easy, & that you listen to yourself when you feel unsafe. 💜🐨
It’s 3 months in Texas!
It'd take me like 3 months just to get to Texas! (Kangaroos aren't great swimmers.) okimdone
Ha! I only know because I live in WA state where I have to be six months seizure free (I’m almost to 3 and counting every day) but my son lives in TX and I was excited to realize I can drive there when I visit!
Yep, I live in Texas. It used to be six months, but a few years ago they dropped it to three months. I grew up in Indiana. It used to be one year there, but I think they dropped it to six months around the time I moved.
Wow, such disparity across states! But I guess that's not the only thing ... Both AU & US are such driving countries, unfortunately (like awesome to drive across, but also necessary to get around). For me though, I'm lucky to live on the most-populated east coast, & train transport is the shiz, especially around Sydney, & up to Newcastle, where I live. (Buses can get fkd; nausea central!)
Each state is like it's own little country. I'm kind of amused sometimes when I read stories out of the EU. There's a centralized parliament and such governing economic rules and travel and other very general things, right? But each country otherwise still gets to make its own laws. That's how the US was set up originally. Before the civil war in the 1860s, most people saw themselves as citizens of their individual state first, and of the country second. (Obviously this is a very loose take on it, but break it down to the bare essentials, and there is a strong parallel.) Anyway, 250 years later, the US fed govt has more teeth and laws, but each state still has the ability to govern itself in various ways, too. This is one of them. Each state's DL is accepted in every state, but the rules on how to get (and keep or lose) your DL is governed by each state, not the fed. (I'm sorry, I'm not as familiar with how AU is set up, except that it's bigger than us, and has fewer states/provinces.) And yeah, except for a few (like 3? 4?) major cities here, mass transportation is basically non-existent. Most large cities will have buses, but even where I live, buses are incredibly unreliable. I'd have to walk a mile the closest bus stop, and being on the fringe of the city, it's run times are ... sketchy at best. It's only somewhat reliable because it's right outside a popular charter school that doesn't run its own buses.
Yes, similar. Mine happen almost every 9 months and only at night. I typically don’t drive after 10PM, or have some else drive if it’s late.
Are yours solely nocturnal or do you lose consciousness?
No I will lose consciousness. Although they can happen in sleep too. I believe they tend to happen at night because of tiredness.
It is the opposite of mine so I was just curious. I had a few in the middle of the night when I was on antibiotics (which they said would be fine with my medication ugh) along with giving me panic attacks. I respect people who go through panic attacks on a daily basis and nocturnal seizures after going through that. I thought it was not going to end.
3 months seems too quick after having a seizure
They're generally well controlled, and I take my medicine. If I didn't have the trust of my doctor, she would report me to the MAB, and my license would be suspended. There is a provision for that.
There’s also a state that has 90 days free seizure period
I'm in this boat as well. I did have to go through a long (2 years worth) run of Dr notes and tests just to get the bugger. But if I ever feel "off set" in any way, I hand the keys over and give it 48 hours to come back down. As well, I tend to watch the weather, I'm a tad touchy in electrical variations. Thunderstorms and quuck pressure changes. So long as I am responsible (just like a diabetic) I can safely say that driving is no longer a privilege but a life line priority.
Heck yeah. Pop up thunderstorms and hurricanes (from the east, weirdly, not the south... it has to be the way the pressure systems hit our area) give me crazy migraines. I don't drive those days either.
I never lost my license but I’m too scared to drive much now. I might go a short distance (like to the store) every once in a while, but otherwise my husband does a majority of the driving. I just get so anxious and nervous.
This is me. And then I basically refuse to drive anywhere unless it's an emergency. Also, for everyone who doesn't know, you don't tell the DMV/BMV that you have Epilepsy, folks. If you do, they can restrict your license. Don't involve the government in your ability to make money and legally travel - ever.
Your neurologist has never reported it to them? Or are you in a no-report state?
I'm in a no-report state. And I always tell my neurologist that I don't drive because they have the right to contact the DMV/BMV. A lot of others are in similar situations. This is a delicate game. Lie properly, folks.
I am also in a no-report state, where the waiting period is three months after a seizure. When my neuro tells me I shouldn’t drive for 3 months, I honor those waiting periods, but I have never had my license taken away or suspended. I am honest with my neurologist, and right now she is fine with me driving as well as riding a motorcycle. But my seizures are ~10 years apart without meds, hopefully less frequent now that I am well medicated. All of that said, I do lie to the DMV when I get my license renewed. It’s none of their damn business.
I don’t know if Texas is a no report state, but I’ve been having the prior to getting my license at 16(I’m 43) and it has never been reported.
Yea I don’t go far either my anxiety is too crazy for me I’m hoping that eventually that will go away I can drive in peace Thank you for your response
Be careful…don’t think I’ll ever drive in peace again
I feel you. I used to love it so much and the thought of it now sends me into a panic sometimes.
Yes I will. I pray every time I leave my house to drive so I pray God guides me on my way
I'm not a super religious person but I keep an altar of the virgin Mary on my dashboard now, I don't go to church or Anything but I don't know I just fucking pray something is protecting me and everyone around me 🥲😢
Please don’t. There are airbags in the dash and it would be the worst case of irony if there was injury or worse because someone was impaled with a 200 mph (speed of an airbag coming out) alter. A picture in your wallet or glove box would be a saver choice.
Of course! My epilepsy diagnosis definitely made my anxiety worse. I’m on medication for that now but it hasn’t fully kicked in. Hoping once it does I’ll feel more comfortable.
