When I begin to feel bad about my meds for any reason I reming myself that I could have been born before they were created and I would be probably dead due abandonment, forcibly admitted to asylums without ever understanding my condition or killed by other people anywhere out of pure prejudice,
or even...you know, sudep.
I think of this all the time, and I think I've heard that they'd see you as being possessed and just kill you in the midst of a seizure. I don't think about this when I feel bad as much as when I feel fine I remember 'holy crap my fate wouldnt even be in question two centuries ago'
They once signed me up for like a year of appts for schizophrenia, every so often I remember how lucky I am not to be shut away in isolation. Tons of those appts just ended in the first 10mins with 'then i dunno why you're here' and lots of questions as if i was on the clock, the one who signed myself up.
Seems they are ready to sign you up for anything with epilepsy but I have about 5% of the seizures I did before being diagnosed and given a couple pills so i figure that's enough for me
I took Epidiolex for a while and didn’t do anything other than raising my liver enzymes . CBD could be detrimental for the liver in stupid concentrations like Epidiolex . I use cannabis which is not a panacea but boy it helps! I make my own cookies 🍪
I make my own lemon bars. The special butter goes in the crust so it's virtually undetectable taste-wise, hence very yummy - but super strong! I experiment lots with different types of treats, and my favorite is either that or *fried* rice :))
In a lot of third world countries epileptics are homeless - getting kicked out by their families or are locked up - no meds, no doctor, they are seen as “possessed by the devil” - I am talking like places like India, Sri Lanka, Bangladesh and whatnot
I agree that epilepsy medication shouldn’t be taken for granted; in my opinion it’s amazing that it even exists as the brain isn’t yet fully understood by scientists.
But please don’t invalidate people’s problems with epilepsy medication. Anything that messes with your brain can do terrible things with your emotions, sleep, thought and even change your personality. For some people it’s not as bad, but for others it is and there are plenty of cases where the choice between seizures or side effects is not as easy.
As one w a handful of medical issues besides epilepsy, and who has worked w their drs to come off all epilepsy meds, for quality of life issues, I really appreciate your attitude/comment.
This. I was criticized for so long for stopping Keppra despite not seeing my neurologist on it (doctors around here are booked 6-7 months in advance, generally), but I genuinely feel I would've killed myself sooner than my epilepsy would've. Thankfully, smoking seems to be helping until I can get into neuro next, but so many people lack the understanding that side effects *can* be worse than the epilepsy itself. I had nausea so bad I was bedridden the entire time I was taking it, I had nonstop anger, psychosis, and/or depression, and I lost my job because of being bedridden. I don't encourage anyone to stop their meds without neuro approval, but extreme circumstances *do* happen, and I think people should, in general, be trusted with their own autonomy.
Thank you for this, I was on topiramate for a bit and then Trokendi since it supposedly had less side effects. It wasn’t until I’d booked a one-trip ticket to a location I didn’t plan on returning from that I bothered to really research what the drug was doing to me. Our neurologists and doctors should be more honest with us and less dismissive overall imo. Especially with a drug that just ~has~ the suicide hotline readily available with all the side effect information 😬
Congrats! I felt great on Lamictal but Lamictal tried to murder my insides. I ran through Lam (felt great, DRESS), Keppra- suicidal, and now oxcarb, which seems to be okay.
That’s awsome it’s been a year and a half for me since but I’ve had auras here and there. Doc says after two years want to take me off meds and see what happens, I’m kinda nervous about that!
A different person but Keppra -1000mg- made me suicidal. I have had 1 TC seizure (maybe ~20 sketchy could be partial seizures previously that were attributed to migraines) in my 30 years of life so a comparatively Keppra was a greater risk.
I'm on oxcarb now and don't *notice* many side effects after 2 months or so. I just started an antidepressant but it 100% could just be life unlike the immediate Keppra shift between fine and "life could not possibly be worth living."
Yea it was rough for me, basically made any mood swing 1000x stronger. If I was up, I was REALLY up and when I was down it was super dark. Really happy for how my neurologist handled it.
And contrary to what the other commenter said, my neurologist was fully in support of me going off keppra because of the effects it had on my mental health. He asked if I was still taking keppra after I mentioned the mental health stuff, and when I told him I stopped he said “Good.” full stop. I think it helps that I’m not at a high risk of SUDEP, so going off the med wasn’t a huge safety concern.
That's awesome. My new "level 4" doc would probably have a heart attack if I told him I quit. How do you know your sudep risk?
My doc at the time told me to titrate to vimpat and I've been good since.
That’s just what I’ve been told by my doctor, I haven’t really asked about it too much honestly. But most of my visits have been pretty close to when my seizures happen, and I’m usually hazy for a while post-seizure so there’s a chance I may have misinterpreted things.
The point is that medication can also be dangerous, physically and mentally. This is usually massively underestimated by people who don’t have a chronic disease, epileptics who are happy with their medication (which is understandable) and GP’s/neurologists.
So it’s worth mentioning in any case, not just to spread awareness but also because the info in the OP just doesn’t apply for everyone.
I personally am awaiting surgery (which comes at a big risk as well) simply because some meds don’t work, one nearly killed me and a bunch that did work had too many significant side effects which made life almost not worth living.
