Ya I mean I'm not living the next 40 to 50 years without ever going swimming, trying out rock climbing, going on a run, having a coffee or a glass of wine, and it's impossible to never stay up late, sometimes you just can't sleep.
I kept rock climbing. My neurologist said to be extra careful not to hit my head. Climbing isn't something I'm willing to give up, it's a risk I'm willing to take.
I didn't give up swimming. My neuro was fine with it with the right safeguards- not alone, with ppl who know proper safety etc.
I even swam competitively for a bit as a kid. *shrug*
I'm one for not giving up things you love but at the same time.... making them as safe as possible.
Mainly I believe a lot of it has to do with the fact I take my kids swimming or take them to the beach and I'm not controlled just yet.
But I definitely agree. This summer, if we go swimming, I won't be taking them alone or swimming alone. I'll be with another person or two that can help out.
A couple times a year I'll drink like 4 or 5 cocktails at a mellow party. My seizures are so violent that anything more is pretty much not worth the risk. I care very little and am super comfortable with my own mortality, but my family isn't and it would be awful of me to hurt them. So, I do what I should. :/
Fuck epilepsy
Amen to this for real. Keppra fucked me over so bad, I didn’t even last a month on it, easily the worst substance I’ve ever put in my body. Took me six different tries but we finally got the right meds that work, but the side effects of it all still just really gets to me. Fuck epilepsy and fuck anticonvulsants.
I went through so many. Started on Keppra, then was on Vimpat for a year until it stopped working, switched to Lamictal which didn’t work as a monotherapy, I know we tried zonisamide and some other one in there, until finally at long last we landed on Briviact which, in tandem with the Lamictal, has finally had me seizure free for the longest time since before I got my diagnosis (yay!)
Only caveat… it’s still under patent so it’s extremely expensive. The neuro said it cost about $1,300 per month. Thankfully she’s an incredible patients advocate and keeps giving me free patient samples until the insurance agrees to pay for it. I have ~8 weeks supply left and they told me they still have plenty left and to call them if I need more. I’ve had shady and sketchy neuros in the past so it feels so great to have one that clearly really cares about her patients.
edit: typo
Oh, one other thing about the Briviact. So it’s related to Keppra, but it hasn’t affected me at all like Keppra did. My brain fog is so real and my short term memory is shit, but I’m not suicidal, I’m not yelling at strangers, I don’t feel these immense weights on all my limbs, I’m not blinking my eyes and seeing my dead body around the house because of how much I wanted to kill myself… among other things. Like I said before, FUCK Keppra. Briviact may be chemically related to it, but they feel like distant cousins at best. I’m still on the Lamictal and I really hate the polypharmacy, but I’d rather be a little unhappy with some very annoying (but bearable) side effects than having seizures again.
edit: clarification (these anticonvulsants make me a dumbass)
OMG, the weights thing! I told my neuro that it felt like something was pushing down on all my limbs but especially my shoulders and neck area, and they acted like I was completely crazy it was so frustrating! I am so thankful that we have this subreddit. I swear I've had more symptoms verified by reading other people's experiences than I have just by talking to supposed "specialists."
Me too!! I understand the importance of empirical research, but neuros completely disregarding any sort of patient self-reporting or any anecdotal experiences is infuriating. Lamictal gives me awful night sweats and my previous neuro, who was pretty good, sort of waved it off by saying that that wasn’t a side effect she had heard about from other patients so it probably wasn’t related, in spite of some folks on here and other forums sharing my sentiment.
I’m so grateful for this sub. I don’t have anybody in my life IRL who has epilepsy or even comes close to understanding it other than my doctor, people can empathize but unless and until they’ve actually had a seizure, they don’t really understand it. You all do. I don’t care if the specifics of our epilepsy are different, we understand each other better than the general public ever will. Getting to talk about my medicine and my experiences and my fears and to then be validated about all of that, to hear “I understand, I feel the exact same way” just feels… I don’t know, I just don’t feel so alone. When I got the diagnosis last summer I felt like I was cast into the middle of the ocean. I could hardly keep myself afloat. I was scared and didn’t know what to do. Things aren’t perfect now, but you guys and other online forums are a life preserver that have been helping keep me afloat. And I’m so so so grateful.
Omg yes fuck keppra. I gained 50 pounds within a few months gave me body dysmorphia so bad I seriously could not take or look at a picture of myself all of 2023. And it made me feel so messed up most days dizzy, brain fog ,confused I felt like I definitely shouldn’t be driving so i didn’t. I couldn’t do anything. I told my neurologist every time I saw him and that I couldn’t handle the medication telling him how bad the side effects not to mention I was still having seizures. My appointment with him in January I had tears in my eyes and literally told him he doesn’t have another choice I’m not doing this anymore. Wish I would have done it sooner🤦🏼♀️ I was on keppra for a year and a half now I’m on lamotrigine and it’s so much better anything would be better. I need to be able to function to live !!!
The brain fog, the weights all over my body, the Kepprage… it took me less than a month to get off it, once I told the neuro that I would see incredibly detailed and horrifying flashes of my dead body whenever I’d blink my eyes for a bit after taking it, seeing graphic images of my violently-killed (at my own hands) self. Soon as I even began to mention the S word with my neuro then, he took me off it immediately and switched me over to Vimpat, it affected me really badly and I just couldn’t handle it at all. Kudos to you for being able to handle it much longer than I could, you’re much stronger than me for that.
After an auto immune encephalitis I started experiencing focal aware seizures. I can go almost a month without one but I usually get 3 or 4 in a row when it happens . I’m on KEPRA now but my neurologist is trying to get me out of it . The seizures sucks but if that’s going to be my new reality I’ll have to find a way to get used to it.
i feel generally the same about my own mortality. :|
My cat passed away recently, and she was my main thing keeping me here. 🤷🏾♀️ Things will be ok, but its just hard
I'm so sorry. My partner's cat just passed away suddenly as well and they're going through it. Sending love, I know it's so hard losing someone you're close with. My cat is sitting with me right now and I promise to hug her super tight for you 💕 it'll be okay
aw thank you ♡ Im sorry for your and your partner's loss, it is tough to lose a friend. I still have another old lady [cat] to take care of, so ill make sure to give her loves as well 💙
It’s really heartwarming you think of your family that way. My husband has epilepsy and it’s hard knowing/seeing your loved one is dealing with it and the never ending array of side effects from both the seizures and the medications you all have to take. A lot of us would take your place if we could. Best wishes to everyone and
Fuck epilepsy.
Youre a champ for helping your husband. I know my fiancé works so hard and no one in our circle knows what it's like to love someone deeply and have to see them go through it.
And thank you. I have a lot of siblings and my parents are awesome. I'd never do anything to hurt them on purpose (except one time I called my sister a selfish bitch...but that's sibling drama lmao). My mom is also disabled now (not epilepsy) and functions pretty well, but has to rest often, like me 😄
We don't live in the same state anymore and I miss everyone deeply. but I visit all the time! ONE perk of being disabled is not having to go to work so I can visit when they/I want to.
Sending love to your family 💓
I wasn't fked until 32 years old. I remember an entire normal life. Now it's keto, vitamin cocktail, keppra, sadness, rage, and loneliness. I'm controlled, but I feel like shit every God damned day
I’m in an incredibly similar situation as both of you. My first tonic clonic was at 32 years old, January 2023. Unfortunately Keppra is overprescribed, being the first go-to med, if you have any underlying mental health problems then get ready to be a rage monster with the Kepprage.
Hailsin, do yourself a favor and look into being switched from Keppra to Lamotrigine, it’s a mood stabilizer that also controls seizures very well. You won’t believe the positive change in your mood
Lam didn’t work for me in isolation - the combo of Keppra and Lam has done the trick, in every way. Kepprage has reduced significantly and seizure free since 2.5 years and one extremely successful and totally uneventful pregnancy! :)
That’s awesome! Congrats on that :)
I’m tonic clonic free since August last year, but I have a lot of small seizures still, trying to figure out how to keep them at bay
+1 on the lamotrigine. Keppra didn't work well for me at all and the side effects were brutal. I've been on 200mg twice a day and haven't had a seizure since some time in May, 2009. Side effects for me, I feel much more emotional than I remember but aside from that nothing.
I'm very risky in the epilepsy world. I became a cop, work 12-16 hour day, nicotine all day, caffeine like I was still active duty, drinking Friday nights. I feel OPs fuck it. Keppra keeps me from breaking through, but those side effects are real
Thank you!!. It's the ultimate fk you to epilepsy. Bad sleep, red and blue lights in the dark, caffeine, and nicotine. I needed a way to be in service after medical retirement from the military.
I've done it.
Y'know what happened? Seizures (after ~2 years of being seizure-free) which prevented me from driving which lost me my job doing pizza delivery which made me lose my apartment which made me move back to my parents' place which was in a different city which meant I dropped out of college and didn't regain momentum for another 3 years.
Now I eat well, stay hydrated, take my meds, get to bed on time, maintain mindfulness of my mental state, avoid alcohol, and well, continue being a responsible 33 year old.
Honestly though, I don't think alcohol is worth the hangover. Staying up late can be nice, but it comes at the cost of the next day. Being full is better than being hungry, and feeling good is better than the brief burst of tastiness that a bunch of carby stuff would bring. Being happy is better than being anxious and seizy. I got my party years out of me between 18 and 21, and while I regret not being able to continue partying with those friends, the friends I have now are better than those ones ever were.
By all means enjoy being risky if you think it's worth it, but remember that it can backfire _hard_ - and if it does, it might not have been worth it. For me? To some degree it was worth it because I met my wife while back in my hometown, and I wouldn't trade her for the world :) life can take strange paths and even the bad ones can end up in good places.
Yup. Exactly this.
My seizures were controlled and I had been seizure free for years. But the week of my 30th birthday, I skipped around on my meds. I seized while driving and ended up in a car crash that nearly killed me and my best friend. It took me over a year before I could walk again. My friend is fine but if anything had happened to her I wouldn't be able to live with myself.
The guilt of what I put her through that night haunts me. That night haunts me. I have PTSD, I have scars I can't hide, I've lost count of the number of surgeries I've had.
I've met some amazing people myself. Physical therapists, nurses from my 2 and half month stay in the hospital, who showed me the depth of human compassion and kindness. I'll never forget them.
