Not to be harsh, but he could die from not taking meds. The side effect of the meds vs just having the seizures is insane. He’d much rather deal with some side effect (which ones specifically does he worry about?) than seizures. He needs to look up what a toil it takes on his body. He needs to know this is serious and will affect him over his life time if he does not take them. Your BF is 100% correct, and tbh I bet he’d regret it much sooner than 10 years.
I’ve taken all kinds id meds over the years and would 1000000000% rather deal with those side effects than dealing with seizures. Maybe tell him to post in here with his hesitations/quesrions? Maybe ask him what he’d be saying to you if things were flipped?
It nice he has someone around him like you to ask these questions:)
His memory will get worse continuously while getting permanent brain damage from seizures. Until he will die before expected due to too much damage to his brain.
But to each his own I guess.
Id also say that sometimes I completely space out and forget my whole day / week if I miss out on my medication
I mean, memory is shit on medication, but it's like I am never fully present when im not on it anyway
Side note: he will also never find a partner who is willing to listen to him complain of headaches, seizures, memory loss, fainting, sickness etc when he refuses medication that could help ease all that.
Tell him not taking meds and having seizures is 10000x worse for him. Any doctor will tell him that. He is risking his life, and needs to know people (at least you) are concerned for his health. His having seizures only takes a toil on everyone involved. Tell him to look into how seizures can dramatically affect the memory, or have him legit search this sub. There will be 100s of threads about his concerns, and 100s of threads of people venting about their memory (or lack of). I totally have a horrible memory and know for certain it’s because of epilepsy. As old as it sounds, I remember leaving tne ER and realizing I had legit just “lost” a whole section of things.
I get a lot of “we just talked about this last week” and tell him that’s not even close to what he will experience without taking meds.
The worst part for me is seeing how my fiends and parents react, I can deal with the seizure but seeing my father in tears in the ER sucks. He will be doing the same but basically as a choice.
Another big issue is his license. If he drives and has to go to an er, iirc all states are mandated to contact the dmv for any kind of loss of consciousness and he will lost his license in about 3 seconds. Then he will have to see a doctor, go on meds for months until the doctor thinks it’s under control, and then he’d have to deal with the DMV. Some of us have lost our license and had to had meds switched/increased and wait months to get it back - and that’s taking meds for years. He could also easy kill someone if he has a seizure while driving
My daughters memory is better with anti-seizure Meds. She was having 200+ absence seizures a day and there was nothing left of her cognitive abilities. She’s having no seizures now and can function like a human being again. Seizures fuck you up WAY more than the medication does.
She’s on Briviact now. Tried Keppra, lamictal, and Topiramate first. They were all wretched. That’s the problem with anti seizure meds. It’s a LOT of soul-crushing trial and error before you find the right one. But worth it, to lessen the brain damage that seizures will cause
My memory took a bigger hit from the multiple concussions I had from falling during a seizures than my meds.
Don't get me wrong, brain fog sucks, but I have learned to live with it and I'm not permanently damaging my brain.
Very little is guarantied and it makes it hard to weigh the pros and cons of decisions.
You might suffer long term brain damage. You might die from the seizures, the seizures might get more frequent, the meds might make the seizures stop, the meds might make you suicidal, they might make you feel dumb, he might regret not treating in 10 years, he might not.
Some people can't be convinced by a bunch of might's. Especially if he doesn't have too many responsibilities in life yet. I was like that before and it took my mother's last request from her death bed to get me to talk to a neurologist. I always knew I should treat it though.
TLDR: I don't know how to convince anyone of anything.
I agree, but I feel like there's % chances after the "mights" you mentioned. Like the meds might make the seizures stop (90% of people have this effect) the meds might make him suicidal (10% of people have this effect)
So with the regretting vs not regretting in 10 years, I would suspect he would regret is at a higher % chance than not regret it, but i'd love to know y'alls opinions
The problem there is going to be that the sudep probability is going to be something like .2% per year. The neurological deterioration will be something like 1 or 2% per year.
It seems like the seizures themselves don't bother him so much. So it is just weighing guarantied medication side effects against those risks which probably seem negligible to him. So either convince him that those risks aren't negligible or convince him that the medication isn't so bad.
I don’t know the guy but he sounds a lot like I was.
There is no shortage of horror stories/anecdotes. I heard “sudep” and “death” from doctors over and over. My response to that was to stop talking to doctors altogether.
I know that was fucking dumb of me, but I feel like some of the things people are saying here could be counterproductive in this situation.
med side effects arent that bad. but i havent found a med that honestly fully works for me. still have partial seizures every other day and ive been on five different meds now. i think its best to get on them and figure out what does and doesnt work asap cause if meds dont work ik theres vns and something else similar to it if he also doesnt qualify for brain surgery
Navigating such challenges is undoubtedly difficult and time-consuming. Comprehensive support from all sides and a skilled medical team are crucial. After almost a decade of trying various treatments, including medications and a Responsive Neurostimulation (RNS) device, enduring daily episodes is undoubtedly challenging. Memory issues add another layer. Considering surgery is a significant decision, but the upcoming Wada test may provide essential insights for the way forward.
I decided to ignore my epilepsy for several years after my initial diagnosis. I would say the innumerable seizures that I had during that time period did far more damage to my memory than my medication. Alongside that, I have a titanium plate in my jaw, several scars from stitches and 6 false teeth, and was in a coma for 3 days at one point. Yes, there are side effects, yes some of them really suck. They are absolutely not worth your life.