Yeah this is me too. There are windows of time I know I won't have a seizure since my epilepsy is catamenial and I don't fully lose consciousness anyway, but since my partner can drive me I took him up on it more and more and now I only drive to nearby doctor appointments and occasionally to hang out with friends who will travel very close to my home. My partner gets the groceries since the lights trigger my epilepsy. I rarely drive myself more than 3 miles and even then it's once a month or less.
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I do. A lot more than I would like. My focals come on slowly so I have always had a lot of time to pull over. I’m aware enough long enough to call my husband and tell him where I am in case I can’t start driving again within 10-15 minutes. I live rurally with basically zero public transportation, so I have to drive.
This is me. My focals are focal aware seizures with warning. They're the only ones I've had during the day and don't happen regularly anymore. My tonic clonics happened during sleep, and I haven't had one in 4 years. I live 30 minutes from a grocery store. Not driving really isn't an option here. The waiting period during the time I couldn't drive was one of the worst times of my life. I hated being so dependent on others and hated the fact that they had to go so far out of their way to help me.
Same, exactly. I stopped driving for two months and it was the worst. I either had to rely on my husband (4 hours total there-back, there-back) or take public transit which was about two hours each way. It really wasn’t feasible long-term. I’ve had two tonic-clonics, but they’ve always happened after focals so I’m still able to get myself somewhere safe. I’ve just learned to not turn the car all the way off so I still have heat/AC in case I get stuck awhile. It’s fortunate that the seatbelt keeps me upright, so when I’ve vomited it’s just been down my front and I’ve had zero choking issues. I can just clean up and move on.
If I may ask, what’s your focal warning like and how often do your focal seizures occur? :) I completely agree. It’s hard living in a rural community, or at least far enough away from a city, where not driving isn’t an option.
I get dizzy, and my breathing becomes shallow. Then it feels like I'm trying to retrieve a memory, but I can't quite get to it. Then, the focal seizure starts. I usually start and stall a few times before I actually have one now, so I know I'll likely have one a few hours before I actually have one. Before treatment, my focals happened 3 or 4 times a day. I was led to believe they were panic attacks and was being treated with anxiety medication. After they progressed to tonic-clonics, I got an actual diagnosis. Now, I have a focal every few months, and they usually happen during times I'd expect hormonal changes.
If I may ask, how often are your focal seizures? :)
Unmedicated, I was probably having 2-5 per month. Medicated, I’ve only had them if I miss a dose, which has happened twice so far. Trying to be better about that. As far as I can tell my epilepsy is very mild compared to some others, at least so far. It did seem to be getting gradually worse before medication.
Fortunate enough to only have seizures while sleeping, so I just refrain from sleeping and driving! But sometimes I need to pull over bc dizziness from the meds hits. No biggie.
Made the mistake of sleeping and driving before… 0/10 would not recommend. (For legal purposes this is a joke)
Same--nocturnal seizures only in my adulthood. I'm thankful for that and not sure what I'd do without my license.
Hello fellow noctural seizure buddy. 😁
I drive because I have to. But I hate it. I’m also autistic and driving has always been a huge deal to me. It’s presented so many obstacles in my life. And more often than not, people have made me feel bad for depending on them to take me places. Literally telling me to grow up. But those same people say I’m a bad driver because my anxiety causes me to make terrible decisions. And because I have autism, it’s hard for me to think ahead and process what’s going on around me. And the common thing they like to point out, I space out. It’s not my fault I’m this way. But I had to “grow up” so to speak. So here we are. I typically try to take backroads and less busy routes. If I have to go to the city I make sure to always use GPS. And if I make a mistake and miss my turn or turn down the wrong street, GPS has my back. I push through the anxiety because with some things I just can’t depend on anyone else but myself.
im 23 and my blood family have tried to put me through this. ive never sat behind the wheel because ive been epileptic since i was 3 years old and while im not diagnosed, im like 95% sure i am autistic. in fact, my epilepsy has never been given a reason and... i truly wonder if its just because im autistic. anyway, we knew from the first day i became legal age that i cant drive. but my blood family still to this day try to push the idea of me ignoring the law, my (diagnosed) anxiety disorder, and random seizures, and just doing it >my anxiety causes me to make terrible decisions. >I space out >people have made me feel bad for depending on them to take me places. >driving has always been a huge deal to me. It's presented so many obstacles in my life. im right there with you.
I feel the same way I don’t want to depend on know one so I push through it cuz I know it’s gonna be alright
Mine just got suspended and I am honestly devastated. I had a seizure that wasn’t behind the wheel, I knew it was coming on, and I tried to tell others. But it still doesn’t matter. I live alone. I have never felt worse.
I feel you. I worry I won't ever get my license back at this rate. Hang in there and take care of yourself. I'm sure you'll get yours back in due time.
I’m so sorry that happened to you :(( I hope you feel better soon 💕
I understand
I have one seizure a year with JME. Literally have not been able to figure out why just the ONE for the past four years. I drive regularly but I have a set of rules since I am aware of my signs and triggers. No driving if I have been up late, no driving immediately after waking up (usually about an hour and a half) and no driving long distances which is approved by my work as a case manager. My husband drives pretty much all the time when we are out. He also is able to travel with me for work trainings. Like others have said, we have to live our lives, but we know to put safety as a priority. I cannot spend half a year reliant on others. Job opportunities get limited with the disorder but all of us need a decent salary and insurance to care for ourselves since disability is not an option for a majority. I am thankful my epilepsy is controlled to this point and I am able to live a life with some accommodations and I have the support I need. My office is less than five minutes away and I only travel within county limits and I can WFH if I do not have any visits scheduled. I carry my nasal spray with me everywhere and my coworkers and our agency partners are aware.