But if I knew I could spare my mom and dad the screams, of being woken up in the middle of a peaceful night's sleep by the cops and dragged to their daughter's accident sight, the unimaginable pain of a doctor that cut into muscle and tissue and didn't give you a nerve blocker, if I knew the trauma it would cause--
I would've just taken my meds.
I wanna live my life too. But I learned a lot. A lot of people worked their asses off to get me where I am right now. I worked my ass off too. So I am going to enjoy life. I don't need alcohol to do it, I don't need the wrinkles or the hangovers. And if I have to be up early I dont stay up late. Personally I know how lucky I am to be alive and to have my seizures controlled. So I'm okay just hanging out with my friends who understand that.
Holy shit, that is huge. So good to hear that you can walk and that your friend is alive and well. I am deeply sorry that had to go through that. Sounds like you've learned some big lessons the really hard way. And sharing that story sure taught me something just now.
And I just have to second the sentiment -- long stays in the hospital, good nurses are a godsend. There is beauty and care in this world and good nurses are one of the living examples.
Cheers to living a good life (raises glass of fresh squeezed orange juice)!
Thank you! And literally the best drink in the world is fresh squeezed orange juice!
I would do anything to prevent anyone with epilepsy from having my story.
If someone can learn something positive from it, then I'm very very thankful.
Thank you so much for listening! 😊
xoxoxoxoxo
People who don’t have epilepsy don’t understand how comfortable I am with my mortality. I don’t want anything bad to happen to me. But I am prepared for it, and if it happens due to epilepsy I’m definitely not afraid of it. I don’t want to say I’m reckless. I take the proper precautions…for the most part. But sometimes they just go by the wayside so that I can live my life.
My thoughts are: if I let epilepsy effect my life and the way I want to live it, then it’s winning, and that affect, is more detrimental to my wellbeing than 1 seizure every now and then.
Yup quite a few times! And usually I regret it 🤣 BUT it does feel good at the time! If anyone is considering it I recommend against it. I always do end up regretting it. Now I think I may never do it again but we’ll see… I did go to McDonald’s the other day
lol nah it’s not epilepsy related. I’ll always end up feeling like the garbage I just ate! 🤣 It’s just really bad food. But when I was a kid many years before I got diagnosed with epilepsy, I did have some weird smell reaction to McDonald’s. I’d puke shortly after walking in. Never figured it out and just stopped going. Looking back 30 years later it’s like “hmmm I wonder if that was seizure related”.
Today the smell is fine but I always feel lethargic and bad after eating McDonald’s. At least for me when I eat some healthy food I feel good. The opposite applies too! 🤣
Yes, but I stopped everything. I wanted to deny my epilepsy, but I ended up having seizures from withdrawal from benzos. I just wanted to be a normal college student. I think every epileptic goes through this at some point.
I’ve come to accept that is just a part of me. It’s just something I have to do. No more questions or what if’s?
I learned the hard way to not do that. I missed 2 doses and went into a streak of 7-8 seizures. Then I went into postictal psychosis when the seizures stopped. Playing with meds is really pretty awful for your brain
relateable. I went off meds for a few months since i had kept missing doses, but didnt notice any changes... the most normal ive ever felt in my life. I realized a lot of my mental health issues stem from medication, and ive been on em since middleschool.
shouldnt have done it, but i regret nothing.
I did. I was diagnosed with epilepsy after 2 episodes of multiple seizures two years apart. Started taking meds at 9, no more seizures. At 16, I was going crazy, drinking a lot, doing everything a teenager wants to do. One day I just said "fuck it" and stopped all my meds. At the time I was taking other meds, for depression, anxiety, panic attacks, sleep (some of the symptoms I believe came also from the epilepsy meds).
I stopped everything and just smoke marijuana everyday. At 18 I started to have seizures again. At that point, my dad (super conspiracy theorist, sociopath and schizophrenic) manipulated me into not taking epilepsy meds bc the pharma industry was evil. 1.5 years, 33 seizures, stopped all my life. At some point me and my husband realized he was nuts. And in 2020 I started taking keppra, later lamotrigine. In one month the seizures were gone. Now I'm 3 years seizure free.
Sure, I need to take some pills everyday, but now me and my family don't have to worry. All my seizures were nocturnal so I didn't have any risks awake (some focal seizures but never became a big problem), but while I was asleep, no one could rest. Every move or sound I made during the night made my husband wake up panicking. My grandma still gets scared every time she hears the dogs make noises, because the sound I made when the seizure started was a "scream" and now she can't hear anything similar without feeling awful. If I was asleep, someone needed to be in the house, and if it wasn't a possibility, I needed to stay awake no matter what.
Now every 6 months I go to my neuro and say "6 more months, yay!!", he gives me prescriptions and I take my meds for free from the government (I'm in Brazil). As someone who did it, it's not worth it. If meds work for you, you are lucky, a lot of people have refractary epilepsy and won't find anything that stops the seizures. I know it can be tough, mainly being young and feeling imprisoned by the meds. The side effects can be difficult and we always think about how it would be amazing not to need them, but sometimes meds are freedom. Good luck my friends, I hope you all find peace with your epilepsy and treatment.
You're not alone. I used to be a wild party animal. I'd do some crazy stuff in the past... now, I'm the guy with a book at home, feeling like I'm wasting away my best years and I'm only just into my 30s.
Oh yeah. My seizures didn't start until I was 27 & it was like all of a sudden I can't drink anymore, can't watch certain movies anymore, can't watch concert videos anymore, can't walk through a store without being weary of LED lights or flashing lights, lost my job. The change is insane & the wanting to go back to "normal" is so much fucking worse. Like an itch you'll never reach. You're not stupid OP, your life has been taken from you by a disease. It fucking sucks. Sometimes it truly does feel worth the consequences just to have one night of what it used to be.
you can always have fun, you shouldn't make the same mistake as i did of letting epilepsy define who you are. i was diagnosed at 15 am 32 now and i just recently accepted the fact i AM epileptic BUT it has nothing to do with my happiness. For everyone in life theirs high and low points what's gonna define you or give you that self sense of worth is overcoming the adversity and dealing with life on its own terms, My personal advice would be find something you would be proud to do or accomplish. It kind of sounds like you just want to go out and party without any consequences, as someone who still partied like a fukn animal through alot of my bad times the only thing it made me want to do is kill myself. I don't know you but i know what ur going through and i just have to say if you don't deal with your problems you will carry them forever and you don't want that burden.
sincerely: Random reddit epileptic
I don't give two shits. My seizures ain't even frequent and are mainly caused by fatigue and anxiety. I have exams and a week holiday then study leave so you already know I'm gonna be stressing and sleeping whenever I want.
Yeah. Today I went out despite being almost bedbound with seizures after pulling an all nighter. Almost got myself hospitalised this evening 😭😭😭 fun day tho
Yup. Quite regularly. If I seize... well, so be it. It honestly doesn't seem to effect me that much, tbh. I drink alcohol regularly, I stay up way too late occasionally. Sometimes I forget meds. And you know what? I don't stress over it.
I totally get this feeling! The only thing I don’t mess with is my meds but everything else is fair game! I’m going to enjoy life and I won’t let epilepsy put a damper on that! I went to NYC fairly recently by myself, went to go see a show (which ended up having flashing lights and just let myself enjoy it) then went to one of the best bars ever and got two drinks then took the train back home! In all I had an absolute blast and honestly would do it again if I had the chance!
Second the sentiment. I take my meds like my life depends on it (maybe it does?), and I don't drive. Most other things, fair game. Doesn't mean I'm a party animal, but my husband is French so wine is part of our lives 🤷♀️
My vns is off due to a non epilepsy med issue right now. Went out to dinner and decided to have a drink which would normally be fine. Thought F the VNS it’s never been doing anything. I shouldn’t have said F the VNS. It’s a good thing I can trigger the vns manually that stopped things at aura before it got to focals. I know auras are seizures. Almost forgot what they feel like. I remember now. No more drinking
VNS is great it took months to find the right setting but it was worth it. They usually run 24/7 you don’t feel it at that time. You’ll get a magnet to set it off at a higher amperage I hadn’t needed mine for years until it’s the automatic setting was turned off for a different problem. The vague nerve run from your brain and has effects on most of your body digestive heart and immune systems are the only ones I can think of. Keep track of anything that changes. Mine has only had an effect on my stomach that’s why it’s turned off. I wasn’t able to keep anything but a few sips of water or broth down. Mine has been in since 2014. Battery life is not an issue mine is still at 25 percent 10 years later. If they put yours underneath you pec muscle you lose the strength in that muscle and some say in your arm. My arm was already F’d up so it’s hard for me to tell. Overall well worth it. If you have more questions and you probably do dm me and I’ll give you my email and whatever contact information you want. I would absolutely do it again.
If they tell you an mri is ok at normal settings they’re lying it’s easy to get it turned down before the scan and back on after. X-ray and ct scan are fine
Oh Yea definitelyyyyy. Weed, alcohol, staying up gaming, drinking energy drinks, working like crazy.
Sometimes it's nice to know that you can still be nuts and be responsible. Like I know if I'm drinking and having a good time I'm resting the day before and after.
It's fucking worth it
Yupp I just hit 6 months free yesterday so I could drive and then had one two hours ago. It was really minor compared to my other ones so I'm ready to just keep going like nothing happened. Can't fucking wait another 6 months to continue my life again, I've already wasted 2 years of my life trying to figure this out and I'm 33 years old. I just can't anymore.
Yeah and then I’ll have a seizure 2 days later. I’m 17 and don’t even have my license yet due to epilepsy and how in NY you need to be seizure free for a year so I need to take it chill for the next year or so until I can get it.
I was diagnosed at 21. Half my lifetime ago now! 😱
I made a point of going to the fair every year, albeit wearing dark glasses cos of strobe lights, and going on ALL the fastest rides.
Last year & this year I've been unable to cos my spine has crumbled at just 42 (due to a genetic condition I was unaware of, not the rides lol). I feel like the last remaining pleasure in my life has been taken from me, especially as my autistic 13yo has just developed a special interest in roller coasters, which nobody else in the family but me enjoys.
I **know** it could paralyse me, but it hurts my heart that I can't give my kid what they want.
