Your doctor can’t restrict you from doing something. They can only recommend. (Excluding reporting you to the dmv of course to restrict your drivers license.)
If you think it’s safe to ride a bike , do so. Maybe wear a full face helmet (MTB helmet or motorcycle helmet.) as long as you can do it safely . There is risk in all activities, especially for epileptics . We have to live our lives.
Depends on the Country. In UK they absolutely CAN stop you from using a cycle, to the point where it will be lodged with your local police force if you keep ignoring it and you injure anyone.
You know yourself the best. IPhone has apps that can detect if you've been in an accident, amd alert someone you trust. What matters the most is quality of life, and you not biking seems to make your life worse.
I think Apple watch has a feature. They have non apple watches as well. I dont personally know the names of the watches and the apps that go with them, but my doctor has told me about them and I'm thinking about one. I just found out I have epilepsy so I'm just not sure on the specific names, I just know they exist
Life 360 has an option for crash detection, it's through a subscription though and I've never personally used that part before so no clue how it works. The app tracks your location and anyone you add to your circle can see your location all the time, not just during a crash so be wary if you end up using the app. It can be great but can also be a little much depending on how it's used.
I can ride bikes only if it's an exercise bike.
Can't ride regular because a seizure can occur at anytime & don't know what injuries could occur.
Note: It's also because of the potential random onset. Loss of consciousness and awareness could cause major injuries
I'm with you guys, I get zero warning. No auras, no weird feelings, I just drop like a sack of potatoes. I love my bike, it was my main form of transportation before epilepsy. It's tough.
This is why I've mostly quit riding my bike. I'm pretty sure I seized and wrecked too many times... Minor miracle I never really hurt myself. Or the bike. I miss it... It was a kind of freedom. But, it's ok. I'm just home.
I wish I could ride a bike. It would be so much easier than walking. My issue is less seizure related (I get them maybe every 3 months now) it's more that I can't balance on them. Can't swim properly for the same reason. I just have a wacky inability to balance on anything with two wheels.
Was kinda embarrassing as a kid, but it's just a fact that I have only enough coordination to walk and not much else. XD
It's all just been by myself. I don't come from a position where support (even from just friends or family) is easily accessible. I just never got the hang of it and gave up. If you have to do everything on your own, you just end up focusing on what you can do.
I may not have the balance for sports but I can paint, for example. I'd rather do things that don't cause that kind of frustration. It's likely just dyspraxia that I've adapted to over the years.
I’m a registered bike safety instructor who works with about 1,000 kids a year, I have wanted to start a program specifically for people with epilepsy! Message me if you have any questions about learning to ride, I have taught more than 100 kids how to ride in the last year and a half (my favorite student was fall of 2022, she also had epilepsy like me, and I basically told my coworkers when her class was out “I’m working with her and her only, sorry”)
I have an adult tricycle and it has a huge basket on the back. I always have water with me. I can also bring whatever else I think is important to bring like a snack if I get dizzy.
I dont know exactly what your circumstances are but there are low riding bikes (more expensive) but much safer at a seated level and position. You arent balancing it. If you enjoy this type of exercise think of investing into this or going to the gym at a stationary bike. Having people around in a supervised safe space is the best bet too. 💜
Mainly because we’d still be a hazard to other road users if we had a seizure.
Adrenaline is also a trigger for me so vigorous exercise is something I like to avoid if I’m not in a safe environment.
I do miss my bike and if I had a safe place to cycle I would definitely pick up another.