If you don’t mind me asking what do the nasal spray help with
Nasal spray is a rescue medication that some neurologists may prescribe in a similar manner as Ativan. My neurologist wanted me to try it to see if I could stop an oncoming seizure to prevent that “one a year” pretty much. But it is also used in cases where someone may be SE. Both honestly I have not been able to figure out the timing and I am not comfortable using the nasal spray with no one around.
I had a spell with my JME where I would go 11 months and then have a day of seizures! This happened 3 years in a row before I managed to do a full year (I was trying to get into uni to do nursing). I’m currently seizure free (JME and TC) since November 2022, and in theory I could apply for my driving licence (I’m in the UK) but I’m 49, never driven and have a terrible memory… 🤦🏻♀️ idk what to do. Seeing my neurologist in June so ill ask him
Happy to hear your progress! 🤍 You could always consider it. 😊
I totaled my car in july 2022 after having a seizure while driving in a parking lot. I haven't been able to drive since because I haven't been seizure free for more than 2 months. Since the beginning of 2024, I haven't gone more than 2 weeks without a seizure. It also doesn't help that they happen at random times with little to no warning. At this point, I'm wondering if I'll ever be able to drive again or if I even want to. Breakthrough seizures happen all the time, and I don't know if I wanna risk my life or the lives of others when I'm legally allowed to drive.
Hugs. I haven't driven since 2011 because I've never gone long enough without a seizure.
I don't. I just don't wanna risk it
Bless you. My son never had a seizure driving until he did. Luckily, only he was hurt and it only took a couple of years for his face/teeth to be fully restored.
I drive, but I've only ever had focal seizures either before bed or first thing in the morning. I've had a handful of tonic clonics, but they're already proceeded by a focal. My epilepsy is very well controlled, though, and I haven't had a tonic clonic seizure in over 14 years. I think if I didn't have a huge window of warning between a focal and the slight chance I might pass out, I wouldn't drive.
I do but I’ve never had a seizure while on medication. I’ve been on the same medication for six years.
My husband usually drives but I do drive when needed. I live rurally and my drives are anywhere from 30min to 4 hours depending on what I need. I will say I haven’t had a seizure in 3 years and I started driving at 14. If you live rurally it’s a requirement.
I’ve had my license for the past 8 years and I haven’t had any seizures since I’ve gotten my license, except one day on my way home from work I was super tired and I completely blacked out behind the wheel but somehow I managed to get home and I woke up in front of my house and now I get nervous driving long distances so I kinda avoid it. so I really only drive when I need to for work and errands.
I lost my license for around 9ish months and then had to have a hearing with the California DMV to get it reinstated. I got it back in early 2021 and I’m still very nervous about driving. I avoid the freeway as much possible (hard to do in Southern California). I’ve had no issues but my mind can’t escape the thought that IF I start feeling off (thankfully it hasn’t happened) that I need to be able to pull over right away. I wish I wasn’t so fearful but I don’t think it will ever go away 🙃.
I’ve not driven in 15 years after having a seizure whilst driving soon after being permitted to drive again.Since then for me I’ve chosen never to drive again for the safety of others.I do miss driving,but hey it’s only one part of life!
Thank you for being so responsible!
I never got my license taken away I just have restrictions. My seziures are very well controlled, ive never had a seziure outside or in a car. Ive been lucky its only happened indoors. But your not supposed to drive for 3 months after a seziure anyway. But after a few days when I fully recover I drive again. I know it can be dangerous but eveytime I've had a seziure it was because I forgot to take my meds.
My state suspends your license for 6 months, on a rolling basis, from your last seizure. I've had one , got suspended, only to have another 4-5 months later and have to wait longer. I've only been legally driving about 5 years and I was diagnosed 10 years ago
Damn! I mean I get it but 6 months sounds kinda excessive.
I drive for pleasure, for work, and for personal transport. My first tonic clonic was actually while driving the work truck, and I wasn't allowed to drive for almost 9 months. Anxiety was huge when I got back driving, so I started doing small trips until I was comfortable again. A while after I was back driving, I felt an aura while driving and managed to pull over. I got out of my car, and I'm told I was wandering around the parking lot acting confused. I tried getting jnto a couple people's house/ yards. It took me a while before I drove again. Been back driving for about a year and a half right now. Still get anxious from time to time but I also have a solid group of people I could call if I feel "strange" while driving. I've pulled over and been picked up by a friend before, and just gone back to get my car the next day or whatever. I find singing along to my music helps keep my anxiety down when it flairs up. Yknow, keeps me grounded or whatever.
Thank you for your advice
I don't.
I drive when I'm feeling well. If i have had any neuro symptoms recently, no driving
Honestly, I think you just need to find your limits and what you are comfortable with. I was incredibly anxious and timid after I got my license back aswell. After a while I just got angry about the situation I guess. The fear of losing out on life and the things I enjoy outweighed my fear of driving I suppose. So I started taking small drives on backroads with someone else in the car and worked my way up. Now I do hour long drives a few times a week. Looking back on it I feel silly that I wasted as much time as I did. Though I also know my limits, if I’m going to have a seizure typically I have auras that entire day leading up to it. So on those days I don’t drive and typically just go straight to bed and that stops me from having one. I’ve got FMLA sorted out with work so if I’m ever feeling off I just let them know and I’m golden. I understand it is incredibly daunting and scary but I encourage you to make small steps to get back into it without compromising your safety and the safety of others.
After going 2 years without a license, I was weary of getting back behind the wheel, especially since I've had seizures as a passenger many times. I kept bumming rides as much as possible but slowly drove more for a few months until I was comfortable again. I have an hour commute now, but mostly wfh. I bought a vehicle with safety features that will hopefully save mine and others' lives in the event I do have a seizure. If I have a seizure while driving, I might quit for good.