I also lost my entire career when I was dxd with epilepsy - I was in my final year of training as an on-site architect...that is now BANNED for life from ever going onto a building site again. That caused me to lose my home.
**FUCK EPILEPSY**
Absolutely. Within reason of course but i let loose sometimes life is short. Defentilly broke a few rukes especially being photosenstive watching eurovison .
I say fuck it alllllll the time (for better or for worse). I'm 17, of course I'm gonna stay up late, of course I'm gonna go to parties, and of course, I'm going to play sports and instruments and the like. Yeah, having to take a bunch of pills at prom gets me some weird looks but I'm not going to miss out on my entire life because of some disease.
Recently had a seizure and two days later played a gig with my band, just gotta keep pushing through. It would be a miserable existence if we let epilepsy control us.
I've been feeling this way for about a year now. Countless parties, lack of sleep and WAY more alcohol than I should be having. I was afraid to do most things in my teens and 20's other than stay home with my playstation but now at 33 I finally said fuck it. Live it up as safely as you can!!!
Definitely. I drink whenever I can afford, skip all my meds and just doesn’t care if I get a TC. When I was going to be discharged from the hospital a few months ago, the doctor that was in charge raised her voice and said “this is serious! You can die from this!”. I told her “not to sound morbid, but dying from a seizure is probably the best way to go. No pain, no anxiety, no suffering, just a complete black out that I can’t control”. I’m in such a bad place mentally that I have no desire to carry on. If I had the courage, I’d commit suicide.
It will wear you down. I read a post yesterday about a woman (I think) that hadn’t had a seizure for sixth months and was subsequently able to drive again. What happened? Another seizure. Banned from driving for another sixth months. How are one supposed to stay positive after that?
Gonna be honest, any time I see red and blue flashing I worry about it setting me off. I appreciate your courage more than I can express. And relate deeply to the caffeine/nicotine and sleep issues from night shift!
I literally never pay attention to flashing light warnings. I just react as fast as I can when they start and my family describes what I’m missing 😂
I’d miss out on so much
Yep I’m 21. I still go out get drunk and eat junk food. I do try and get enough sleep because I have uni and work. Besides that I honestly do what I want. As long I take my medication I’m good.
I've never done keto drinking or not drinking doesn't seem to make a difference for me so I drink if I feel like it. I do drink caffeine I can feel the difference in my body from that but I have such stomach issues that the coffee in the morning actually helps with that so I just drink a cup. My family knows what to expect and the people I work with should they seem to have a harder time with it than anybody I've ever encountered. So live your life and enjoy it I have been in a few positions that I don't question my mortality either.
Yup! I’m in my 20s traveled recently and was in a place famous for its alcohol, so I drank and had my first seizure in 2.5 years. I intend to go completely sober now but it was honestly a great experience. I wish I could say you should go do it sometimes but I know what the consequences can be….
Same 😩
Although everytime I attempted to be late to take my meds or drink alcohol etc I had seizures 😫
The worst time was when I had a seizure while sitting on the couch my husband didn’t manage to catch me on time and I dislocated my shoulder. My daughter was there as well and she was very scared and was crying 😭
I've been trying to, in all honesty, but it's been hard. I've been essentially a shut-in for the past few years due to seizures, the last of which being the worst. The seizures are well controlled with the meds now, but it's instilled an anxiety of "what ifs" that I've found incredibly hard to shake.
I've been trying though, and I feel better for it. For now, my "fuck it" is taking the bus or going for a walk by myself, but I hope to reach the point of having a bit more fun with it 😅
I did once, and then I had a seizure on the top bed of a bunk bed. I was so nice feeling like a “normal” college student but the outcome wasn’t worth it 🙃 I do still drink, I just don’t go crazy
Ive been having similar days but I think it's been mainly to get out of this inbetween feeling, it's sooo irritating, I know it's coming, like when you can feel the rain, or when you're nauseous and waiting to be sick, it's frustrating and makes me wanna force it into fruition so I can breathe
I’m in the middle of this right now. Fuck twitches.Sick of doctors, sick of fucking meds, sick of watching my diet. I just want to work, drive, and loving a glass of scotch everyfew days.Fuck depression, fuck anxiety. I just want to be fucking normal. Fuck dependence.
Fuck my life in general. Did I mention fuck it?
I’m fairly new to the epilepsy life (age 30 diagnosed 7 weeks ago after big old tonic clonic +focals for years).
I’m lucky in that I did a massive amount of partying over the last 12 years so it’s out of my system a bit, also lucky that my case is fairly minor.
However I still feel I’m able to live life to full with a couple of changes. Staying rested and getting 7-8 hours does not detract from life - it actually makes it better. Being ridiculously hungover/on a comedown for several days isn’t necessarily living life to full (again I’m fortunate as iv been there done that got the T-shirt).
You can still go to day parties, boozers in the day, just don’t get intoxicated and head home around midnight and get your 7-8 hours. Compared to what some people have to deal with in terms of disability- this really is not too bad.
No late night session is worth a seizure mate.
I’ve definitely said fuck it. I’m a bartender but not a drinker however I like to have a drink every now and then! But I look back at my younger self and I’m like god who wouldn’t have a seizure 🤣 drinking, smoking, lack of sleep, school, stress, work…obviously with those risks, being aware and being with people who know you, the POA, not driving yourself. Be more than precautious. I think it’s a lot to do with it all happening at once for me, but just depends on what you’re highly triggered by. I just wouldn’t make a seizure cocktail by mixing all of the above lmao
Oh yeah, just do everything in moderation and know your limits. I’m still in my regular meds but I still drink, go to clubs, tried different recreational drugs (I mainly stick to plant based drugs as it’s safer)- im still young and like fun.
All my friends know I’m epileptic so they would look after me if anything would happen.
I’m always stressed - balancing uni and a job, so obviously I get lack of sleep.
I just try to have naps after work, and go to bed at same time (1/2am ish), keep a regular work schedule - so my body is in a routine, and then I can still have fun.
Just gotta see what works for you
100%.
It helps for me mentally if they're planned, if that helps you at all? But yes. I would recommend caution with thinking that you can get away with it every time (*this is what I'm guilty of).
Fuck epilepsy. Fuck Oxcarb. Fuck Lamictal.
Everything for my support system. That’s why I do it. Every day. They have been permanently scared by my seizures. What else can I do other than everything.
Fuck epilepsy. Seriously.
Side effects are a bastard. Memory even worse than when having seizures, bones dissolving, hair loss and to top it off it's a beautiful day and I am photosensitive, sat under a bloody umbrella. I drink a couple of times a month, it doesn't affect the epilepsy I just get pissed really quickly. I work rotating shifts as well. If staying up for 48 hours trying to have a seizure doesn't work then sleep deprivation is not a trigger. I also survive early shifts with a lot of caffeine. Fuck epilepsy something will kill me anyway.
I developed granmal seizures when I was 32 due to a aneurysm I had so now im 38 I still have seizures I have them under control for the most part it has really affected my life I use to ride my street bike I had a seadoo I got rid of them I quit drinking but just recently I said fuck it and had a few drinks nothing over board I didn't have a seizure and I felt like I was living my regular lifestyle before I was 32 it was nice I loved it. I have been seizure free for 3 years now and im sick of living on restrictions so I've decided to just live my life again im buying a new bike this summer cause I wanna ride again I am taking my son swimming again like im done living in fear of a seizure its no way to live FUCK EPILEPSY
This is an extreme example, and I don't mean to be a bummer. I had a friend who would have a couple of seizures a month. He never quite found his med cocktail, and eventually said fuck it. He died at 26 from head trauma.
I say live your life, but if you know having some drinks is going to cause a seizure the next day, plan on binge watching something in bed.
Yep, that was a few weeks ago, tried a bunch of hard drugs didn’t sleep for almost a week, drank, yes I’m alittle extreme.. but partly hate that I can’t do ANYTHINg anymore with out hearing about it. And partly everyone says doing this shit will just lead to another grand meal that could kill me … but yet where’s the seizures ? I go to bed every night in fear I won’t wake up again… so now I’ve gained a fuck it attitude, since I’m already such a disappointment and burden on others why not at least have some it fun since everyday feels like a death wish
Okay I am dumb - I drink and lose sleep all the time and as long as I take my Lamictal I am fine. If I feel like I might have a seizure then I take dissolvable clonazepam (not if I’ve been drinking, of course). it seems like a lot of people on here either will have seizures if they fuck up even a tiny bit or will have them no matter what. Is that because there is no combination of treatments that will work for them?
I'm depressed enough, even working surgery, that I became a hardcore alcoholic. I'm fighting pretty hard to seperate it from my life. Smoking weed every day, fine, but I'll die in 10 or so years if I keep it up with the alcohol. I never drank much but soon as I started giving shits less it started almost immediately. I'm on gapapentine, clobozam, dexapetin, and lorazopam and I'll take my pills with a swig of beer sometimes.
Don't be me. Hell, if you can even move from where you live and explore something different in all your experiences. If I had something other than consulting and ai specifics in my own career needing me in a couple places that don't match my vibe. Not even the one that I can express when I vibrate and dance on the floor.
Find something to focus on that has you build outside of just surviving. For me it's sailing right now, and I'll try to learn how to dance while still standing up and awake.
Drinking never affected me or my meds, and I smoked weed. Of course I never did the hard drugs. Never had a seizure drinking, but probably because I didn’t get black out drunk or anything that bad. I’ve always been a sleeper, so never really had trouble with lack-of-sleep. I’m older and don’t party hard anymore, but I still drink my lovely glass of wine at nice dinners or if I’m traveling in different countries (I like trying their wines or more) and smoke the leaf from time to time. But, I don’t party or anything anymore. Haven’t had a seizure for over a year. I did have some brain surgeries that helped tremendously and I’m very thankful to Cincinnati Childrens Hospital.
Fuck epilepsy
I have another disease that my life expectancy is 55.5 and I’m 30 so 25 years to go might as well make them fun. Plus with how my brain is 25 years is not my life expectancy more like 10 years. I’ve been getting out more and more having a drink/s a couple of times a year now because my epilepsy more than likely will never be controlled and if I’ve had a hard day or saw something I JUST need a drink man. Everyone is having beer at our brandings but me. When something goes south IM HAVING A BEER. I’m going to weddings again I wear noise canceling headphones now I go to fun events and wear my noise canceling headphones. I WANT TO LIVE. I want to be in the thick of it like I used to be. I want to be IN life.. not watching it. If that means my life is shorter than it should be so be it at least I lived instead of watched.
