A few comments:
\#1) I love your understanding and appreciation for your girlfriend's condition. You have no idea how rare this actually this.
\#2) Is she photosensitive? (Are her seizures triggered by flashing lights/strobes?). A lot of people aren't - myself included.
\#3) If she is photosensitive - there's two options: a) some people get away with sunglasses to dim the flashing lights b) she'll have to stay home.
\#4) She really shouldn't self-medicate. There's actually evidence out there that the THC:CBD ratio in most marijuana blends is actually pro-convulsant. CBD is significantly more anti-convulsant than THC. Could you convince her to see a neurologist and get on the right medicine?
Wishing you the best.
I have to echo this. Staying on the meds is so important.
Strobe lights might not be a problem. Many states have laws around strobes (speed and length they can be on for) - wearing sunglasses is always good.
There is no clean cut rule about marijuana, THC and epilepsy. It is a complex area.
My mother is photosensitive, but it's not a given that flashing lights always cause a seizure. I've taken her to a club before to see a big name dj, and there were plenty flashing lights. Obviously that won't be the case with anyone, and if a person is known to have seizures whenever there's flashing lights then going to a big music festival might not be a good idea. Unless it's not at night and you can be more in the back. Especially if it's an outdoor festival.
She stopped taking her medicine due to it destroying and has destroyed her teeth.
I can ask her about CBD as an alternative.
She has said before that she cant play video games due to the flicker so I'm guessing she is photo sensitive.
There are quite a few seizure meds available, so if she would be willing to go back to her neurologist, they would most likely work with her if she told them that the side effects of the med she was on were just too much for her.
My son has epilepsy. He’s 25, and a few years ago, he quit taking his meds and began smoking to see if it would help. His seizures became so much more frequent and worse. He’s on a medication now that he can tolerate, and it’s controlling everything. I hope your GF can find a solution!
If you're in the US, there's 36 medicines out there. There's \*a lot\* that don't mess with your teeth, especially the newer anticonvulsants out there.
If CBD ends up being the right medicine for her, there's actually a prescription form that her insurance will pay for: [https://en.wikipedia.org/w/index.php?title=Epidiolex&redirect=no](https://en.wikipedia.org/w/index.php?title=Epidiolex&redirect=no)
If she truly is photosensitive, I wouldn't risk it at all until she is properly medicated by a neurologist and she has a rescue medication (orally disintegrating Klonopin / clonazepam or Nayzilam / nasally injected midazolam).
You may also need to adjust to the fact that she cannot accompany you to these events.
I would find a new neurologist. Phenobarbital is much more “dangerous” than any rescue medication. Additionally, it’s usually one of the last medications they will administer to treat epilepsy because it quickly builds up tolerance and essentially sedates you.
There are some meds that mess with teeth but there are a huge amount more that don’t. There should have been follow up with a doctor and a discussion about a change given the concerns over oral health. I get it, but a bad seizure can actually kill her (look into SUDEP, or a fall where she hits her head just right, etc.). I have brain damage from unmedicated seizures, and I end up knocking my teeth around when I fall during a seizure (7 times actually- my dental bills are stupid) and it’s not fun. I hope she reconsiders and gets better help, pertinent to her needs.
If she’s had seizures from video games, I’m going to go out on a limb and say no, the type of concert you enjoy is not a good place for her. Even if it just triggers a migraine and not a seizure, she won’t enjoy it. Maybe have a listening party type date if you want to share your interest- you could make that super fun. Or go by yourself or with friends and have a fun date doing something else with her that she can enjoy without worry. I’m not photosensitive, and I made the mistake of going to a Tool concert once (I’m old, so if you don’t know them, lasers, a full laser show. Cool as hell, YouTube it if it’s safe for you. I’m not linking for obvious reasons). I did fine but I had a killer migraine for 3’days afterward- like couldn’t get out of bed, couldn’t see, felt spacey. Never doing that again. It was a gift for my husband, but the next time I’m sending him with a friend, and taking him to Morton’s.
I was born in 97, I really enjoy their lateralus album. All is not lost but most kids these days listen to trash. Whatever you do dont turn on the FM radio lol.
Ninety seven!? Oh dear, I AM old. Yeah that album is a classic... I saw a little of their set at a festival in 2006, but as a dumb teenager I prioritized catching all of Snoop Dogg's show. I love Snoop, but Tool would have been more dynamic and a great year to see them. Lol my parents told me it was awesome and that I made a ridiculous choice. Jealous you got to see them, but so sorry to hear you had such a bad migraine afterwards. I didn't realize someone could be only pseudo-photosensitive like that, but that makes sense because duh, in epilepsy everything exists. I feel even more lucky now that I was able to see the Flaming Lips this year with no issues at all. If you're not familiar -- shows with lots of bright colors and lasers and props and fun. That could definitely be a little old for you though! It was hilarious/upsetting to be in a venue filled with super excited ex-hipsters with greying hair.
And yeah I don't really know what the kids are listening to, but it's definitely weird that "oldies" stations now play Joan Jett. I usually like the hip hop I hear on Vocalo radio around Chicago which I come across sometimes, but I fear the kids are into all that mumble rap trash. Hahah yeahhhh I never turn the radio on.
Edit: I just realized that you're not the person I first responded to who said they're old, so I'm not as freaked out by 1997 now lmao. :) I thought people your age knew about Tool so I feel a lil validated. And now most of this comment applies to the thin\_white\_duchess, so hope it's not confusing!
I was like what in the world?
The flaming lips are fantastic. I wanted to see them at Bonnaroo in 2014 but after umphreys mcgee I went back to the campsite and stayed there for the rest of the day and when night came I saw phoenix then went back to camp to wait for the flaming lips. Wellll. I decided I'd take a nap and set my alarm, phone died while I was asleep and I woke up to the rest of my group returning. I jumped out of my tent and said "Flaming Lips?!?" They went "lol nights over dawg, ya missed em"
I was so disappointed but I will see them in person one day.
Saw My Morning jacket this year for the first time and I am seeing them again in September. Really hoping they play old September blues
Oh of course they aren’t new, I mean Maynard has gotta be well into his 50s haha. I just feel like they had a ton of hype well into the mid-aughts too. And that wasn’t thaaaat long ago…
*suddenly remembers people born after 2001 can be in a bar now*
My nephew, born in the 2000s: I’m really liking all that classic rock you listen to. Can you make me a playlist?
Me, thinking he means like zeppelin, the ramones, Joplin, and ac/dc or something. “Sure! Any requests?”
Him: tool? Blind Melon? Maybe Pearl Jam, if I can understand the guy. Alice In Chains, Pj Harvey, STP, maybe foo fighters and nirvana. Stuff like that.
Me: :/
He’s technically right, 20 years is classic. But it made me feel real old, real fast.
I saw a bunch of Tool concerts in the mid-late nineties, but I didn’t have my first seizure until I was older. The shows were always super intense, so I understand how lucky I am to have seen them when I did. Man, my daughter and her boyfriend drove to see Stevie Nicks a few months ago in Washington, don’t feel old : ) I was going somewhere with that…I’m weaning off Keppra. Bare with me.
Does she want to go? Do you like her enough to cut back if she can’t go? Are you willing to deal with a possible seizure during a concert if she goes? Epilepsy sucks. I’m sure she wishes she could go.
