I had a brain aneurysm in 2011, underwent brain surgery, and recovered fully lived normally since then. Since covid, I can not remember if it was before getting covid myself or not. I began having deja vu auras, then feeling anxious and butterflies and everything that comes along with the focal seizure. I kept asking my doctor about it, but he said it could likely be stress, anxiety, and depression. After almost 2 years of experiencing these auras, I tried changing some habits, one main one was not drinking more than 2 cups of coffee (was drinking 4-5). I completely stopped having these episodes for almost 5 months. Then I woke up in hospital after having a seizure while sleeping. They wanted to start with keppra, which to me didn't make sense as so far I only had one seizure. Neurologist told me 6 months, no driving or work, and to be medicated. I spoke with my neurosurgeon, and he told me you have to be seizure free for 6 months regardless of being on meds. So i tried going with no meds. Was fine for 4 months, then my wife caught me twice in the morning having seizures while sleeping on different occasions a week apart from eachother. Also not going to lie each of the 3 times I had these seizures it was after 3-4 nights of drinking on the weekend, which could likely have triggered it. I have stopped drinking so much especially on so many consecutive days. I had an appt with a neurologist a week after, and I was happy and hoping to tell her I'm seizure free for the last 4 months. I did not mention to her about them. Even with out her knowing about those she said driving is a grey area and she would have to talk to a colleague about if I would be able to drive with out meds, and that my neurosurgeon maybe was confused about the rules. I have been trying to avoid having to take keppra for the rest of my life as I would like to know how often I really have seizures, so far only happen while asleep anyway, and also I will never really know if its helping me, and may just give me more problems to deal with... whats crazy to me is they haven't done any tests on my brain or even told me the type of seizures I was having and yet are ready to medicate it. I feel like taking the medicine will not help me. It will just hide the issue. I would feel more comfortable if they did testing on my brain before throwing a medication at me that I may have to take forever, which from reading everyones comments seems make 50% or more of the people worse. According to her, she was ready to medicate me forever for having one seizure, which I may have not even needed.
Yo I have a very similar experience as you. Lots of drug intake and or just normal day to day stress that may be triggering my brain to have a seizure episode in a sense. And the fact that your seizures too are in a sense undiagnosed. Just hits home.
But yeah I'm just spooked overall at not knowing what keppra / levit- is doing to me long term. I do have lots of stress issues and anger problems which I hope aren't being in a sense dismissed by the meds
I started having grand mal seizures in 2015 and they wouldn’t stop (status epilepticus). Keppra gave me my life back. So while I get that for some people it might not be the best medication, for me it’s worth it. I can drive and live a normal life with it. As for mental health problems…I had those way before the seizures started so I’m not sure the medication is a factor.
People with epilepsy get grand mal seizures, I have tonic clonic seizures which are the hardest form of grand mal seizures, and if I actually had status epilepticus, I wouldn't be here to post this, be lucky you didn't actually have status epilepticus, because it doesn't stop and that's where actual death comes in the story. Status epilepticus is the state of death for people who have epilepsy. I had 5 seizures a day when I was only 15 - 17 years old, then they just got longer and harder but I started having less because of the medication. I'm 57 now and I'm ready to give up this keppra, this has put me into depression on and off all the time, and I'm talking about when I feel like killing myself and someone else, it's gonna be hard, but I'm gonna try to get off this keppra and hope I don't go into status epilepticus.
Keppra in my experience has made me get stressed, depressed causing outrages and suicidal thoughts. I'm taking 3000mg a day for many years and I've recently broke some a few fingers at work from an out burst, I didn't even realize I broke 3 fingers until I got home that shift
I’ve been taking Levetiracetam for 8 years since a sudden grand mal. It has been great preventing major seizures for my temporal lobe epilepsy, but I still get absence seizures every 2 or 3 weeks. Any suggestions?
@@ImYourIchigo Hi. I posted that 7 months ago, and have tried a few things since. I’m currently trying to increase my Gaba levels by taking Passion Flower - Passiflora. Been taking it twice a day for 6 weeks now, and so far no absences. Normally there is 3 - 4 weeks between these, so it’s looking promising, but early days. And I’m never going to stop the Leveteracetam, that grand mal experience in 2015 still gives me nightmares 👍
I will be honest, I have been on at least 12 combos over 37 years, dilantin & depokote, Lamictal & Tegretol, gabatril & Tegretol, phenobarbital & dilantin, Lamictal & gabatril, phenobarbital & Lamictal, when I was ten the doctor started me on Keppra while it was still a sample drug, and for the type of seizure I had for many years, it was the only drug, that wasn't causing brain fog, tiredness, so I went to a lesser of all the drugs with weight gain, mood swings, mental diminishing, and all the other side effects of being an experiment for doctors who were still in the experiment phases of my youth, because I have had it since I was 5 years old and I am 43, I have had 3 brain operations from numerous sources world renowned Neurological society's, and I am just happy to have found a combination that didn't turn me into Shawn of the Dead.