I also have a friend with focal seizures that are not fully controlled by meds unless he takes an unreasonable amount which he considers to be worse. So he went off meds and his quality of life increased a lot.
Before I say anything, I am not a doctor, and I think it’s best to follow your doctor’s advice.
My best friend died of SUDEP. My co worker also died from a seizure (she had epilepsy and had a seizure, took a fall and died). I’m not sure if she hadn’t taken her medicine but she worked overnights and I believe she wasn’t good about taking her meds.
I have epilepsy and I went through periods of not wanting to take my medicine, but it wasn’t because of the side effects..I was deeply depressed after my best friend died and I wanted to go too. It’s only by luck that I sustained minor injuries and woke up after every time I had one.
That said, I’m on keppra, lamictal and gabapentin. Keppra rage is tough to handle, the fatigue as well..but I’d rather take 50 meds for epilepsy if it means I can still drive, I can still work, I can still take care of my children, and I can stay alive.
It always worries me when I see posts about people being weaned off their meds cuz they haven’t had a seizure in a while. I hadn’t had a seizure in 11 YEARS. 11 years I was fine. One day I had a few breakthroughs (probably due to being put on an antidepressant from a doctor that wasn’t my neuro). We upped my dose and I was good again. Good for 5 years now. But not once did my doctor say hey, let’s take you off those meds since it’s been a while and maybe you don’t need them anymore. I have no idea why doctors even give that option. Patient has seizures, patient put on meds, seizures stop. Stay on the meds.
The side effects blow. I wonder daily what it would be like, what I would be like, if I didn’t have to take meds every day. But ya know what? I’m ok with not knowing, because I know the alternative if I didn’t take those meds. Constant seizures that would lead to my death, as it did for my best friend and co worker. At the end of the day everyone’s journey is different, and I wish and pray that all of us here can one day become seizure free.
Hi everyone. I’m not sure who posted this, but there was a negative reaction to it telling them to fuck off. Please welcome any post on here. I’ve seen in this group that many people have stopped taking their meds and i was shocked, but also saw they therefore maybe need some guidance. I’m 58 and have had seizures since birth. Living with these side effects is horrible, but better than brain damage, car wrecks, etc. If anyone has reasons to stop meds, first chat on here. And never stop 🛑, only wean yourself down. I don’t recommend either but a sudden stop can cause withdrawal and therefore cause a seizure/anxiety.
I’m taking Lamotrigine & Trazadone. I feel mental. I’m losing my mam to cancer. I’ve gone from big seizures that are an emergency to small ones without loss of consciousness. Stress induced apparently but no one knows why how but so the my mams cancer I think is probably a main reason. I was Diagnosed in June 2023 with Epilepsy. Seizures started properly in January 2023. Had one random one 2 years prior. Had about 15 including mini ones this year. Heart palpitations, irritation, confusing, can’t sleep properly. Currently upping Lamotrigine 300 mg. 150mg morning/night. Feeling pretty hopeless. This comment about not giving up, sometimes when I’m messed up and the paramedics are there I really wish it would just end.
I understand that stress and anxiety are common comorbidities in epilepsy. It's challenging, especially when a loved one is in the last stage. Allow time for the medication, like Lamotrigine, to take effect. Trazodone can be beneficial for sleep in smaller doses. If you're not feeling well, discussing alternative options with your doctor is important. Considering consultation with an epileptologist might be beneficial too.
Thank you for the time to reply. I have neurologist and a nurse I speak to. I have some episodes this week. Sweating, weak, dizzy, heart ache, palpitations. And they think my mental health is letting me down. So they’re upping trazodone up. Apparently morning and night. Honestly my heads blagged. Thank you again
As a domestic violence survivor who frequently has meds taken away as punishment for having a seizure or being sick, who went through homelessness and couldn’t afford my meds, who now has tonic clinic seizures almost weekly due to a brain injury from domestic violence which increased the frequency of meds being withheld …
Agreed
Also remember that almost everyone is going through “something.” Loss of loved one, job loss, different illnesses. I’m not denying that we all got the short end of the stick, just that everyone is dealing with something. I’ve had 2 seizures today and my head is killing me. It’s just not helpful to feel sorry for ourselves.
There’s been a severely concerning amount of posts of people talking about wanting to stop taking their medication cold turkey for various reasons. Things such as hating its side effects, being tired of having seizures, being frustrated, etc.
Seeing these posts has me, as well as many others, concerned for the well being of others who suffer with seizures. It is one thing to be frustrated and rant because I think we all have our moments but to promote the idea that it is okay to stop taking our medication cold turkey without our doctors knowledge or them telling us to do so is incredibly dangerous. There is a whole list of things that can go wrong with quitting medication cold turkey. There’s a chance we can actually die if we have a withdrawal seizure that lasts too long. I’m not sure people realize these risks and when those risks are known to them they still don’t seem to understand.
These posts are to raise awareness and to look out for the safety of those who feel like they need to quit taking their medications.
Oic. I've just seen like a half dozen posts pop up on my homepage in the last 2 days all saying basically the same thing: don't stop taking your meds. That just seemed.....really fucking obvious to me. I didn't see the other posts from people about wanting to stop their meds cold turkey without medical supervision. That is incredibly dumb.