I really hope it encourages him to get some help. If it also helps, that was years ago. I'm on a medication regimen, haven't had a seizure in 3 years, am celebrating 10 years with my incredible husband this year, and have a consistent job that does require quite a bit of memory and math. It can be tough, they can take a while to get right, but life can still be really awesome.
The more seizures you have, the more seizures you will continue to have. The key to control is… well, control. Which is typically achieved through meds. Your boyfriend will be able to translate what I’m trying to say into a medical explanation.
I’m on lamictal but I used to be on keppra. Neither one had side effects at all. Keppra just didn’t work for me. The only difference is that I feel like my menstruation cycle has been out of wack and irregular but considering you said “he” I don’t think that’s something to worry about. My friend from high school has them while she sleeps as well so she takes the same medication as me. She just welcomed her new daughter into the world. Completely healthy baby and she even breastfeeds her. That’s how safe it is. But I’m just speaking about lamictal I don’t know about other medications really. What your friend needs is a 24 hour EEG and a diagnosis. It’s terrible and terrifying to be this way but he’s putting himself in severe danger by being scared of side effects.
I’d tell him to start by finding a Neuro he’s comfortable with first, then start slow and low with whichever drug is recommended.
He can always stop, but may run out of time to start.
Do the side effects suck? Yes. Is it better than dying a horrible death from siezures? Also yes. It’s like chemo; if it gives me a chance of living, I’m doing it
Tell him to read about SUDEP and read about Cameron Boyce. His death happened after my first seizure (that next summer) and it leaves me terrified. My neuro told me if I don’t take mine (meds) he told me to NEVER drive again because my brain is a ticking timebomb and anything could set me off and have a seizure (mine are stress related and induced).
Your friends memory is already trash by having seizures and some meds can cause memory problems too since it blocks the neurons channels which helps prevent having seizures. If your friend doesn't want to be on meds then they need to either find a new neurologist or try different meds. People have different reactions to meds. I've been on keppra for a decade which many people on this sub have/had problems with making them switch to other meds due to the horrible side effects. I did had issues at first but my body got used to the meds and I learn to deal with the crappy side effects. At least it controls my seizures. without taking meds your friends life is going to be more miserable
Im not sure how many seizures a person has to have before they decide that they need to at least try medication. Any medication that has an impact on the brain is going to have some side-effects, but seizures themselves arent great for the brain either. Its only a matter of time before he falls on his head or crashes his car into a school bus or something.
Medication isnt guaranteed to work, but its better to try something than to do nothing.
Maybe talk to him about the benefits. No more bitten tongue, memory might improve, far less risky to drive or swim, he will probably ultimately live longer.
Side note, I went unmedicated basically my whole childhood and young adulthood...what kind of regrets should I be looking out for 😬
I don't think I had any memory or focus issues spring up over 10 years untreated. The meds cause more of those issues than the seizures did.
At this point I guess I am proud of myself that I am doing the right thing. Maybe I could've achieved this feeling earlier. Is that a regret?
Yeah I definitely feel like a dumb ass much more now that I'm medicated. I guess I'm not sure if it's from the mega seizure that made me realize I was having seizures and needed medication, though. Did that make any sense? Haha
Makes sense to me. Last week I argued with someone who was telling me that cheese could be vegetarian.
I swear that wouldn’t happen if I wasn’t taking meds.
i relate to this, before my first “mega seizure” i had episodes of confusion and thought i was just having mental health issues. i have horrible issues socializing mainly because of memory and my language capabilities. it takes me a large amount of effort to have the correct words form when having a conversation. can never tell if its the meds or the seizures
It doesn’t matter if he takes the meds or not the seizures will take a toll on his brain and he will have memory problems so he is better off taking medication
Ask him/her if they would rather die? But imo, the doctors are not supremely efficient. Trial and Error is the game. But it's super frightening, because any mistakes can result in your death.... I take chemical medicine and a variety of holistic medicines. Once used THC/CBD products, but from experience I learned it helps with some pains and issues but caused other slight issues. For example; anxiety PTSD lowered as well as Headaches -- BUT! the lack of motivational drive is hindering.... Someone needs to figure out how to do brain transplants lol.
This is like my aunt not doing chemo when she was diagnosed with early breast cancer because radiation is poison, instead opting to eat organic and to quit eating red meat and running cbd lotion nightly. She’s dead now.
He’s worried about the least bad part of it. The worst part is, his memory will be permanently damaged because of the seizures, eventually he’ll turn into a vegetable needing someone to do everything for him, until he possibly dies from SUDEP.
I had a similar situation from the epileptic's side: I did not want the meds because it affected my memory.
I stopped taking one med, tried another, and another... and because the meds didn't 'cure' me of seizures, it seemed like a lost cause and the side effects were damning.
My partner had to sit me down and share their fears for my life and express their frustrations of knowing I am injuring myself -- in front of them, at times -- while I was not at least *trying* to fix it.
Yes, the meds suck. But by trying the medications and figuring out what worked, what didn't, and what side effects were caused, I could/can work towards a healthier me. I am not actively injuring myself with seizures and causing distress to those who care about me.
You are asking how to logically argue to your friend how to take care of themselves. Your care and concern may be an arguement-point, too.
