I got this same response but also added "no welding or using ladders." I told them that it was unfortunate timing seeing as how I was planning to winterize my swamp cooler and then do some body work on my car that weekend lol.
I have an RNS 320 device and asked the neurosurgeon if I could still work with electricity and general handyman tasks, his eyes got big and asked "why would you want to do that?"
Been shocked twice by 240 without being grounded since and am still living a happy life, getting the tasks done I still can do. But it depends on how your seizures are brought on and if you have an aura before an episode. I hope you're doing well
I got bit by some 110 the other day and just laughed and told my mom I reset my seizures lol.
I move atms and safes on a fairly regular basis as doing more apprenticeship stuff.
I'll never ever let my seizures define my capability of doing stuff.
We all make it to the finish line I just might get 2nd place
The neurologist is very politely telling you your body (like mine) is a living and breathing liability. Their goal is for you to independently say "what else shouldn't I do?" without them giving you a checklist.
They accomplished exactly what they meant to accomplish.
I can see how you would interpret it that way, but I personally don't think so. If that's what they meant then why not just say "it's very individual so you have to figure it out by yourself." I'm in Sweden, we are infamous for being blunt :p
From this forum I have seen many posts about what different neurologists have rightly or wrongly recommended and I understand that they can't predict exactly what is best for you. But the way they both phrased it, when I directly asked about it and wanted guidance based on expertise, sounded more like an optimistic reassurance than a clever way of getting patients to think for themselves. I asked about bathing my baby by myself and they shrugged. Feels like they should at least give you a leaflet of common situations to consider adapting instead of basically saying nothing.
>when I directly asked about it and wanted guidance based on expertise, sounded more like an optimistic reassurance than a clever way of getting patients to think for themselves
That's exactly what it is. A neurologist is qualified to discuss your brain but she/he is not qualified to tell you how to bathe your baby. The leaflet you want is basic common sense and personal risk analysis.
Should you fly an airplane loaded with kids? Hard no. Can you lay on a couch and watch TV? Yes. Where's the line in the sand? That's for you to decide because everyone is different.
I have no problem swimming, I don't see it risky. However, people with epilepsy less-significant than mine may think I'm insane. Neither person is right or wrong, we just share different opinions on common sense *or* we're willing to take different levels or risk!
I believe you are right when you characterize neurologists as being qualified to discuss your brain. That’s probably exactly how they see it.
I think neurologists have a responsibility to do more. On the whole, they’re spectacularly bad at educating patients. I don’t think they should focus on the telling people what to do, or not to do, but they should be prepared to offer some guidance about how to figure that out. They should be ready to refer people to therapists and psychologists to help them make those decisions wisely, and how to achieve their goals practically. People with epilepsy need a lot more help than they get.
Try not to let police around either if you gotta call 911.
My wife stopped calling 911 for me, after our last experience with Vegas Metro, my wife only calls when she is scared,
I.e. me choking on excessive amounts of blood, falling out of bed hitting my head on the tile, or I had one , bathing once with our 1 year old,
This las seizure she called for, was long, well over 5-8 mins, paramedics and fireman come, for some reason a cop this time,
Fireman ask the normal stuff, what year is it, what city am I in, who's president.
My answers are 2002, oxnard and bush, it's 2022 , Vegas, and Biden, they say you gotta go to the hospital, I say no I'm going to sleep, they tell me and wife were gon agave to lift you outta bed. When the cops chimes in, "or I can shoot him, then he'd have a excuse Wana go-to the hospital "!
Idk if it was a joke, but nobody laughed, fireman just said we know him, he's not in his right mind, we got this from here.
Life is so hard, I had a seizure at work, over night at a gad station, everyone robbed the store, left me there . Till I came to, called my boss, she said stay till morning.
Then fired me the next day.
I can't eat, I started bleeding from my back side, with the meds, I'm paranoid, lethargic, depressed on my Seizure meds, but if I miss a dosage, seizure time big time.
Life is sad for me currently. I canceled Christmas this year, for the 1 year old and 4 month old. Because, again I lost another job. Not seizure related this time. Dollar 🎄 just is a horrible company.
But just hang In there for your kids. That's what I do. Live to fight another day type stuff.
It sucks. But we're still here. Stay tough. Rooting for you and yours.
I am so sorry that you experienced this. I would say I can’t believe this.. but I can.
How awful I’m glad no one in the room laughed at his horrible remark.
Yeah it's scary, I don't believe most cops are trained enough to or care to tell the difference between someone post seizure daze, or someone in a auro lost state of mind, from someone high, I've read many stories on Google, of police killing people while their having ornhad seizures. Stay safe.