I am just starting with these videos. So informative for me. I am looking for a therapist that has an epilepsy background or has knows the effects epilepsy has on a person's psychology. Tips in how to find someone?
Levetiracetam made me angry and more depressed, but seizures were reduced. Then in addition I was put on lamotrigine that is not only for treating epilepsy but can also be used for depression and bipolar. The effect was immediate, my mood improved and my wife had the old me back, I hadn't realised how bad it was. The two drugs together have stopped seizures so far. There is no one size fits all, but this is what has worked for me.
@@RedBatRacing I took lamictal too. Keppra gave me more seizures and made me angrier by the day I am now only on lamictal and I plan on making a plan with my neurologist to lower it
I have found Keppra has been great for me, I hear so much about the anger issues and yes I did notice anger issues but I was able to control my anger , and I started ketogenic diet last year and I find I have had very less seizures , more under control and I only had one major seizure . I also have catamenial epilepsy which is hormone related which could be why keppra is helping me tremendously . Tegretol made me more tired, gave me Lupus and cause of my hair loss and painful lupus and it’s a sodium channel blocker which I found everytime I if a seizure I felt dehydrated that no matter how much water I drank o would not empty my bladder for days
It gave me intense nocturnal seizures that I’d never had before, so I stopped, haven’t had a seizure since. But also closely monitoring my blood sugar/ general mental state much closer now.. getting adequate sleep etc
Levetiracetam has been a blessing at stopping my focal seizures , for 18 years , but in April 2020 I got with a feverish temperature 101.8 it lasted 9 days , and I began having aura's hundreds of them . Thankfully no seizures and since then I have the aura'''s once in a while with or without a fever , just started having milder seizures 6 months ago and I'm aware during the seizures now and Im wondering should I add another medication or , increase my levetiracetam dosage currently taking 2,000 daily .
It's great that you are having far fewer seizures now - but please do know that an aura is a type of focal seizure - it's just that we call it an aura because it often precedes a more severe type of seizure! It sounds like you need to see your neurologist again ASAP. Good luck!
my 87 year old mother suffer of epilepsy since 1992 , she was taking Valprax 500mg , 1 every day until she had a epilepsy attack or seaizures and fell in the bathroom and broke her head need to call ambulance next hour in the hospital had 2do attack or seizures it was one of my worse experience i had in my life see my mother having epilepsy attack , i think nurses and doctor that night were not ready for that because the hold my mother all her body creating bruises in all her body were about 7 nurses holding my mother and injected anesthia to made her calm after that she was unconscious for 24 hours , the doctors start giving keppra 500 mg, so far so good , just only the same problem that had with Valprax 500mg it hurt her stomach with diarrhea so need to be very carefull with meals , not milk or cheese, fry ,etc etc she eat very litter to be afraid to go to toilet all the timen special mornings , aslo she had not balance when she walk the last 10 or more years . but the most important not more seazures.
Ugh. Been on carbamazepine for 40yr but sodium, cholesterol, testosterone totally messed up, so got to decide whether Levetiracetam is any better, or whether I’d just be swapping one set of side effects for another!
i take leviteracetum and CLOBAZAM ( oresta-20) ....clobazam is something people hate nor recommended by physciatrist...but i have to use it regardless....any alternate.
Dok can I ask in my first Dr.give me Tegretol 200 1times in the morning,.zotral50mg for my blood bec.i have feel panick also in the morning and olzadin 5mg 1/4 ervery night...and almost year past my mom change my dr. Bec. I'm still attacking seizure and I was in EEG test and there was seen abnormal lll in my left front head and the dr.give me Tegretol 200mg 3 times a day but still I'm attacking seizure and I feel in my whole body that my blood is moving ..what will I do doc..will I go back to my first Dr.
will cheerfully wait for other subsequent sessions/episodes related to this. Thank You for this presentation.