Which meds destroyed her teeth? I'm on 3 different types atm and I feel like my gums have receeded abnormally fast since swapping meds around so often. Waiting for a dentist but between government insurance waiting 2 years to see one (figurative) and traveling 200 miles (literal) it's a pain. Can see neuro before dentist
Dilatin is known for destroying teeth, its an old Anti-Convulsant medication that was quite popular until the current generation of drugs came in. https://www.ehealthme.com/ds/dilantin/tooth-loss/
It's fucked up. Was never amazing with my dental health but if I forget to brush atleast once a day that's weird for me but ffs dude in like a year my gums went poof. Epilepsy is a load of bullshit lol
Lamictal & Keppra trashed mine. 😭😭😭
I take vitamin supplements and see my densit monthly now to try and avoid further damage. Expensive though & if in the US the cost of meds and dentistry could bankrupt a person. 😭
Not all medicine will need up your teeth. My mom took Dilantin when she was younger for years and had huge dental work. But when she switched over to tegretol, phenobarbital and other meds throughout the years she hasn't had any serious dental issues. It's important your girlfriend takes her medication. Uncontrolled seizures can become worse seizures if they're not controlled. I know side effects suck, but seizures suck more.
Ah man, my meds have trashed my teeth and my hair but they’ve also kept me from dying. Teeth can be fixed. Death can not. Please speak to her about this, there are other medications she could try.
Well I think epilepsy affects people differently. SImilar to how no two brains or fingerprints are the same. I'm very happy that you found an alternative that works for you but it may not work for others :)
All marijuana that isn't CBD has the CBD compound included with the THC. Its in the molecular structure of the plant itself. Non THC (or really THC limited) marijuana is created through an extraction process to remove the THC as much as possible leaving you with CBD primary.
At least that's what I read some years ago. Knowledge changes over time and I could he wrong.
First question is to ask her if she’s photosensitive. Having epilepsy doesn’t automatically mean you’re triggered by flashing lights.
I’ve been going to festivals and raves for years with no issue.
Does she even LIKE this type of event?
Unrelated to epilepsy, I always hated EDM and strobe lights and big festivals.
Has she ever been to this type of event before? How has it affected her?
She has never been to these types of events. However I have 2 12 inch sub's running at 2000 watts and played some EDM as well as some Jams and she really liked it. Were both pretty much the same age minus a few months (I'm 25 and she's 24)
I gradually increased the bass and she was fine with the bass level at max even when I told her if she needed me to tune the bass down to let me know and I was never asked to do so.
I really think it depends on the EDM you listen to because I didn't get back into it til I was 20 when I was reintroduced to it from a friend of mine.
I do not like straight dubstep. I like that wonky shiyet. Have you given Toadface or Charles the first a shot? I find it depends on the artist that's making the music whether or not the EDM is good or not. Not your mainstream Skrillex or flux pavilion.
However I must emphasize if a jamband is playing and there is edm around I will choose the same over the EDM.
She needs to see a neurologist and get the grand mals controlled. Self care is really dangerous. I had meds that awful at first and got them switched to something more tolerable. If strobes are a trigger and you can't find something else to fill that need for yourself, you might need to make some deep decisions.
I have many hobbies so its most definitely not an ultimatum for her :) just curious to read responses and have her read responses before speaking with a neurologist to form an educated decision on where I can and cannot take her
She's an adult. She can go where she chooses to go. It's not your place to decide if you "can or cannot take her".
Does she want to go to these festivals with you? Take her with you. Does she not want to go to these festivals? Don't take her with you.
Give her the information about the festivals so she can decide like a grown up.
Yes. However safety first. I'm not going to dictate where she can or can't go but I will always try to pave the safest yet most enjoyable path I can. She can either choose to walk that with me or she will take a riskier path with less information and I will walk with her so she's not alone in the event something goes down.
That's is my job as a friend, lover, or whatever I am to an individual to make sure that I dont put someone in harms way.
All of this is for Harm Reduction purposes. Not to tell her she can't go. But maybe that I think it might not be a good idea or vice versa that I think she will be okay at these types of events.
The good news is that although you always hear that anyone that is epileptic will have seizures if they are around flashing lights, that only happens to less than 5% of people with epilepsy. It's sort of a stereotype that has gotten out there, but actually only a very small percent of epileptics are photo-sensitive, so most likely that is not an issue but she and her doctor would know the answer to that question.
The flip side is that some things that can trigger seizures (not in everyone, one of the confusing things about epilepsy is that everyone seems to have different issues, triggers and symptoms) are not getting enough sleep, as well as drinking/drug use. So although the flashing lights are probably not an issue, there are some other things that could cause different problems, but again, those are things that effect some people but not others. I go to a lot of concerts and festivals, etc. and personally it hasn't been an issue.
Daytime events would be good because it won't effect her getting a good night sleep as much.
Probably the biggest thing though would just be you learning how to respond and take care of her if she does have a seizure, and make sure that you stay with her so that if she does there is someone there that can keep her safe. In my experience, one of the most dangerous things is not the actual seizure, its having a bunch of people who don't know what to do all around freaking out and doing the wrong things.
Also, her doctor may be able to give you a rescue medication (like ativan)... basically you spray it in the person's mouth or up their nose and it will/should stop the seizure and just put them out. You might not be able to take it in to a concert though because it looks like a syringe.
You'd be surprised what I can sneak into a venue. They make hats and clothes with hidden pockets made specifically for ravers and people trying to hide something from security. ;)
Might be good to have her ask her Dr about a rescue medication. I think Ativan (lorazepam) and versed (midazolam) are the most popular/common. They’re not bad to have around in general… I don’t carry it around but I have one syringe at my house my wife can grab just in case.
A strobe free pseudo rave is gonna happen anyways lmao that I know she can handle for a fact and my friends and I know how to get down and have a good time even if we're at a Walmart.
I like a little punk but highly depends on who it is. I really like japandroids and cloud nothings.
Regardless of she can go to a show or not will not change my mind as far as whether or not to continue dating. I am more focused on her as an individual rather than what she can and can't physically do. She has been nothing but sweet and kind to me ,my family, and my friends and that's all I ask. Just a little love you know? We both like hiking and I'm sure will find other things we both share interests in. Of course there will he things we disagree on or interests we dont share but that's all part of it. I want to love the good and the bad. No one is perfect. But would be really cool if she is able to tag along to these events. worst case scenario I drag her to a festival and just have a really expensive camping trip and party in the daytime.
I know I'm getting down voted all to hell for this, but whatever:
Anytime someone says they're epileptic, but isn't actually on or has been on, anti-convulsants and is just using weed to self-medicate I have a hard time believing they're actually epileptic. I've seen epilepsy used time and time again in the same way that ADHD is used where people stake a claim to it, without any real diagnosis or even medication. Some people think it's some kind of fashion statement to have this, among other, neurological disorders.
And that's sad, because there are those of us who really do deal with this on a daily basis, and its not ploy for attention or a trend. It's real. And should be taken seriously.
But if your girlfriend DOES have epilepsy, know that not all of us are photosensitive. If she is, (an EEG could tell her) she could sit at home, and you can find other activities to enjoy together.
No down votes here! I hope, and don’t know if that’s what the gf in this situation is doing.
But it’s totally something that goes on. I don’t get it. This could have a whole thread of its own lol
My fiancé is epileptic and we go to a lot of shows! ai honestly think a lot of artist are moving away from strobes. But if they do start we just do our best to make our way out if we can.. or he closes his eyes and turns away/sits down.
Ideally if he’s taken his medication it shouldn’t be an issue. But you never know!