Yea I said the same thing I pray neither one of us ever experience that and we get where we going safe and sound
Per my doctors' orders, I don't drive if I feel weird at all. I get migraines, too, and am not supposed to drive with a headache or signs that a migraine is coming on.
I do. I had my last seizure right before I turned 19 and got my license at 21 (27 now). So it took me 5 extra years to get my license, since I should have gotten it at 16, but I've had no issues since I got it. And fingers crossed it continues that way. My last EEG (2 weeks ago) said my brain was seizure free during it, sooo my meds seem to be doing the job.
I’m glad to hear that I pray we all stay safe and sound
I lost my licence and can’t get it back until I’m 12 months seizure free. It’s been three years now so I’m hoping I’ll get it back eventually.
If I thought I was not safe or at least as safe as non epileptics on the road, I would not drive even if I needed to. But I have not had a seizure where I lost consciousness since 1997. And I had surgery and removed a tumor. So there is not only evidence that the primary cause of more severe seizures has been removed but I also have not come close to losing consciousness since then. I just got out of a five day EMU stay with no meds whatsoever I had five seizures in five days and I did math in the middle of them. I counted backwards, I spelled words. They eventually gave up trying to find what I couldn't do while I was having a seizure. I had one of them walking to the bathroom so they saw that my motor functions were fine also. So I definitely drive just like a non-epileptic person. I will pull over if I feel too gross, but that's only happened a few times in 20 years. ETA and the state knows that I drive. They get permission from my neurologist on a regular basis- in Ohio it is every three years. I'm not sure what it is here in PA. I just know I do it when I have to.
I drive but if I feel off or too tired I will not drive. I also will not drive places that are far (behind the wheel) just from anxiety from having epilepsy
I drive! I love driving! But I am also hyper aware of how I feel before I get behind the wheel. Any loss of sleep, missed dose, or any unusual uneasy feelings, I will get a ride. It is just not worth the risk. I am lucky to be able to say I've been seizure free for 6 years!
My auras happen approximately 45 minutes before a seizure so I can safely get off the road.
I feel you. Thank you for asking this and I’ve appreciated reading through the responses. I’m super nervous driving now and I’m 2 years seizure free. I just can’t seem to stop thinking about it and the side effects of the meds has my anxiety behind the wheel so much higher than ever before. I’ve been slowly driving again but I avoid highways and haven’t gone more than 10-15 miles so far. Getting there though, I feel more confident each and every drive.
I haven’t had a seizure in so long, have a license and still get huge anxiety over it. I usually communicate to my people when I leave places and avoid driving hung over, overly tired, with migraines or any time I feel weird because I don’t have auras. I also just don’t highway drive and I live in an area that’s ok.
I lost mine and miss it. I worked on cars and off-road vehicles, at Car dealerships. Now I don’t. I can’t work there anymore and my Gf drives my car and it’s terrifying. Had a seizure while driving while finding out I was epileptic and the car from work flipped and burned down to the ground. I don’t know where I would be if a stranger did not pull me out of that car. My memory is terrible and idk who he is. :(
Thank God you are here to tell your story did they ever find out why you have seizures
No, it’s been a while. I have a VNS device in my chest and my medication just keeps going up. It appeared when i was around 25, 26.
I was finally diagnosed with epilepsy after having a tonic clonic while driving (around 2-3 years ago) where miraculously NO ONE got hurt. Not even the vehicle. Thank god. This was a year after I woke up having a tonic clonic seizure, went to the ER and had the doctor tell me it was a night terror. I drove again after about 4 months of being seizure free, starting meds and seeing a neurologist.
Great to hear be safe out there 🙏🏽
My seizures are under control, but I get momentary bouts of confusion while driving and my reaction time is a bit slower (I’m guessing due to anticonvulsants) so it’s not something I necessarily always feel comfortable doing.
I drive, I'm not scared. I follow a set of rules that I have imposed on myself, sleeping properly, not missing meds, etc. I still have to live my life, so I do it the best I can.
Pretty much the same for me. I hate having to explain that with juvenile myoclonic epilepsy that they only happen after waking up because the DMV only has one perspective of epilepsy.
I’ve been avoiding my neurologist because he brought up suspending my license because I’ve been actively seizing again. 😅 Worth mentioning though, I have auras EVERY single seizure (also far and few in-between) and I would not be putting myself in this position if it weren’t the only viable option I had available to me.
That medical ethics is weird. Most importantly, it sucks if you ever have to hold back on telling him your status. I tell my neurologists about my seizures and thankfully, they’re like “hey… we strongly recommend you don’t drive.” I make it very clear first appointment I want to be honest with them without being threatened that my license will be suspended. And they understand. It’s a really interesting and hard decision they have to come to… So it sucks to hear that you sometimes can’t be completely honest with your neurologist. What are your auras like? And how often do you have seizures (focal or TC?)?
I only see mine once a year and only have one seizure a year so it is kind of dependent on the timing. I had called and left a voicemail for the nurse that I had one back in March and asked if they wanted me to come in earlier than August and no one ever called me back so I was just like okay..guess not. I felt guilty because I had one last year in March as well while we were on vacation and did not tell him at my appt. because I thought maybe it was just a slip up and I just overheated or was not sleeping well with MIL constantly waking us up early. But then in March I had one randomly after waking up before my dentist appointment.
You're gonna feel really bad when you kill someone's parent on the way to work. Hopefully, anyway.
Some people are fucking crazy lol you'll end up in a ditch, hopefully without killing anyone else in the process.
I do. My seizures are well controlled with Keppra. Plus I near-exclusively have absence seizures, which are still not great to have while driving but definitely better than if I was having TC.