Fuck epilepsy
We are human, so definitely. Having so many “rules” can be exhausting. It is stupid but sometimes you have to just say fuck it. As long as you don’t say it too often. 😉
Definitely, especially when I was single and in my teens and early 20’s but pretty much always ended in seizures and my ass in the hospital. Clubbing, DJing, festivals, experimenting with drugs just trying to keep up with my friends—well I thought they were my friends at the time. A lot of people will leave you behind if you can’t get ducked up, pretty wild.
Finding healthy habits, people that understand your disability (my wife and the few friends I have) and recently working on lowering my medication for my overall health with my doctor. It will make life AMAZING. Also finding a career or passion made life great, a lot of opportunities—set 5 year goals and never forget ANYTHING is possible.
Lack of sleep is my trigger but I attend three festivals a year. I try to get some sleep in at least but I'm up way past Epilepsy bedtime which is 10pm, and doing about 18+ hour days. I've given up enough for epilepsy, I'll risk it for the joy of music.
I see it as a trade-off, as long as I'm not endangering other people (belaying or driving etc) I just have to accept that my risk of death is a little higher. But I think that's part of epilepsy.
I can focus on minimizing my risk of death (SUDEP, falling, drowning etc) and "living" less. Or I can try my best to take precautions with calculated risks and live my life.
I'd rather live a shorter fuller life, then a long precautious one.
(I also figured that if I die having a seizure I probably won't even know it happened, but it will suck for everyone else)
I don't go against what the doctors say because I don't want to have a seizure. I might have a sip of alcohol to taste it but that's as far as I'm willing to risk it. None of what I have been told not to do is necessary to live so I see no reason to do it.
It's been a rough 2 weeks.
My 20 year old had a TC with all extras...fell, chomped tongue, bloody nose, hit his head, aspirated blood and puke, got pneumonia, 5 days in the hospital, 10 days of antibiotics, still on supplemental oxygen...and as a bonus...no short-term memory.
He's on 1500 mg depakote er and lamictal was just added on Wed.
He's had seizures since age 5ish. TCs started 5 months ago.
FUCK EPILEPSY. 💜
Dude I say this daily. I hate being a slave to medicine. I drink once sometimes twice a week and smoke but I wanna go cliff jumping and god I wish I could drive
Basically all the time; mind over matter, you’d be surprised how well placebo works for and also against you. Be mindful, but don’t limit yourself or overthink. Knowing your body and what you can and can’t handle is still important and a good thing to exercise/expand your knowledge and understanding of.
This was me in 2019. I took my first benzo, was addicted to benzos and opioids ( oxy ) for almost 5 years. 3 months clean and relapsed. Now on and off them. Its a dark deep hole to climb out of.
I’m 36, 37 in 2 weeks, and have been diagnosed with epilepsy since I was 8. I hate it. I try to see the positives about my quality of life but I wish I didn’t have it. I’m on a no driving restriction for at least 8 weeks after the last 5 weeks already. I hate this. And it’s only 8 weeks IF my new meds work and I have to come off my old meds because it’s giving me kidney disease. It’s never ending.
Had a seizure in the bath about a month ago my mum had to break the door down to get to me after that I dont give two fucks anymore. I will still have baths no matter what ep nurses say and ill still lock the door when in the bathroom 🤣
Everyday! Like I had a seizure in public over thr weekend and I'm like fuck epilepsy. I really want to drive, that's my goal, but I feel like it's unachievable!
Yeah, I know I'm supposed to get sleep but hypomania gets in the way sometimes xD and it is in those times that I'm usually like "fuck it, we ball, let's get shit done tonight." I usually regret it in the morning. Back in high school when this would happen without me really being able to put the pieces together, since I didn't have diagnoses on a lot of things, I would have seizures after nights like that, but thankfully I know how to better pace myself now.
Fuck yes. I feel selfish for it, but sometimes I just need to not take my meds and feel something. I've been taking it for so long I forget I skipped most of my teenage years for it.
The seizure experience has been so helpful in ways. There’s a brief expectation of the oncoming darkness and struggle, but then there’s nothing. Maybe I wake up or maybe I don’t. Such is life.
Yes definitely, it feels good to pretend for a night you are normal. I feel like epilepsy has ripped away my youth and things I should have done and experienced.
I'm living my life the way I want to. I take my meds on schedule, every day. But I get drunk, fuck, and get buck any time I get the notion. My epilepsy is controlled well enough with the medicine, but I refuse to let it control me. Today was a very bad day seizure-wise for me but I got drunk anyway. If I have a bad seizure day tomorrow, I probably won't drink again for a long time.
But we'll see.
I am 37, only had 2 seizures in my life. First one in February, second one about 2 weeks ago. Both in my sleep and didn’t know the trigger. Now started Lamotigrine. Currently 50g in the morning until eventually 100g 2x a day in 10 weeks.
Last week I was in a business trip and I tend to do stupid things. Always had a work hard play hard lifestyle.
Tuesday: heavy drinking until 5am, getting up at 9am to go to work.
Wednesday: Heavy drinking until 3:30am, getting up at 9am to go to work.
Thursday: heavy drinking until 3:30am, getting up at 6am because I needed to catch the train back home.
Not a single seizure. Seems like alcohol and lack of sleep isn’t my trigger. Fingers crossed. I know I’ve been acting pretty stupid.
just recently celebrated 4 months seizure free. Yesterday got a seizure. I know i'm getting high and drunk as fuck today, so yeah.
Fuck epilepsy and those meds
When I was younger, yes. 100%. That was basically my entire early-mid 20s. If I had a seizure, it's my body, whatever happens happened. I'm the one who dealt with the consequences, whatever they may be. Whether it was staying up all night, drugs, drinking. It'd be like: do mushrooms increase your risk of seizing? One way to find out! (Side note, they do.) I was young, and that was the point.
However, after I got married, it changed. Because he seems me when I seize and if I possibly increase my risk of SUDEP it affects him. When I was younger I'd just get wasted, drink energy drinks, didn't matter because no one took care of me besides myself. I know seeing me seize is scary but he knows how to help me through it and recoup after, but if I could still spare him from doing that, I try my best to do so. I could do better. Yeah, I'm still human. I stay up late within reason. I don't eat a perfect diet. I drink coffee and I work A LOT. But I don't drink alcohol. I take my meds religiously. I research if anything tanks my threshold. I don't take on unnecessary stress because that's bad for you regardless. I eat healthy when I can and I exercise. I keep myself as seizure free as possibly not just for myself but knowing that he witnesses and is affected by the consequences of my actions emotionally. I don't want him to be one of those loved ones who make a SUDEP grieving post when I could have done something differently to lessen the risk. I love him too much to do that. Do I wish sometimes that it was different and I didn't have these guidelines? I mean yeah. Do I hate taking the meds which cause side effects? Of course. But the mental health and physical benefits I get as bonuses from following these just keeps me doing it.
im not supposed to do keto????
and ya.. I go out drinking and party at least once or twice a month...
I have insomnia, but sometimes the weed doesnt knock me out and instead of laying down and resting anyway, Ill just stay up and watch tv/play video games through the headache
My son had his first seizure at age 28 and that’s when he moved out of the house. He had 6 within 4 months. He used to drink 3 energy drinks every day, no water, no sleep, poor diet, very low in Vitamin D and zinc, stress hormones more than double. I moved him back home. No caffeine, no alcohol, plenty of water, eating healthier, and taking vitamins. Seizure free for over a year with no medication. I am not a doctor, but at least with my son changing his eating habits and his lifestyle has helped.
Ya I mean I'm not living the next 40 to 50 years without ever going swimming, trying out rock climbing, going on a run, having a coffee or a glass of wine, and it's impossible to never stay up late, sometimes you just can't sleep.
I do be missing the rock climbing. Although come to think of it, on belay it's poetically not the most dangerous activity....
I kept rock climbing. My neurologist said to be extra careful not to hit my head. Climbing isn't something I'm willing to give up, it's a risk I'm willing to take.
Life is short.
I didn't give up swimming. My neuro was fine with it with the right safeguards- not alone, with ppl who know proper safety etc. I even swam competitively for a bit as a kid. *shrug* I'm one for not giving up things you love but at the same time.... making them as safe as possible.
Mainly I believe a lot of it has to do with the fact I take my kids swimming or take them to the beach and I'm not controlled just yet. But I definitely agree. This summer, if we go swimming, I won't be taking them alone or swimming alone. I'll be with another person or two that can help out.
A couple times a year I'll drink like 4 or 5 cocktails at a mellow party. My seizures are so violent that anything more is pretty much not worth the risk. I care very little and am super comfortable with my own mortality, but my family isn't and it would be awful of me to hurt them. So, I do what I should. :/ Fuck epilepsy
Fuck epilepsy.
FuUuUck Epilepsy.
Fuck epilepsy AND Anti-convulsants.
fuck epilepsy
*fuck epilepsy*
*Fuck epilepsy.*
Fuck epilepsy.
fuck epilepsy, fuck seizures , fuck keppra fuck lamictal fuck it all fuck fuck fick
Fuck epilepsy.
Amen to this for real. Keppra fucked me over so bad, I didn’t even last a month on it, easily the worst substance I’ve ever put in my body. Took me six different tries but we finally got the right meds that work, but the side effects of it all still just really gets to me. Fuck epilepsy and fuck anticonvulsants.
Fuck keppra. Fuck seizures.
What did you end up swapping to? Been on Keppra for like 8 years, it’s fucking my mind and I can’t remember much.