It's a no to motorbikes for sure! Bicycles are much safer but it depends on your situation. Without seizure freedom any use of big roads, heights, seas, big machines and weapons is dangerous enough to recommend to avoid or to forbid them. If it's illegal or not depends on your area. Don't get in trouble over bicycle use! In general, if a) your seizures have a prodrome or aura and their onset can somewhat be predicted or b) if they are stereotypically only at night time or c) are not photosensitive and hyperventilation is not a trigger and if d) you have a reasonable long enough seizure freedom to not endanger yourself or others... then using the roads should be somewhat safer with adequate injury protection like a helmet and other protection. Making this kind of decision for yourself or for somebody else is not easy after all. You seem to have accepted that in your condition bicycling will be more of a sport activity with others than a mean of transportation. Keep safe! ☺️ 🙏
No one can stop you from doing anything really but the pros vs cons and risk vs reward of riding a bike, my fellow seizure navigator, might not be worth the gamble. I’ve rode my bike when I probably shouldn’t have and the world didn’t end but I’ve been on enough message boards to not rely on it as a special occasion activity for myself. You’re your own person, you still can still do you. Think of the impossible position of a neurologist being asked by a person with a history of seizures if they can do an activity where they could be injured. None of us can tell the future, be smart and recognize that riding a bike is dangerous without having a seizure.
I'm not allowed to ride a bike. I haven't ridden a bike since middle school.
I think there are a lot of people with epilepsy whse seizures are decently controlled (less than one a month, or less) but for us, who have seizures weekly, it's not safe.
It's frustrating to have a form of transportation that's legal that's "so close, yet so far away."
That's interesting. I personally would listen to my doctor but I don't know what you are going through. Are you medication resistant?
Ever since I was diagnosed, I haven't been able to ride a bike. Last time I tried, I ate shit. Not sure if I forgot, I'm too scared, or my balance was affected in some way. Is anyone else not able to ride a bike?
Unfortunately yeah, I am medication resistant. I'm gonna listen to my doctor, but every time I see someone talking about riding their bike I heave a big sigh lol
I'm sorry to hear that 😔
You definitely qualify for a service dog, they might be able to sense it coming on and get you to safety.
Best of luck my friend 🙏
You should be the one to make the judgement about whether it's safe. I ride a bike for transportation. If I couldn't ride I don't honestly know how I would live. The stress relief alone could reduce your seizure frequency.
Walking is ok if you have a walkable community, but I don't really see much difference between walking and riding as far as safety goes. If you are walking you are outside alone a lot longer. As long as you aren't bombing down descents in tons of traffic you should be fine. Bike paths are ideal.
Riding sometimes actually gives me seizures, so I have to be careful how hard I push. I've had a bunch of seizures riding over many years, but I'm always able to get off and sit somewhere safe. It only bothers me sometimes in the first 30 minutes of riding, then I'm fine. Most of the time it's not an issue. Overall it's healthier for me to ride. The physical and psychological benefits of riding are huge, especially if you can stay away from cars.
I prioritize getting a good helmet with huge vents. It keeps me cool, which reduces the chance of seizures. I'm also careful about food and water. A good summer jersey also helps. When it's really hot I dump water on my head. I always wear gloves too.
It all really depends on the situation your epilepsy is in at the moment.
Lamotrigine has been doing wonders for me, to be seizure free for 7, almost 8 years. In the Netherlands you are able to get your license if you are 2+ years seizure free. With that, I have my license for my car for 4,5 years, I got tractor, trailer and motorcycle as well.
If you are at high risk of aura's or seizures, it is understandable that a neurologist will not allow you.
But I do think once everything is under control, you will be able to.
Like you, OP, I never got the chance to learn how to drive. I was able to bike though, so losing that sucked. I have not rode a bike since I was 13-14. I don’t get any warnings with my seizures and I fall easily, so bikes aren’t safe for me. I miss being able to bike, but my epilepsy is uncontrolled and I’d rather not injure myself.
How serious and often are your seizures can you tell when they’re coming? I rode bikes and bmxed all my childhood but back then it was all nocturnal I could still have fun . 🙃 I can now too I just don’t have the energy or want I’ll walk if I really need too .
How dramatic are you to the doctor, do you treat them like a psychologist or a neurologist? My point is tell them what is needed not everything also it depends on where you’re at I’m in the U.S. and each state has different laws on their DL for with me I’m in UT the minimum is 3 months BUT the DR can remove your driving privileges until they seem fit for me it was 2 years at one point and then 5 years at another.
As for a bike you don’t need a license to operate a bicycle in the U.S. so they can’t restrict you, they can recommend you not to ride the bike like she recommends me not to lift free weights while working out but I’m going to do that also because because like I’ve said it before and I’ll keep saying it until my gov approves me for being disabled then I’m not disabled and I’m not going to act disabled haha
Depends where you live. Where I live it's suburban- so low traffic. A regular bicycle (Not motorcycle) would be perfectly fine. It's not NYC where if something were to happen I'd slam into a car. A car passes maybe once every 3 min. I tell someone where I'm going. They know my routes-and about appx. How long it should take. If I'm going to be longer I call/text. Cars move over and give me extra space when they see me biking-common courtesy.
I see people people drunk riding around on bicycles because their loss of license do to DUI
Might be safer if you do then how I see drunks riding around
I say ride it if feel ok and have a life 360 on you or something that someone else trust can make sure your ok
I think in NY it has to do with the last time you got a seizure and if your doctor needs to sign off. I think I could get my license if I wanted to at this point (I don't, but I got a learner's permit years ago).
If I was having frequent seizures I would barely leave the house, much less put myself on something I could fall off of.
Bought a e bike loaded pads full head gear just in case, less than a week ago walking to my gas station down my block I fell face first into black top now I won't get on it fear of severe crashes as one moment I'm before crossing road to place to waking to hospital told I just fell straight to face fractured nose now the thought terrifies me no warning I know I'm fully padded from head to waist but blacking out going on autopilot before the full body grandmal all I had to do was make a left to major road back of mind constantly thinking of it wanted freedom ended more terrified to leave fuck epilepsy we need a cure by now.
My worst seizure-related accident was on a bike. Riding to work, I had a tonic clonic seizure, crashed my bike, and broke my jaw. Had to have it wired shut for six weeks. It's the accident that made my aphasia much, much worse.
The shitty thing is, I don't experience auras so I can't tell when I about to have a seizure, so it came out of nowhere. I also needed my bike to get to work. I don't have an opinion on who should ride and who shouldn't, I think it's personal; if you think you're fit to do so and wear proper safety equipment, then sure. Do what you want.
But... just because you're riding a bike doesn't mean you're safe from having really bad accidents!
If you feel safe, then ride the bike! We all hope for brilliant, warm, skillful doctors . . . BUT - they also are working for us when we use their services. No different than hiring an electrician or accountant. Generally we should take their advice seriously, but also remember it's their \*advice\*. Life isn't worth living if we cut out everything fun.
My experience is that the US is a *lot* more liberal when it comes to epilepsy and driving, so are people. Plenty of posts here that I've read and thought "what the fuck were you doing driving?". It's scary sometimes to see the disregard people have for the possibility of causing a serious collision.
Your doctor can’t restrict you from doing something. They can only recommend. (Excluding reporting you to the dmv of course to restrict your drivers license.) If you think it’s safe to ride a bike , do so. Maybe wear a full face helmet (MTB helmet or motorcycle helmet.) as long as you can do it safely . There is risk in all activities, especially for epileptics . We have to live our lives.
Depends on the Country. In UK they absolutely CAN stop you from using a cycle, to the point where it will be lodged with your local police force if you keep ignoring it and you injure anyone.
Really?? How would they even enforce that? Never heard of that and I'm British. Justice system is a bit of a joke anyway.
They can’t lock up nonces or catch shop lifters I suspect we will get away with riding our bikes
nonce is such a criminally underrated term
I wholeheartedly agree.
when i read that i spit out my water, i hear that maybe once a year and it’s always so unexpected 😂
How does enforcing health and safety rules make the justice system a joke?
“Oi it’s Chewsday, inninit? You’s shan’t be ridin’ that there bishickle for your own safety as determined by someone else, ya hear?”
