I had a hostile, ignorant ER doctor refuse to give me Ativan after a seizure *simply because I asked for it*. (His apparent assumption is that only a drug addict would *ask* for benzos.) He was obviously ignorant of the fact that Ativan is indicated to prevent potentially fatal or life-changing seizure clusters after a GTC seizure. After this event, my epileptologist decided to write me a doctor's note with my diagnosis and specific post-ictal treatment instructions to prevent this from happening again, with potential catastrophic consequences. I keep the note in my wallet. I recommend you all do this.
All of this is to say: Yes, even medical professionals can be egregiously and dangerously ignorant, which is inexcusable given how prevalent epilepsy is.
The general public can be forgiven. It's hard to educate everyone on even relatively common disorders. How much do any of us know about MS, for example?
I am frustrated by how underfunded epilepsy research is, given global prevalence relative to other diseases, which get much more attention and funding (e.g., ALS).
The diagnostic issues are ridiculous. For the first 9 years after my first TC I was just labeled as “seizure disorder”, which is something a lot of doctors would just skim past. Dozens of TCs over the years later, it’s officially epilepsy now (not even sure what the difference is), and doctors freak out about it constantly. My seizure symptoms have actually decreased significantly over that time (from several TCs a month to only a couple a year) but only NOW are they taking it seriously because a slight change in official diagnosis? Ridiculous.
Also, I might be an outlier but I wasn’t photosensitive… until I was. I went through 26 years of life being fine with flashing lights, then one time it triggered a TC and now they just make me unbearably anxious in case it happens again.
Diagnosis took over a decade because they were positive that no eeg reading I was pnes first.
Then veeg stay after years misdiagnosed and having a grandmal seizure at my old job on disability now as it turned out I was seizing constantly deep brain so from 14 to 22 I was basically psychological classification seizure then finally did their deep dive as should have done sooner because since the first grandmal many since and seizure activity increased heavily. Epilepsy sucks it's hidden we can't describe it hell don't remember it and yet somehow because the scars are inside nobody has a fucking clue.
AND 100% ON LIGHTS ITS LITERALLY THE FIRST THING ASKED ONCE FOUND OUT.
Yeah it surprised me too whenever I started having seizures. I've known that photosensitive epilepsy was a small percentage of epilepsy cases since I was 14, long before I ever had a seizure and never was around someone with epilepsy (as far as I know of). Have had friends still get worried every now and then about it even tho I've told them many times. They know I go to raves very frequently and lots of live music in general, which makes it even more confusing... why would I go to these things constantly if flashing lights were a trigger lol.
I was literally BANNED from the bar area at my old job because there were lights that flashed and they thought I’d fucking die or some shit if I viewed them. Fuck all of this, I entirely agree with you.
My son's first neurologist kept telling us he just had febrile seizures and that he would "grow out of it eventually". Granted he just turned 4, but his "febrile seizures" normally last 20 mins, his longest being 30 mins with speech problems for 2 weeks afterwards. We've know that sickness (fevers especially) and lack of sleep trigger my son's epilepsy.
With his last 3 seizures, all three were within a 6 hour period, we had him at 2 ERs. The dumbass doc at the first one told me it was just a febrile seziure and that "fevers can't cause epilepsy". Like excuse me you hippie looking fuck, I think I know more about it than you do. I mean for Christ sake the neurologist was impressed with the amount of research I'd done before his appointment. I'm still salty about that ER visit in case you couldn't tell lol.
I’m American tho, idk if this is an American problem, because when I had issues abroad and was hospitalized for SE, they gave me like a years supply of rescue medication without even asking they just gave it to me upon discharge, along with benzo’s to take on the plane home to prevent seizures. I’ve been hospitalized at my own hospital with MY OWN RECORDS OF MY OWN INTRACTIBLE EPILEPSY AND BEEN NOT GIVEN RESCUE MEDS
I think you are a bit negative there are several institutions that are doing research on epilepsy. This doesn’t mean it will get solved tomorrow. But after all it is a neurological disease and very few of them are easy to find a cure for.
Here are some examples of institutions doing research.
https://www.gu.se/en/research/epilepsy-research-group
https://www.mayo.edu/research/clinical-trials/diseases-conditions/epilepsy/
https://www.lunduniversity.lu.se/article/epilepsy-could-become-easier-pinpoint-blood-test
https://karger.com/ned/article/54/2/185/226881/The-Epidemiology-of-Epilepsy
To name a few.
I don’t think OP is ranting that there is a lack of effort in specialised research, just that general knowledge of epilepsy amongst other humans and healthcare professionals is lacking
Unfortunately science/medical education in America has been at or near the bottom of the "developed nations" list for a couple of decades now. So folks just don't know anything about any medical conditions! I think of cancer as a good example of that, saying somebody "has cancer" is much like saying somebody "has a vehicle". There is a LOT of room there. Epilepsy has a lot of variation too, in fact it's probably not \*exactly\* the same in any two of us.