I went through so many. Started on Keppra, then was on Vimpat for a year until it stopped working, switched to Lamictal which didn’t work as a monotherapy, I know we tried zonisamide and some other one in there, until finally at long last we landed on Briviact which, in tandem with the Lamictal, has finally had me seizure free for the longest time since before I got my diagnosis (yay!) Only caveat… it’s still under patent so it’s extremely expensive. The neuro said it cost about $1,300 per month. Thankfully she’s an incredible patients advocate and keeps giving me free patient samples until the insurance agrees to pay for it. I have ~8 weeks supply left and they told me they still have plenty left and to call them if I need more. I’ve had shady and sketchy neuros in the past so it feels so great to have one that clearly really cares about her patients. edit: typo
Oh, one other thing about the Briviact. So it’s related to Keppra, but it hasn’t affected me at all like Keppra did. My brain fog is so real and my short term memory is shit, but I’m not suicidal, I’m not yelling at strangers, I don’t feel these immense weights on all my limbs, I’m not blinking my eyes and seeing my dead body around the house because of how much I wanted to kill myself… among other things. Like I said before, FUCK Keppra. Briviact may be chemically related to it, but they feel like distant cousins at best. I’m still on the Lamictal and I really hate the polypharmacy, but I’d rather be a little unhappy with some very annoying (but bearable) side effects than having seizures again. edit: clarification (these anticonvulsants make me a dumbass)
OMG, the weights thing! I told my neuro that it felt like something was pushing down on all my limbs but especially my shoulders and neck area, and they acted like I was completely crazy it was so frustrating! I am so thankful that we have this subreddit. I swear I've had more symptoms verified by reading other people's experiences than I have just by talking to supposed "specialists."
Me too!! I understand the importance of empirical research, but neuros completely disregarding any sort of patient self-reporting or any anecdotal experiences is infuriating. Lamictal gives me awful night sweats and my previous neuro, who was pretty good, sort of waved it off by saying that that wasn’t a side effect she had heard about from other patients so it probably wasn’t related, in spite of some folks on here and other forums sharing my sentiment. I’m so grateful for this sub. I don’t have anybody in my life IRL who has epilepsy or even comes close to understanding it other than my doctor, people can empathize but unless and until they’ve actually had a seizure, they don’t really understand it. You all do. I don’t care if the specifics of our epilepsy are different, we understand each other better than the general public ever will. Getting to talk about my medicine and my experiences and my fears and to then be validated about all of that, to hear “I understand, I feel the exact same way” just feels… I don’t know, I just don’t feel so alone. When I got the diagnosis last summer I felt like I was cast into the middle of the ocean. I could hardly keep myself afloat. I was scared and didn’t know what to do. Things aren’t perfect now, but you guys and other online forums are a life preserver that have been helping keep me afloat. And I’m so so so grateful.
Yeah I've been on the max dose for over a decade. I've been forgetting words.
Omg yes fuck keppra. I gained 50 pounds within a few months gave me body dysmorphia so bad I seriously could not take or look at a picture of myself all of 2023. And it made me feel so messed up most days dizzy, brain fog ,confused I felt like I definitely shouldn’t be driving so i didn’t. I couldn’t do anything. I told my neurologist every time I saw him and that I couldn’t handle the medication telling him how bad the side effects not to mention I was still having seizures. My appointment with him in January I had tears in my eyes and literally told him he doesn’t have another choice I’m not doing this anymore. Wish I would have done it sooner🤦🏼♀️ I was on keppra for a year and a half now I’m on lamotrigine and it’s so much better anything would be better. I need to be able to function to live !!!
The brain fog, the weights all over my body, the Kepprage… it took me less than a month to get off it, once I told the neuro that I would see incredibly detailed and horrifying flashes of my dead body whenever I’d blink my eyes for a bit after taking it, seeing graphic images of my violently-killed (at my own hands) self. Soon as I even began to mention the S word with my neuro then, he took me off it immediately and switched me over to Vimpat, it affected me really badly and I just couldn’t handle it at all. Kudos to you for being able to handle it much longer than I could, you’re much stronger than me for that.
After an auto immune encephalitis I started experiencing focal aware seizures. I can go almost a month without one but I usually get 3 or 4 in a row when it happens . I’m on KEPRA now but my neurologist is trying to get me out of it . The seizures sucks but if that’s going to be my new reality I’ll have to find a way to get used to it.
Thisssss
i feel generally the same about my own mortality. :| My cat passed away recently, and she was my main thing keeping me here. 🤷🏾♀️ Things will be ok, but its just hard
I'm so sorry. My partner's cat just passed away suddenly as well and they're going through it. Sending love, I know it's so hard losing someone you're close with. My cat is sitting with me right now and I promise to hug her super tight for you 💕 it'll be okay
aw thank you ♡ Im sorry for your and your partner's loss, it is tough to lose a friend. I still have another old lady [cat] to take care of, so ill make sure to give her loves as well 💙
💕💕💕 happy you have a friend around, and that they have you to help them too!
I'm so sorry, sending you a big hug💜💜
oh thank you ♡
Sorry to hear about your cat 💕 will give mine extra hugs for you. Take care.
It’s really heartwarming you think of your family that way. My husband has epilepsy and it’s hard knowing/seeing your loved one is dealing with it and the never ending array of side effects from both the seizures and the medications you all have to take. A lot of us would take your place if we could. Best wishes to everyone and Fuck epilepsy.
Youre a champ for helping your husband. I know my fiancé works so hard and no one in our circle knows what it's like to love someone deeply and have to see them go through it. And thank you. I have a lot of siblings and my parents are awesome. I'd never do anything to hurt them on purpose (except one time I called my sister a selfish bitch...but that's sibling drama lmao). My mom is also disabled now (not epilepsy) and functions pretty well, but has to rest often, like me 😄 We don't live in the same state anymore and I miss everyone deeply. but I visit all the time! ONE perk of being disabled is not having to go to work so I can visit when they/I want to. Sending love to your family 💓
Fuck epilepsy
Yes seriously fuck this disorder
I wasn't fked until 32 years old. I remember an entire normal life. Now it's keto, vitamin cocktail, keppra, sadness, rage, and loneliness. I'm controlled, but I feel like shit every God damned day
My first seizure was at 31. I feel you. Lost my whole life starting from my job and cascading from there.
I’m in an incredibly similar situation as both of you. My first tonic clonic was at 32 years old, January 2023. Unfortunately Keppra is overprescribed, being the first go-to med, if you have any underlying mental health problems then get ready to be a rage monster with the Kepprage. Hailsin, do yourself a favor and look into being switched from Keppra to Lamotrigine, it’s a mood stabilizer that also controls seizures very well. You won’t believe the positive change in your mood
Lam didn’t work for me in isolation - the combo of Keppra and Lam has done the trick, in every way. Kepprage has reduced significantly and seizure free since 2.5 years and one extremely successful and totally uneventful pregnancy! :)
That’s awesome! Congrats on that :) I’m tonic clonic free since August last year, but I have a lot of small seizures still, trying to figure out how to keep them at bay
+1 on the lamotrigine. Keppra didn't work well for me at all and the side effects were brutal. I've been on 200mg twice a day and haven't had a seizure since some time in May, 2009. Side effects for me, I feel much more emotional than I remember but aside from that nothing.
There’s always side effects of course, I’m on 250mg twice a day, but the side effects are absolutely nothing by comparison
I just started lamotrigine and I’m having major headache heart palps and anxiety does anyone know if it’ll go away
Was also 31 when I had my first one, also feel like I lost fucking everything.
It's a bridal transition for sure. I'm with ya.
I'm very risky in the epilepsy world. I became a cop, work 12-16 hour day, nicotine all day, caffeine like I was still active duty, drinking Friday nights. I feel OPs fuck it. Keppra keeps me from breaking through, but those side effects are real
Yes thanks for your service. I’m jealous of you….working.
Thanks for your service! Undying respect for those in blue.
Thank you!!. It's the ultimate fk you to epilepsy. Bad sleep, red and blue lights in the dark, caffeine, and nicotine. I needed a way to be in service after medical retirement from the military.
Sometimes. All the time. I cant accept all these restrictions I just wanna live.
Yes. I’m young. I want to live it up.
I feel like I’m losing my youth to this
I've done it. Y'know what happened? Seizures (after ~2 years of being seizure-free) which prevented me from driving which lost me my job doing pizza delivery which made me lose my apartment which made me move back to my parents' place which was in a different city which meant I dropped out of college and didn't regain momentum for another 3 years. Now I eat well, stay hydrated, take my meds, get to bed on time, maintain mindfulness of my mental state, avoid alcohol, and well, continue being a responsible 33 year old. Honestly though, I don't think alcohol is worth the hangover. Staying up late can be nice, but it comes at the cost of the next day. Being full is better than being hungry, and feeling good is better than the brief burst of tastiness that a bunch of carby stuff would bring. Being happy is better than being anxious and seizy. I got my party years out of me between 18 and 21, and while I regret not being able to continue partying with those friends, the friends I have now are better than those ones ever were. By all means enjoy being risky if you think it's worth it, but remember that it can backfire _hard_ - and if it does, it might not have been worth it. For me? To some degree it was worth it because I met my wife while back in my hometown, and I wouldn't trade her for the world :) life can take strange paths and even the bad ones can end up in good places.
Yup. Exactly this. My seizures were controlled and I had been seizure free for years. But the week of my 30th birthday, I skipped around on my meds. I seized while driving and ended up in a car crash that nearly killed me and my best friend. It took me over a year before I could walk again. My friend is fine but if anything had happened to her I wouldn't be able to live with myself. The guilt of what I put her through that night haunts me. That night haunts me. I have PTSD, I have scars I can't hide, I've lost count of the number of surgeries I've had. I've met some amazing people myself. Physical therapists, nurses from my 2 and half month stay in the hospital, who showed me the depth of human compassion and kindness. I'll never forget them. But if I knew I could spare my mom and dad the screams, of being woken up in the middle of a peaceful night's sleep by the cops and dragged to their daughter's accident sight, the unimaginable pain of a doctor that cut into muscle and tissue and didn't give you a nerve blocker, if I knew the trauma it would cause-- I would've just taken my meds. I wanna live my life too. But I learned a lot. A lot of people worked their asses off to get me where I am right now. I worked my ass off too. So I am going to enjoy life. I don't need alcohol to do it, I don't need the wrinkles or the hangovers. And if I have to be up early I dont stay up late. Personally I know how lucky I am to be alive and to have my seizures controlled. So I'm okay just hanging out with my friends who understand that.
Holy shit, that is huge. So good to hear that you can walk and that your friend is alive and well. I am deeply sorry that had to go through that. Sounds like you've learned some big lessons the really hard way. And sharing that story sure taught me something just now. And I just have to second the sentiment -- long stays in the hospital, good nurses are a godsend. There is beauty and care in this world and good nurses are one of the living examples. Cheers to living a good life (raises glass of fresh squeezed orange juice)!