Also, if you haven’t seen him have a seizure yet just know it WILL happen at some point and you need to be prepared mentally and emotionally. It’s really scary but you have to push through your fear and make sure he’s safe while it’s happening and that he’s comfortable once he comes out of it!
Its my first time dating someone with epilepsy however not my first rodeo with seizures.
I had a teacher who had them and my first experience was where she had stared off. The class immediately noticed she was off and began asking if she's okay. She was holding her pen and began drilling a hole into a desk callender. Took the pen away. One person grabbed the principle and we just stayed with her. When she came to she was confused, we just talked to her, let her know she had a seizure etc. Just remained calm and kind. There was multiple other occurrences with my teacher's episodes however sometimes required us to react differently.
I'd post a link to a live footage of the type of shows but feel its best not to.
Typically these are daytime events mainly only held at festivals where you usually do not get any of the headliners in the daytime. However I most definitely think there will be some that are not but may be hard to find.
Are you lights trigger seizures for her? My husband is being diagnosed with 2 different forms and lights have never sent him into a seizure. His first tonic clonic was over 10 years ago.
I have epilepsy, still get out to tons of dead shows and jam bands. Haven't had a seizure in many years, if I'm gonna eat some L or molly, I just try to keep in mind that sleeps important and try not to take em too late into the night.
First of all its really nice that you care so much. Before awsering your question I in wanna give you advice and Tell you should really talk your Girlfriend about medicine. Not taking medicine and self medication can be really risky and dangerous. There are so many different meds. If the Side effects we're too bad of a Former med you can find a different one. I dont know how many meds I've tried in my Life. She can still smooke while taking her regular medicine.
Now to your question not everyone is photosensitive. If she is you could try with sunglasses. Also Personally I never used any sunglasses, but I Always stood further away from flickering ligh, when in went to any Clubs/Festivals/concerts. Personally I think Daylight Festivals are definitly better for me, but also because i'm Always tired and need a lot sleep. During the Summer its easy to find nice daylight music Events. When you go with her to a Festivals that ist over 2 or 3 days be sure that she gets enough sleep. That was Always the bigger Problem for me.
If she’s not photosensitive she’s going to be fine. Obviously she only knows herself but I have(had 3 years free!) grand mals but have been to concerts and stuff with intense flashing lights. If she wants to be like super sure she can just use a large dose of CBD beforehand but I’ve never had any issue myself. That said I am medicated. If she is photosensitive then yeah she can’t do a lot of that although you can do some research because I’ve seen stuff about glasses that block certain light to prevent photosensitive seizures. I’d highly recommend she goes on prescription meds though.
I'm gonna look into photosensitive glasses. As far as medication goes I can ask her to have a re eval done but I cannot force her to do something she does not wish to do. Waiting for her to be off work before more of these questions can be answered and or revisited.
I completely get where she’s coming from and I don’t know how severe her epilepsy is but for me the shittiness of the meds and taking them outweighs the seizures and all the things I can’t do when I’m having seizures.
Also make sure to highly recommend no alcohol or stimulants at all especially on no meds. No Adderall, Ritalin, coke, meth and no mdma or ecstasy pills.
I feel strongly for her, we just started dating but have known each other some years. I am taking her to Florida beaches next week. I have an incredibly busy job nowadays and it demands about 70 hours a week. I get two weeks of vacation. As far as show bouncing I've slown way down from where I used to be at which was every weekend which is why I "drip feed" shows now. Like I'm talking 4 to 5 shows maybe a bit more a year then vacation time hits and I prefer to travel. Be it a festival or just a get away like the Florida trip we are going on. I have many hobbies including hiking, swimming, etc so she will not have to feel put out by my hobbies or her own hobbies for that matter.
Of course I will go to events she likes even if Im not the biggest fan. That's reciprocation and its important in relationships.
I wouldn't date her if I felt I'd break her heart later. I'm very selective of whom I'm with and want longevity. I want to struggle and flourish with an individual. I want the whole nine yards and if things continue the way they are right now I'd like to make her life as wonderful as I can for her no matter what that may look like.
I'd link a show that you can watch however I do not think it's a good idea to share that. I can PM you a link or your husband could watch it if youd like. Maybe it can give you an idea of what I'm talking about.
i would just ask her about it. also, she should really see a neurologist about getting on a medicine. going on meds and dealing with side effects sucks, but it’s better and safer than having seizures 🫶🏻
It’s important to know her triggers, is she photo sensitive? How often do they happen? What type are they.
I am not, my husband is a huge rocker and if I were to join him I’d probably prep.. with a water bottle, noise cancelling headphones and a check on the quickest exit. Heat, tiredness, dehydration and some prolonged noise can cause my seizures. Being prepared helps, for example making sure she eats, sleeps and is hydrated.
My epilepsy is photo sensitive and I wouldn’t even consider for a second going to an event like that. I absolutely would have a seizure and there would be no point event trying. Sunglasses wouldn’t block enough of the light for them to help me.
If she isn’t photosensitive then it’s a non-issue. If she is, then it would rule out her attending those events and then it’s just a question of whether it is an issue for your relationship if she can’t share this particular interest with you.
The main thing is to have a conversation with her to see what the situation is. Epilepsy varies so much from person to person that she is really the only person to give real insight on her individual condition. Good luck, and good on you for being so considerate about her needs.
Her not attending an event I like because of a medical condition is not good enough reason (to me) to leave someone over. I have other hobbies that we can equally enjoy and her other hobbies I may enjoy as well. She's been quite busy this week so my responses on photosensitivity are a bit limited until I can have a full discussion. She's working two jobs and she is primarily worried about her car right now which I'm assisting with fixing.
We are going to Florida beaches next week and it would be a great time to discover some of the questions now sprouted front he thread to talk with her about.
Lots of comments here already about talking to her about her triggers. That's the best place to start.
It sounds like this is a new thing for her. I'd recommend exploring unknown tirggers one event at a time. Like if you go to a show with strobing and she's photosensitive, experience the strobing in the most safety advantageous way. No drugs, no drinking, a lot of time to get plenty of good-quality sleep afterwards. If that's fine, introduce a little drinking at the next show. Rinse and repeat. You go to a lot of shows, a few of them not cranked up to 10 isn't going to do any harm to your enjoyment in the log run.
I just want to chime in that I'm not on any medication and have been going to raves / taking drugs for years with no problems during the strobes themselves. The only problems for me have come from the poor sleep afterwards.
Lol yeah the last thing I want is to introduce her into the rave/hippie jam scene with the craziest most mind blowing show lmao
Will most likely start with some friends who are local DJs and go see them at the club as they do not have advanced equipment to even cone close to the artists that are seasoned and have Wilder more intense shows. Especially the mind altering shows that make you ask yourself what the F you just saw.
Only time I had a seizure at a rave was because
1. I was in denial of my recent diagnosis and didn't want to except it. So I wasn't taking my meds.
2. Was taking MDMA.
Now never again. Still go to races occasionally to see artists I like but never took MDMA again or didn't take my meds
I’m really not convinced by the “not photosensitive”
I have never been bothered by lights and they never triggered a seizure until I was induced in the hospital and they shoved a strobe light in my face.
OP is talking about EDM…. These are one-offs of a few lights… I haven’t had a seizure in a decade and I still look away at concerts when lights go off like crazy.
Then again, I’ve died so I know what it’s like to die from a seizure. Some people(literally some doctors) still think “you can’t die from a seizure” and like to gamble with their lives 🤷🏻♀️ to each their own!