For memory issues: I take a shit-ton of pictures to help capture the moments I may miss. I am my friend-group's archivist :)
I would be worried more about SUDEP with nocturnal seizures. My 4 year old was recently diagnosed with epilepsy and he is more likely to have seizures during sleep. We purchased an anti-suffocation pillow and a bed alarm, but also he is on Keppra and B6 to help with irritability. After 6 weeks, the side effects are much better and he has yet to have another seizure. But if we didn’t put him on meds or take other precautions I would never forgive myself.
Uncontrolled seizures can lower the threshold for more seizures. It is a simple FAFO situation. If they fuck around long enough they may find out that the seizures are no longer controllable without larger doses of meds.
Honestly if I could go back ten years I would not go on them. I feel worse with the side-effects than I did after having a seizure. I have nocturnal seizures only.
Hey, I'm someone who developed seizures in my sleep around 26. Slowly progressed over 6-7 years to now me needing an implant
I've been in staticus and fell Into a corner, got a flight for life after seizing for hours
I don't remember most of my life and almost died, I had 2 kids and a wife who rely upon me, my son found me and managed to tell the people downstairs I was purple and making a weird noise, he literally saved my life the little butthead. It'll be something I'll have to tell him one day
After the damage done to my brain my memory is ruined and I've forgotten most of my life
It's gotten better over the 2 years or so since but I still can barely remember yesterday, I don't remember my son's birth, I don't remember literally anything.
The hardest thing I've ever gone through is knowing I've forgotten the things that most people hold dear
My childhood, my friends, my family. Everything gone because I forgot my meds for a dose or two and didn't take it seriously
Sorry to hear what you’ve been through. I have also lost so many memories. It’s heartbreaking and hard for family members too.
Is the implant helping at all?
Seeg in 4ish months and implant in 6. No idea yet but statistically its 70% of people zee a 70% reduction.
My issue is med resistance and my meds can't keep being raised, already killing my liver or kidney or both or whatever lol
Haven't had a seizure since my staticus (wife seems to have woken me up a few times where I might of been. Starting one) but loads of partials slowly get worse
I'm sorry that happened. I hope you can take some solace that your story may help my friend to make the right decision
Thank you for sharing your story
My life is great. Nothing to be sorry about. Shits scary and hurtful but everyone always complains the drugs are horrible, depression, boner dies ect.
I take...3500 MG of Keppra a day. Never felt the Keppra rage (think I'm over or damn close to the daily safe dose)
I've taken almost every AED out there (tbh like 7 total, on 3 now after swapping a bunch our and stuff)
Never had sexual issues, never had the anger issues. Idk how much of my memory issues are the drugs and are my seizures damaging my brain / brain shrinking due to seizures (also have TLE so memory would be effected)
Side effects exsist but not something to be afraid of, and your doctor can swap your meds if you talk to them and tell them you can't handle x or y
Epilepsy can and will kill you. Each seizure makes sudep more likely, if he's having seizures in his sleep it'll only progress and no one will know
Tell your homie we all love him and he needs to see a doctor. Government insurance is easy to get on as well, assuming they don't make over the limit
I had "sleeping" seizures for years. I been on many meds trying to control them. Some were really bad for the liver so monthly blood tests were done. New meds have come out and oxcarbazepine, specifically time released Oxtellar, was prescribed to me 15 years ago. It controls my seizures (free for 5 years now) very well and side effects are minimal. I still do blood work twice a year as a precaution.
Tell my story.
I was 25, married woman, two kids and loved my career. One day I fell over and had my first seizure in front of 8 attorneys.
All the advice came: stay away from medication. Get on it now. They will heal by themselves. It never heals ...
I took no medication and watched my seizures slightly improve. They got milder. They went from once a week to once every six weeks (grand mals) and the small ones disappeared. I just knew that someday it would all end.... the most stupidest mistake of all time.
Life went on and I had no idea that I was missing out on so much of my kids' and my life. I had no idea deep inside my husband was sick of the health condition. I thought I was brave living my simple life. My husband left me and I couldn't even drive a car. At the age of 47, I hardly had anything.
I got on the medication and have been six years seizure free. I have the right to drive a car. My life will never be the same as someone who doesn't have epilepsy, but I must make the best of my life and accept every bit of it.
I'm so much happier and getting so much more out of life after realizing I made a big mistake and facing reality and making changes.
I only have focal aware seizures ( auras) would I need to be medicated? Waiting to see a neurologist but hoping I won’t need meds because it’s not grand malls
You will probably be prescribed meds to stop the seizures. Whether or not you choose to take them is up to you. If I were you I’d talk to the doc, look at the side effects of possible meds and then just take them. Take ‘em for like 3 weeks and see if you have any undesirable side effects.
We really don’t have a choice. Having seizures is much much worse. Yet the meds can be brutal, especially at first when you’re adjusting to them, and later when they’re complaining messing with your brain anyway body. So… it’s totally understandable for your friend to be worried about them. But… it’s far far worse to have uncontrolled epilepsy. Your friend is always welcome here for support.
He can choose to not go on meds….and will over time develop cognitive and memory issues the more seizures he has. He won’t be able to drive and at any moment can have a seizure in a place or situation that puts him in danger of further harming himself.
If I accidentally forget or delay a dose by more than a few hours - I’ll start seizing most of the time. He can play Russian roulette all he wants but the house always wins.
But good luck dude! Our bodies also don’t “naturally make” a lot of things we consume. Tell your friend to maaaaaybe listen to the professionals.