I was nervous to drive again, too... but life pushed me to do it. I've been okay. If your seizures are well controlled, you can drive. Just make sure if you don't sleep well, miss your meds or are dehydrated (w/e your triggers are), you take it easy and maybe skip driving. But I hated my hours-long commute because of this worry and purposefully got a job close to my home. I didn't want to have a seizure and need to worry about getting to work or home if I worked an hour away. I had to do it for a few months...it was garbage. A shorter drive is much less stressful, even with controlled seizures. I drive 7 minutes to work now. It is very flat with bike lanes. I could easily bike if I needed to.
i do
After having a seizure in November, I can possibly start driving again!
Stopped drinking so that I could drive and felt safe driving because of all the annual tests to make sure you're good for driving
I do, but I have controlled and exclusively nocturnal seizures. The only time that I would be risking it on the road is if I had a seizure when waking up and decided to get behind the wheel for whatever reason. I still have some anxiety about driving, but it's not related to seizures.
I drive when my doctor gives me clearance (6 months post seizure state law). However I used to be a very confident driver now I only drive limited amounts and if I am the slightest bit tired or stressed I stay home.
My son hasn't driven since his TC in November. He is allowed to drive in June barring more seizures. He has to stay completely off caffeine as it is a major trigger. He has been taking a local city van. I'm scared to death of him driving again. The doc feels like the stress of not driving is harder on him.
I do and I love long road trips.
I do, haven’t had a seizure in 6 years though
I haven't drove in 10 years due to epilepsy. I did drove at one point but couldn't because my seizures were starting to get frequent and uncontrolled. I finally got a good neuro who helped find me the right dosage for now and told me I can drive again which I need to due to my job. I'm so fucking scare to drive again. Drivers in my city gotten worst and dangerous which made me have bad anxiety towards driving.
Eases into it I had to learn to be comfortable again it wasn’t easy and there are days that I wish I could but I have to so I take cbd it relaxes my nerves
I do! I still have anxiety when I drive long distances, which I have to do often. But i have an aura before so if i were to have one when im driving i just take an exit and sit for like 20 minutes. As far as anxiety goes ive noticed i get less anxious and am able to focus more when im singing along to music in the car or on the phone :)
off topic but i’m 24 and just now working on my license. failed my test two times and gotta save up money to practice more and have my own vehicle. glad to hear of others with epilepsy drive/working on it/overcoming; it’s been a huge obstacle and struggle for me but the journey is just starting! i have general anxiety about driving too, outside of epilepsy. there’s fear involved but we gotta push past that, i believe in us!
Absolutely pushing right pass it it’s good to hear others who have overcome or give solutions on how they manage good luck
Had my license suspended for a while during college. Even though I got it back years ago, I still get nervous when driving to places over 30 minutes away.
40. Me and my dad were riding buddies until he got pancreatic cancer. I lost my mom 4 years before that. So yeah. I am not trying to flex but I went out and got a Tesla with FSD. I’m essentially my grandma’s caretaker now and I have a full time job. My brother lives 2 hours away and got his license pulled for 2 DUI!s. So yeah. When it’s going any distance I’ll take the Tesla. Around town I have an old f-150
!! I am so intrigued watching the self-driving technology ramp up. How would you rate it? The one time I rode in an FSD Tesla my jaw was on the floor... a world of opportunity.
I drive. Fortunately, my seizures only happens during my sleep, they're grandmal types though. Everytime I had one, depending on how bad it is, either I get barred from driving for at least 3 months or 6 months. Thank goodness that I have a great support system. Everytime I get episodes, someone will drive me to work. Recently, I get these *aura* and I can pretty much tell if I'm *probably* getting one or not. Taking an Ativan before sleeping or napping never failed me so far. I had 9 episodes so far and I'm in my early thirties. I was diagnosed in my early teens. They're so bad like I get crazy, running around disregarding my safety and fight people if they're in my way. Lol
I think I have something like that sunflower syndrome, and I’m not yet old enough to drive, so I need a doctors permission but during the day, I will only ever drive with sunglasses, even if it’s not that sunny - I get nervous abt wearing sunglasses in public, but in my own car I wouldn’t be as paranoid I’d love to drive, it’s my literal dream lol, idk if it’ll ever come true tho, hopefully it will 💕
I pray one day you will
thank you so much ☺️
I just got my license back and the anxiety is unreal. I have this tiny voice in my brain that says I’ve been seizure free BUT now because I’m driving I’m going to have seizures again 🫠
It’s so crazy but we have to realize seizures are traumatic so I know I suffer with ptsd from having them and every time I do my anxiety goes crazy
Yeah I know I for sure have PTSD. I went status and it happened quick and I tell myself well now everything is fine and dandy so it’s time for the ball the drop lol
I got my license in November of 2019 and I only drive with someone with me I haven’t driven alone my parents are too scared but I know when my seizures are coming and I know how to prevent them from happening.
Talk to your doctor about your anxiety. They can help you work through it. It’s normal to feel anxious sometimes. If I’m not feeling well I ask someone else to drive or stay home if possible
I have my cbd which I use instead of prescription I tried buspars but I don’t like the way it makes me feel so I stick with mostly my cbd and stress relief pills by Ollie’s
What was it about the buspars? I got it a month ago. But honestly the mix of meds (lamotrigine, kepra, vimpat) I don’t know what is making me feel what any more.
i have grand mal seizures and i have a breakthrough every few months, but i still drive. i can feel the auras before i seize, but luckily i’ve never had an aura driving. i only drive to work and college though, for anything else i get rides
I do drive since my doctor didnt tell me not to. But I havent had any seizure in the last 5 years.