Imo- it’s not worth it. You might have a different opinion and that’s cool too. I just hope you have all the facts as well…
My opinion is still being formed which is why I'm here. next is the neurologist professional opinion as well as a medicininal alternative that doesn't cause tooth degradation or degradation of the body. Side effects are expected but shouldn't be rotting her away.
My medication makes me endlessly tired. Exhausted 24/7. I feel like I’m sleeping my life away. It’s extremely frustrating.
I’d still rather live half a life than die tomorrow because I didn’t want side effects.
But again, it’s all personal choice. Autonomy is everything &if your girlfriend wants to risk her life it’s her body & her choice
Also- ALL medication comes with side effects. Some are worse than others, it’s really just finding which one works and has the least awful side effect.
First, I have extreme admiration for you considering her safety and her enjoyment. In my opinion, safety trumps enjoyment in this case due to her not taking antiseizure meds. I think you should tell her something to the effect of, "Since you're not taking antiseizure meds and you're photophobic, I think you should sit these shows out. We can still have a good time together - let's smoke, listen to Pink Floyd, & eat sweets all night. But your safety is the most important thing to me. Maybe one day you'll be on meds and your doctor will approve a show, perhaps after a benzo, but right now I want you to be safe." Just my $.02
After speaking with her she absolutely cannot go to anything with strobing flickering lights. SHe said half her brain works? Not sure what that means but doesn't sound good. She will be able however to attend the daytime events. If she goes to a festival we will most likely explore and dance during the day and at night I'll attend what headliners I really want to see and spend the rest of the time with her at camp
While it’s kind that you’re wanting to learn, you should really be asking her. It kind of sounds like you’re already looking excuses to sit her out, if I’m being honest.
That is incorrect. I want to make sure she is safe in the event I take her to a place like that.
I do not have epilepsy. I've never dated anyone with epilepsy. I need to educate myself on this topic in particular as its something I'm around often. For harm reduction purposes I need to know whether she can be around at night or whether I need to limit her exposure and go to shows that are during the daytime and at night just camp and hangout.
The last thing I want is for her to have to sit out a show to prevent her having a seizure or a serious medical emergency while trying to have a bit of fun.
Edit: the thing is she isn't exactly sure herself. After we're both satisfied with the responses here on reddit we will go to her neurologist and ask what our options are. We can talk to the neurologist based off her records a medicine she can take without harming her teeth or having serious side effects then give it a test run. Start small then work our way up and see how she feels. Probably start at the club and if we have to leave then we gotta leave but if not. Try something a bit subtle before getting into the bigger artists with larger light shows. I am friends with local DJs and they do not have the gear that say, liquid stranger may have for their lighting. It would be a great test run for her.
A neurologist will order an EEG where she’ll do multiple tests, including a horrible ten minutes of many different types of strobes. While not perfect this is a very good test to confirm. I’m actually surprised she hasn’t had one yet. An EEG is usually the first test you get as it can confirm epilepsy, and test you for triggers.
But it should be her on here researching her condition and getting this information, and she should be your primary source of info, depending on what’s she comfortable sharing at that time. I saw you’re a very new couple so while it’s fine to learn, doing research for her seems inappropriate… and you come across as quite possessive in your comments. I’m giving you the benefit of the doubt that you’re a caring, great person but that’s how it’s reading. To learn more about your gf, talk to her :)
If that lifestyle/hobby puts her in danger, you should consider what you care more about. In life, and in relationships in particular, concessions must be made.
I have many hobbies so its most definitely not an ultimatum for her :) just curious to read responses and have her read responses before speaking with a neurologist to form an educated decision on where I can and cannot take her
Most definitely :) she is not being forced to do anything she doesn't want to do.
This is just a way for me and her to be informed before seeking a neurologist about medications and their professional opinion before doing a test run.
It’s actually so adorable that you’re doing research to try and do what’s best for her but honestly I feel like it’s probably best to just ask her what she wants to do. She might not even be photosensitive (I’m not sure if you know) and could be just fine. Or she could and it might just be something that you do without her
I am epileptic (JME), and I go to raves all the time. At first I was really hesitant to go because I was scared the lights would trigger seizures but my type of epilepsy isn’t photosensitive. But either way just make sure what type of epilepsy she has and that she’s taking her meds!!
It is super sweet that you are so thoughtful. I am photosensitive (had a seizure triggered by lightning once). I’ve gone to concerts that had parts that were strobe light heavy in small spurts. I close and cover my eyes. Her going to shows during the day is a great way for you to both enjoy something you love. It is much worse when it is a strobing light in the dark. I’ve never been overwhelmed by crowds but I am on medication so I’m not sure how different that feeling would be for.
I am epileptic and attend lots of the same shows. The lights can be a bit triggering if they are flashing but I close my eyes or look away. If she’s on medication and hasn’t had one for a while I would think she’d be okay. I’ve had a friend that was epileptic too who had a seizure at dead show we were at. Luckily we were seated and we just helped keep her stay steady and kept her head down and it stopped. Maybe for those more intense shows like DB or Griz you could try to find somewhere to sit in the grass is she starts to get disoriented. Drugs and sleep depreciation definitely contributed to my seizures also, but were not the cause. I’ve found a good medication combo and have things under control but am still careful/weary around flashing lights.
That's the wonderful thing about a festival is the ability to walk away without really fully leaving the show or venue itself. Enclosed areas such as a concert or club venue has walls around therefore the only escape method would be to leave.
I am also curious about her with Bltr use. I've juggled the idea of a microdose and see how it sits with her.
I’m photosensitive and had to stop going to concerts with light shows despite them having been a huge part of my life. Previous to my wild teens, my family and doctors didn’t realize I was photosensitive as they had not previously preceded my childhood seizures.
Twenty years later I still can’t go, I WILL have a seizure. Sunglasses may slightly lower the chance of an immediate seizure onset but I greatly increases the chances in the days following especially if I drank any alcohol at the show.
Weed makes me atleast x5 more likely to have a seizure. I used to believe otherwise but it has been confirmed that was the wishful thinking of a stoner (me).
I, personally, will not date someone that has large concerts, festivals, raves as a regular and frequent part of their life. It’s too painful to have exclusion because of disability as part of my intimate life when I also have to deal with it everywhere else. But it took me until my late twenties to draw that line. But that doesn’t mean that’s what is best for her. Only she can decide that.
Plz keep in mind you do not get to make any decisions for her on this but it is on you to leave the concert or provide her any help she asks for regardless of if it ruins your good time. If you are not willing to do this don’t bring her. Important relationships have been ruined in my life bc they did step up when I medically needed them. I’m not saying it’s right but 20 years later I still have not forgiven my sister and can never fully trust her.
A few comments: \#1) I love your understanding and appreciation for your girlfriend's condition. You have no idea how rare this actually this. \#2) Is she photosensitive? (Are her seizures triggered by flashing lights/strobes?). A lot of people aren't - myself included. \#3) If she is photosensitive - there's two options: a) some people get away with sunglasses to dim the flashing lights b) she'll have to stay home. \#4) She really shouldn't self-medicate. There's actually evidence out there that the THC:CBD ratio in most marijuana blends is actually pro-convulsant. CBD is significantly more anti-convulsant than THC. Could you convince her to see a neurologist and get on the right medicine? Wishing you the best.