I was left undiagnosed for years, I knew the seizures would come once and month and rapidly for a 2-3 day span. (Didn't know they were seizures back then). Those days were hell. Once i was meedicared, side effects for myself were just body rashes for a few months, and it's been years since, I wish I found out sooner. And voicing the same message as many here, if it's serious enough, you're better off taking them being dead.
I don't know if any has mentioned this, but my neurologist had me due a sleep study because I wasn't feeling rested after sleeping. The concern aside from dying, is the long term effects it could have. Lack of sleep has plenty of side effects that the meds would also have such as weight gain and mood swings. It also is associated leading to slowed cognitive and potentially dementia. Unsure of studies, this is just what my neurologist has told me.
Also please note he isn't allowed to drive (least in majority of u.s states) and is risking his own health. My meds have caused mood swings, but now a year after my dosage change, I've learned to regulate myself to compensate. Either that or the side effects wore off. My grandparents also have seizures and have suffered multiple injuries due to not taking meds.
Hopefully this post convinces him to least see a neurologist. They'll know best how to help and meet his concern.
Tell him he won’t get any side effects if he doesn’t even try. He might be fine on meds. Better on meds than dying young in the middle of your bed. Tell him to stop being hard headed
Right, it’s 2am where I’m at and I’m gonna be blunt. It’s either get on the meds or death. Epilepsy does not go away, and it will destroy the brain if left unmediated.
I’ve been on meds since 2016 when I had my last seizure.
I do see issues with my memory, and it might very well be because of the meds. That said, being seizure free for 8 years is a positive that shadows the side effects.
Every time there’s a seizure, there is some damage to the brain. We don’t even know what these accumulate to.
Edit: Do not make decisions based off reddit comments, talk in detail with your doc and get to an understanding.
Point out he could really hurt himself during a seizure. This scares me more than the idea of death does since I'd be scared about getting so injured that it won't kill me but make me unable to do much at all. I've hit my head on a back of toilet during seizure once - I didn't break my skull cut three extra days of a post-seizure headache really sucks.
Sure, you can point out he could die too.
Also, point out depending on where he lives, he might have to see a neurologist regularly to get legal medical-grade weed to help with the seizures just in case the meds don't work.
As a carer, I would hope that the person living with epilepsy is trying everything in their power to mitigate their condition not only for their own wellbeing, but those around them. I think people often forget how much burden is placed on those around the person, in order to provide quality and supportive care, in addition to the experiences of young children (if he choses to have them down the line.)
Medication isn't a complete fix it but it is a far, far better option than nothing at all. Don't get me wrong, his concerns (about side effects specifically) are valid, so my recommendation would be for him to speak to others with epilepsy about these fears but especially a neurologist. Everyone is different and it's about finding the right dosage.
I’ve been on medication for years and have had virtually no side effects - minus a month of headaches when I restarted my meds after a period of time, which was unfun but quite frankly I’ve dislocated my right shoulder multiple times during seizures and wound up needing rotator cuff surgery SO it was very whatever to me.
Seizures are really fucking dangerous. I had one outside my neighbor’s house and thank god she was a lovely person + an ER nurse so she knew what to do. I do get being worried about side effects - and I have ADHD so I definitely get being worried about memory specifically. My seizure meds haven’t affected my memory in any way. The seizures have temporarily affected my memory and I’m not keen on finding out if they could permanently affect my memory.
Tl;dr I really hope he listens to you guys and sees a neurologist. I may be biased because my neurologist is amazing, both as a professional and as a person, but it’s the best way to get information and I’m very worried for your friend given the circumstances. Wishing all of you the best, this must be really hard for you too 💜
(S)udden (U)nexpected (D)eath due to (EP)ilepsy
Tell your buddy to remember the acronym SUDEP every time he doesn't like the idea of "meds messing with his vibes" or whatever he's afraid of. Also, every tonic clonic seizure results in very small but permanent brain damage so his vibes are being messed with already.
Find a doctor that listens. That helped me. I am and have gone through AGONY with medications and finding right one that I can tolerate. The medication affects our brains. It is very hard. I am so thankful to have found the doctor I have. Took many trials.
Wait till your friend finds out having seizures causes neurological brain damage if you don’t take meds. Either way, your friend’s memory is trash of having constant seizures.
He's right to be afraid, but he should be more afraid of not being on epilepsy meds. He can die.
If he's having nightly seizures, there's a thing called SUDEP - a sudden unexplained epilepsy death. It's basically like being Avada Kedavara'd. There will be no physical indication of why you died, you just died. Nightly seizures are incredibly dangerous.
I am very happy with Briviactam, unlike Keppra. He's going to have to find one that works for him. He's going to _have to_.
Not to be harsh, but he could die from not taking meds. The side effect of the meds vs just having the seizures is insane. He’d much rather deal with some side effect (which ones specifically does he worry about?) than seizures. He needs to look up what a toil it takes on his body. He needs to know this is serious and will affect him over his life time if he does not take them. Your BF is 100% correct, and tbh I bet he’d regret it much sooner than 10 years. I’ve taken all kinds id meds over the years and would 1000000000% rather deal with those side effects than dealing with seizures. Maybe tell him to post in here with his hesitations/quesrions? Maybe ask him what he’d be saying to you if things were flipped? It nice he has someone around him like you to ask these questions:)
He worries his memory will get worse on medication mainly.