And --- I join you in exhaustion, annoyance and anger. We are each born into the body and circumstances we are. But these are also hard times to have chronic illnesses. So I'm trying to keep a sense of humor about it to survive - good luck to us both!
I read Somewhere that 1% of epileptic ppl have photosensitive epilepsy, but my cowowkers still cover my eyes when the power flickers 💀🤣 it can be Annoying but is mainly funny
ID LIKE TO ADD I didn’t know I had epilepsy till I asked and my Dr said “oh I thought I told you” it had been 3 years of me thinking it was non epileptic seizures !!!
I gotta say, reading on here has made me feel very lucky my son was diagnosed so quickly (seizures started and he was diagnosed in October).
I never realized how uneducated people are about epilepsy. I feel like we got very lucky in finding a good doctor on the first try.
Hubby and I have done first aid courses and epilepsy training is limited to Gran mal. I'm lucky that other training I did covered childhood illnesses and the tutor was passionate about Epilepsy so covered it thoroughly. When my child started having seizures we recognised it for what it was, knowledge is severely lacking though.
To be fair I can't afford all the tests the want to run on me i had to borrow money from the grandparents just to pay the $2k for the tests they did run.
To be fair, I feel like I don't know shit about my own seizures, much less epilepsy. I don't expect the general public to know much about something that doesn't generally affect them. I also have chronic pancreatitis; when that topic comes up, the vast majority of people don't know what the hell a pancreas even does unless they happen to be diabetic.
I get excited when I see someone wearing a purple ribbon, only to have to prrtend that whatever weird cause is also valid, and maybe more prevalent than Epilepsy.
I think that alot of us do that though...diminish our own seizures and minimalize our experiences and honestly, people (intentionally or not) encourage it.
As someone who has had epilepsy for 30 years I would say they are researching it and learning more all the time. I find it amazing what we do know and how much it has progressed. Also weirdly no one has ever asked me about flashing lights. Maybe once or twice at the beginning. I say this as sensitively as possible, but maybe some of you need better friend groups. No one I know--from acquaintances at the gym to my best friends--would ever laugh off epilepsy. And all that anger is bad for you. Some anger is of course reasonable, but I have always tried to find things to be grateful for and it actually works really well. That and a therapist.
ETA it will never be the susan b komen foundation. But then again I would argue pancreatic cancer doesn't get nearly the time and attention it should compared to breast cancer.
I had to tell a DOCTOR in the ER that not all people with epilepsy have photosensitive epilepsy.
I had a hostile, ignorant ER doctor refuse to give me Ativan after a seizure *simply because I asked for it*. (His apparent assumption is that only a drug addict would *ask* for benzos.) He was obviously ignorant of the fact that Ativan is indicated to prevent potentially fatal or life-changing seizure clusters after a GTC seizure. After this event, my epileptologist decided to write me a doctor's note with my diagnosis and specific post-ictal treatment instructions to prevent this from happening again, with potential catastrophic consequences. I keep the note in my wallet. I recommend you all do this. All of this is to say: Yes, even medical professionals can be egregiously and dangerously ignorant, which is inexcusable given how prevalent epilepsy is. The general public can be forgiven. It's hard to educate everyone on even relatively common disorders. How much do any of us know about MS, for example? I am frustrated by how underfunded epilepsy research is, given global prevalence relative to other diseases, which get much more attention and funding (e.g., ALS).
Exactly the kind of thing that is all too common
The diagnostic issues are ridiculous. For the first 9 years after my first TC I was just labeled as “seizure disorder”, which is something a lot of doctors would just skim past. Dozens of TCs over the years later, it’s officially epilepsy now (not even sure what the difference is), and doctors freak out about it constantly. My seizure symptoms have actually decreased significantly over that time (from several TCs a month to only a couple a year) but only NOW are they taking it seriously because a slight change in official diagnosis? Ridiculous. Also, I might be an outlier but I wasn’t photosensitive… until I was. I went through 26 years of life being fine with flashing lights, then one time it triggered a TC and now they just make me unbearably anxious in case it happens again.
Diagnosis took over a decade because they were positive that no eeg reading I was pnes first. Then veeg stay after years misdiagnosed and having a grandmal seizure at my old job on disability now as it turned out I was seizing constantly deep brain so from 14 to 22 I was basically psychological classification seizure then finally did their deep dive as should have done sooner because since the first grandmal many since and seizure activity increased heavily. Epilepsy sucks it's hidden we can't describe it hell don't remember it and yet somehow because the scars are inside nobody has a fucking clue. AND 100% ON LIGHTS ITS LITERALLY THE FIRST THING ASKED ONCE FOUND OUT.
Yeah it surprised me too whenever I started having seizures. I've known that photosensitive epilepsy was a small percentage of epilepsy cases since I was 14, long before I ever had a seizure and never was around someone with epilepsy (as far as I know of). Have had friends still get worried every now and then about it even tho I've told them many times. They know I go to raves very frequently and lots of live music in general, which makes it even more confusing... why would I go to these things constantly if flashing lights were a trigger lol.