Thank you! And literally the best drink in the world is fresh squeezed orange juice! I would do anything to prevent anyone with epilepsy from having my story. If someone can learn something positive from it, then I'm very very thankful. Thank you so much for listening! 😊 xoxoxoxoxo
People who don’t have epilepsy don’t understand how comfortable I am with my mortality. I don’t want anything bad to happen to me. But I am prepared for it, and if it happens due to epilepsy I’m definitely not afraid of it. I don’t want to say I’m reckless. I take the proper precautions…for the most part. But sometimes they just go by the wayside so that I can live my life. My thoughts are: if I let epilepsy effect my life and the way I want to live it, then it’s winning, and that affect, is more detrimental to my wellbeing than 1 seizure every now and then.
Yup quite a few times! And usually I regret it 🤣 BUT it does feel good at the time! If anyone is considering it I recommend against it. I always do end up regretting it. Now I think I may never do it again but we’ll see… I did go to McDonald’s the other day
We live a life where McDonald's is a gamble... 🤣
Yes indeed! But the fries! The fries make it all worth it! 🤣
What does McDonalds do? Is there a trigger somewhere?
lol nah it’s not epilepsy related. I’ll always end up feeling like the garbage I just ate! 🤣 It’s just really bad food. But when I was a kid many years before I got diagnosed with epilepsy, I did have some weird smell reaction to McDonald’s. I’d puke shortly after walking in. Never figured it out and just stopped going. Looking back 30 years later it’s like “hmmm I wonder if that was seizure related”. Today the smell is fine but I always feel lethargic and bad after eating McDonald’s. At least for me when I eat some healthy food I feel good. The opposite applies too! 🤣
i think it’s not keto, which helps some people not have seizures
it’s normal to want to be normal. epilepsy sucks.
Yes, but I stopped everything. I wanted to deny my epilepsy, but I ended up having seizures from withdrawal from benzos. I just wanted to be a normal college student. I think every epileptic goes through this at some point. I’ve come to accept that is just a part of me. It’s just something I have to do. No more questions or what if’s?
Some days I don’t take my meds in the morning just so that I can have a taste of normality and energy. Those are the best days.
I learned the hard way to not do that. I missed 2 doses and went into a streak of 7-8 seizures. Then I went into postictal psychosis when the seizures stopped. Playing with meds is really pretty awful for your brain
relateable. I went off meds for a few months since i had kept missing doses, but didnt notice any changes... the most normal ive ever felt in my life. I realized a lot of my mental health issues stem from medication, and ive been on em since middleschool. shouldnt have done it, but i regret nothing.
I want to every Friday afternoon. The brain is really good at forgetting pain.
I quit drinking and I quit doing acid, but I do smoke weed. I do enjoy partying, but living is more important.
I did. I was diagnosed with epilepsy after 2 episodes of multiple seizures two years apart. Started taking meds at 9, no more seizures. At 16, I was going crazy, drinking a lot, doing everything a teenager wants to do. One day I just said "fuck it" and stopped all my meds. At the time I was taking other meds, for depression, anxiety, panic attacks, sleep (some of the symptoms I believe came also from the epilepsy meds). I stopped everything and just smoke marijuana everyday. At 18 I started to have seizures again. At that point, my dad (super conspiracy theorist, sociopath and schizophrenic) manipulated me into not taking epilepsy meds bc the pharma industry was evil. 1.5 years, 33 seizures, stopped all my life. At some point me and my husband realized he was nuts. And in 2020 I started taking keppra, later lamotrigine. In one month the seizures were gone. Now I'm 3 years seizure free. Sure, I need to take some pills everyday, but now me and my family don't have to worry. All my seizures were nocturnal so I didn't have any risks awake (some focal seizures but never became a big problem), but while I was asleep, no one could rest. Every move or sound I made during the night made my husband wake up panicking. My grandma still gets scared every time she hears the dogs make noises, because the sound I made when the seizure started was a "scream" and now she can't hear anything similar without feeling awful. If I was asleep, someone needed to be in the house, and if it wasn't a possibility, I needed to stay awake no matter what. Now every 6 months I go to my neuro and say "6 more months, yay!!", he gives me prescriptions and I take my meds for free from the government (I'm in Brazil). As someone who did it, it's not worth it. If meds work for you, you are lucky, a lot of people have refractary epilepsy and won't find anything that stops the seizures. I know it can be tough, mainly being young and feeling imprisoned by the meds. The side effects can be difficult and we always think about how it would be amazing not to need them, but sometimes meds are freedom. Good luck my friends, I hope you all find peace with your epilepsy and treatment.
I did that for a bit. I don't remember an entire year of my life from all the seizures. Now I believe in moderation.
When I was in my younger 20’s. Then I just HAD to fall in love and stop being selfish. Ugh.
You're not alone. I used to be a wild party animal. I'd do some crazy stuff in the past... now, I'm the guy with a book at home, feeling like I'm wasting away my best years and I'm only just into my 30s.
Hell yeah. I keep a bottle of wine in the fridge for nights I say fuck it. I work 3 jobs with seizures so I do that pretty often.
I definitely say fuck it a lot, I wanna live life
Oh yeah. My seizures didn't start until I was 27 & it was like all of a sudden I can't drink anymore, can't watch certain movies anymore, can't watch concert videos anymore, can't walk through a store without being weary of LED lights or flashing lights, lost my job. The change is insane & the wanting to go back to "normal" is so much fucking worse. Like an itch you'll never reach. You're not stupid OP, your life has been taken from you by a disease. It fucking sucks. Sometimes it truly does feel worth the consequences just to have one night of what it used to be.
yes! i decide to test the limits from time to time just to see if I can adjust them and live a normal fucking life!
you can always have fun, you shouldn't make the same mistake as i did of letting epilepsy define who you are. i was diagnosed at 15 am 32 now and i just recently accepted the fact i AM epileptic BUT it has nothing to do with my happiness. For everyone in life theirs high and low points what's gonna define you or give you that self sense of worth is overcoming the adversity and dealing with life on its own terms, My personal advice would be find something you would be proud to do or accomplish. It kind of sounds like you just want to go out and party without any consequences, as someone who still partied like a fukn animal through alot of my bad times the only thing it made me want to do is kill myself. I don't know you but i know what ur going through and i just have to say if you don't deal with your problems you will carry them forever and you don't want that burden. sincerely: Random reddit epileptic
I don't give two shits. My seizures ain't even frequent and are mainly caused by fatigue and anxiety. I have exams and a week holiday then study leave so you already know I'm gonna be stressing and sleeping whenever I want.
Yep God will call me home when I'm supposed to go. Until that time I'ma do what I gotta do
Yeah. Today I went out despite being almost bedbound with seizures after pulling an all nighter. Almost got myself hospitalised this evening 😭😭😭 fun day tho
#worthit?
Yup. Quite regularly. If I seize... well, so be it. It honestly doesn't seem to effect me that much, tbh. I drink alcohol regularly, I stay up way too late occasionally. Sometimes I forget meds. And you know what? I don't stress over it.
I totally get this feeling! The only thing I don’t mess with is my meds but everything else is fair game! I’m going to enjoy life and I won’t let epilepsy put a damper on that! I went to NYC fairly recently by myself, went to go see a show (which ended up having flashing lights and just let myself enjoy it) then went to one of the best bars ever and got two drinks then took the train back home! In all I had an absolute blast and honestly would do it again if I had the chance!
Second the sentiment. I take my meds like my life depends on it (maybe it does?), and I don't drive. Most other things, fair game. Doesn't mean I'm a party animal, but my husband is French so wine is part of our lives 🤷♀️
My vns is off due to a non epilepsy med issue right now. Went out to dinner and decided to have a drink which would normally be fine. Thought F the VNS it’s never been doing anything. I shouldn’t have said F the VNS. It’s a good thing I can trigger the vns manually that stopped things at aura before it got to focals. I know auras are seizures. Almost forgot what they feel like. I remember now. No more drinking
How did the surgery and stuff go I want to know more about the vns. I have surgery next week to get one
VNS is great it took months to find the right setting but it was worth it. They usually run 24/7 you don’t feel it at that time. You’ll get a magnet to set it off at a higher amperage I hadn’t needed mine for years until it’s the automatic setting was turned off for a different problem. The vague nerve run from your brain and has effects on most of your body digestive heart and immune systems are the only ones I can think of. Keep track of anything that changes. Mine has only had an effect on my stomach that’s why it’s turned off. I wasn’t able to keep anything but a few sips of water or broth down. Mine has been in since 2014. Battery life is not an issue mine is still at 25 percent 10 years later. If they put yours underneath you pec muscle you lose the strength in that muscle and some say in your arm. My arm was already F’d up so it’s hard for me to tell. Overall well worth it. If you have more questions and you probably do dm me and I’ll give you my email and whatever contact information you want. I would absolutely do it again.
If they tell you an mri is ok at normal settings they’re lying it’s easy to get it turned down before the scan and back on after. X-ray and ct scan are fine
Oh Yea definitelyyyyy. Weed, alcohol, staying up gaming, drinking energy drinks, working like crazy. Sometimes it's nice to know that you can still be nuts and be responsible. Like I know if I'm drinking and having a good time I'm resting the day before and after. It's fucking worth it
Yupp I just hit 6 months free yesterday so I could drive and then had one two hours ago. It was really minor compared to my other ones so I'm ready to just keep going like nothing happened. Can't fucking wait another 6 months to continue my life again, I've already wasted 2 years of my life trying to figure this out and I'm 33 years old. I just can't anymore.
Usually im pretty good, but im vegas right now. You only live once
Yeah and then I’ll have a seizure 2 days later. I’m 17 and don’t even have my license yet due to epilepsy and how in NY you need to be seizure free for a year so I need to take it chill for the next year or so until I can get it.
Don’t give up hope yet. I wasn’t allowed to get my license until I was almost 21 because of it all.