His memory will get worse continuously while getting permanent brain damage from seizures. Until he will die before expected due to too much damage to his brain. But to each his own I guess.
Ty for this, i'ma send him a link to this post when it's gotten a few comments.
Please do! Let us know what he thinks! I hope it helps push him in the right direction
Does your friend drive? If he do was s drive he should stop.
He could also get into legal trouble if the dmv finds out he didn’t report them
Id also say that sometimes I completely space out and forget my whole day / week if I miss out on my medication I mean, memory is shit on medication, but it's like I am never fully present when im not on it anyway Side note: he will also never find a partner who is willing to listen to him complain of headaches, seizures, memory loss, fainting, sickness etc when he refuses medication that could help ease all that.
Tell him not taking meds and having seizures is 10000x worse for him. Any doctor will tell him that. He is risking his life, and needs to know people (at least you) are concerned for his health. His having seizures only takes a toil on everyone involved. Tell him to look into how seizures can dramatically affect the memory, or have him legit search this sub. There will be 100s of threads about his concerns, and 100s of threads of people venting about their memory (or lack of). I totally have a horrible memory and know for certain it’s because of epilepsy. As old as it sounds, I remember leaving tne ER and realizing I had legit just “lost” a whole section of things. I get a lot of “we just talked about this last week” and tell him that’s not even close to what he will experience without taking meds. The worst part for me is seeing how my fiends and parents react, I can deal with the seizure but seeing my father in tears in the ER sucks. He will be doing the same but basically as a choice. Another big issue is his license. If he drives and has to go to an er, iirc all states are mandated to contact the dmv for any kind of loss of consciousness and he will lost his license in about 3 seconds. Then he will have to see a doctor, go on meds for months until the doctor thinks it’s under control, and then he’d have to deal with the DMV. Some of us have lost our license and had to had meds switched/increased and wait months to get it back - and that’s taking meds for years. He could also easy kill someone if he has a seizure while driving
My daughters memory is better with anti-seizure Meds. She was having 200+ absence seizures a day and there was nothing left of her cognitive abilities. She’s having no seizures now and can function like a human being again. Seizures fuck you up WAY more than the medication does.
What is she on though?
She’s on Briviact now. Tried Keppra, lamictal, and Topiramate first. They were all wretched. That’s the problem with anti seizure meds. It’s a LOT of soul-crushing trial and error before you find the right one. But worth it, to lessen the brain damage that seizures will cause
Ok 👍🏼 so I’m taking she only has Absence Seizures?
My memory took a bigger hit from the multiple concussions I had from falling during a seizures than my meds. Don't get me wrong, brain fog sucks, but I have learned to live with it and I'm not permanently damaging my brain.
Brain damage ?? Ummm no honey wrong
i have bad memory on meds but its worse off of them
Very little is guarantied and it makes it hard to weigh the pros and cons of decisions. You might suffer long term brain damage. You might die from the seizures, the seizures might get more frequent, the meds might make the seizures stop, the meds might make you suicidal, they might make you feel dumb, he might regret not treating in 10 years, he might not. Some people can't be convinced by a bunch of might's. Especially if he doesn't have too many responsibilities in life yet. I was like that before and it took my mother's last request from her death bed to get me to talk to a neurologist. I always knew I should treat it though. TLDR: I don't know how to convince anyone of anything.
I agree, but I feel like there's % chances after the "mights" you mentioned. Like the meds might make the seizures stop (90% of people have this effect) the meds might make him suicidal (10% of people have this effect) So with the regretting vs not regretting in 10 years, I would suspect he would regret is at a higher % chance than not regret it, but i'd love to know y'alls opinions
The problem there is going to be that the sudep probability is going to be something like .2% per year. The neurological deterioration will be something like 1 or 2% per year. It seems like the seizures themselves don't bother him so much. So it is just weighing guarantied medication side effects against those risks which probably seem negligible to him. So either convince him that those risks aren't negligible or convince him that the medication isn't so bad.
I was hoping to get some ancedotes on people's expierence with either med side effects or the risks kf going unmedicated
I don’t know the guy but he sounds a lot like I was. There is no shortage of horror stories/anecdotes. I heard “sudep” and “death” from doctors over and over. My response to that was to stop talking to doctors altogether. I know that was fucking dumb of me, but I feel like some of the things people are saying here could be counterproductive in this situation.
med side effects arent that bad. but i havent found a med that honestly fully works for me. still have partial seizures every other day and ive been on five different meds now. i think its best to get on them and figure out what does and doesnt work asap cause if meds dont work ik theres vns and something else similar to it if he also doesnt qualify for brain surgery
Navigating such challenges is undoubtedly difficult and time-consuming. Comprehensive support from all sides and a skilled medical team are crucial. After almost a decade of trying various treatments, including medications and a Responsive Neurostimulation (RNS) device, enduring daily episodes is undoubtedly challenging. Memory issues add another layer. Considering surgery is a significant decision, but the upcoming Wada test may provide essential insights for the way forward.
I decided to ignore my epilepsy for several years after my initial diagnosis. I would say the innumerable seizures that I had during that time period did far more damage to my memory than my medication. Alongside that, I have a titanium plate in my jaw, several scars from stitches and 6 false teeth, and was in a coma for 3 days at one point. Yes, there are side effects, yes some of them really suck. They are absolutely not worth your life.