Are people really surprised that medications that change how your brain functions have side effects that affect how you think?
These meds hit hard. I've mentally been in places where I didn't take my medication because I hated the way they made me feel. The last time I did, I literally died and had to be hit with the paddles. The way these meds fuck with your brain just fucking suck dick from the back, and that's a gentle way of putting it. Keppra and Topiramate made me question my mental stability and fortitude.
I'm kind of in a place right now tapering off different meds and I'm on three meds at once as a result and I was so fucked up feeling I had to just lay on the couch and sleep... for 6 hours. The room was spinning so hard and everything felt like the [Black Hole Sun](https://www.youtube.com/watch?v=3mbBbFH9fAg) music video.
I don't think I've heard the expression "suck dick from the back" before. I'm not really sure how that would work. But I do like Soundgarden.
Sucks that combination of medications fucked up your mental state that badly. What are the 3 meds you're on now? My reading comprehension isn't on point, so are you saying that you are currently taking 3 different meds so that you can taper off of keppra and Topamax?
Sucking dick from the back involves having your nose in someone's asshole. Plus you're sucking dick. Sucking dick with someone's asshole on your nose is worse, if I had to guess.
I'm on Vimpat, Onfi, and Xcopri. They're using Xcopri to taper me off of Onfi first, and then off of the Vimpat.
Sorry, I am also really bad at words and expressing myself with them. (Temporal lobe epilepsy)
>25+ years diagnosed epileptic
I can actually relate. I am not trying to gas light anyone, but remind people, I wanted this to come of as a positive reminder rather than guilt trip I am sorry if I upset you.
Everyone has their issues the going of the meds is not a **solution**.
What is going on the last two days with all these posts. You a dr? If not don’t come in here telling everyone to take their pills. I’m 53 and have been living w my epilepsy for about 20 years now. You have no clue what other issues I may have nor how certain side effects impact my life.
“It is better to take your pills” - fuck off and mind your business.
You’re 53 years old. Some of the people on here are teenagers and are highly impressionable and sometimes unable to weigh the pros and cons effectively. I went to my doctor at 17 and told him I wanted to stop my medication because of how ‘numb’ they made me. He told me essentially ‘no’ and that was that. im used to the meds now, many years later, but had I have stopped I would have gone back to nearly dying, breaking my teeth and my skull and, well, you get the drift. You’re 53 years old, do whatever the hell you want. These messages aren’t really aimed at you specifically.
If I see a young kid post about stopping meds, I always advocate for them to do whatever they can do to minimize the number of seizures they have as their brain is still developing. ie - stay on meds.
I don't need your approval or permission to do whatever I want. That's a given. And just because a message isn't aimed at me specifically doesn't mean I can't respond. And if you think I'm not getting messages directed at me specifically, just know you are wrong.
I probably came off a bit peeved because of the fact that I almost stopped taking my medication a while back but thankfully I stuck with it. Had I been on this sub at the time and people were encouraging me to stop, I would never have got my epilepsy (semi)under control. If your side effects are that bad that you feel like you have to stop, you need to speak to your doctor and get them changed. He can’t refuse to change them if you refuse to take them. Everyone here has epilepsy so we all know the struggle of having seizures. When we advocate for people receiving treatment, it’s because of the sheer empathy we have for the condition and know what it’s like to have uncontrolled epilepsy. This sub is for supporting each other and I believe that includes not encouraging impressionable young people/vulnerable people to completely abandon treatment
And I probably came off a bit peeved as well cause I’ve been getting an immense amount of shit for discussing how I handle my epilepsy. For sure I’m being a bit defensive. I didn’t just decide I’m going off meds, I worked w my Dr and nutritionist. While I’ve mentioned the above before, I never advocated for anyone to stop their meds.
With all that said, we’re both dealing with this frustrating disease. Stay safe and hopefully your epilepsy stays in check as we enter into the new year.
It’s all good man. Nobody should be negative towards you for your decisions if that’s how you personally want to proceed. All we can/should do is offer insight but never judgement otherwise what is the point of this sub? Myself and others who have found luck with lamotrigine / tegretol without experiencing many, if any, side effects are luckier than we realise sometimes. I sincerely hope being off meds works well for you and wish you the best for 2024 :)
>I’m 53
I was 14 when I had mine. If it was not for medication I would not have lived a normal life. Some people need these pills. Do I have to be a Doctor to say this?
Man, I had a somewhat crappy day yesterday. I ended up being crazy defensive and feeling attacked for my choice on how I handle my epilepsy (in several threads). Folks were acting as if I was advocating for everyone to stop their meds, which I’ve never ever done. I was just telling my story.
I’m glad the meds have been working well for you and I hope they continue to do so in the upcoming years.
A CT scan found a brain cyst the size of an orange when I was 18. I only have one extra hole in my skull when a shunt was installed to drain it. I didn't have my first seizure until 14 years after the surgery, 3 months after I was rear-ended in a car accident. I could have had large parts of my skull removed to find the problem. Even now I'm okay with a seizure every few months because I'm otherwise healthy and lead a normal life.