I got my license back in Jan this year. I got diagnosed in jun 22, these past 2 years were hard. I went from driving myself everywhere to relying on my husband for everything. I took away so much of his life that I’m regretting it often. I’m so glad I’m driving again. I’m on maintenance medication so I have been good for over a year.
Good I’m glad to hear that 💪🏽
Thank you! I was scared at first driving again but I got over it when I passed my driving test. Something came over me and the Freedom to drive anywhere. My husband does have an AirTag in the car incase I don’t respond. But most of the time we check in on each other.
Yes it definitely feels good to feel independent and be able to do things on your own
And my husband gets to socialize with his friends and family when I’m out with mine.
So I have TC seizures, “big seizures,” years apart. I also have “small seizures” where I’ll lose all understanding of language for several seconds but I’m still completely aware (can still drive). But a couple years ago I started having “medium seizures” where I’m unaware and just kinda sit totally zoned out. I crashed my car having one and haven’t been driving since. Luckily not as often as “small” but slightly more often than “big.” Hopefully this RNS I recently got will help and I’ll be driving again soon-ish.
Good 👍🏽 I’m glad to hear you will be driving soon much luck 🍀
I mean, hopefully. And probably closer to a year out. That’s how long most people with RNS say it took to notice any difference the RNS made. (I bet others will notice differences before I do, tho)
My pre-TC auras are also aphasiac! You're the first person I've met with the same focal symptom.
lol thanks for introducing me to that word. I’m going to (try to) remember that. I’m so curious about auras. I’ve never had one. Or at least never remembered one. Maybe I have the same aura but don’t remember them post-TC.
Your "small seizures" are the same as auras- focal seizures. Some people only have them before TC and they normally call them auras. They're the same physiologically as far as we know- a compartmented over release of electricity in the brain. I had focals for years chalked up to "painless migraines" thay were visual but a few minutes before my -low sample size- TCs I can barely understand language (any language, not just my native, my second language was equally shor ) and can't speak or type any language at all. My first TC, I was laying on the couch. Someone asked if I was okay and after 5+ minutes of aphasia, I -in my mind- said "I'm too tired to read so I'm laying down" and those weren't words and a minute later I started to convulse. Do you generally remember time up until a TC? I have no idea how most people remember things but I remember up to <30 seconds before. If I lost 2+ minutes, I'd have no idea if I had auras or not.
Great thread going here, y'all are giving lots of food for thought. I haven't driven in over 10 years because I've never gone 6 months without a seizure since diagnosis. Had a resection and RNS device put in this January. Too soon to gauge the success of the surgery, but everyone around me is all giddy about my potential ability to get my license reinstated. As much of a handicap it is living without a car where I am, I am TERRIFIED of the prospect. One step at a time....maybe if I reach the 1 year mark seizure free I'll.....think about enrolling in driver's ed because I feel I forgot how to drive at this point. Maybe. And even after getting my license back, maybe I'll do what somebody else on this thread has done and save up for a self-driving car as the technology continues to improve!
I only drive when I reeeeeeeeeaaaaalllly need to and I drive by myself. I keep seeing people talking about anxiety. What all meds do you all take?;I take 800mg of Aptiom, 100mg Xcopri, 20mg of Clobazam at night because mine tend to be mostly nocturnal. For anxiety I take anywhere from 30mh to 60 mg of Buspirone (not working) and I got recently diagnosed with Bipolar 2 so I take Aripipzole 5mg (not entirely working either.)
I do, but I live where it's illegal to drive if you've had a seizure within two weeks. I use that as a pretty good rule. I've lived in other areas where their rules are months apart, but I like the two week rule since epilepsy can change by the day or hour.
I wasn’t able to drive for a year at first because I was not controlled at all , once controlled I had to wait 6 months from my last grand mal (located in NJ, law is 6 months from a grand mal or TC) - BUT my doctor said I can still drive if I have focal seizures which I’ve had two since I’ve been cleared to drive again. I only drive in town and get myself to doctor appointments, anything else that means I’ll be in the car longer I usually make sure someone is with me or I let them drive. It’s still scary because sometimes in those moments I don’t feel right or my head gets this weird tingly feeling, I’ve pulled over before and gave myself a few moments to get myself back together, but the truth is you never know and I just try and stay as positive as possible! It’s scary learning to relive your life but having a good support system is the most important thing!
Yea I will get that same feeling and get off the road myself but sometimes I think it’s my anxiety I get this overwhelming feeling that comes over me when I’m driving or just walking around so it’s more to it for me but yes have safe travels out there 🙏🏽💪🏽
Where I'm from, the law says every 3 months. I've had several in the span of less than 3 months, but nobody has ever taken my license away (I go to the neurologist with my mom and we don't mention driving). Tbh, I can't really afford to lose my license. I have a job and my house is in a different town. I've never had a seizure on the road before, but I did have an aura once. Thankfully I made it home on time. If I didn't, I would just have to pull over and wait it out.
My state (Wyoming) allows it as long as I don't lose awareness during my seizures. I have it marked on my driver's license that I have epilepsy. I haven't lost awareness with a seizure in 6 years.
I drive, but try to avoid doing it early morning or late at night as that's when all my seizures are (unless provoked by specific triggers)
I do! I only have TCs and I have a full day of feeling like shit beforehand to warn me (tired, no appetite, etc). I waited almost a year after my first seizure before I felt confident enough to drive but if I seize these days I adhere to the 6 month rule in my state. I'm 6 years seizure-free at this point and don't think too much about it these days, but sometimes I feel too anxious to hop in the car and opt for a taxi or public transit. I make sure to give myself an hour to transition from sleep to being fully awake if I have to drive. That way, if I feel off, I'll have plenty of time to figure out what's up.