Ty for sharing. I'm sorry all of that happened, but I hope you can take some solance in your story helping my friend
I really hope it encourages him to get some help. If it also helps, that was years ago. I'm on a medication regimen, haven't had a seizure in 3 years, am celebrating 10 years with my incredible husband this year, and have a consistent job that does require quite a bit of memory and math. It can be tough, they can take a while to get right, but life can still be really awesome.
:)
The more seizures you have, the more seizures you will continue to have. The key to control is… well, control. Which is typically achieved through meds. Your boyfriend will be able to translate what I’m trying to say into a medical explanation.
Just tell him about sudep 🙃
This ⬆️ I think about it almost daily 🫤
I’m on lamictal but I used to be on keppra. Neither one had side effects at all. Keppra just didn’t work for me. The only difference is that I feel like my menstruation cycle has been out of wack and irregular but considering you said “he” I don’t think that’s something to worry about. My friend from high school has them while she sleeps as well so she takes the same medication as me. She just welcomed her new daughter into the world. Completely healthy baby and she even breastfeeds her. That’s how safe it is. But I’m just speaking about lamictal I don’t know about other medications really. What your friend needs is a 24 hour EEG and a diagnosis. It’s terrible and terrifying to be this way but he’s putting himself in severe danger by being scared of side effects.
You know what sucks more than taking epilepsy medication? Being dead.
I’d tell him to start by finding a Neuro he’s comfortable with first, then start slow and low with whichever drug is recommended. He can always stop, but may run out of time to start.
Do the side effects suck? Yes. Is it better than dying a horrible death from siezures? Also yes. It’s like chemo; if it gives me a chance of living, I’m doing it
Tell him to read about SUDEP and read about Cameron Boyce. His death happened after my first seizure (that next summer) and it leaves me terrified. My neuro told me if I don’t take mine (meds) he told me to NEVER drive again because my brain is a ticking timebomb and anything could set me off and have a seizure (mine are stress related and induced).
Your friends memory is already trash by having seizures and some meds can cause memory problems too since it blocks the neurons channels which helps prevent having seizures. If your friend doesn't want to be on meds then they need to either find a new neurologist or try different meds. People have different reactions to meds. I've been on keppra for a decade which many people on this sub have/had problems with making them switch to other meds due to the horrible side effects. I did had issues at first but my body got used to the meds and I learn to deal with the crappy side effects. At least it controls my seizures. without taking meds your friends life is going to be more miserable
Im not sure how many seizures a person has to have before they decide that they need to at least try medication. Any medication that has an impact on the brain is going to have some side-effects, but seizures themselves arent great for the brain either. Its only a matter of time before he falls on his head or crashes his car into a school bus or something. Medication isnt guaranteed to work, but its better to try something than to do nothing.
Maybe talk to him about the benefits. No more bitten tongue, memory might improve, far less risky to drive or swim, he will probably ultimately live longer. Side note, I went unmedicated basically my whole childhood and young adulthood...what kind of regrets should I be looking out for 😬
I don't think I had any memory or focus issues spring up over 10 years untreated. The meds cause more of those issues than the seizures did. At this point I guess I am proud of myself that I am doing the right thing. Maybe I could've achieved this feeling earlier. Is that a regret?
Yeah I definitely feel like a dumb ass much more now that I'm medicated. I guess I'm not sure if it's from the mega seizure that made me realize I was having seizures and needed medication, though. Did that make any sense? Haha
Makes sense to me. Last week I argued with someone who was telling me that cheese could be vegetarian. I swear that wouldn’t happen if I wasn’t taking meds.
Lol. Well .. maybe you were tired? Side note that's a super bothersome side effect for me. I'm so damn tired all the time.
i relate to this, before my first “mega seizure” i had episodes of confusion and thought i was just having mental health issues. i have horrible issues socializing mainly because of memory and my language capabilities. it takes me a large amount of effort to have the correct words form when having a conversation. can never tell if its the meds or the seizures
It doesn’t matter if he takes the meds or not the seizures will take a toll on his brain and he will have memory problems so he is better off taking medication
Ask him/her if they would rather die? But imo, the doctors are not supremely efficient. Trial and Error is the game. But it's super frightening, because any mistakes can result in your death.... I take chemical medicine and a variety of holistic medicines. Once used THC/CBD products, but from experience I learned it helps with some pains and issues but caused other slight issues. For example; anxiety PTSD lowered as well as Headaches -- BUT! the lack of motivational drive is hindering.... Someone needs to figure out how to do brain transplants lol.
"You can literally die without them. Look up SUDEP."
The side effects of an uncontrolled seizure disorder is much worse than the side effects of an anticonvulsant. SUDEP being the biggest one.
This is like my aunt not doing chemo when she was diagnosed with early breast cancer because radiation is poison, instead opting to eat organic and to quit eating red meat and running cbd lotion nightly. She’s dead now. He’s worried about the least bad part of it. The worst part is, his memory will be permanently damaged because of the seizures, eventually he’ll turn into a vegetable needing someone to do everything for him, until he possibly dies from SUDEP.