I had a brain aneurysm in 2011, underwent brain surgery, and recovered fully lived normally since then. Since covid, I can not remember if it was before getting covid myself or not. I began having deja vu auras, then feeling anxious and butterflies and everything that comes along with the focal seizure. I kept asking my doctor about it, but he said it could likely be stress, anxiety, and depression. After almost 2 years of experiencing these auras, I tried changing some habits, one main one was not drinking more than 2 cups of coffee (was drinking 4-5). I completely stopped having these episodes for almost 5 months. Then I woke up in hospital after having a seizure while sleeping. They wanted to start with keppra, which to me didn't make sense as so far I only had one seizure. Neurologist told me 6 months, no driving or work, and to be medicated. I spoke with my neurosurgeon, and he told me you have to be seizure free for 6 months regardless of being on meds. So i tried going with no meds. Was fine for 4 months, then my wife caught me twice in the morning having seizures while sleeping on different occasions a week apart from eachother. Also not going to lie each of the 3 times I had these seizures it was after 3-4 nights of drinking on the weekend, which could likely have triggered it. I have stopped drinking so much especially on so many consecutive days. I had an appt with a neurologist a week after, and I was happy and hoping to tell her I'm seizure free for the last 4 months. I did not mention to her about them. Even with out her knowing about those she said driving is a grey area and she would have to talk to a colleague about if I would be able to drive with out meds, and that my neurosurgeon maybe was confused about the rules. I have been trying to avoid having to take keppra for the rest of my life as I would like to know how often I really have seizures, so far only happen while asleep anyway, and also I will never really know if its helping me, and may just give me more problems to deal with... whats crazy to me is they haven't done any tests on my brain or even told me the type of seizures I was having and yet are ready to medicate it. I feel like taking the medicine will not help me. It will just hide the issue. I would feel more comfortable if they did testing on my brain before throwing a medication at me that I may have to take forever, which from reading everyones comments seems make 50% or more of the people worse. According to her, she was ready to medicate me forever for having one seizure, which I may have not even needed.
Yo I have a very similar experience as you. Lots of drug intake and or just normal day to day stress that may be triggering my brain to have a seizure episode in a sense. And the fact that your seizures too are in a sense undiagnosed. Just hits home.
And I hate big pharma in a sense and I just feel like one diagnosis just leads to a shifty medication which leads to more diagnosis ect
But yeah I'm just spooked overall at not knowing what keppra / levit- is doing to me long term. I do have lots of stress issues and anger problems which I hope aren't being in a sense dismissed by the meds
Good point about the fine line between being informative and scaring people.
I started having grand mal seizures in 2015 and they wouldn’t stop (status epilepticus). Keppra gave me my life back. So while I get that for some people it might not be the best medication, for me it’s worth it. I can drive and live a normal life with it. As for mental health problems…I had those way before the seizures started so I’m not sure the medication is a factor.
So glad it gave you your life back!
People with epilepsy get grand mal seizures, I have tonic clonic seizures which are the hardest form of grand mal seizures, and if I actually had status epilepticus, I wouldn't be here to post this, be lucky you didn't actually have status epilepticus, because it doesn't stop and that's where actual death comes in the story. Status epilepticus is the state of death for people who have epilepsy. I had 5 seizures a day when I was only 15 - 17 years old, then they just got longer and harder but I started having less because of the medication. I'm 57 now and I'm ready to give up this keppra, this has put me into depression on and off all the time, and I'm talking about when I feel like killing myself and someone else, it's gonna be hard, but I'm gonna try to get off this keppra and hope I don't go into status epilepticus.
I’m getting anemic and having tremors on my arms and legs on keppra. Though it controls my seizures
Keppra in my experience has made me get stressed, depressed causing outrages and suicidal thoughts. I'm taking 3000mg a day for many years and I've recently broke some a few fingers at work from an out burst, I didn't even realize I broke 3 fingers until I got home that shift
Gosh, I hope that you have raised this with your neurologist and/or psychiatrist?
I’ve been taking Levetiracetam for 8 years since a sudden grand mal. It has been great preventing major seizures for my temporal lobe epilepsy, but I still get absence seizures every 2 or 3 weeks. Any suggestions?
I'm following this because I'm suffering the same
@@ImYourIchigo Hi. I posted that 7 months ago, and have tried a few things since. I’m currently trying to increase my Gaba levels by taking Passion Flower - Passiflora. Been taking it twice a day for 6 weeks now, and so far no absences. Normally there is 3 - 4 weeks between these, so it’s looking promising, but early days. And I’m never going to stop the Leveteracetam, that grand mal experience in 2015 still gives me nightmares 👍
I will be honest, I have been on at least 12 combos over 37 years, dilantin & depokote, Lamictal & Tegretol, gabatril & Tegretol, phenobarbital & dilantin, Lamictal & gabatril, phenobarbital & Lamictal, when I was ten the doctor started me on Keppra while it was still a sample drug, and for the type of seizure I had for many years, it was the only drug, that wasn't causing brain fog, tiredness, so I went to a lesser of all the drugs with weight gain, mood swings, mental diminishing, and all the other side effects of being an experiment for doctors who were still in the experiment phases of my youth, because I have had it since I was 5 years old and I am 43, I have had 3 brain operations from numerous sources world renowned Neurological society's, and I am just happy to have found a combination that didn't turn me into Shawn of the Dead.
Can you tell me the combination?
Please share with us this combination
I am just starting with these videos. So informative for me. I am looking for a therapist that has an epilepsy background or has knows the effects epilepsy has on a person's psychology. Tips in how to find someone?