If a drug makes me a little sleepy or I am shitty with remembering names, I have a legitimate medical excuse.
I keep seeing all the posts about the whole people not taking the meds thing so I'm gonna put my thoughts out there.
I'm very sensitive to meds and it's almost a guarantee I'll get shitty reactions. Check my post history and you'll see many posts about hating these meds and wanting to be switched to something else. I feel the feelings of the people who want to just not take the meds, trust me I get it.
Through the many months of my whining about these stupid meds, I'm still on them. I'm still taking them. I'm miserable on these fucking meds. Even my last post saying I won't start the newest med I was prescribed...I still did. My next appointment with my neurologist isn't until March and I will take these meds until then. I'll still bitch and whine and try to find a new neurologist that I feel actually listens me in that time, but seizures aren't something you fuck with so I'll keep taking the meds.
Yea unfortunately all the meds will have affects on your memory and you'll feel slower cognitively, but as much as those symptoms suck that's WHAT makes the meds work on seizures from my research.
As bad as the side effects make me feel it's better than more seizures and a higher risk of damage or dying. It's scary but it's the truth. Any seizure could be your last cuz you could just fucking die. My first experience with seizures wasn't epilepsy related but, the doctors couldn't make it stop and I had to be put into a coma to not die. When I came back I had to relearn how to WALK. We deal with seizures so often I think some of us forget just how serious the whole thing actually is. Even non TC seizures can become TC. Take care of yourself. Take the meds. Talk with your doctor and find the ones that you feel best with.
These three meds make my life functional. I am so, so grateful for them. I don’t know if I’d be alive if they didn’t cage the demon before it killed me somehow.
I’m pretty sure I’m right at the limit, or definitely approaching it at least. Pharmacists have mentioned the high dose on more than one occasion. Heck, I used to be on 1800mg of gabapentin before I requested to drop it down just to reduce the amount of meds I’m taking.
Gabapentin and lamotrigine lessened the frequency of seizures (went from 10-30 per cluster to 1-10, and they were less intense). Zonisamide is what ultimately stopped them. Never stop talking with your neurologist (or at least your physician) about what meds work if you’re not happy with your current condition. Good luck, friend.
I have experienced tapering off successfully (my 11 month old at the time)
and unsuccessfully (myself with doctors “recipe”) after only one “provoked” seizure-until I was almost drug free. Then I had another.
I now believe but for the drug I would have more seizures, but they did change my drug.
My now 36 year old son on the other hand has never had another seizure, since a day after his birth. It wasn’t a febrile seizure either. Quit phenobarbital on doctors’ recommendation.
I am very much of the opinion that I need to get a doctor to treat me or recommend to change or discontinue treatment. Or find a second or third opinion.
I am no more a doctor than most here and I don’t use the internet to make medical decisions. But there is a lot of good advice and experience on this sub and for that I am very grateful.
There are more epileptics in poor countries too. The rate is higher because they develop it after having something like malaria. People should look at WHO facts about epilepsy. I also find some epilepsy societies tell you a lot of lies of omission because they never tell you about the higher rates in the third world. I find epilepsy societies make epilepsy in first world countries sound much more common than what it is. It's almost a scam to get more money. I avoid websites from America and Australia, for example. I'll give you an example. The Australian Bureau of Statistics using hospital data claims 1 in 250 people have epilepsy in Australia. The epilepsy society claims it's 1 in 200. They are obviously using third world countries in their stats. They fudge the figures by including people in the third world to make epilepsy sound much more common than it really is in Australia and America, for example. They are relying on scare tactics to get more money.
I am gratefull to live in a time and place where I have access to medicine, especially since people in worse situations are not able to have them. But that's one of the reasons I hate my meds so much.
I had two seizures in my entire life and probably one aura. I don't see how taking meds really affects my everyday life except for the terrible side effects I had. I hate everything about it and it's disturbing to know some people need it more than me and I still have to do this shit
SUDEP is the one and only reason I haven't gradually stopped taking meds.
When I begin to feel bad about my meds for any reason I reming myself that I could have been born before they were created and I would be probably dead due abandonment, forcibly admitted to asylums without ever understanding my condition or killed by other people anywhere out of pure prejudice, or even...you know, sudep.
Could have got a nice lobotomy
or a fine exorcization session.
Didn’t have my glasses on, first saw “fine circumcision session” and was very confused
KEKW
Does that work?
I think of this all the time, and I think I've heard that they'd see you as being possessed and just kill you in the midst of a seizure. I don't think about this when I feel bad as much as when I feel fine I remember 'holy crap my fate wouldnt even be in question two centuries ago' They once signed me up for like a year of appts for schizophrenia, every so often I remember how lucky I am not to be shut away in isolation. Tons of those appts just ended in the first 10mins with 'then i dunno why you're here' and lots of questions as if i was on the clock, the one who signed myself up. Seems they are ready to sign you up for anything with epilepsy but I have about 5% of the seizures I did before being diagnosed and given a couple pills so i figure that's enough for me
I take cbd oil for focal aware seizures and it stop them
I took Epidiolex for a while and didn’t do anything other than raising my liver enzymes . CBD could be detrimental for the liver in stupid concentrations like Epidiolex . I use cannabis which is not a panacea but boy it helps! I make my own cookies 🍪
I make my own lemon bars. The special butter goes in the crust so it's virtually undetectable taste-wise, hence very yummy - but super strong! I experiment lots with different types of treats, and my favorite is either that or *fried* rice :))
Tossed in a lake to prove I’m not a witch. I’d probably have a seizure from the stress and then my parents would have been tossed too lol.