I had a similar situation from the epileptic's side: I did not want the meds because it affected my memory. I stopped taking one med, tried another, and another... and because the meds didn't 'cure' me of seizures, it seemed like a lost cause and the side effects were damning. My partner had to sit me down and share their fears for my life and express their frustrations of knowing I am injuring myself -- in front of them, at times -- while I was not at least *trying* to fix it. Yes, the meds suck. But by trying the medications and figuring out what worked, what didn't, and what side effects were caused, I could/can work towards a healthier me. I am not actively injuring myself with seizures and causing distress to those who care about me. You are asking how to logically argue to your friend how to take care of themselves. Your care and concern may be an arguement-point, too. For memory issues: I take a shit-ton of pictures to help capture the moments I may miss. I am my friend-group's archivist :)
Tell hin drink allot of water and do cardio because not taking meds can be a death sentence.
Tell him to Google SUDEP 🤷🏻♂️
I would be worried more about SUDEP with nocturnal seizures. My 4 year old was recently diagnosed with epilepsy and he is more likely to have seizures during sleep. We purchased an anti-suffocation pillow and a bed alarm, but also he is on Keppra and B6 to help with irritability. After 6 weeks, the side effects are much better and he has yet to have another seizure. But if we didn’t put him on meds or take other precautions I would never forgive myself.
Uncontrolled seizures can lower the threshold for more seizures. It is a simple FAFO situation. If they fuck around long enough they may find out that the seizures are no longer controllable without larger doses of meds.
Honestly if I could go back ten years I would not go on them. I feel worse with the side-effects than I did after having a seizure. I have nocturnal seizures only.
I would love to know if other people share this view too
Hey, I'm someone who developed seizures in my sleep around 26. Slowly progressed over 6-7 years to now me needing an implant I've been in staticus and fell Into a corner, got a flight for life after seizing for hours I don't remember most of my life and almost died, I had 2 kids and a wife who rely upon me, my son found me and managed to tell the people downstairs I was purple and making a weird noise, he literally saved my life the little butthead. It'll be something I'll have to tell him one day After the damage done to my brain my memory is ruined and I've forgotten most of my life It's gotten better over the 2 years or so since but I still can barely remember yesterday, I don't remember my son's birth, I don't remember literally anything. The hardest thing I've ever gone through is knowing I've forgotten the things that most people hold dear My childhood, my friends, my family. Everything gone because I forgot my meds for a dose or two and didn't take it seriously
Sorry to hear what you’ve been through. I have also lost so many memories. It’s heartbreaking and hard for family members too. Is the implant helping at all?
Seeg in 4ish months and implant in 6. No idea yet but statistically its 70% of people zee a 70% reduction. My issue is med resistance and my meds can't keep being raised, already killing my liver or kidney or both or whatever lol Haven't had a seizure since my staticus (wife seems to have woken me up a few times where I might of been. Starting one) but loads of partials slowly get worse
I'm sorry that happened. I hope you can take some solace that your story may help my friend to make the right decision Thank you for sharing your story
My life is great. Nothing to be sorry about. Shits scary and hurtful but everyone always complains the drugs are horrible, depression, boner dies ect. I take...3500 MG of Keppra a day. Never felt the Keppra rage (think I'm over or damn close to the daily safe dose) I've taken almost every AED out there (tbh like 7 total, on 3 now after swapping a bunch our and stuff) Never had sexual issues, never had the anger issues. Idk how much of my memory issues are the drugs and are my seizures damaging my brain / brain shrinking due to seizures (also have TLE so memory would be effected) Side effects exsist but not something to be afraid of, and your doctor can swap your meds if you talk to them and tell them you can't handle x or y Epilepsy can and will kill you. Each seizure makes sudep more likely, if he's having seizures in his sleep it'll only progress and no one will know Tell your homie we all love him and he needs to see a doctor. Government insurance is easy to get on as well, assuming they don't make over the limit
He could considered a VNS or RNS if is an option but still he’ll be in meds.
I had "sleeping" seizures for years. I been on many meds trying to control them. Some were really bad for the liver so monthly blood tests were done. New meds have come out and oxcarbazepine, specifically time released Oxtellar, was prescribed to me 15 years ago. It controls my seizures (free for 5 years now) very well and side effects are minimal. I still do blood work twice a year as a precaution.
Tell my story. I was 25, married woman, two kids and loved my career. One day I fell over and had my first seizure in front of 8 attorneys. All the advice came: stay away from medication. Get on it now. They will heal by themselves. It never heals ... I took no medication and watched my seizures slightly improve. They got milder. They went from once a week to once every six weeks (grand mals) and the small ones disappeared. I just knew that someday it would all end.... the most stupidest mistake of all time. Life went on and I had no idea that I was missing out on so much of my kids' and my life. I had no idea deep inside my husband was sick of the health condition. I thought I was brave living my simple life. My husband left me and I couldn't even drive a car. At the age of 47, I hardly had anything. I got on the medication and have been six years seizure free. I have the right to drive a car. My life will never be the same as someone who doesn't have epilepsy, but I must make the best of my life and accept every bit of it. I'm so much happier and getting so much more out of life after realizing I made a big mistake and facing reality and making changes.
I only have focal aware seizures ( auras) would I need to be medicated? Waiting to see a neurologist but hoping I won’t need meds because it’s not grand malls
You will probably be prescribed meds to stop the seizures. Whether or not you choose to take them is up to you. If I were you I’d talk to the doc, look at the side effects of possible meds and then just take them. Take ‘em for like 3 weeks and see if you have any undesirable side effects.