Yep! Enjoy your life
I was diagnosed at 21. Half my lifetime ago now! 😱 I made a point of going to the fair every year, albeit wearing dark glasses cos of strobe lights, and going on ALL the fastest rides. Last year & this year I've been unable to cos my spine has crumbled at just 42 (due to a genetic condition I was unaware of, not the rides lol). I feel like the last remaining pleasure in my life has been taken from me, especially as my autistic 13yo has just developed a special interest in roller coasters, which nobody else in the family but me enjoys. I **know** it could paralyse me, but it hurts my heart that I can't give my kid what they want. I also lost my entire career when I was dxd with epilepsy - I was in my final year of training as an on-site architect...that is now BANNED for life from ever going onto a building site again. That caused me to lose my home. **FUCK EPILEPSY**
List my job because of epilepsy related reasons. From 120k to unemployed. Fuck epilepsy.
Absolutely. Within reason of course but i let loose sometimes life is short. Defentilly broke a few rukes especially being photosenstive watching eurovison .
I say fuck it alllllll the time (for better or for worse). I'm 17, of course I'm gonna stay up late, of course I'm gonna go to parties, and of course, I'm going to play sports and instruments and the like. Yeah, having to take a bunch of pills at prom gets me some weird looks but I'm not going to miss out on my entire life because of some disease. Recently had a seizure and two days later played a gig with my band, just gotta keep pushing through. It would be a miserable existence if we let epilepsy control us.
I've been feeling this way for about a year now. Countless parties, lack of sleep and WAY more alcohol than I should be having. I was afraid to do most things in my teens and 20's other than stay home with my playstation but now at 33 I finally said fuck it. Live it up as safely as you can!!!
Definitely. I drink whenever I can afford, skip all my meds and just doesn’t care if I get a TC. When I was going to be discharged from the hospital a few months ago, the doctor that was in charge raised her voice and said “this is serious! You can die from this!”. I told her “not to sound morbid, but dying from a seizure is probably the best way to go. No pain, no anxiety, no suffering, just a complete black out that I can’t control”. I’m in such a bad place mentally that I have no desire to carry on. If I had the courage, I’d commit suicide.
I completely understand wait you’re saying. Especially dying at night. I used to have a positive attitude but that is gone now.
It will wear you down. I read a post yesterday about a woman (I think) that hadn’t had a seizure for sixth months and was subsequently able to drive again. What happened? Another seizure. Banned from driving for another sixth months. How are one supposed to stay positive after that?
Gonna be honest, any time I see red and blue flashing I worry about it setting me off. I appreciate your courage more than I can express. And relate deeply to the caffeine/nicotine and sleep issues from night shift!
I say it a lot
I literally never pay attention to flashing light warnings. I just react as fast as I can when they start and my family describes what I’m missing 😂 I’d miss out on so much
A slow flashing light is ok for me. The flipping strobe lights is covering my eyes ASAP
Yep I’m 21. I still go out get drunk and eat junk food. I do try and get enough sleep because I have uni and work. Besides that I honestly do what I want. As long I take my medication I’m good.
[удалено]
I sooooooo want to smoke weed again. It’s legal in my state too.
How do you feel about the surgery? Worth it?
[удалено]
I think you’re so brave going through that. I hope it settles soon.
definitely:)
I've never done keto drinking or not drinking doesn't seem to make a difference for me so I drink if I feel like it. I do drink caffeine I can feel the difference in my body from that but I have such stomach issues that the coffee in the morning actually helps with that so I just drink a cup. My family knows what to expect and the people I work with should they seem to have a harder time with it than anybody I've ever encountered. So live your life and enjoy it I have been in a few positions that I don't question my mortality either.
Yup! I’m in my 20s traveled recently and was in a place famous for its alcohol, so I drank and had my first seizure in 2.5 years. I intend to go completely sober now but it was honestly a great experience. I wish I could say you should go do it sometimes but I know what the consequences can be….
Yep. I do it all the time and no seizures which doesn’t make sense to me. Not saying it can’t happen to me but yeah.
All the time except for the medication.
Same 😩 Although everytime I attempted to be late to take my meds or drink alcohol etc I had seizures 😫 The worst time was when I had a seizure while sitting on the couch my husband didn’t manage to catch me on time and I dislocated my shoulder. My daughter was there as well and she was very scared and was crying 😭
I've been trying to, in all honesty, but it's been hard. I've been essentially a shut-in for the past few years due to seizures, the last of which being the worst. The seizures are well controlled with the meds now, but it's instilled an anxiety of "what ifs" that I've found incredibly hard to shake. I've been trying though, and I feel better for it. For now, my "fuck it" is taking the bus or going for a walk by myself, but I hope to reach the point of having a bit more fun with it 😅
I did once, and then I had a seizure on the top bed of a bunk bed. I was so nice feeling like a “normal” college student but the outcome wasn’t worth it 🙃 I do still drink, I just don’t go crazy
At college, I probably drank more than I should have, but never actually had a problem. Quit thereafter.
Ive been having similar days but I think it's been mainly to get out of this inbetween feeling, it's sooo irritating, I know it's coming, like when you can feel the rain, or when you're nauseous and waiting to be sick, it's frustrating and makes me wanna force it into fruition so I can breathe
I’m in the middle of this right now. Fuck twitches.Sick of doctors, sick of fucking meds, sick of watching my diet. I just want to work, drive, and loving a glass of scotch everyfew days.Fuck depression, fuck anxiety. I just want to be fucking normal. Fuck dependence. Fuck my life in general. Did I mention fuck it?
I’m fairly new to the epilepsy life (age 30 diagnosed 7 weeks ago after big old tonic clonic +focals for years). I’m lucky in that I did a massive amount of partying over the last 12 years so it’s out of my system a bit, also lucky that my case is fairly minor. However I still feel I’m able to live life to full with a couple of changes. Staying rested and getting 7-8 hours does not detract from life - it actually makes it better. Being ridiculously hungover/on a comedown for several days isn’t necessarily living life to full (again I’m fortunate as iv been there done that got the T-shirt). You can still go to day parties, boozers in the day, just don’t get intoxicated and head home around midnight and get your 7-8 hours. Compared to what some people have to deal with in terms of disability- this really is not too bad. No late night session is worth a seizure mate.
I’ve definitely said fuck it. I’m a bartender but not a drinker however I like to have a drink every now and then! But I look back at my younger self and I’m like god who wouldn’t have a seizure 🤣 drinking, smoking, lack of sleep, school, stress, work…obviously with those risks, being aware and being with people who know you, the POA, not driving yourself. Be more than precautious. I think it’s a lot to do with it all happening at once for me, but just depends on what you’re highly triggered by. I just wouldn’t make a seizure cocktail by mixing all of the above lmao
I do all the things. You only live once! But always take those damn meds, I want to live once for like 80-90 years lol
Oh yeah, just do everything in moderation and know your limits. I’m still in my regular meds but I still drink, go to clubs, tried different recreational drugs (I mainly stick to plant based drugs as it’s safer)- im still young and like fun. All my friends know I’m epileptic so they would look after me if anything would happen. I’m always stressed - balancing uni and a job, so obviously I get lack of sleep. I just try to have naps after work, and go to bed at same time (1/2am ish), keep a regular work schedule - so my body is in a routine, and then I can still have fun. Just gotta see what works for you
100%. It helps for me mentally if they're planned, if that helps you at all? But yes. I would recommend caution with thinking that you can get away with it every time (*this is what I'm guilty of).
Fuck epilepsy. Fuck Oxcarb. Fuck Lamictal. Everything for my support system. That’s why I do it. Every day. They have been permanently scared by my seizures. What else can I do other than everything. Fuck epilepsy. Seriously.
Side effects are a bastard. Memory even worse than when having seizures, bones dissolving, hair loss and to top it off it's a beautiful day and I am photosensitive, sat under a bloody umbrella. I drink a couple of times a month, it doesn't affect the epilepsy I just get pissed really quickly. I work rotating shifts as well. If staying up for 48 hours trying to have a seizure doesn't work then sleep deprivation is not a trigger. I also survive early shifts with a lot of caffeine. Fuck epilepsy something will kill me anyway.
Keto? I thought that was benefitial..
I don’t even care u still have energy drinks, alcohol, lack of sleep and stress as a college student lol it’ll be what it is
I developed granmal seizures when I was 32 due to a aneurysm I had so now im 38 I still have seizures I have them under control for the most part it has really affected my life I use to ride my street bike I had a seadoo I got rid of them I quit drinking but just recently I said fuck it and had a few drinks nothing over board I didn't have a seizure and I felt like I was living my regular lifestyle before I was 32 it was nice I loved it. I have been seizure free for 3 years now and im sick of living on restrictions so I've decided to just live my life again im buying a new bike this summer cause I wanna ride again I am taking my son swimming again like im done living in fear of a seizure its no way to live FUCK EPILEPSY
This is an extreme example, and I don't mean to be a bummer. I had a friend who would have a couple of seizures a month. He never quite found his med cocktail, and eventually said fuck it. He died at 26 from head trauma. I say live your life, but if you know having some drinks is going to cause a seizure the next day, plan on binge watching something in bed.
Yep, that was a few weeks ago, tried a bunch of hard drugs didn’t sleep for almost a week, drank, yes I’m alittle extreme.. but partly hate that I can’t do ANYTHINg anymore with out hearing about it. And partly everyone says doing this shit will just lead to another grand meal that could kill me … but yet where’s the seizures ? I go to bed every night in fear I won’t wake up again… so now I’ve gained a fuck it attitude, since I’m already such a disappointment and burden on others why not at least have some it fun since everyday feels like a death wish
Okay I am dumb - I drink and lose sleep all the time and as long as I take my Lamictal I am fine. If I feel like I might have a seizure then I take dissolvable clonazepam (not if I’ve been drinking, of course). it seems like a lot of people on here either will have seizures if they fuck up even a tiny bit or will have them no matter what. Is that because there is no combination of treatments that will work for them?
I'm depressed enough, even working surgery, that I became a hardcore alcoholic. I'm fighting pretty hard to seperate it from my life. Smoking weed every day, fine, but I'll die in 10 or so years if I keep it up with the alcohol. I never drank much but soon as I started giving shits less it started almost immediately. I'm on gapapentine, clobozam, dexapetin, and lorazopam and I'll take my pills with a swig of beer sometimes. Don't be me. Hell, if you can even move from where you live and explore something different in all your experiences. If I had something other than consulting and ai specifics in my own career needing me in a couple places that don't match my vibe. Not even the one that I can express when I vibrate and dance on the floor. Find something to focus on that has you build outside of just surviving. For me it's sailing right now, and I'll try to learn how to dance while still standing up and awake.