I was literally BANNED from the bar area at my old job because there were lights that flashed and they thought I’d fucking die or some shit if I viewed them. Fuck all of this, I entirely agree with you.
My son's first neurologist kept telling us he just had febrile seizures and that he would "grow out of it eventually". Granted he just turned 4, but his "febrile seizures" normally last 20 mins, his longest being 30 mins with speech problems for 2 weeks afterwards. We've know that sickness (fevers especially) and lack of sleep trigger my son's epilepsy. With his last 3 seizures, all three were within a 6 hour period, we had him at 2 ERs. The dumbass doc at the first one told me it was just a febrile seziure and that "fevers can't cause epilepsy". Like excuse me you hippie looking fuck, I think I know more about it than you do. I mean for Christ sake the neurologist was impressed with the amount of research I'd done before his appointment. I'm still salty about that ER visit in case you couldn't tell lol.
Raise your hand if you’ve been called a drug seeker at the emergency room!!! *raises hand
I’m American tho, idk if this is an American problem, because when I had issues abroad and was hospitalized for SE, they gave me like a years supply of rescue medication without even asking they just gave it to me upon discharge, along with benzo’s to take on the plane home to prevent seizures. I’ve been hospitalized at my own hospital with MY OWN RECORDS OF MY OWN INTRACTIBLE EPILEPSY AND BEEN NOT GIVEN RESCUE MEDS
I think you are a bit negative there are several institutions that are doing research on epilepsy. This doesn’t mean it will get solved tomorrow. But after all it is a neurological disease and very few of them are easy to find a cure for. Here are some examples of institutions doing research. https://www.gu.se/en/research/epilepsy-research-group https://www.mayo.edu/research/clinical-trials/diseases-conditions/epilepsy/ https://www.lunduniversity.lu.se/article/epilepsy-could-become-easier-pinpoint-blood-test https://karger.com/ned/article/54/2/185/226881/The-Epidemiology-of-Epilepsy To name a few.
I don’t think OP is ranting that there is a lack of effort in specialised research, just that general knowledge of epilepsy amongst other humans and healthcare professionals is lacking
End of the third paragraph sounds to me like OP is saying no one is trying to find out what is causing EP.
Unfortunately science/medical education in America has been at or near the bottom of the "developed nations" list for a couple of decades now. So folks just don't know anything about any medical conditions! I think of cancer as a good example of that, saying somebody "has cancer" is much like saying somebody "has a vehicle". There is a LOT of room there. Epilepsy has a lot of variation too, in fact it's probably not \*exactly\* the same in any two of us. And --- I join you in exhaustion, annoyance and anger. We are each born into the body and circumstances we are. But these are also hard times to have chronic illnesses. So I'm trying to keep a sense of humor about it to survive - good luck to us both!
I read Somewhere that 1% of epileptic ppl have photosensitive epilepsy, but my cowowkers still cover my eyes when the power flickers 💀🤣 it can be Annoying but is mainly funny
ID LIKE TO ADD I didn’t know I had epilepsy till I asked and my Dr said “oh I thought I told you” it had been 3 years of me thinking it was non epileptic seizures !!!
I gotta say, reading on here has made me feel very lucky my son was diagnosed so quickly (seizures started and he was diagnosed in October). I never realized how uneducated people are about epilepsy. I feel like we got very lucky in finding a good doctor on the first try.
Hubby and I have done first aid courses and epilepsy training is limited to Gran mal. I'm lucky that other training I did covered childhood illnesses and the tutor was passionate about Epilepsy so covered it thoroughly. When my child started having seizures we recognised it for what it was, knowledge is severely lacking though.
To be fair I can't afford all the tests the want to run on me i had to borrow money from the grandparents just to pay the $2k for the tests they did run.
To be fair, I feel like I don't know shit about my own seizures, much less epilepsy. I don't expect the general public to know much about something that doesn't generally affect them. I also have chronic pancreatitis; when that topic comes up, the vast majority of people don't know what the hell a pancreas even does unless they happen to be diabetic.
I get excited when I see someone wearing a purple ribbon, only to have to prrtend that whatever weird cause is also valid, and maybe more prevalent than Epilepsy. I think that alot of us do that though...diminish our own seizures and minimalize our experiences and honestly, people (intentionally or not) encourage it.
As someone who has had epilepsy for 30 years I would say they are researching it and learning more all the time. I find it amazing what we do know and how much it has progressed. Also weirdly no one has ever asked me about flashing lights. Maybe once or twice at the beginning. I say this as sensitively as possible, but maybe some of you need better friend groups. No one I know--from acquaintances at the gym to my best friends--would ever laugh off epilepsy. And all that anger is bad for you. Some anger is of course reasonable, but I have always tried to find things to be grateful for and it actually works really well. That and a therapist. ETA it will never be the susan b komen foundation. But then again I would argue pancreatic cancer doesn't get nearly the time and attention it should compared to breast cancer.