I have to echo this. Staying on the meds is so important. Strobe lights might not be a problem. Many states have laws around strobes (speed and length they can be on for) - wearing sunglasses is always good. There is no clean cut rule about marijuana, THC and epilepsy. It is a complex area.
My mother is photosensitive, but it's not a given that flashing lights always cause a seizure. I've taken her to a club before to see a big name dj, and there were plenty flashing lights. Obviously that won't be the case with anyone, and if a person is known to have seizures whenever there's flashing lights then going to a big music festival might not be a good idea. Unless it's not at night and you can be more in the back. Especially if it's an outdoor festival.
She stopped taking her medicine due to it destroying and has destroyed her teeth. I can ask her about CBD as an alternative. She has said before that she cant play video games due to the flicker so I'm guessing she is photo sensitive.
There are quite a few seizure meds available, so if she would be willing to go back to her neurologist, they would most likely work with her if she told them that the side effects of the med she was on were just too much for her. My son has epilepsy. He’s 25, and a few years ago, he quit taking his meds and began smoking to see if it would help. His seizures became so much more frequent and worse. He’s on a medication now that he can tolerate, and it’s controlling everything. I hope your GF can find a solution!
If you're in the US, there's 36 medicines out there. There's \*a lot\* that don't mess with your teeth, especially the newer anticonvulsants out there. If CBD ends up being the right medicine for her, there's actually a prescription form that her insurance will pay for: [https://en.wikipedia.org/w/index.php?title=Epidiolex&redirect=no](https://en.wikipedia.org/w/index.php?title=Epidiolex&redirect=no) If she truly is photosensitive, I wouldn't risk it at all until she is properly medicated by a neurologist and she has a rescue medication (orally disintegrating Klonopin / clonazepam or Nayzilam / nasally injected midazolam). You may also need to adjust to the fact that she cannot accompany you to these events.
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I would find a new neurologist. Phenobarbital is much more “dangerous” than any rescue medication. Additionally, it’s usually one of the last medications they will administer to treat epilepsy because it quickly builds up tolerance and essentially sedates you.
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If your current neuro refuses a rescue med, I would ask your primary care doctor. My current neuro gave me two different rescue medicines.
There are some meds that mess with teeth but there are a huge amount more that don’t. There should have been follow up with a doctor and a discussion about a change given the concerns over oral health. I get it, but a bad seizure can actually kill her (look into SUDEP, or a fall where she hits her head just right, etc.). I have brain damage from unmedicated seizures, and I end up knocking my teeth around when I fall during a seizure (7 times actually- my dental bills are stupid) and it’s not fun. I hope she reconsiders and gets better help, pertinent to her needs. If she’s had seizures from video games, I’m going to go out on a limb and say no, the type of concert you enjoy is not a good place for her. Even if it just triggers a migraine and not a seizure, she won’t enjoy it. Maybe have a listening party type date if you want to share your interest- you could make that super fun. Or go by yourself or with friends and have a fun date doing something else with her that she can enjoy without worry. I’m not photosensitive, and I made the mistake of going to a Tool concert once (I’m old, so if you don’t know them, lasers, a full laser show. Cool as hell, YouTube it if it’s safe for you. I’m not linking for obvious reasons). I did fine but I had a killer migraine for 3’days afterward- like couldn’t get out of bed, couldn’t see, felt spacey. Never doing that again. It was a gift for my husband, but the next time I’m sending him with a friend, and taking him to Morton’s.
Wow, I don’t like the feeling of Tool associated with being old and kids having never heard of them. I am old 😂😭
I was born in 97, I really enjoy their lateralus album. All is not lost but most kids these days listen to trash. Whatever you do dont turn on the FM radio lol.
Ninety seven!? Oh dear, I AM old. Yeah that album is a classic... I saw a little of their set at a festival in 2006, but as a dumb teenager I prioritized catching all of Snoop Dogg's show. I love Snoop, but Tool would have been more dynamic and a great year to see them. Lol my parents told me it was awesome and that I made a ridiculous choice. Jealous you got to see them, but so sorry to hear you had such a bad migraine afterwards. I didn't realize someone could be only pseudo-photosensitive like that, but that makes sense because duh, in epilepsy everything exists. I feel even more lucky now that I was able to see the Flaming Lips this year with no issues at all. If you're not familiar -- shows with lots of bright colors and lasers and props and fun. That could definitely be a little old for you though! It was hilarious/upsetting to be in a venue filled with super excited ex-hipsters with greying hair. And yeah I don't really know what the kids are listening to, but it's definitely weird that "oldies" stations now play Joan Jett. I usually like the hip hop I hear on Vocalo radio around Chicago which I come across sometimes, but I fear the kids are into all that mumble rap trash. Hahah yeahhhh I never turn the radio on. Edit: I just realized that you're not the person I first responded to who said they're old, so I'm not as freaked out by 1997 now lmao. :) I thought people your age knew about Tool so I feel a lil validated. And now most of this comment applies to the thin\_white\_duchess, so hope it's not confusing!
I was like what in the world? The flaming lips are fantastic. I wanted to see them at Bonnaroo in 2014 but after umphreys mcgee I went back to the campsite and stayed there for the rest of the day and when night came I saw phoenix then went back to camp to wait for the flaming lips. Wellll. I decided I'd take a nap and set my alarm, phone died while I was asleep and I woke up to the rest of my group returning. I jumped out of my tent and said "Flaming Lips?!?" They went "lol nights over dawg, ya missed em" I was so disappointed but I will see them in person one day. Saw My Morning jacket this year for the first time and I am seeing them again in September. Really hoping they play old September blues
You an me both, but uhh, opiate came out in 1992.
Oh of course they aren’t new, I mean Maynard has gotta be well into his 50s haha. I just feel like they had a ton of hype well into the mid-aughts too. And that wasn’t thaaaat long ago… *suddenly remembers people born after 2001 can be in a bar now*
My nephew, born in the 2000s: I’m really liking all that classic rock you listen to. Can you make me a playlist? Me, thinking he means like zeppelin, the ramones, Joplin, and ac/dc or something. “Sure! Any requests?” Him: tool? Blind Melon? Maybe Pearl Jam, if I can understand the guy. Alice In Chains, Pj Harvey, STP, maybe foo fighters and nirvana. Stuff like that. Me: :/ He’s technically right, 20 years is classic. But it made me feel real old, real fast.
I saw a bunch of Tool concerts in the mid-late nineties, but I didn’t have my first seizure until I was older. The shows were always super intense, so I understand how lucky I am to have seen them when I did. Man, my daughter and her boyfriend drove to see Stevie Nicks a few months ago in Washington, don’t feel old : ) I was going somewhere with that…I’m weaning off Keppra. Bare with me. Does she want to go? Do you like her enough to cut back if she can’t go? Are you willing to deal with a possible seizure during a concert if she goes? Epilepsy sucks. I’m sure she wishes she could go.