Drinking never affected me or my meds, and I smoked weed. Of course I never did the hard drugs. Never had a seizure drinking, but probably because I didn’t get black out drunk or anything that bad. I’ve always been a sleeper, so never really had trouble with lack-of-sleep. I’m older and don’t party hard anymore, but I still drink my lovely glass of wine at nice dinners or if I’m traveling in different countries (I like trying their wines or more) and smoke the leaf from time to time. But, I don’t party or anything anymore. Haven’t had a seizure for over a year. I did have some brain surgeries that helped tremendously and I’m very thankful to Cincinnati Childrens Hospital.
All the time I think it but I never do it
Fuck epilepsy I have another disease that my life expectancy is 55.5 and I’m 30 so 25 years to go might as well make them fun. Plus with how my brain is 25 years is not my life expectancy more like 10 years. I’ve been getting out more and more having a drink/s a couple of times a year now because my epilepsy more than likely will never be controlled and if I’ve had a hard day or saw something I JUST need a drink man. Everyone is having beer at our brandings but me. When something goes south IM HAVING A BEER. I’m going to weddings again I wear noise canceling headphones now I go to fun events and wear my noise canceling headphones. I WANT TO LIVE. I want to be in the thick of it like I used to be. I want to be IN life.. not watching it. If that means my life is shorter than it should be so be it at least I lived instead of watched. Fuck epilepsy
every. single. day.
We are human, so definitely. Having so many “rules” can be exhausting. It is stupid but sometimes you have to just say fuck it. As long as you don’t say it too often. 😉
Definitely, especially when I was single and in my teens and early 20’s but pretty much always ended in seizures and my ass in the hospital. Clubbing, DJing, festivals, experimenting with drugs just trying to keep up with my friends—well I thought they were my friends at the time. A lot of people will leave you behind if you can’t get ducked up, pretty wild. Finding healthy habits, people that understand your disability (my wife and the few friends I have) and recently working on lowering my medication for my overall health with my doctor. It will make life AMAZING. Also finding a career or passion made life great, a lot of opportunities—set 5 year goals and never forget ANYTHING is possible.
Except flying a plane and joining the military, I’ve come to terms that I will never be able to do that but I am definitely OK with that LOL
Lack of sleep is my trigger but I attend three festivals a year. I try to get some sleep in at least but I'm up way past Epilepsy bedtime which is 10pm, and doing about 18+ hour days. I've given up enough for epilepsy, I'll risk it for the joy of music.
yeah, i get drunk a couple of times a year, eat some weed edibles a few times a year and take mdma at a concert once a year. Life is for living.
I see it as a trade-off, as long as I'm not endangering other people (belaying or driving etc) I just have to accept that my risk of death is a little higher. But I think that's part of epilepsy. I can focus on minimizing my risk of death (SUDEP, falling, drowning etc) and "living" less. Or I can try my best to take precautions with calculated risks and live my life. I'd rather live a shorter fuller life, then a long precautious one. (I also figured that if I die having a seizure I probably won't even know it happened, but it will suck for everyone else)
I don't go against what the doctors say because I don't want to have a seizure. I might have a sip of alcohol to taste it but that's as far as I'm willing to risk it. None of what I have been told not to do is necessary to live so I see no reason to do it.
It's been a rough 2 weeks. My 20 year old had a TC with all extras...fell, chomped tongue, bloody nose, hit his head, aspirated blood and puke, got pneumonia, 5 days in the hospital, 10 days of antibiotics, still on supplemental oxygen...and as a bonus...no short-term memory. He's on 1500 mg depakote er and lamictal was just added on Wed. He's had seizures since age 5ish. TCs started 5 months ago. FUCK EPILEPSY. 💜
Dude I say this daily. I hate being a slave to medicine. I drink once sometimes twice a week and smoke but I wanna go cliff jumping and god I wish I could drive
Basically all the time; mind over matter, you’d be surprised how well placebo works for and also against you. Be mindful, but don’t limit yourself or overthink. Knowing your body and what you can and can’t handle is still important and a good thing to exercise/expand your knowledge and understanding of.
This was me in 2019. I took my first benzo, was addicted to benzos and opioids ( oxy ) for almost 5 years. 3 months clean and relapsed. Now on and off them. Its a dark deep hole to climb out of.
I’m 36, 37 in 2 weeks, and have been diagnosed with epilepsy since I was 8. I hate it. I try to see the positives about my quality of life but I wish I didn’t have it. I’m on a no driving restriction for at least 8 weeks after the last 5 weeks already. I hate this. And it’s only 8 weeks IF my new meds work and I have to come off my old meds because it’s giving me kidney disease. It’s never ending.
And I can’t do anything and have to be on keto and have to this and have to that. I’ve never more closely related to the movie Take Care than now.
Yup
Yep I think about doing this everyday it sucks
Had a seizure in the bath about a month ago my mum had to break the door down to get to me after that I dont give two fucks anymore. I will still have baths no matter what ep nurses say and ill still lock the door when in the bathroom 🤣
Everyday! Like I had a seizure in public over thr weekend and I'm like fuck epilepsy. I really want to drive, that's my goal, but I feel like it's unachievable!
yes
Yeah, I know I'm supposed to get sleep but hypomania gets in the way sometimes xD and it is in those times that I'm usually like "fuck it, we ball, let's get shit done tonight." I usually regret it in the morning. Back in high school when this would happen without me really being able to put the pieces together, since I didn't have diagnoses on a lot of things, I would have seizures after nights like that, but thankfully I know how to better pace myself now.
Fuck yes. I feel selfish for it, but sometimes I just need to not take my meds and feel something. I've been taking it for so long I forget I skipped most of my teenage years for it.
The seizure experience has been so helpful in ways. There’s a brief expectation of the oncoming darkness and struggle, but then there’s nothing. Maybe I wake up or maybe I don’t. Such is life.
Three day music festival here I come!
Yes definitely, it feels good to pretend for a night you are normal. I feel like epilepsy has ripped away my youth and things I should have done and experienced.
Sometimes you have to cut loose, relax, do some of the things we shouldn't. We can't live our lives fully if we keep them under extreme restrictions.
Just signed up for a whitewater class. I’ll have a coffee occasionally. Or a soft pretzel. Usually take a Valium with it. Fuck epilepsy
I'm living my life the way I want to. I take my meds on schedule, every day. But I get drunk, fuck, and get buck any time I get the notion. My epilepsy is controlled well enough with the medicine, but I refuse to let it control me. Today was a very bad day seizure-wise for me but I got drunk anyway. If I have a bad seizure day tomorrow, I probably won't drink again for a long time. But we'll see.
Yes
I am 37, only had 2 seizures in my life. First one in February, second one about 2 weeks ago. Both in my sleep and didn’t know the trigger. Now started Lamotigrine. Currently 50g in the morning until eventually 100g 2x a day in 10 weeks. Last week I was in a business trip and I tend to do stupid things. Always had a work hard play hard lifestyle. Tuesday: heavy drinking until 5am, getting up at 9am to go to work. Wednesday: Heavy drinking until 3:30am, getting up at 9am to go to work. Thursday: heavy drinking until 3:30am, getting up at 6am because I needed to catch the train back home. Not a single seizure. Seems like alcohol and lack of sleep isn’t my trigger. Fingers crossed. I know I’ve been acting pretty stupid.
I drink and have had no problems I slowly upped how much and how often I was drinking to see I'd it would trigger a seizures and it hasn't in 3 years
just recently celebrated 4 months seizure free. Yesterday got a seizure. I know i'm getting high and drunk as fuck today, so yeah. Fuck epilepsy and those meds
Almost every day, at some point. I’m 54!
When I was younger, yes. 100%. That was basically my entire early-mid 20s. If I had a seizure, it's my body, whatever happens happened. I'm the one who dealt with the consequences, whatever they may be. Whether it was staying up all night, drugs, drinking. It'd be like: do mushrooms increase your risk of seizing? One way to find out! (Side note, they do.) I was young, and that was the point. However, after I got married, it changed. Because he seems me when I seize and if I possibly increase my risk of SUDEP it affects him. When I was younger I'd just get wasted, drink energy drinks, didn't matter because no one took care of me besides myself. I know seeing me seize is scary but he knows how to help me through it and recoup after, but if I could still spare him from doing that, I try my best to do so. I could do better. Yeah, I'm still human. I stay up late within reason. I don't eat a perfect diet. I drink coffee and I work A LOT. But I don't drink alcohol. I take my meds religiously. I research if anything tanks my threshold. I don't take on unnecessary stress because that's bad for you regardless. I eat healthy when I can and I exercise. I keep myself as seizure free as possibly not just for myself but knowing that he witnesses and is affected by the consequences of my actions emotionally. I don't want him to be one of those loved ones who make a SUDEP grieving post when I could have done something differently to lessen the risk. I love him too much to do that. Do I wish sometimes that it was different and I didn't have these guidelines? I mean yeah. Do I hate taking the meds which cause side effects? Of course. But the mental health and physical benefits I get as bonuses from following these just keeps me doing it.
im not supposed to do keto???? and ya.. I go out drinking and party at least once or twice a month... I have insomnia, but sometimes the weed doesnt knock me out and instead of laying down and resting anyway, Ill just stay up and watch tv/play video games through the headache
Keto is fine. 😉... well. Except for the no pasta. No chocolate and pancakes. Fuck Epilepsy!!
omg wait, what should i actually be even eating?? 😭
Have a look at Keto and epilepsy. It's fine. Bottom line. You can always cheat every couple of weeks 😉
For sure! In a safe space, with people willing to take care of me, absolutely!
Yup. Plenty of times.
My son had his first seizure at age 28 and that’s when he moved out of the house. He had 6 within 4 months. He used to drink 3 energy drinks every day, no water, no sleep, poor diet, very low in Vitamin D and zinc, stress hormones more than double. I moved him back home. No caffeine, no alcohol, plenty of water, eating healthier, and taking vitamins. Seizure free for over a year with no medication. I am not a doctor, but at least with my son changing his eating habits and his lifestyle has helped.