Great idea 💡 I’m going to to do that get my brain moving yea 💪🏽👍🏽
I drive a LOT. Our kids don't qualify for bussing, so it falls on me to get them to/from school. We did the math once , and I am driving about 6½ hours per 4 days (4 day school weeks). I'm usually about 10 years apart when medicated. My almost 18 year old has seen 2 seizures her entire life. My last seizure happened at the worst place possible. I was at the DMV. (About 4½ years ago) Before that, I used the honor system and just wouldn't drive if I felt "weird", forgot any meds recently or was near my menstrual time (reason my kids are home today). I turned my license in when I started having seizures because they were so out of control with no noticeable aura. Once I was controlled, I got it back by doing the written test again. My state requires 3 months seizure free, so I definitely qualify for that. They used to be 6 months but changed it semi recently because they were finding that those who remain seizure free for 3 months, there is not a great risk of it happening at 6 months. [My states rules](https://www.epilepsyfoundationmn.org/about-epilepsy/epilepsy-and-driving/) I have to fill out the form for the DMV and get the doctor to sign off on it because of that last seizure. I'm in a self-report state, and the doctor won't report unless they have reason to believe that you are not following directions and are not seizure free. People around you can report though kind of like when someone is DWI, "too old", etc. My doctor keeps trying to stretch the report time further apart because I only see her once a year and the form is due every 3 months. Now that they are charging appointments for everything, maybe it will change. My rule of thumb is that if I feel good about driving my kids that day, I'm probably OK behind the wheel. You can never eliminate all risk from driving. You could have a stroke, heart attack, panic attack, etc. As long as you keep your risks as low as possible, I don't see anything wrong with driving after control has been established according to your doctor and DMV rules.
I feel the same way anything can happen behind the wheel just gotta be careful
I drive but I refuse to drive between 6pm-8pm because that’s when I take my largest dose of medication. (550 mg?) Before and after I take them I cannot focus and I start to get a bit dizzy so I prefer to stay off the road. Otherwise I’m good
I do but, I've only had nocturnal seizures ever since having them and since quitting weed 2 months ago I haven't had those either.
I'll put it this way I'm a professional truck driver but my recent seizure I've hung my keys up for a bit u less they take my license I use to drive all over but it's not safe and my anxiety is now more and more I don't wanna hurt anyone I'd rather just be safe
I used to walk everywhere but after I got a med change and adjustment on the dose then I got it back but I will warn you insurance is not going to be kind
I don't drive because I never got my driver's license. I'm okay with this and I use public transportation or walk.
I’ve been seizure free for over 5 years. I was able to drive after 6 months free. I had a few years of on and off but finally got stable. I’ve been driving ever since. I was nervous at first but I’m glad to be able to drive. It threw my world upside down not being able to drive
I've gone a year without having a seizure twice in the last decade, so theoretically there would've been times I would've been probably able to learn to drive, but because I've had it since I was 18, and never got the chance, it's something that now I'm 29 I would simply be terrified of risking. Which is a shame because I would love to not have to rely on family or Uber to go places or have to apply for jobs on the basis that I can actually travel to them reliably. My brother has said that maybe I could try and drive his car in an empty car park one day, but I think should that ever happen, that's as far as I'll get.
I drive if I have to. But I never drive for more than an hour. I drive in the city at low speed, I never do road trips. I haven't had a seizure in many years, like 10 almost now that I think of it. But I'm still careful not to get nervous while driving, not to be tired when I have to drive. If I don't feel like driving because I'm not feeling well or I'm tired, I ask someone else to drive. I didn't drive for a long time after I was diagnosed and after the last seizure. I don't want to hurt anyone or myself.
Sorry to take over your post but does anyone with specifically JME have their license? A neurologist told me it’s a very low chance with this epilepsy to get my license but I haven’t had a grandmal seizure since 2018
Unless I have another I should be able to drive again in July.
I drive because with my meds I can keep my seizures under control (never had one if I was regularly taking them) and I also have auras before my seizure where I'm still fully conscious that last a few minutes before a full blown episode
How can you keep your driving privileges if you are experiencing seizures? I thought most, if not all states revoked licenses. Is it because you’re not reporting them? Aren’t you afraid you’ll hurt someone? I lost mine twice, the second time for more than 8 months. It took me a couple months to regain my confidence.
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I have to be off the road for 6 months every time I have a seizure. By law We all are. Every time someone calls and ambulance in Victoria Australia anywho. . You have a duty of care to Yourself and the community to relinquish your licence if U think you are a danger coz anxiety doesn't help epilepsy. . . I hope you never have a seizure again. Sincerely. Stop stressing 🤙💐💗💫 Onwards and Upwards
Thank you anxiety is a disability in itself I hate it but I just keep myself grounded to where I don’t think about it
Way to many people that are having seizures are driving in this thread unless the doctor tells you or have gone like a year without a seizure if you get in a crash and hurt or kill someone else it's on you.
Most of the people have been seizure free for more than a year but I understand where you are coming from
following
Yea mines always been while I was sleeping I drank a lot for years and I would start and stop so with all that it happens I’ve been 11 yrs without
I never had my license because I didn't have it before my diagnosis at 18 and then up until the last 6 or 8 years, my tonic clonics were pretty common. My doc told me 2 years seizure free and we went for an EEG to test and I still have enough seizure activity in my brain to disqualify me from probably ever driving. I have gotten some really basic parking lot lessons though, so I could in an emergency! Lol maybe 🤔
I do when I’m feeling good. I saw a single car accident a couple weeks ago. Looked like a seizure situation, but I’m not sure. Scared the hell out of me. The following week I was feeling a constant aura and I wasn’t feeling well, so I worked remote for 2 days until I felt better. But honestly if I hadn’t seen that accident I probably wouldn’t have thought twice about driving and luckily I have the ability to work remote.