Searching for a “neuropsychologist” specifically could be good - they tend to have insight into both the neuro & psych parts of brain health…
I'd rather have seizures than ever taking it again.
Tell us more. What happened?
@@Sydopath destroyed my life & i attempted suicide
@@Sydopathkeppra made me a very negative person it kept getting worse and worse. I’m glad I got off it
Levetiracetam made me angry and more depressed, but seizures were reduced. Then in addition I was put on lamotrigine that is not only for treating epilepsy but can also be used for depression and bipolar. The effect was immediate, my mood improved and my wife had the old me back, I hadn't realised how bad it was. The two drugs together have stopped seizures so far. There is no one size fits all, but this is what has worked for me.
@@RedBatRacing I took lamictal too. Keppra gave me more seizures and made me angrier by the day
I am now only on lamictal and I plan on making a plan with my neurologist to lower it
I had so much energy when i took it - great! The super bitch side was problematic. Not on it now, missing the buzz but life is now back to normal.
I have fnd seizures and keppra stopped my seizures in days so it worked no mood changes
I have found Keppra has been great for me, I hear so much about the anger issues and yes I did notice anger issues but I was able to control my anger , and I started ketogenic diet last year and I find I have had very less seizures , more under control and I only had one major seizure . I also have catamenial epilepsy which is hormone related which could be why keppra is helping me tremendously . Tegretol made me more tired, gave me Lupus and cause of my hair loss and painful lupus and it’s a sodium channel blocker which I found everytime I if a seizure I felt dehydrated that no matter how much water I drank o would not empty my bladder for days
It gave me intense nocturnal seizures that I’d never had before, so I stopped, haven’t had a seizure since. But also closely monitoring my blood sugar/ general mental state much closer now.. getting adequate sleep etc
Gosh that’s so interesting! Pleased to hear you’re seizure-free now!
thank you, I am relieved but staying vigilant. Thank you for your content too, epilepsy can be a mystery@@EpilepsySparksInsights
Levetiracetam has been a blessing at stopping my focal seizures , for 18 years , but in April 2020 I got with a feverish temperature 101.8 it lasted 9 days , and I began having aura's hundreds of them . Thankfully no seizures and since then I have the aura'''s once in a while with or without a fever , just started having milder seizures 6 months ago and I'm aware during the seizures now and Im wondering should I add another medication or , increase my levetiracetam dosage currently taking 2,000 daily .
It's great that you are having far fewer seizures now - but please do know that an aura is a type of focal seizure - it's just that we call it an aura because it often precedes a more severe type of seizure! It sounds like you need to see your neurologist again ASAP. Good luck!
@@EpilepsySparksInsights Thank you I will see the DR soon , retired & no kids to take of just slow .
Interesting!
my 87 year old mother suffer of epilepsy since 1992 , she was taking Valprax 500mg , 1 every day until she had a epilepsy attack or seaizures and fell in the bathroom and broke her head need to call ambulance next hour in the hospital had 2do attack or seizures it was one of my worse experience i had in my life see my mother having epilepsy attack , i think nurses and doctor that night were not ready for that because the hold my mother all her body creating bruises in all her body were about 7 nurses holding my mother and injected anesthia to made her calm after that she was unconscious for 24 hours , the doctors start giving keppra 500 mg, so far so good , just only the same problem that had with Valprax 500mg it hurt her stomach with diarrhea so need to be very carefull with meals , not milk or cheese, fry ,etc etc she eat very litter to be afraid to go to toilet all the timen special mornings , aslo she had not balance when she walk the last 10 or more years . but the most important not more seazures.
Ugh. Been on carbamazepine for 40yr but sodium, cholesterol, testosterone totally messed up, so got to decide whether Levetiracetam is any better, or whether I’d just be swapping one set of side effects for another!
It can all be such a challenge - to put it politely!
i take leviteracetum and CLOBAZAM ( oresta-20) ....clobazam is something people hate nor recommended by physciatrist...but i have to use it regardless....any alternate.
Dok can I ask in my first Dr.give me Tegretol 200 1times in the morning,.zotral50mg for my blood bec.i have feel panick also in the morning and olzadin 5mg 1/4 ervery night...and almost year past my mom change my dr. Bec. I'm still attacking seizure and I was in EEG test and there was seen abnormal lll in my left front head and the dr.give me Tegretol 200mg 3 times a day but still I'm attacking seizure and I feel in my whole body that my blood is moving ..what will I do doc..will I go back to my first Dr.
I gotta sacrifice my mental state mood and cognitive state to make seizures quit happening for a week or 2 maaaaan 🤣🤣🤣
Argh....! Not ideal...! Worth bringing up with your neurologist?
I'm starting to think it's because it drains your serotonin
Keppra was horrible to me! Lamotrigine is 1000% better!
I’m so glad you’re getting on better with Lamotrigine!