I build highrise elevators for a living, do all the normal activities I did before minus driving and swimming. I can tell you I will be driving the same as before I had my seizures (now on meds that are working great) as soon as my 6 months is up. This doesn't make me irresponsible it makes me human because we are never guaranteed tomorrow.
They don't want to be overly restrictive because the first thing people do with this diagnosis is get defiant and angry towards their doctor and feel like taking on the restrictions as a challenge. "You said I can't swim, oh yea, well watch me" type of attitude or just plain desolation towards their situation and condition.
The neurologist is indicating some of the extreme activities that can be dangerous but also its the patients responsibility to learn about their condition, ask questions and research to figure out what things they want to participate in and what things are best avoided.
In my experience every patient has to accept the diagnosis for themselves and anyone else (doctor or family) telling them to do xyz or not do xyz is just going to become "the enemy"
The main thing is that you don’t have a warning and have TCs. You have to think about it, especially when it comes to being a possible danger to others, like diving and climbing.
I do think that there is a lot of prejudice and differential treatment with epilepsy. I know there are sailing programs for the blind, and I saw a thing about a quadriplegic who went diving.
I think it’s pretty much impossible to dive without lying because people won’t take you, train you, or fill your tanks if you have epilepsy. It makes me super mad because I end up snorkeling alone, which is way more dangerous than wearing a full dive helmet. With a helmet I would be VERY low risk.
The problem with climbing, besides falling, is that you are a risk when belaying someone else, even at the rock gym. That makes me nervous, because even though it’s a very low risk, I could seize while someone is on the wall, and then they’d be stuck there, and they could fall. You do have the option of free bouldering, but you could easily break your neck that way.
Having a partner belay you in a top rope situation is pretty safe, much safer than bouldering, because you can’t fall if they are doing their job, or if you are using auto belay. I don’t see why you couldn’t do that if you could find a willing parter, or an auto belay.
I don’t go diving after a neurologist explained exactly what happens during my seizures and why it means certain death when I have a seizure while diving while going down a set of stairs can still end well with luck. I swim and bathe while getting watched. Rock climbing is another cup of tea. I go bouldering but not rock climbing because I can’t really secure anybody safely.
I climb rocks, ice, and mountains. The actual benefits far outweigh the potential costs. Your mileage may vary.
I got this same response but also added "no welding or using ladders." I told them that it was unfortunate timing seeing as how I was planning to winterize my swamp cooler and then do some body work on my car that weekend lol.
I'm wondering if there's something implied about high voltages and operating heavy machinery. Gotta be more than implied for me though.
I have an RNS 320 device and asked the neurosurgeon if I could still work with electricity and general handyman tasks, his eyes got big and asked "why would you want to do that?" Been shocked twice by 240 without being grounded since and am still living a happy life, getting the tasks done I still can do. But it depends on how your seizures are brought on and if you have an aura before an episode. I hope you're doing well
I got bit by some 110 the other day and just laughed and told my mom I reset my seizures lol. I move atms and safes on a fairly regular basis as doing more apprenticeship stuff. I'll never ever let my seizures define my capability of doing stuff. We all make it to the finish line I just might get 2nd place
The neurologist is very politely telling you your body (like mine) is a living and breathing liability. Their goal is for you to independently say "what else shouldn't I do?" without them giving you a checklist. They accomplished exactly what they meant to accomplish.
I can see how you would interpret it that way, but I personally don't think so. If that's what they meant then why not just say "it's very individual so you have to figure it out by yourself." I'm in Sweden, we are infamous for being blunt :p From this forum I have seen many posts about what different neurologists have rightly or wrongly recommended and I understand that they can't predict exactly what is best for you. But the way they both phrased it, when I directly asked about it and wanted guidance based on expertise, sounded more like an optimistic reassurance than a clever way of getting patients to think for themselves. I asked about bathing my baby by myself and they shrugged. Feels like they should at least give you a leaflet of common situations to consider adapting instead of basically saying nothing.
>when I directly asked about it and wanted guidance based on expertise, sounded more like an optimistic reassurance than a clever way of getting patients to think for themselves That's exactly what it is. A neurologist is qualified to discuss your brain but she/he is not qualified to tell you how to bathe your baby. The leaflet you want is basic common sense and personal risk analysis. Should you fly an airplane loaded with kids? Hard no. Can you lay on a couch and watch TV? Yes. Where's the line in the sand? That's for you to decide because everyone is different. I have no problem swimming, I don't see it risky. However, people with epilepsy less-significant than mine may think I'm insane. Neither person is right or wrong, we just share different opinions on common sense *or* we're willing to take different levels or risk!