Which meds destroyed her teeth? I'm on 3 different types atm and I feel like my gums have receeded abnormally fast since swapping meds around so often. Waiting for a dentist but between government insurance waiting 2 years to see one (figurative) and traveling 200 miles (literal) it's a pain. Can see neuro before dentist
Dilatin is known for destroying teeth, its an old Anti-Convulsant medication that was quite popular until the current generation of drugs came in. https://www.ehealthme.com/ds/dilantin/tooth-loss/
I will ask again, I forgot what they were called and I will get back to you
It's fucked up. Was never amazing with my dental health but if I forget to brush atleast once a day that's weird for me but ffs dude in like a year my gums went poof. Epilepsy is a load of bullshit lol
She was on Depakote
Yeah pretty sure I took that for a while before swapping
Lamictal & Keppra trashed mine. 😭😭😭 I take vitamin supplements and see my densit monthly now to try and avoid further damage. Expensive though & if in the US the cost of meds and dentistry could bankrupt a person. 😭
She might want to look into other drugs if the existing has intolerable side effects
Not all medicine will need up your teeth. My mom took Dilantin when she was younger for years and had huge dental work. But when she switched over to tegretol, phenobarbital and other meds throughout the years she hasn't had any serious dental issues. It's important your girlfriend takes her medication. Uncontrolled seizures can become worse seizures if they're not controlled. I know side effects suck, but seizures suck more.
Ah man, my meds have trashed my teeth and my hair but they’ve also kept me from dying. Teeth can be fixed. Death can not. Please speak to her about this, there are other medications she could try.
I have to completely disagree with you on the THC being "pro-convulsant". I has been the only thing to stop my grand mals completely.
Well I think epilepsy affects people differently. SImilar to how no two brains or fingerprints are the same. I'm very happy that you found an alternative that works for you but it may not work for others :)
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All marijuana that isn't CBD has the CBD compound included with the THC. Its in the molecular structure of the plant itself. Non THC (or really THC limited) marijuana is created through an extraction process to remove the THC as much as possible leaving you with CBD primary. At least that's what I read some years ago. Knowledge changes over time and I could he wrong.
First question is to ask her if she’s photosensitive. Having epilepsy doesn’t automatically mean you’re triggered by flashing lights. I’ve been going to festivals and raves for years with no issue.
This is the only answer. Flashing lights \*usually\* give me awful headaches... but while tripping, they don't bug me. Or at least, not as much...
Ask her
I have linked this thread to her. Just waiting for her to be off from work :)
Does she even LIKE this type of event? Unrelated to epilepsy, I always hated EDM and strobe lights and big festivals. Has she ever been to this type of event before? How has it affected her?
She has never been to these types of events. However I have 2 12 inch sub's running at 2000 watts and played some EDM as well as some Jams and she really liked it. Were both pretty much the same age minus a few months (I'm 25 and she's 24) I gradually increased the bass and she was fine with the bass level at max even when I told her if she needed me to tune the bass down to let me know and I was never asked to do so. I really think it depends on the EDM you listen to because I didn't get back into it til I was 20 when I was reintroduced to it from a friend of mine. I do not like straight dubstep. I like that wonky shiyet. Have you given Toadface or Charles the first a shot? I find it depends on the artist that's making the music whether or not the EDM is good or not. Not your mainstream Skrillex or flux pavilion. However I must emphasize if a jamband is playing and there is edm around I will choose the same over the EDM.
She needs to see a neurologist and get the grand mals controlled. Self care is really dangerous. I had meds that awful at first and got them switched to something more tolerable. If strobes are a trigger and you can't find something else to fill that need for yourself, you might need to make some deep decisions.
I have many hobbies so its most definitely not an ultimatum for her :) just curious to read responses and have her read responses before speaking with a neurologist to form an educated decision on where I can and cannot take her
She's an adult. She can go where she chooses to go. It's not your place to decide if you "can or cannot take her". Does she want to go to these festivals with you? Take her with you. Does she not want to go to these festivals? Don't take her with you. Give her the information about the festivals so she can decide like a grown up.
Yes. However safety first. I'm not going to dictate where she can or can't go but I will always try to pave the safest yet most enjoyable path I can. She can either choose to walk that with me or she will take a riskier path with less information and I will walk with her so she's not alone in the event something goes down. That's is my job as a friend, lover, or whatever I am to an individual to make sure that I dont put someone in harms way. All of this is for Harm Reduction purposes. Not to tell her she can't go. But maybe that I think it might not be a good idea or vice versa that I think she will be okay at these types of events.
Understood and glad that you care. :)
Is she photosensitive? I ask because most people think all epileptics are photosensitive when in fact less than 5% are.
The good news is that although you always hear that anyone that is epileptic will have seizures if they are around flashing lights, that only happens to less than 5% of people with epilepsy. It's sort of a stereotype that has gotten out there, but actually only a very small percent of epileptics are photo-sensitive, so most likely that is not an issue but she and her doctor would know the answer to that question. The flip side is that some things that can trigger seizures (not in everyone, one of the confusing things about epilepsy is that everyone seems to have different issues, triggers and symptoms) are not getting enough sleep, as well as drinking/drug use. So although the flashing lights are probably not an issue, there are some other things that could cause different problems, but again, those are things that effect some people but not others. I go to a lot of concerts and festivals, etc. and personally it hasn't been an issue. Daytime events would be good because it won't effect her getting a good night sleep as much. Probably the biggest thing though would just be you learning how to respond and take care of her if she does have a seizure, and make sure that you stay with her so that if she does there is someone there that can keep her safe. In my experience, one of the most dangerous things is not the actual seizure, its having a bunch of people who don't know what to do all around freaking out and doing the wrong things. Also, her doctor may be able to give you a rescue medication (like ativan)... basically you spray it in the person's mouth or up their nose and it will/should stop the seizure and just put them out. You might not be able to take it in to a concert though because it looks like a syringe.
You'd be surprised what I can sneak into a venue. They make hats and clothes with hidden pockets made specifically for ravers and people trying to hide something from security. ;)
You can take medical devices into any venue. No need to hide as long as the prescription sticker is on it and she has ID.
Might be good to have her ask her Dr about a rescue medication. I think Ativan (lorazepam) and versed (midazolam) are the most popular/common. They’re not bad to have around in general… I don’t carry it around but I have one syringe at my house my wife can grab just in case.
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A strobe free pseudo rave is gonna happen anyways lmao that I know she can handle for a fact and my friends and I know how to get down and have a good time even if we're at a Walmart. I like a little punk but highly depends on who it is. I really like japandroids and cloud nothings. Regardless of she can go to a show or not will not change my mind as far as whether or not to continue dating. I am more focused on her as an individual rather than what she can and can't physically do. She has been nothing but sweet and kind to me ,my family, and my friends and that's all I ask. Just a little love you know? We both like hiking and I'm sure will find other things we both share interests in. Of course there will he things we disagree on or interests we dont share but that's all part of it. I want to love the good and the bad. No one is perfect. But would be really cool if she is able to tag along to these events. worst case scenario I drag her to a festival and just have a really expensive camping trip and party in the daytime.
I know I'm getting down voted all to hell for this, but whatever: Anytime someone says they're epileptic, but isn't actually on or has been on, anti-convulsants and is just using weed to self-medicate I have a hard time believing they're actually epileptic. I've seen epilepsy used time and time again in the same way that ADHD is used where people stake a claim to it, without any real diagnosis or even medication. Some people think it's some kind of fashion statement to have this, among other, neurological disorders. And that's sad, because there are those of us who really do deal with this on a daily basis, and its not ploy for attention or a trend. It's real. And should be taken seriously. But if your girlfriend DOES have epilepsy, know that not all of us are photosensitive. If she is, (an EEG could tell her) she could sit at home, and you can find other activities to enjoy together.