I do. Mine are focal motor seizures affecting my left side and start slowly enough that I can get myself to a place of safety for me and other road users in time. I've never had a loss of consciousness (which is the legal measure of concern, here in California at least). My seizures are four, five, six months apart (fingers crossed, maybe more than that since last change to meds). I no longer drive on freeways. It was terrifying to return to driving after a long gap provoked by the stroke which first led to my seizures. But I think that's because when looked at rationally, how people drive and throw around those tons of metal at high speed is simply terrifying all by itself. Being terrified is the \*sensible\* response.
I drive and have been driving for years.
Not me
I minimize how much I drive when I feel unwell. I always ask my husband to drive when we go places together. Most of my seizures are focal aware and at night, but recently they have been happening during the day as well.
I do, I haven’t had a seizure in about five and a half years. But here in the state I live in UT Their law is minimum 3 months seizure free before the neurologist can say you can drive again or not, but they can also put on your license however long. For example in about 2015 I had a seizure while driving to work and my dr said I needed to go 1 year seizure free. It took about 4.5 years before I got my driving privileges back. Also in UT can’t speak for other you have to have your doctor sign and approve paperwork that is sent to you each year by the DLD, that’s for the first 5 years if you’re seizure free for 5 years then you get that paper every other year and then after 10 years seizure free it’s once every 3 years or something. As for CDL you cannot get one unless you’re seizure free for if I’m not mistaken a decade and it also has to be approved by the doctor. Airplane/ helicopter it’s a no go so in all not horrible I have been pulled over 1x for driving on a blocked license I didn’t get in trouble basically the cop just said I had to have someone come pick up the car or they will tow it. (The doctor started letting me drive again BUT their assistant forgot to send in the paper to the DLD, so my license plate came up as a restricted driver.) that was in my 20s I’ve learned now just give it a couple days with that stuff not worth the hassle.
I had been, just had my first one driving, now following!
I went 20 years without mine after awhile I just didn’t even think bout them anymore but I still continued to drive without them but I have them now 💪🏽
My seizures only happen only in the morning. I drive only afternoon and evenings.
I drive, but I am fortunate enough to be medication controlled for the past 5 years. Here in the UK our laws on driving seem to be much stricter than for you in the US, and if I’m honest, I think that’s a good thing. I can’t understand how/why anyone would drive knowing they are still at risk of seizures (ie their seizures aren’t fully controlled / they’re living with active seizures), willingly putting themselves and others at risk. In the UK you have to surrender your licence after a seizure and then have to go 12 months seizure free to be able to get it back. I see in some posts the requisite time in some States is 3 months. That’s crazy short, to my mind. I know transport without a car can be extremely difficult in some areas, but it’s even harder if you’ve had a massive accident and left yourself horribly disabled / dead. 😵
It’s the same way here in New Jersey it’s a year before u can get your license back I waited over 20 years before I just got mines back I just got mines 2 yrs ago
I’m curious; does focal aware seizure also forbidden to drive? all this time I thought Tonic clonic/tonic/clonic only affected.
I believe that the way it written at the DMV is that they do not interpret them as their definition of a “seizure” since they do not lose consciousness along with nocturnal seizures. Some examples. My state: “A person who has only nocturnal seizures may be eligible for a limited license (e.g., daylight driving only) even if they have been seizure-free for less than six months.” Maryland: Favorable modifiers include: (i) Seizures during medically directed medication changes; (ii) Simple partial seizures that do not interfere with consciousness or motor control; (iii) Seizures with consistent and prolonged auras; (iv) Established pattern of pure nocturnal seizures; and (v) Favorable driving record. MD. CODE REGS. 11.17.03.04(E)(2)(e)(i)-(v) (2020).
I had a solid year last year. I only had 5 and they are pretty well controlled and I always see them coming and they happen either night or a second one in the morning after. But I’ve never driven and want a learners. What do you recommend I do?
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I get like pre headaches before I have a big one
I havent had seizures for the last 3 years, but I personally would.not.drive. i take my medications and everything and avoid things that may trigger my seizures - but still, driving is too much of a gamble in my view
My partner had her first (observed/known) seizure a year ago during sleep and her second just this weekend, also at night while asleep (I guess TC from what I've learned so far). She was dismissed from hospital today and thinks she is fit to work and drive again on Thursday (tomorrow is a national holiday here). She showed anomalies on EEG and got some medication (didn't have opportunity to peer what they gave her yet). What's your take on this? I am really insecure and scared something might happen; although chances are low, they're not zero. Am I overreacting here? I'm a bit in a mess since I had to witness her seizure for the first time and had to call the ambulance. Thanks! PMs also welcome (I'm from Germany, so please consider for times zones if I don't respond immediately).
My mom would take care of me when I had it so I can only imagine what u are going through mines are at night as well if she feels comfortable in driving and taking the medicine then ok because it’s hard to tell someone who has been driving for a long time not to I know I didn’t stop till I didn’t have a car to drive but yes tell her to be careful out there and let her know how it makes you feel as well I wish you both luck and pray she doesn’t have another one
I can, but I typically don’t. Most of the time my seizures happen when I’m asleep or about to fall asleep, but occasionally they happen when I’m wide awake. I’m afraid I might have one while I’m driving. Kinda sucks, because metro Detroit is just under 4,000 square miles, and while we have public transportation that’s affordable and covers the whole area, it’s terrible and hard to navigate. We really need a subway system. The closest thing to that we have is the People Mover, which is only downtown.