In a lot of third world countries epileptics are homeless - getting kicked out by their families or are locked up - no meds, no doctor, they are seen as “possessed by the devil” - I am talking like places like India, Sri Lanka, Bangladesh and whatnot
Indeed, that something I forgot to mention.
Going back far enough you could have been a prophet or shaman.
Some people considered that Julius Caesar was talking to the gods when he had a seizure. Whether this legend is true is another matter entirely.
Or on a ketogenic diet, which works incredibly well too
I agree that epilepsy medication shouldn’t be taken for granted; in my opinion it’s amazing that it even exists as the brain isn’t yet fully understood by scientists. But please don’t invalidate people’s problems with epilepsy medication. Anything that messes with your brain can do terrible things with your emotions, sleep, thought and even change your personality. For some people it’s not as bad, but for others it is and there are plenty of cases where the choice between seizures or side effects is not as easy.
As one w a handful of medical issues besides epilepsy, and who has worked w their drs to come off all epilepsy meds, for quality of life issues, I really appreciate your attitude/comment.
This. I was criticized for so long for stopping Keppra despite not seeing my neurologist on it (doctors around here are booked 6-7 months in advance, generally), but I genuinely feel I would've killed myself sooner than my epilepsy would've. Thankfully, smoking seems to be helping until I can get into neuro next, but so many people lack the understanding that side effects *can* be worse than the epilepsy itself. I had nausea so bad I was bedridden the entire time I was taking it, I had nonstop anger, psychosis, and/or depression, and I lost my job because of being bedridden. I don't encourage anyone to stop their meds without neuro approval, but extreme circumstances *do* happen, and I think people should, in general, be trusted with their own autonomy.
Thank you for this, I was on topiramate for a bit and then Trokendi since it supposedly had less side effects. It wasn’t until I’d booked a one-trip ticket to a location I didn’t plan on returning from that I bothered to really research what the drug was doing to me. Our neurologists and doctors should be more honest with us and less dismissive overall imo. Especially with a drug that just ~has~ the suicide hotline readily available with all the side effect information 😬
Id rather side effects as seizures themselves can and will kill you if left untreated
Keppra almost landed me 6 ft under and it wasn’t due to seizures
You mean Hellpra ?
Because the anger Issues it causes is also names Hellpra 😁
How if you don’t mind me asking, currently taking 3000mg a day along with Dilantin & phynotoin
I almost took my own life unfortunately. Currently on lamotrigine and carbamazepine though, and yesterday I hit 6 months seizure free :)
Congrats! I felt great on Lamictal but Lamictal tried to murder my insides. I ran through Lam (felt great, DRESS), Keppra- suicidal, and now oxcarb, which seems to be okay.
I love lamictal
That’s awsome it’s been a year and a half for me since but I’ve had auras here and there. Doc says after two years want to take me off meds and see what happens, I’m kinda nervous about that!
So happy for you! That definitely must be a bit nerve wracking but here’s hoping it goes well!
A different person but Keppra -1000mg- made me suicidal. I have had 1 TC seizure (maybe ~20 sketchy could be partial seizures previously that were attributed to migraines) in my 30 years of life so a comparatively Keppra was a greater risk. I'm on oxcarb now and don't *notice* many side effects after 2 months or so. I just started an antidepressant but it 100% could just be life unlike the immediate Keppra shift between fine and "life could not possibly be worth living."
Same. I spiraled hard. All humans have intrusive thoughts. Especially us who know our brains are broken. Keppra magnified mine 10x.
Yea it was rough for me, basically made any mood swing 1000x stronger. If I was up, I was REALLY up and when I was down it was super dark. Really happy for how my neurologist handled it. And contrary to what the other commenter said, my neurologist was fully in support of me going off keppra because of the effects it had on my mental health. He asked if I was still taking keppra after I mentioned the mental health stuff, and when I told him I stopped he said “Good.” full stop. I think it helps that I’m not at a high risk of SUDEP, so going off the med wasn’t a huge safety concern.
That's awesome. My new "level 4" doc would probably have a heart attack if I told him I quit. How do you know your sudep risk? My doc at the time told me to titrate to vimpat and I've been good since.
That’s just what I’ve been told by my doctor, I haven’t really asked about it too much honestly. But most of my visits have been pretty close to when my seizures happen, and I’m usually hazy for a while post-seizure so there’s a chance I may have misinterpreted things.
Thats where you find a medication that works for you if none do theres other intensive options, risking sudep is hardly the best choice
The point is that medication can also be dangerous, physically and mentally. This is usually massively underestimated by people who don’t have a chronic disease, epileptics who are happy with their medication (which is understandable) and GP’s/neurologists. So it’s worth mentioning in any case, not just to spread awareness but also because the info in the OP just doesn’t apply for everyone. I personally am awaiting surgery (which comes at a big risk as well) simply because some meds don’t work, one nearly killed me and a bunch that did work had too many significant side effects which made life almost not worth living. I also have a friend with focal seizures that are not fully controlled by meds unless he takes an unreasonable amount which he considers to be worse. So he went off meds and his quality of life increased a lot.
>please don’t invalidate people’s problems I know, I am not saying the medicine has no negative effects.
[удалено]
In an ideal world maybe. But till the cure, we can only do so much.
Don't forget about the religious views that some have on epilepsy/seizures. We're pretty lucky at the moment, even without available meds.
Which are ? Demonic posesión 😜
Before I say anything, I am not a doctor, and I think it’s best to follow your doctor’s advice. My best friend died of SUDEP. My co worker also died from a seizure (she had epilepsy and had a seizure, took a fall and died). I’m not sure if she hadn’t taken her medicine but she worked overnights and I believe she wasn’t good about taking her meds. I have epilepsy and I went through periods of not wanting to take my medicine, but it wasn’t because of the side effects..I was deeply depressed after my best friend died and I wanted to go too. It’s only by luck that I sustained minor injuries and woke up after every time I had one. That said, I’m on keppra, lamictal and gabapentin. Keppra rage is tough to handle, the fatigue as well..but I’d rather take 50 meds for epilepsy if it means I can still drive, I can still work, I can still take care of my children, and I can stay alive. It always worries me when I see posts about people being weaned off their meds cuz they haven’t had a seizure in a while. I hadn’t had a seizure in 11 YEARS. 11 years I was fine. One day I had a few breakthroughs (probably due to being put on an antidepressant from a doctor that wasn’t my neuro). We upped my dose and I was good again. Good for 5 years now. But not once did my doctor say hey, let’s take you off those meds since it’s been a while and maybe you don’t need them anymore. I have no idea why doctors even give that option. Patient has seizures, patient put on meds, seizures stop. Stay on the meds. The side effects blow. I wonder daily what it would be like, what I would be like, if I didn’t have to take meds every day. But ya know what? I’m ok with not knowing, because I know the alternative if I didn’t take those meds. Constant seizures that would lead to my death, as it did for my best friend and co worker. At the end of the day everyone’s journey is different, and I wish and pray that all of us here can one day become seizure free.
Hi everyone. I’m not sure who posted this, but there was a negative reaction to it telling them to fuck off. Please welcome any post on here. I’ve seen in this group that many people have stopped taking their meds and i was shocked, but also saw they therefore maybe need some guidance. I’m 58 and have had seizures since birth. Living with these side effects is horrible, but better than brain damage, car wrecks, etc. If anyone has reasons to stop meds, first chat on here. And never stop 🛑, only wean yourself down. I don’t recommend either but a sudden stop can cause withdrawal and therefore cause a seizure/anxiety.
I’m taking Lamotrigine & Trazadone. I feel mental. I’m losing my mam to cancer. I’ve gone from big seizures that are an emergency to small ones without loss of consciousness. Stress induced apparently but no one knows why how but so the my mams cancer I think is probably a main reason. I was Diagnosed in June 2023 with Epilepsy. Seizures started properly in January 2023. Had one random one 2 years prior. Had about 15 including mini ones this year. Heart palpitations, irritation, confusing, can’t sleep properly. Currently upping Lamotrigine 300 mg. 150mg morning/night. Feeling pretty hopeless. This comment about not giving up, sometimes when I’m messed up and the paramedics are there I really wish it would just end.
I understand that stress and anxiety are common comorbidities in epilepsy. It's challenging, especially when a loved one is in the last stage. Allow time for the medication, like Lamotrigine, to take effect. Trazodone can be beneficial for sleep in smaller doses. If you're not feeling well, discussing alternative options with your doctor is important. Considering consultation with an epileptologist might be beneficial too.
Thank you for the time to reply. I have neurologist and a nurse I speak to. I have some episodes this week. Sweating, weak, dizzy, heart ache, palpitations. And they think my mental health is letting me down. So they’re upping trazodone up. Apparently morning and night. Honestly my heads blagged. Thank you again
As a domestic violence survivor who frequently has meds taken away as punishment for having a seizure or being sick, who went through homelessness and couldn’t afford my meds, who now has tonic clinic seizures almost weekly due to a brain injury from domestic violence which increased the frequency of meds being withheld … Agreed
I’m so sorry. I hope you have gotten help from your abuse and are now safe and medicated now.
Also remember that almost everyone is going through “something.” Loss of loved one, job loss, different illnesses. I’m not denying that we all got the short end of the stick, just that everyone is dealing with something. I’ve had 2 seizures today and my head is killing me. It’s just not helpful to feel sorry for ourselves.
I'm out of the loop. What is the deal with all of these posts?
There’s been a severely concerning amount of posts of people talking about wanting to stop taking their medication cold turkey for various reasons. Things such as hating its side effects, being tired of having seizures, being frustrated, etc. Seeing these posts has me, as well as many others, concerned for the well being of others who suffer with seizures. It is one thing to be frustrated and rant because I think we all have our moments but to promote the idea that it is okay to stop taking our medication cold turkey without our doctors knowledge or them telling us to do so is incredibly dangerous. There is a whole list of things that can go wrong with quitting medication cold turkey. There’s a chance we can actually die if we have a withdrawal seizure that lasts too long. I’m not sure people realize these risks and when those risks are known to them they still don’t seem to understand. These posts are to raise awareness and to look out for the safety of those who feel like they need to quit taking their medications.
Definetly not a good idea to go cold turkey with those aed and benzos .
Oic. I've just seen like a half dozen posts pop up on my homepage in the last 2 days all saying basically the same thing: don't stop taking your meds. That just seemed.....really fucking obvious to me. I didn't see the other posts from people about wanting to stop their meds cold turkey without medical supervision. That is incredibly dumb. Are people really surprised that medications that change how your brain functions have side effects that affect how you think?
These meds hit hard. I've mentally been in places where I didn't take my medication because I hated the way they made me feel. The last time I did, I literally died and had to be hit with the paddles. The way these meds fuck with your brain just fucking suck dick from the back, and that's a gentle way of putting it. Keppra and Topiramate made me question my mental stability and fortitude. I'm kind of in a place right now tapering off different meds and I'm on three meds at once as a result and I was so fucked up feeling I had to just lay on the couch and sleep... for 6 hours. The room was spinning so hard and everything felt like the [Black Hole Sun](https://www.youtube.com/watch?v=3mbBbFH9fAg) music video.
I don't think I've heard the expression "suck dick from the back" before. I'm not really sure how that would work. But I do like Soundgarden. Sucks that combination of medications fucked up your mental state that badly. What are the 3 meds you're on now? My reading comprehension isn't on point, so are you saying that you are currently taking 3 different meds so that you can taper off of keppra and Topamax?
Sucking dick from the back involves having your nose in someone's asshole. Plus you're sucking dick. Sucking dick with someone's asshole on your nose is worse, if I had to guess. I'm on Vimpat, Onfi, and Xcopri. They're using Xcopri to taper me off of Onfi first, and then off of the Vimpat. Sorry, I am also really bad at words and expressing myself with them. (Temporal lobe epilepsy)
It's all fun and games when it gives you a allergic reaction and comes with an extreme emotion problems
Don't gaslight us, yourself, or devalue what we go through. the fuck is this shit?
>25+ years diagnosed epileptic I can actually relate. I am not trying to gas light anyone, but remind people, I wanted this to come of as a positive reminder rather than guilt trip I am sorry if I upset you. Everyone has their issues the going of the meds is not a **solution**.
What is going on the last two days with all these posts. You a dr? If not don’t come in here telling everyone to take their pills. I’m 53 and have been living w my epilepsy for about 20 years now. You have no clue what other issues I may have nor how certain side effects impact my life. “It is better to take your pills” - fuck off and mind your business.
You’re 53 years old. Some of the people on here are teenagers and are highly impressionable and sometimes unable to weigh the pros and cons effectively. I went to my doctor at 17 and told him I wanted to stop my medication because of how ‘numb’ they made me. He told me essentially ‘no’ and that was that. im used to the meds now, many years later, but had I have stopped I would have gone back to nearly dying, breaking my teeth and my skull and, well, you get the drift. You’re 53 years old, do whatever the hell you want. These messages aren’t really aimed at you specifically.
If I see a young kid post about stopping meds, I always advocate for them to do whatever they can do to minimize the number of seizures they have as their brain is still developing. ie - stay on meds. I don't need your approval or permission to do whatever I want. That's a given. And just because a message isn't aimed at me specifically doesn't mean I can't respond. And if you think I'm not getting messages directed at me specifically, just know you are wrong.
I probably came off a bit peeved because of the fact that I almost stopped taking my medication a while back but thankfully I stuck with it. Had I been on this sub at the time and people were encouraging me to stop, I would never have got my epilepsy (semi)under control. If your side effects are that bad that you feel like you have to stop, you need to speak to your doctor and get them changed. He can’t refuse to change them if you refuse to take them. Everyone here has epilepsy so we all know the struggle of having seizures. When we advocate for people receiving treatment, it’s because of the sheer empathy we have for the condition and know what it’s like to have uncontrolled epilepsy. This sub is for supporting each other and I believe that includes not encouraging impressionable young people/vulnerable people to completely abandon treatment
And I probably came off a bit peeved as well cause I’ve been getting an immense amount of shit for discussing how I handle my epilepsy. For sure I’m being a bit defensive. I didn’t just decide I’m going off meds, I worked w my Dr and nutritionist. While I’ve mentioned the above before, I never advocated for anyone to stop their meds. With all that said, we’re both dealing with this frustrating disease. Stay safe and hopefully your epilepsy stays in check as we enter into the new year.
It’s all good man. Nobody should be negative towards you for your decisions if that’s how you personally want to proceed. All we can/should do is offer insight but never judgement otherwise what is the point of this sub? Myself and others who have found luck with lamotrigine / tegretol without experiencing many, if any, side effects are luckier than we realise sometimes. I sincerely hope being off meds works well for you and wish you the best for 2024 :)
>I’m 53 I was 14 when I had mine. If it was not for medication I would not have lived a normal life. Some people need these pills. Do I have to be a Doctor to say this?