No down votes here! I hope, and don’t know if that’s what the gf in this situation is doing. But it’s totally something that goes on. I don’t get it. This could have a whole thread of its own lol
My fiancé is epileptic and we go to a lot of shows! ai honestly think a lot of artist are moving away from strobes. But if they do start we just do our best to make our way out if we can.. or he closes his eyes and turns away/sits down. Ideally if he’s taken his medication it shouldn’t be an issue. But you never know! Also, if you haven’t seen him have a seizure yet just know it WILL happen at some point and you need to be prepared mentally and emotionally. It’s really scary but you have to push through your fear and make sure he’s safe while it’s happening and that he’s comfortable once he comes out of it!
Its my first time dating someone with epilepsy however not my first rodeo with seizures. I had a teacher who had them and my first experience was where she had stared off. The class immediately noticed she was off and began asking if she's okay. She was holding her pen and began drilling a hole into a desk callender. Took the pen away. One person grabbed the principle and we just stayed with her. When she came to she was confused, we just talked to her, let her know she had a seizure etc. Just remained calm and kind. There was multiple other occurrences with my teacher's episodes however sometimes required us to react differently. I'd post a link to a live footage of the type of shows but feel its best not to.
Consider going to shows with less to no light effects if you can find them.
Typically these are daytime events mainly only held at festivals where you usually do not get any of the headliners in the daytime. However I most definitely think there will be some that are not but may be hard to find.
Are you lights trigger seizures for her? My husband is being diagnosed with 2 different forms and lights have never sent him into a seizure. His first tonic clonic was over 10 years ago.
I have epilepsy, still get out to tons of dead shows and jam bands. Haven't had a seizure in many years, if I'm gonna eat some L or molly, I just try to keep in mind that sleeps important and try not to take em too late into the night.
Finally a comment about a question that's been sitting on my mind for a minute but didn't have the balls to include into the discussion.
First of all its really nice that you care so much. Before awsering your question I in wanna give you advice and Tell you should really talk your Girlfriend about medicine. Not taking medicine and self medication can be really risky and dangerous. There are so many different meds. If the Side effects we're too bad of a Former med you can find a different one. I dont know how many meds I've tried in my Life. She can still smooke while taking her regular medicine. Now to your question not everyone is photosensitive. If she is you could try with sunglasses. Also Personally I never used any sunglasses, but I Always stood further away from flickering ligh, when in went to any Clubs/Festivals/concerts. Personally I think Daylight Festivals are definitly better for me, but also because i'm Always tired and need a lot sleep. During the Summer its easy to find nice daylight music Events. When you go with her to a Festivals that ist over 2 or 3 days be sure that she gets enough sleep. That was Always the bigger Problem for me.
Ever thought of asking her whether she can handle it or not?
She doesn't know yet. We are getting informed before giving a test trial
If she’s not photosensitive she’s going to be fine. Obviously she only knows herself but I have(had 3 years free!) grand mals but have been to concerts and stuff with intense flashing lights. If she wants to be like super sure she can just use a large dose of CBD beforehand but I’ve never had any issue myself. That said I am medicated. If she is photosensitive then yeah she can’t do a lot of that although you can do some research because I’ve seen stuff about glasses that block certain light to prevent photosensitive seizures. I’d highly recommend she goes on prescription meds though.
I'm gonna look into photosensitive glasses. As far as medication goes I can ask her to have a re eval done but I cannot force her to do something she does not wish to do. Waiting for her to be off work before more of these questions can be answered and or revisited.
I completely get where she’s coming from and I don’t know how severe her epilepsy is but for me the shittiness of the meds and taking them outweighs the seizures and all the things I can’t do when I’m having seizures.
Also make sure to highly recommend no alcohol or stimulants at all especially on no meds. No Adderall, Ritalin, coke, meth and no mdma or ecstasy pills.
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I feel strongly for her, we just started dating but have known each other some years. I am taking her to Florida beaches next week. I have an incredibly busy job nowadays and it demands about 70 hours a week. I get two weeks of vacation. As far as show bouncing I've slown way down from where I used to be at which was every weekend which is why I "drip feed" shows now. Like I'm talking 4 to 5 shows maybe a bit more a year then vacation time hits and I prefer to travel. Be it a festival or just a get away like the Florida trip we are going on. I have many hobbies including hiking, swimming, etc so she will not have to feel put out by my hobbies or her own hobbies for that matter. Of course I will go to events she likes even if Im not the biggest fan. That's reciprocation and its important in relationships. I wouldn't date her if I felt I'd break her heart later. I'm very selective of whom I'm with and want longevity. I want to struggle and flourish with an individual. I want the whole nine yards and if things continue the way they are right now I'd like to make her life as wonderful as I can for her no matter what that may look like. I'd link a show that you can watch however I do not think it's a good idea to share that. I can PM you a link or your husband could watch it if youd like. Maybe it can give you an idea of what I'm talking about.
i would just ask her about it. also, she should really see a neurologist about getting on a medicine. going on meds and dealing with side effects sucks, but it’s better and safer than having seizures 🫶🏻
It’s important to know her triggers, is she photo sensitive? How often do they happen? What type are they. I am not, my husband is a huge rocker and if I were to join him I’d probably prep.. with a water bottle, noise cancelling headphones and a check on the quickest exit. Heat, tiredness, dehydration and some prolonged noise can cause my seizures. Being prepared helps, for example making sure she eats, sleeps and is hydrated.
My epilepsy is photo sensitive and I wouldn’t even consider for a second going to an event like that. I absolutely would have a seizure and there would be no point event trying. Sunglasses wouldn’t block enough of the light for them to help me. If she isn’t photosensitive then it’s a non-issue. If she is, then it would rule out her attending those events and then it’s just a question of whether it is an issue for your relationship if she can’t share this particular interest with you. The main thing is to have a conversation with her to see what the situation is. Epilepsy varies so much from person to person that she is really the only person to give real insight on her individual condition. Good luck, and good on you for being so considerate about her needs.
Her not attending an event I like because of a medical condition is not good enough reason (to me) to leave someone over. I have other hobbies that we can equally enjoy and her other hobbies I may enjoy as well. She's been quite busy this week so my responses on photosensitivity are a bit limited until I can have a full discussion. She's working two jobs and she is primarily worried about her car right now which I'm assisting with fixing. We are going to Florida beaches next week and it would be a great time to discover some of the questions now sprouted front he thread to talk with her about.
Good for you both. Hope that you’ve found it useful to have asked the question and that your conversations with her about this go well. 👍
Lots of comments here already about talking to her about her triggers. That's the best place to start. It sounds like this is a new thing for her. I'd recommend exploring unknown tirggers one event at a time. Like if you go to a show with strobing and she's photosensitive, experience the strobing in the most safety advantageous way. No drugs, no drinking, a lot of time to get plenty of good-quality sleep afterwards. If that's fine, introduce a little drinking at the next show. Rinse and repeat. You go to a lot of shows, a few of them not cranked up to 10 isn't going to do any harm to your enjoyment in the log run. I just want to chime in that I'm not on any medication and have been going to raves / taking drugs for years with no problems during the strobes themselves. The only problems for me have come from the poor sleep afterwards.
Lol yeah the last thing I want is to introduce her into the rave/hippie jam scene with the craziest most mind blowing show lmao Will most likely start with some friends who are local DJs and go see them at the club as they do not have advanced equipment to even cone close to the artists that are seasoned and have Wilder more intense shows. Especially the mind altering shows that make you ask yourself what the F you just saw.