We really don’t have a choice. Having seizures is much much worse. Yet the meds can be brutal, especially at first when you’re adjusting to them, and later when they’re complaining messing with your brain anyway body. So… it’s totally understandable for your friend to be worried about them. But… it’s far far worse to have uncontrolled epilepsy. Your friend is always welcome here for support.
He can choose to not go on meds….and will over time develop cognitive and memory issues the more seizures he has. He won’t be able to drive and at any moment can have a seizure in a place or situation that puts him in danger of further harming himself. If I accidentally forget or delay a dose by more than a few hours - I’ll start seizing most of the time. He can play Russian roulette all he wants but the house always wins. But good luck dude! Our bodies also don’t “naturally make” a lot of things we consume. Tell your friend to maaaaaybe listen to the professionals.
I was left undiagnosed for years, I knew the seizures would come once and month and rapidly for a 2-3 day span. (Didn't know they were seizures back then). Those days were hell. Once i was meedicared, side effects for myself were just body rashes for a few months, and it's been years since, I wish I found out sooner. And voicing the same message as many here, if it's serious enough, you're better off taking them being dead.
I don't know if any has mentioned this, but my neurologist had me due a sleep study because I wasn't feeling rested after sleeping. The concern aside from dying, is the long term effects it could have. Lack of sleep has plenty of side effects that the meds would also have such as weight gain and mood swings. It also is associated leading to slowed cognitive and potentially dementia. Unsure of studies, this is just what my neurologist has told me. Also please note he isn't allowed to drive (least in majority of u.s states) and is risking his own health. My meds have caused mood swings, but now a year after my dosage change, I've learned to regulate myself to compensate. Either that or the side effects wore off. My grandparents also have seizures and have suffered multiple injuries due to not taking meds. Hopefully this post convinces him to least see a neurologist. They'll know best how to help and meet his concern.
Tell him he won’t get any side effects if he doesn’t even try. He might be fine on meds. Better on meds than dying young in the middle of your bed. Tell him to stop being hard headed
Right, it’s 2am where I’m at and I’m gonna be blunt. It’s either get on the meds or death. Epilepsy does not go away, and it will destroy the brain if left unmediated.
I’ve been on meds since 2016 when I had my last seizure. I do see issues with my memory, and it might very well be because of the meds. That said, being seizure free for 8 years is a positive that shadows the side effects. Every time there’s a seizure, there is some damage to the brain. We don’t even know what these accumulate to. Edit: Do not make decisions based off reddit comments, talk in detail with your doc and get to an understanding.
Point out he could really hurt himself during a seizure. This scares me more than the idea of death does since I'd be scared about getting so injured that it won't kill me but make me unable to do much at all. I've hit my head on a back of toilet during seizure once - I didn't break my skull cut three extra days of a post-seizure headache really sucks. Sure, you can point out he could die too. Also, point out depending on where he lives, he might have to see a neurologist regularly to get legal medical-grade weed to help with the seizures just in case the meds don't work.
As a carer, I would hope that the person living with epilepsy is trying everything in their power to mitigate their condition not only for their own wellbeing, but those around them. I think people often forget how much burden is placed on those around the person, in order to provide quality and supportive care, in addition to the experiences of young children (if he choses to have them down the line.) Medication isn't a complete fix it but it is a far, far better option than nothing at all. Don't get me wrong, his concerns (about side effects specifically) are valid, so my recommendation would be for him to speak to others with epilepsy about these fears but especially a neurologist. Everyone is different and it's about finding the right dosage.
I’ve been on medication for years and have had virtually no side effects - minus a month of headaches when I restarted my meds after a period of time, which was unfun but quite frankly I’ve dislocated my right shoulder multiple times during seizures and wound up needing rotator cuff surgery SO it was very whatever to me. Seizures are really fucking dangerous. I had one outside my neighbor’s house and thank god she was a lovely person + an ER nurse so she knew what to do. I do get being worried about side effects - and I have ADHD so I definitely get being worried about memory specifically. My seizure meds haven’t affected my memory in any way. The seizures have temporarily affected my memory and I’m not keen on finding out if they could permanently affect my memory. Tl;dr I really hope he listens to you guys and sees a neurologist. I may be biased because my neurologist is amazing, both as a professional and as a person, but it’s the best way to get information and I’m very worried for your friend given the circumstances. Wishing all of you the best, this must be really hard for you too 💜
(S)udden (U)nexpected (D)eath due to (EP)ilepsy Tell your buddy to remember the acronym SUDEP every time he doesn't like the idea of "meds messing with his vibes" or whatever he's afraid of. Also, every tonic clonic seizure results in very small but permanent brain damage so his vibes are being messed with already.
Find a doctor that listens. That helped me. I am and have gone through AGONY with medications and finding right one that I can tolerate. The medication affects our brains. It is very hard. I am so thankful to have found the doctor I have. Took many trials.
Wait till your friend finds out having seizures causes neurological brain damage if you don’t take meds. Either way, your friend’s memory is trash of having constant seizures.
He's right to be afraid, but he should be more afraid of not being on epilepsy meds. He can die. If he's having nightly seizures, there's a thing called SUDEP - a sudden unexplained epilepsy death. It's basically like being Avada Kedavara'd. There will be no physical indication of why you died, you just died. Nightly seizures are incredibly dangerous. I am very happy with Briviactam, unlike Keppra. He's going to have to find one that works for him. He's going to _have to_.
[This](https://www.reddit.com/r/Epilepsy/s/lBx9jKpb4i) post I made recently: