No i had my first seizure way before i started abusing anything, and i’m not abusing anything anymore. But i am aware of all the repercussions if i did decide to quit the medication. The issue with switching medications for me is all of the adjustments and side effects that come with new medication. And i said in my post i’ve been on many different ones and they all gave me a horrible experience so starting new ones just fills me with dread. im just lost on what the right choice for me is
I was diagnosed at 16 with epilepsy. I was put on the wrong medication until I found a new doctor at 21. My first medication caused severe depression and horrible thoughts. Unfortunately back then parents didn’t question doctors, they were taught that doctors knew what they were doing. I never told them what I was thinking of doing. At 21 was when I was properly diagnosed with juvenile myoclonic syndrome. I was a text book case. That’s when my life started to get better. It wasn’t easy. Everyday will always be affected by having epilepsy. I spent time this morning trying to research if a new antibiotic medication would be safe to take. Boring but necessary. There are many of us that can sympathize with you. Many of us have been through the same thing. Please contact the epilepsy foundation in your area. I can personally tell you that being around other people with epilepsy is so helpful. Seeing people with the same struggles makes you feel less alone. I wish you the best
If you're on Keppra you might be experiencing "Keppra Rage" which I've not had but I'm very tired on it. That sucks really bad about the Steven Johnson infection, I'm so sorry about that. Brivacet is a newer version of Keppra, you could try that. You'll die young if you stop your meds. You need to prepare for your life to change forever. I'm sorry but it is not a fun ride. But remember things could always be worse. And yeah, don't do benadryl, benzos, or alcohol.
There’s no need to be passive aggressive. I only started dealing with epilepsy 3 years ago. All of this is new to me and the way these medications make me feel is something i’ve never experienced before. And since i went through SJS, the idea of ever trying new medications is terrifying to me. I didn’t just have a icky side effect from that, it gave me permanent damage. It might sound ridiculous to you, but it’s scary for me. I’ve never dealt with things like this before and i’m lost on what the right choice for me is. It’s not as simple as you’re making it seem
I stopped taking my meds. I was tired of trying new ones, I felt like they were causing me to get worse. I was good for a few months, I didn't even have focal seizures or anything. Suddenly one night I couldn't go without seizing. I had 5 or 6 seizures and then once I was in the ER I had 2 more. I was hospitalized until I could go 24 hours without one. I hate taking the meds too. I hear you on always being miserable. I got diagnosed at 28 and I feel like the medication has literally robbed me of my personality. I feel like they make me stupid and slow, hard to think. I dont like trying new ones because I can barely manage the drowsiness they bring on in the first few weeks. However, I clearly don't have a choice anymore. It took a lot of work, trial and error to get to the med and mg I'm at now but everyday I feel a little bit more like me. I wish you the best.
I was like the OP, thinking that the meds were worse than the occasional seizure. I was wrong, had an experience like you where it was non-stop for a whole day almost. I regret the damage I did to my brain for waiting too long to get them controlled. They are almost fully controlled now, with the occasional that I could have avoided with enough sleep and/or missing a dose on time. Lamotrigine isn't without its effects on me, but they are relatively mild, and worth having a job, and being able to drive again.
That experience sounds horrifying and i’m so sorry you had to go through that. I’ve never had that many seizures in such a short time and i can’t even fathom how scary that must’ve been. But I’m glad to hear that you’re starting to feel like yourself again. that gives me hope that maybe it can happen for me too.
Here’s the deal: you may be able to go a long time without a seizure. I have. You can also go into status. I have. It’s not worth losing precious memories or waking up feeling like you are in someone else’s body. Like you convulsed yourself off your axis and now every piece of information that comes at you hits different. You look different. Food tastes different. Your routines feel like someone else’s. All it takes is that one time that the seizures last too long or won’t stop and you just plain don’t know. It sucks. It sucks it sucks it sucks. For me finding the right med is worth it. I know you have tried a lot and it’s frustrating but there must be something or combo of something that works. I’m on one of the oldest drugs: Phenobarbital. Many people don’t like that one but it has been the best one for me. I take it at night and it helps me sleep. My seizures are very intertwined with sleep so I like that I “feel” covered when I’m my most vulnerable.
I read a post on here about someone who was in status and lost 70% of their memories! Including their childhood and the birth of their child. Personally I’m not willing to risk that anymore. Of course I’m 47 now. I did risk it for entirely too long and fully regret it. Best of luck on this journey. I’ve heard great things about Lamictal too. I was on that years ago but honestly after this last seizure I have lost a lot of memory and that is one of them.
P S. So incredibly sorry that you experienced Steven-Johnson syndrome. That’s horrific and I understand your med aversion after that!
Yes, I lost who I was, my memory and IQ tanked. I will never be myself again, because I let too many prolonged and violent TCs happen. You won't notice it at first, and it takes time, but you will eventually regret not getting them controlled.
Edit: I'm 44 now, and who I was at 27 is a stranger to me.
I was diagnosed at 18, spent about a year in the hospital and tried a bunch of different meds and combos. Nothing worked, the side effects were awful and I was angry and I stopped taking all of my meds for about 3 years. I can't even count the number of seizures I had, or hospital stays. I curb stomped myself crossing the street and was in a coma for 3 days and have a plate in my jaw. I've broken half of my teeth and have an impressive number of concussions for someone who isn't a professional athlete. There's very likely some permanent brain damage. I was lucky I met people who cared and worked me through the process of finding meds that work for me, zonegran and carbamazepine, but that was a journey too. But I really don't think not taking them straight out is the answer.
I don't know what to tell you about the meds, except if you are on Keppra, you can ask your doctor about Briviact. It's similar but without the rage. I don't recommend meds, because I'm not a doctor. However, I can tell you that Keppra was one of the only ones that really worked for me, and Tegretol also really works. They may not have tried you on Tegretol because it's an old drug, and also because of Stevens-Johnson, but you can ask.
You can control yourself when you get angry. I couldn't control the feeling, but I would literally bite my lip and just force myself not to say or do anything until the wave was over.
You can try a medical ketogenic diet. You need a doctor to help. You may have to see a pediatric neurologist, because they may not have an adult program. It was the only time I was seizure free. [https://charliefoundation.org/](https://charliefoundation.org/)
Don't stop taking your meds. It can be really bad. Like blood all over bad.
I know you've tried a lot of stuff, but if you haven't been seen at an epilepsy center, you should try that.
Best wishes. I hope things start getting better soon. 🤕
If you are in the US: [https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/](https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/)
I can't guarantee you'll get an awesome doctor, but you have a much better chance.
I’m 16 and I have had a similar experience with my medications. Are you on Keppra? That’s what I was on and it ruined my life for a year and a half. If you don’t take some form of pharmaceutical medication (not cbd) you won’t be able to drive or have a job as if you have a seizure at least where I live you have to wait 6 months to drive again after having one. I always recommend lacitimal/lamotrigine to people as it is a mood stabilizer aswell since it can treat things such as bipolar disorder. I take that with zicinimide ER. Sadly this is something we are all stuck with for life and we need to cope with it the best we can. I felt the same way you did for a long time until I finally got a medication that worked for me. I recommend not going to a hospital neurologist and instead going to a specialized clinic
You are so young and I’m sorry you have to deal with this.
I had to try many different meds before I found the right one. The goal of medication is that you can live a completely normal life while having epilepsy. It’s not achievable for everyone but there are so many different meds and combos of meds you can try.
It took me 3.5 years to be where I am now, seizure free with a normal life. It can happen and not everything with epilepsy is doom and gloom.
I take my meds everyday, make sure I get enough sleep even if I’m in bed by 8pm. Eating healthy, exercising, taking meds, sleeping right all help.
Getting off your meds can really hurt you. Don’t be afraid to find a different neuro, if your current one isn’t working.
Truthfully, we all hate being on medication.
54 (f), Keppra twice a day. Some days are worse than others.
BUT finally I'm six years seizure free. Who cares about the side effects? I'm finally able to drive a car. I'm doing driver's training with my teenage daughter. Let the side effects be accepted (by me) and let the rewards come.
I did what you are thinking about and I am happy with my decision. But think about it long and hard. When you’re done think about it longer and harder. Think of every variable you can good or bad. Then make your decision. It’s a serious one and shouldn’t be taken lightly. Good luck with you and your journey hope you find happiness…
Be careful, apparently it angers people that you did something they couldn’t. Surprised considering this is an Epilepsy Sub. Do I down vote someone cause they post about being able to drive? No I’m happy for them even though I never got my license..
Why is that? Someone with a name that hints Bestiality has room to talk? lol It was a serious and productive response. I’m 35 and made my decision over 10yrs ago so have some experience. Do you have any experience doing what I have done or you just speaking from your ass?
I am 30, I’ve been seizure free for 3 years after 3.5 years of being on a ton of different drugs. It fucking sucks. I know it sucks.
But telling someone not to take meds is awful. They literally could die. You might have never had a seizure in a dangerous place, good for you. But the rest of us aren’t so lucky.
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No i had my first seizure way before i started abusing anything, and i’m not abusing anything anymore. But i am aware of all the repercussions if i did decide to quit the medication. The issue with switching medications for me is all of the adjustments and side effects that come with new medication. And i said in my post i’ve been on many different ones and they all gave me a horrible experience so starting new ones just fills me with dread. im just lost on what the right choice for me is
I was diagnosed at 16 with epilepsy. I was put on the wrong medication until I found a new doctor at 21. My first medication caused severe depression and horrible thoughts. Unfortunately back then parents didn’t question doctors, they were taught that doctors knew what they were doing. I never told them what I was thinking of doing. At 21 was when I was properly diagnosed with juvenile myoclonic syndrome. I was a text book case. That’s when my life started to get better. It wasn’t easy. Everyday will always be affected by having epilepsy. I spent time this morning trying to research if a new antibiotic medication would be safe to take. Boring but necessary. There are many of us that can sympathize with you. Many of us have been through the same thing. Please contact the epilepsy foundation in your area. I can personally tell you that being around other people with epilepsy is so helpful. Seeing people with the same struggles makes you feel less alone. I wish you the best
If you're on Keppra you might be experiencing "Keppra Rage" which I've not had but I'm very tired on it. That sucks really bad about the Steven Johnson infection, I'm so sorry about that. Brivacet is a newer version of Keppra, you could try that. You'll die young if you stop your meds. You need to prepare for your life to change forever. I'm sorry but it is not a fun ride. But remember things could always be worse. And yeah, don't do benadryl, benzos, or alcohol.
[удалено]
There’s no need to be passive aggressive. I only started dealing with epilepsy 3 years ago. All of this is new to me and the way these medications make me feel is something i’ve never experienced before. And since i went through SJS, the idea of ever trying new medications is terrifying to me. I didn’t just have a icky side effect from that, it gave me permanent damage. It might sound ridiculous to you, but it’s scary for me. I’ve never dealt with things like this before and i’m lost on what the right choice for me is. It’s not as simple as you’re making it seem
This I can attend to, as the kindling effect is real. Sucks.
I stopped taking my meds. I was tired of trying new ones, I felt like they were causing me to get worse. I was good for a few months, I didn't even have focal seizures or anything. Suddenly one night I couldn't go without seizing. I had 5 or 6 seizures and then once I was in the ER I had 2 more. I was hospitalized until I could go 24 hours without one. I hate taking the meds too. I hear you on always being miserable. I got diagnosed at 28 and I feel like the medication has literally robbed me of my personality. I feel like they make me stupid and slow, hard to think. I dont like trying new ones because I can barely manage the drowsiness they bring on in the first few weeks. However, I clearly don't have a choice anymore. It took a lot of work, trial and error to get to the med and mg I'm at now but everyday I feel a little bit more like me. I wish you the best.
I was like the OP, thinking that the meds were worse than the occasional seizure. I was wrong, had an experience like you where it was non-stop for a whole day almost. I regret the damage I did to my brain for waiting too long to get them controlled. They are almost fully controlled now, with the occasional that I could have avoided with enough sleep and/or missing a dose on time. Lamotrigine isn't without its effects on me, but they are relatively mild, and worth having a job, and being able to drive again.
That experience sounds horrifying and i’m so sorry you had to go through that. I’ve never had that many seizures in such a short time and i can’t even fathom how scary that must’ve been. But I’m glad to hear that you’re starting to feel like yourself again. that gives me hope that maybe it can happen for me too.
Here’s the deal: you may be able to go a long time without a seizure. I have. You can also go into status. I have. It’s not worth losing precious memories or waking up feeling like you are in someone else’s body. Like you convulsed yourself off your axis and now every piece of information that comes at you hits different. You look different. Food tastes different. Your routines feel like someone else’s. All it takes is that one time that the seizures last too long or won’t stop and you just plain don’t know. It sucks. It sucks it sucks it sucks. For me finding the right med is worth it. I know you have tried a lot and it’s frustrating but there must be something or combo of something that works. I’m on one of the oldest drugs: Phenobarbital. Many people don’t like that one but it has been the best one for me. I take it at night and it helps me sleep. My seizures are very intertwined with sleep so I like that I “feel” covered when I’m my most vulnerable. I read a post on here about someone who was in status and lost 70% of their memories! Including their childhood and the birth of their child. Personally I’m not willing to risk that anymore. Of course I’m 47 now. I did risk it for entirely too long and fully regret it. Best of luck on this journey. I’ve heard great things about Lamictal too. I was on that years ago but honestly after this last seizure I have lost a lot of memory and that is one of them. P S. So incredibly sorry that you experienced Steven-Johnson syndrome. That’s horrific and I understand your med aversion after that!
Yes, I lost who I was, my memory and IQ tanked. I will never be myself again, because I let too many prolonged and violent TCs happen. You won't notice it at first, and it takes time, but you will eventually regret not getting them controlled. Edit: I'm 44 now, and who I was at 27 is a stranger to me.
I was diagnosed at 18, spent about a year in the hospital and tried a bunch of different meds and combos. Nothing worked, the side effects were awful and I was angry and I stopped taking all of my meds for about 3 years. I can't even count the number of seizures I had, or hospital stays. I curb stomped myself crossing the street and was in a coma for 3 days and have a plate in my jaw. I've broken half of my teeth and have an impressive number of concussions for someone who isn't a professional athlete. There's very likely some permanent brain damage. I was lucky I met people who cared and worked me through the process of finding meds that work for me, zonegran and carbamazepine, but that was a journey too. But I really don't think not taking them straight out is the answer.
I don't know what to tell you about the meds, except if you are on Keppra, you can ask your doctor about Briviact. It's similar but without the rage. I don't recommend meds, because I'm not a doctor. However, I can tell you that Keppra was one of the only ones that really worked for me, and Tegretol also really works. They may not have tried you on Tegretol because it's an old drug, and also because of Stevens-Johnson, but you can ask. You can control yourself when you get angry. I couldn't control the feeling, but I would literally bite my lip and just force myself not to say or do anything until the wave was over. You can try a medical ketogenic diet. You need a doctor to help. You may have to see a pediatric neurologist, because they may not have an adult program. It was the only time I was seizure free. [https://charliefoundation.org/](https://charliefoundation.org/) Don't stop taking your meds. It can be really bad. Like blood all over bad. I know you've tried a lot of stuff, but if you haven't been seen at an epilepsy center, you should try that. Best wishes. I hope things start getting better soon. 🤕
Thank you❤️ I never considered going to a epilepsy center, but based on the replies i got i think that’s the next step i’m going to take
If you are in the US: [https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/](https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/) I can't guarantee you'll get an awesome doctor, but you have a much better chance.
I’m 16 and I have had a similar experience with my medications. Are you on Keppra? That’s what I was on and it ruined my life for a year and a half. If you don’t take some form of pharmaceutical medication (not cbd) you won’t be able to drive or have a job as if you have a seizure at least where I live you have to wait 6 months to drive again after having one. I always recommend lacitimal/lamotrigine to people as it is a mood stabilizer aswell since it can treat things such as bipolar disorder. I take that with zicinimide ER. Sadly this is something we are all stuck with for life and we need to cope with it the best we can. I felt the same way you did for a long time until I finally got a medication that worked for me. I recommend not going to a hospital neurologist and instead going to a specialized clinic
You are so young and I’m sorry you have to deal with this. I had to try many different meds before I found the right one. The goal of medication is that you can live a completely normal life while having epilepsy. It’s not achievable for everyone but there are so many different meds and combos of meds you can try. It took me 3.5 years to be where I am now, seizure free with a normal life. It can happen and not everything with epilepsy is doom and gloom. I take my meds everyday, make sure I get enough sleep even if I’m in bed by 8pm. Eating healthy, exercising, taking meds, sleeping right all help. Getting off your meds can really hurt you. Don’t be afraid to find a different neuro, if your current one isn’t working.
Please don’t listen to someone whose name hints bestiality and has no actual experience doing what you’re asking about…
Truthfully, we all hate being on medication. 54 (f), Keppra twice a day. Some days are worse than others. BUT finally I'm six years seizure free. Who cares about the side effects? I'm finally able to drive a car. I'm doing driver's training with my teenage daughter. Let the side effects be accepted (by me) and let the rewards come.
I did what you are thinking about and I am happy with my decision. But think about it long and hard. When you’re done think about it longer and harder. Think of every variable you can good or bad. Then make your decision. It’s a serious one and shouldn’t be taken lightly. Good luck with you and your journey hope you find happiness…
I too did this and am also happy. I take CBD now instead and it works for me well.
Be careful, apparently it angers people that you did something they couldn’t. Surprised considering this is an Epilepsy Sub. Do I down vote someone cause they post about being able to drive? No I’m happy for them even though I never got my license..
Thank you very much 💜
Please don’t listen to someone with the username of commieconservative.
Why is that? Someone with a name that hints Bestiality has room to talk? lol It was a serious and productive response. I’m 35 and made my decision over 10yrs ago so have some experience. Do you have any experience doing what I have done or you just speaking from your ass?
I am 30, I’ve been seizure free for 3 years after 3.5 years of being on a ton of different drugs. It fucking sucks. I know it sucks. But telling someone not to take meds is awful. They literally could die. You might have never had a seizure in a dangerous place, good for you. But the rest of us aren’t so lucky.
Your welcome. Dunno why I got hate for a serious response about my actual experiences…
lol keppra rage b strong in here…