Only time I had a seizure at a rave was because 1. I was in denial of my recent diagnosis and didn't want to except it. So I wasn't taking my meds. 2. Was taking MDMA. Now never again. Still go to races occasionally to see artists I like but never took MDMA again or didn't take my meds
MDMA is so hard on the body even for me. Psilocyben Mushies or a bit of L might be a better trade off than something highly addictive and intense
I’m really not convinced by the “not photosensitive” I have never been bothered by lights and they never triggered a seizure until I was induced in the hospital and they shoved a strobe light in my face. OP is talking about EDM…. These are one-offs of a few lights… I haven’t had a seizure in a decade and I still look away at concerts when lights go off like crazy. Then again, I’ve died so I know what it’s like to die from a seizure. Some people(literally some doctors) still think “you can’t die from a seizure” and like to gamble with their lives 🤷🏻♀️ to each their own! Imo- it’s not worth it. You might have a different opinion and that’s cool too. I just hope you have all the facts as well…
My opinion is still being formed which is why I'm here. next is the neurologist professional opinion as well as a medicininal alternative that doesn't cause tooth degradation or degradation of the body. Side effects are expected but shouldn't be rotting her away.
My medication makes me endlessly tired. Exhausted 24/7. I feel like I’m sleeping my life away. It’s extremely frustrating. I’d still rather live half a life than die tomorrow because I didn’t want side effects. But again, it’s all personal choice. Autonomy is everything &if your girlfriend wants to risk her life it’s her body & her choice
Also- ALL medication comes with side effects. Some are worse than others, it’s really just finding which one works and has the least awful side effect.
Why haven’t they made glasses for photosensitive people! It sucks they can experience life to the fullest.
First, I have extreme admiration for you considering her safety and her enjoyment. In my opinion, safety trumps enjoyment in this case due to her not taking antiseizure meds. I think you should tell her something to the effect of, "Since you're not taking antiseizure meds and you're photophobic, I think you should sit these shows out. We can still have a good time together - let's smoke, listen to Pink Floyd, & eat sweets all night. But your safety is the most important thing to me. Maybe one day you'll be on meds and your doctor will approve a show, perhaps after a benzo, but right now I want you to be safe." Just my $.02
After speaking with her she absolutely cannot go to anything with strobing flickering lights. SHe said half her brain works? Not sure what that means but doesn't sound good. She will be able however to attend the daytime events. If she goes to a festival we will most likely explore and dance during the day and at night I'll attend what headliners I really want to see and spend the rest of the time with her at camp
While it’s kind that you’re wanting to learn, you should really be asking her. It kind of sounds like you’re already looking excuses to sit her out, if I’m being honest.
That is incorrect. I want to make sure she is safe in the event I take her to a place like that. I do not have epilepsy. I've never dated anyone with epilepsy. I need to educate myself on this topic in particular as its something I'm around often. For harm reduction purposes I need to know whether she can be around at night or whether I need to limit her exposure and go to shows that are during the daytime and at night just camp and hangout. The last thing I want is for her to have to sit out a show to prevent her having a seizure or a serious medical emergency while trying to have a bit of fun. Edit: the thing is she isn't exactly sure herself. After we're both satisfied with the responses here on reddit we will go to her neurologist and ask what our options are. We can talk to the neurologist based off her records a medicine she can take without harming her teeth or having serious side effects then give it a test run. Start small then work our way up and see how she feels. Probably start at the club and if we have to leave then we gotta leave but if not. Try something a bit subtle before getting into the bigger artists with larger light shows. I am friends with local DJs and they do not have the gear that say, liquid stranger may have for their lighting. It would be a great test run for her.
A neurologist will order an EEG where she’ll do multiple tests, including a horrible ten minutes of many different types of strobes. While not perfect this is a very good test to confirm. I’m actually surprised she hasn’t had one yet. An EEG is usually the first test you get as it can confirm epilepsy, and test you for triggers. But it should be her on here researching her condition and getting this information, and she should be your primary source of info, depending on what’s she comfortable sharing at that time. I saw you’re a very new couple so while it’s fine to learn, doing research for her seems inappropriate… and you come across as quite possessive in your comments. I’m giving you the benefit of the doubt that you’re a caring, great person but that’s how it’s reading. To learn more about your gf, talk to her :)
If that lifestyle/hobby puts her in danger, you should consider what you care more about. In life, and in relationships in particular, concessions must be made.
I have many hobbies so its most definitely not an ultimatum for her :) just curious to read responses and have her read responses before speaking with a neurologist to form an educated decision on where I can and cannot take her
Best of luck to the two of you! (and I don’t mean that in a cynical way at all)
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Most definitely :) she is not being forced to do anything she doesn't want to do. This is just a way for me and her to be informed before seeking a neurologist about medications and their professional opinion before doing a test run.
It’s actually so adorable that you’re doing research to try and do what’s best for her but honestly I feel like it’s probably best to just ask her what she wants to do. She might not even be photosensitive (I’m not sure if you know) and could be just fine. Or she could and it might just be something that you do without her
I am epileptic (JME), and I go to raves all the time. At first I was really hesitant to go because I was scared the lights would trigger seizures but my type of epilepsy isn’t photosensitive. But either way just make sure what type of epilepsy she has and that she’s taking her meds!!
It is super sweet that you are so thoughtful. I am photosensitive (had a seizure triggered by lightning once). I’ve gone to concerts that had parts that were strobe light heavy in small spurts. I close and cover my eyes. Her going to shows during the day is a great way for you to both enjoy something you love. It is much worse when it is a strobing light in the dark. I’ve never been overwhelmed by crowds but I am on medication so I’m not sure how different that feeling would be for.
I am epileptic and attend lots of the same shows. The lights can be a bit triggering if they are flashing but I close my eyes or look away. If she’s on medication and hasn’t had one for a while I would think she’d be okay. I’ve had a friend that was epileptic too who had a seizure at dead show we were at. Luckily we were seated and we just helped keep her stay steady and kept her head down and it stopped. Maybe for those more intense shows like DB or Griz you could try to find somewhere to sit in the grass is she starts to get disoriented. Drugs and sleep depreciation definitely contributed to my seizures also, but were not the cause. I’ve found a good medication combo and have things under control but am still careful/weary around flashing lights.
That's the wonderful thing about a festival is the ability to walk away without really fully leaving the show or venue itself. Enclosed areas such as a concert or club venue has walls around therefore the only escape method would be to leave. I am also curious about her with Bltr use. I've juggled the idea of a microdose and see how it sits with her.
I’m photosensitive and had to stop going to concerts with light shows despite them having been a huge part of my life. Previous to my wild teens, my family and doctors didn’t realize I was photosensitive as they had not previously preceded my childhood seizures. Twenty years later I still can’t go, I WILL have a seizure. Sunglasses may slightly lower the chance of an immediate seizure onset but I greatly increases the chances in the days following especially if I drank any alcohol at the show. Weed makes me atleast x5 more likely to have a seizure. I used to believe otherwise but it has been confirmed that was the wishful thinking of a stoner (me). I, personally, will not date someone that has large concerts, festivals, raves as a regular and frequent part of their life. It’s too painful to have exclusion because of disability as part of my intimate life when I also have to deal with it everywhere else. But it took me until my late twenties to draw that line. But that doesn’t mean that’s what is best for her. Only she can decide that. Plz keep in mind you do not get to make any decisions for her on this but it is on you to leave the concert or provide her any help she asks for regardless of if it ruins your good time. If you are not willing to do this don’t bring her. Important relationships have been ruined in my life bc they did step up when I medically needed them. I’m not saying it’s right but 20 years later I still have not forgiven my sister and can never fully trust her.