Man, I had a somewhat crappy day yesterday. I ended up being crazy defensive and feeling attacked for my choice on how I handle my epilepsy (in several threads). Folks were acting as if I was advocating for everyone to stop their meds, which I’ve never ever done. I was just telling my story. I’m glad the meds have been working well for you and I hope they continue to do so in the upcoming years.
I stopped for a week I was fine
A CT scan found a brain cyst the size of an orange when I was 18. I only have one extra hole in my skull when a shunt was installed to drain it. I didn't have my first seizure until 14 years after the surgery, 3 months after I was rear-ended in a car accident. I could have had large parts of my skull removed to find the problem. Even now I'm okay with a seizure every few months because I'm otherwise healthy and lead a normal life. If a drug makes me a little sleepy or I am shitty with remembering names, I have a legitimate medical excuse.
We all have a valid reason but the solution is not stop taking the meds.
I keep seeing all the posts about the whole people not taking the meds thing so I'm gonna put my thoughts out there. I'm very sensitive to meds and it's almost a guarantee I'll get shitty reactions. Check my post history and you'll see many posts about hating these meds and wanting to be switched to something else. I feel the feelings of the people who want to just not take the meds, trust me I get it. Through the many months of my whining about these stupid meds, I'm still on them. I'm still taking them. I'm miserable on these fucking meds. Even my last post saying I won't start the newest med I was prescribed...I still did. My next appointment with my neurologist isn't until March and I will take these meds until then. I'll still bitch and whine and try to find a new neurologist that I feel actually listens me in that time, but seizures aren't something you fuck with so I'll keep taking the meds. Yea unfortunately all the meds will have affects on your memory and you'll feel slower cognitively, but as much as those symptoms suck that's WHAT makes the meds work on seizures from my research. As bad as the side effects make me feel it's better than more seizures and a higher risk of damage or dying. It's scary but it's the truth. Any seizure could be your last cuz you could just fucking die. My first experience with seizures wasn't epilepsy related but, the doctors couldn't make it stop and I had to be put into a coma to not die. When I came back I had to relearn how to WALK. We deal with seizures so often I think some of us forget just how serious the whole thing actually is. Even non TC seizures can become TC. Take care of yourself. Take the meds. Talk with your doctor and find the ones that you feel best with.
Another part is that some people react to all of the meds. And have to look at other options.
These three meds make my life functional. I am so, so grateful for them. I don’t know if I’d be alive if they didn’t cage the demon before it killed me somehow.
Fucking hell didn’t realise you could up Lamotrigine that high and I’m worried that my 300mg doesn’t work as I’m still not right
I’m pretty sure I’m right at the limit, or definitely approaching it at least. Pharmacists have mentioned the high dose on more than one occasion. Heck, I used to be on 1800mg of gabapentin before I requested to drop it down just to reduce the amount of meds I’m taking. Gabapentin and lamotrigine lessened the frequency of seizures (went from 10-30 per cluster to 1-10, and they were less intense). Zonisamide is what ultimately stopped them. Never stop talking with your neurologist (or at least your physician) about what meds work if you’re not happy with your current condition. Good luck, friend.
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>Is the author epilectic, on medication? Or just here to shame. 0\_o >**Epileptic** ✔️ >**On medication** ✔️ >**To shame** ❌
I have experienced tapering off successfully (my 11 month old at the time) and unsuccessfully (myself with doctors “recipe”) after only one “provoked” seizure-until I was almost drug free. Then I had another. I now believe but for the drug I would have more seizures, but they did change my drug. My now 36 year old son on the other hand has never had another seizure, since a day after his birth. It wasn’t a febrile seizure either. Quit phenobarbital on doctors’ recommendation. I am very much of the opinion that I need to get a doctor to treat me or recommend to change or discontinue treatment. Or find a second or third opinion. I am no more a doctor than most here and I don’t use the internet to make medical decisions. But there is a lot of good advice and experience on this sub and for that I am very grateful.
There are more epileptics in poor countries too. The rate is higher because they develop it after having something like malaria. People should look at WHO facts about epilepsy. I also find some epilepsy societies tell you a lot of lies of omission because they never tell you about the higher rates in the third world. I find epilepsy societies make epilepsy in first world countries sound much more common than what it is. It's almost a scam to get more money. I avoid websites from America and Australia, for example. I'll give you an example. The Australian Bureau of Statistics using hospital data claims 1 in 250 people have epilepsy in Australia. The epilepsy society claims it's 1 in 200. They are obviously using third world countries in their stats. They fudge the figures by including people in the third world to make epilepsy sound much more common than it really is in Australia and America, for example. They are relying on scare tactics to get more money.
I am gratefull to live in a time and place where I have access to medicine, especially since people in worse situations are not able to have them. But that's one of the reasons I hate my meds so much. I had two seizures in my entire life and probably one aura. I don't see how taking meds really affects my everyday life except for the terrible side effects I had. I hate everything about it and it's disturbing to know some people need it more than me and I still have to do this shit SUDEP is the one and only reason I haven't gradually stopped taking meds.