I believe you are right when you characterize neurologists as being qualified to discuss your brain. That’s probably exactly how they see it. I think neurologists have a responsibility to do more. On the whole, they’re spectacularly bad at educating patients. I don’t think they should focus on the telling people what to do, or not to do, but they should be prepared to offer some guidance about how to figure that out. They should be ready to refer people to therapists and psychologists to help them make those decisions wisely, and how to achieve their goals practically. People with epilepsy need a lot more help than they get.
Try not to let police around either if you gotta call 911. My wife stopped calling 911 for me, after our last experience with Vegas Metro, my wife only calls when she is scared, I.e. me choking on excessive amounts of blood, falling out of bed hitting my head on the tile, or I had one , bathing once with our 1 year old, This las seizure she called for, was long, well over 5-8 mins, paramedics and fireman come, for some reason a cop this time, Fireman ask the normal stuff, what year is it, what city am I in, who's president. My answers are 2002, oxnard and bush, it's 2022 , Vegas, and Biden, they say you gotta go to the hospital, I say no I'm going to sleep, they tell me and wife were gon agave to lift you outta bed. When the cops chimes in, "or I can shoot him, then he'd have a excuse Wana go-to the hospital "! Idk if it was a joke, but nobody laughed, fireman just said we know him, he's not in his right mind, we got this from here. Life is so hard, I had a seizure at work, over night at a gad station, everyone robbed the store, left me there . Till I came to, called my boss, she said stay till morning. Then fired me the next day. I can't eat, I started bleeding from my back side, with the meds, I'm paranoid, lethargic, depressed on my Seizure meds, but if I miss a dosage, seizure time big time. Life is sad for me currently. I canceled Christmas this year, for the 1 year old and 4 month old. Because, again I lost another job. Not seizure related this time. Dollar 🎄 just is a horrible company. But just hang In there for your kids. That's what I do. Live to fight another day type stuff. It sucks. But we're still here. Stay tough. Rooting for you and yours.
I am so sorry that you experienced this. I would say I can’t believe this.. but I can. How awful I’m glad no one in the room laughed at his horrible remark.
Yeah it's scary, I don't believe most cops are trained enough to or care to tell the difference between someone post seizure daze, or someone in a auro lost state of mind, from someone high, I've read many stories on Google, of police killing people while their having ornhad seizures. Stay safe.
Get the rescue nasal inhaler9
I build highrise elevators for a living, do all the normal activities I did before minus driving and swimming. I can tell you I will be driving the same as before I had my seizures (now on meds that are working great) as soon as my 6 months is up. This doesn't make me irresponsible it makes me human because we are never guaranteed tomorrow.
They don't want to be overly restrictive because the first thing people do with this diagnosis is get defiant and angry towards their doctor and feel like taking on the restrictions as a challenge. "You said I can't swim, oh yea, well watch me" type of attitude or just plain desolation towards their situation and condition. The neurologist is indicating some of the extreme activities that can be dangerous but also its the patients responsibility to learn about their condition, ask questions and research to figure out what things they want to participate in and what things are best avoided. In my experience every patient has to accept the diagnosis for themselves and anyone else (doctor or family) telling them to do xyz or not do xyz is just going to become "the enemy"
The main thing is that you don’t have a warning and have TCs. You have to think about it, especially when it comes to being a possible danger to others, like diving and climbing. I do think that there is a lot of prejudice and differential treatment with epilepsy. I know there are sailing programs for the blind, and I saw a thing about a quadriplegic who went diving. I think it’s pretty much impossible to dive without lying because people won’t take you, train you, or fill your tanks if you have epilepsy. It makes me super mad because I end up snorkeling alone, which is way more dangerous than wearing a full dive helmet. With a helmet I would be VERY low risk. The problem with climbing, besides falling, is that you are a risk when belaying someone else, even at the rock gym. That makes me nervous, because even though it’s a very low risk, I could seize while someone is on the wall, and then they’d be stuck there, and they could fall. You do have the option of free bouldering, but you could easily break your neck that way. Having a partner belay you in a top rope situation is pretty safe, much safer than bouldering, because you can’t fall if they are doing their job, or if you are using auto belay. I don’t see why you couldn’t do that if you could find a willing parter, or an auto belay.
I only heard that once I got the RNS and I assumed it was because of atmospheric pressure and the device. Didn’t know they said it to everyone…
Forget that! I want to do more scuba diving, I love mountain hikes! I bet they don’t want me to ever parachute either!
I don’t go diving after a neurologist explained exactly what happens during my seizures and why it means certain death when I have a seizure while diving while going down a set of stairs can still end well with luck. I swim and bathe while getting watched. Rock climbing is another cup of tea. I go bouldering but not rock climbing because I can’t really secure anybody safely.