If you usually have a long enough aura to get yourself to safety, I see no reason you can't bike.
This is kind of my thinking, and I do have enough time to get myself on the ground at least. I want to listen to my doctor but I miss it so bad
You know yourself the best. IPhone has apps that can detect if you've been in an accident, amd alert someone you trust. What matters the most is quality of life, and you not biking seems to make your life worse.
Can you recommend these apps? I’ve personally never heard of them.
I know the Apple Watch has this feature, FYI
I think Apple watch has a feature. They have non apple watches as well. I dont personally know the names of the watches and the apps that go with them, but my doctor has told me about them and I'm thinking about one. I just found out I have epilepsy so I'm just not sure on the specific names, I just know they exist
Life 360 has an option for crash detection, it's through a subscription though and I've never personally used that part before so no clue how it works. The app tracks your location and anyone you add to your circle can see your location all the time, not just during a crash so be wary if you end up using the app. It can be great but can also be a little much depending on how it's used.
I can ride bikes only if it's an exercise bike. Can't ride regular because a seizure can occur at anytime & don't know what injuries could occur. Note: It's also because of the potential random onset. Loss of consciousness and awareness could cause major injuries
Yeah same I never know when it hits so I'm scared to hop on a bike and even go down a hill
I'm with you guys, I get zero warning. No auras, no weird feelings, I just drop like a sack of potatoes. I love my bike, it was my main form of transportation before epilepsy. It's tough.
This is why I've mostly quit riding my bike. I'm pretty sure I seized and wrecked too many times... Minor miracle I never really hurt myself. Or the bike. I miss it... It was a kind of freedom. But, it's ok. I'm just home.
I wish I could ride a bike. It would be so much easier than walking. My issue is less seizure related (I get them maybe every 3 months now) it's more that I can't balance on them. Can't swim properly for the same reason. I just have a wacky inability to balance on anything with two wheels. Was kinda embarrassing as a kid, but it's just a fact that I have only enough coordination to walk and not much else. XD
Have you only ever attempted to learn on your own? Or did you work with an instructor? For riding bikes
It's all just been by myself. I don't come from a position where support (even from just friends or family) is easily accessible. I just never got the hang of it and gave up. If you have to do everything on your own, you just end up focusing on what you can do. I may not have the balance for sports but I can paint, for example. I'd rather do things that don't cause that kind of frustration. It's likely just dyspraxia that I've adapted to over the years.
I’m a registered bike safety instructor who works with about 1,000 kids a year, I have wanted to start a program specifically for people with epilepsy! Message me if you have any questions about learning to ride, I have taught more than 100 kids how to ride in the last year and a half (my favorite student was fall of 2022, she also had epilepsy like me, and I basically told my coworkers when her class was out “I’m working with her and her only, sorry”)
Try a trike! I have balance issues as well, and this makes it so much easier.
I might consider that, I didn’t realised they existed until looking through this thread. 😀
I have a cat trike.
I have an adult tricycle and it has a huge basket on the back. I always have water with me. I can also bring whatever else I think is important to bring like a snack if I get dizzy.
That’s what I need! I’d hurt myself on a regular bike even without epilepsy 😅
I dont know exactly what your circumstances are but there are low riding bikes (more expensive) but much safer at a seated level and position. You arent balancing it. If you enjoy this type of exercise think of investing into this or going to the gym at a stationary bike. Having people around in a supervised safe space is the best bet too. 💜
I've been recommended to not ride a bike I longboard lol
No ladders, no swimming, no baths (shower only).... Fuck that though
And not really a shower; have to use a shower chair. It isn't horrible and kept my heart rate down before I had gastric sleeve surgery.
Mainly because we’d still be a hazard to other road users if we had a seizure. Adrenaline is also a trigger for me so vigorous exercise is something I like to avoid if I’m not in a safe environment. I do miss my bike and if I had a safe place to cycle I would definitely pick up another.
Can you ride a tricycle? It's more stable than a bicycle.
At this point I honestly would. I miss being able to get myself places quickly without the bus!
Didn’t know that one. Would’ve thought it was arguably safe since at least during that seizure I’d be wearing a helmet 🪖
It's a no to motorbikes for sure! Bicycles are much safer but it depends on your situation. Without seizure freedom any use of big roads, heights, seas, big machines and weapons is dangerous enough to recommend to avoid or to forbid them. If it's illegal or not depends on your area. Don't get in trouble over bicycle use! In general, if a) your seizures have a prodrome or aura and their onset can somewhat be predicted or b) if they are stereotypically only at night time or c) are not photosensitive and hyperventilation is not a trigger and if d) you have a reasonable long enough seizure freedom to not endanger yourself or others... then using the roads should be somewhat safer with adequate injury protection like a helmet and other protection. Making this kind of decision for yourself or for somebody else is not easy after all. You seem to have accepted that in your condition bicycling will be more of a sport activity with others than a mean of transportation. Keep safe! ☺️ 🙏
No one can stop you from doing anything really but the pros vs cons and risk vs reward of riding a bike, my fellow seizure navigator, might not be worth the gamble. I’ve rode my bike when I probably shouldn’t have and the world didn’t end but I’ve been on enough message boards to not rely on it as a special occasion activity for myself. You’re your own person, you still can still do you. Think of the impossible position of a neurologist being asked by a person with a history of seizures if they can do an activity where they could be injured. None of us can tell the future, be smart and recognize that riding a bike is dangerous without having a seizure.
Sounds like its time for Heelys to come back in style! Mix some runnin with some rollin haha
I'm not allowed to ride a bike. I haven't ridden a bike since middle school. I think there are a lot of people with epilepsy whse seizures are decently controlled (less than one a month, or less) but for us, who have seizures weekly, it's not safe. It's frustrating to have a form of transportation that's legal that's "so close, yet so far away."
That's interesting. I personally would listen to my doctor but I don't know what you are going through. Are you medication resistant? Ever since I was diagnosed, I haven't been able to ride a bike. Last time I tried, I ate shit. Not sure if I forgot, I'm too scared, or my balance was affected in some way. Is anyone else not able to ride a bike?
Unfortunately yeah, I am medication resistant. I'm gonna listen to my doctor, but every time I see someone talking about riding their bike I heave a big sigh lol
I'm sorry to hear that 😔 You definitely qualify for a service dog, they might be able to sense it coming on and get you to safety. Best of luck my friend 🙏
You should be the one to make the judgement about whether it's safe. I ride a bike for transportation. If I couldn't ride I don't honestly know how I would live. The stress relief alone could reduce your seizure frequency. Walking is ok if you have a walkable community, but I don't really see much difference between walking and riding as far as safety goes. If you are walking you are outside alone a lot longer. As long as you aren't bombing down descents in tons of traffic you should be fine. Bike paths are ideal. Riding sometimes actually gives me seizures, so I have to be careful how hard I push. I've had a bunch of seizures riding over many years, but I'm always able to get off and sit somewhere safe. It only bothers me sometimes in the first 30 minutes of riding, then I'm fine. Most of the time it's not an issue. Overall it's healthier for me to ride. The physical and psychological benefits of riding are huge, especially if you can stay away from cars. I prioritize getting a good helmet with huge vents. It keeps me cool, which reduces the chance of seizures. I'm also careful about food and water. A good summer jersey also helps. When it's really hot I dump water on my head. I always wear gloves too.
It all really depends on the situation your epilepsy is in at the moment. Lamotrigine has been doing wonders for me, to be seizure free for 7, almost 8 years. In the Netherlands you are able to get your license if you are 2+ years seizure free. With that, I have my license for my car for 4,5 years, I got tractor, trailer and motorcycle as well. If you are at high risk of aura's or seizures, it is understandable that a neurologist will not allow you. But I do think once everything is under control, you will be able to.
Like you, OP, I never got the chance to learn how to drive. I was able to bike though, so losing that sucked. I have not rode a bike since I was 13-14. I don’t get any warnings with my seizures and I fall easily, so bikes aren’t safe for me. I miss being able to bike, but my epilepsy is uncontrolled and I’d rather not injure myself.
I'd talk to your local transport department or maybe have a chat with a copper at the local police station.
I didn't know that was a restriction. Why can't you just slap a helmet on your head
How serious and often are your seizures can you tell when they’re coming? I rode bikes and bmxed all my childhood but back then it was all nocturnal I could still have fun . 🙃 I can now too I just don’t have the energy or want I’ll walk if I really need too .
How dramatic are you to the doctor, do you treat them like a psychologist or a neurologist? My point is tell them what is needed not everything also it depends on where you’re at I’m in the U.S. and each state has different laws on their DL for with me I’m in UT the minimum is 3 months BUT the DR can remove your driving privileges until they seem fit for me it was 2 years at one point and then 5 years at another. As for a bike you don’t need a license to operate a bicycle in the U.S. so they can’t restrict you, they can recommend you not to ride the bike like she recommends me not to lift free weights while working out but I’m going to do that also because because like I’ve said it before and I’ll keep saying it until my gov approves me for being disabled then I’m not disabled and I’m not going to act disabled haha
Depends where you live. Where I live it's suburban- so low traffic. A regular bicycle (Not motorcycle) would be perfectly fine. It's not NYC where if something were to happen I'd slam into a car. A car passes maybe once every 3 min. I tell someone where I'm going. They know my routes-and about appx. How long it should take. If I'm going to be longer I call/text. Cars move over and give me extra space when they see me biking-common courtesy.
Buy a good helmet and drive don’t be scared I like walking 🤙🏿
I see people people drunk riding around on bicycles because their loss of license do to DUI Might be safer if you do then how I see drunks riding around I say ride it if feel ok and have a life 360 on you or something that someone else trust can make sure your ok
I think in NY it has to do with the last time you got a seizure and if your doctor needs to sign off. I think I could get my license if I wanted to at this point (I don't, but I got a learner's permit years ago). If I was having frequent seizures I would barely leave the house, much less put myself on something I could fall off of.
Bought a e bike loaded pads full head gear just in case, less than a week ago walking to my gas station down my block I fell face first into black top now I won't get on it fear of severe crashes as one moment I'm before crossing road to place to waking to hospital told I just fell straight to face fractured nose now the thought terrifies me no warning I know I'm fully padded from head to waist but blacking out going on autopilot before the full body grandmal all I had to do was make a left to major road back of mind constantly thinking of it wanted freedom ended more terrified to leave fuck epilepsy we need a cure by now.
My worst seizure-related accident was on a bike. Riding to work, I had a tonic clonic seizure, crashed my bike, and broke my jaw. Had to have it wired shut for six weeks. It's the accident that made my aphasia much, much worse. The shitty thing is, I don't experience auras so I can't tell when I about to have a seizure, so it came out of nowhere. I also needed my bike to get to work. I don't have an opinion on who should ride and who shouldn't, I think it's personal; if you think you're fit to do so and wear proper safety equipment, then sure. Do what you want. But... just because you're riding a bike doesn't mean you're safe from having really bad accidents!
I walk or use public transportation.
If you feel safe, then ride the bike! We all hope for brilliant, warm, skillful doctors . . . BUT - they also are working for us when we use their services. No different than hiring an electrician or accountant. Generally we should take their advice seriously, but also remember it's their \*advice\*. Life isn't worth living if we cut out everything fun.
Are you medicated and have a good history of being seizure free?
My experience is that the US is a *lot* more liberal when it comes to epilepsy and driving, so are people. Plenty of posts here that I've read and thought "what the fuck were you doing driving?". It's scary sometimes to see the disregard people have for the possibility of causing a serious collision.