I have Left Temporal Lobe Epilepsy . It was caused by a serious abscess that was inoperable and left me with an infarction. The Neurosurgeon put me on Kepra and sent me to a Neurologist who does nothing except Epilepsy and other seizure disorders. He has been a godsend. I’m now taking Lamotrigene 200 mg. twice a day and things are well under control.As I watched your video, I saw myself. My wife and I are in the Keto diet for weight, but I was happy that it’s also good for Epilepsy. An added bonus!!👍😊
☆ solidarity from a left TLE Finally diagnosed as an adult and trying to find medication that works. Thinking of you all and know you can keep fighting! ♡
We are thinking of you too! I'm happy you finally got an official diagnosis and are starting to work towards finding something to control your seizures. You can always reach out to me at info@defeatingepilepsy.org if you need help finding any information.
My 75 y/o friend: turns head to left, feels like falling and fear, multicolored rhymetic flashing lights like a police car. Feels other people are in the room, hears them talking and occasionally sees them but doesnt recognize. Those are his common auras.
I have never been on Keppra so I can't comment on what it is like. Tegretol helped to stop me from going into status epilepticus and has given me a good quality of life. I no longer have tonic-clonic or complex partial seizures. Once in a while I have the simple partial seizures, but it has been a while since I have had one.
They are very scary. When I was younger, I would become very frightened. Sometimes it would stop and I could calm down and other times I would go into a tonic-clonic seizure. In June it will be 43 years since my diagnosis.
Any type of brain surgery can be scary because you don't know the outcome. I have seen some people never have a seizure again to some have complications. One of our interns wrote an article on laser brain surgery. Here is the link: www.defeatingepilepsy.org/epilepsy-surgical-series/laser-ablation/. I hope this information helps.
Headaches are very common. I would have a headache and then feel scared before having a seizure. There are many different types of auras that people can have with temporal lobe epilepsy.
Good day My daughter having seizure..smack life's jerk..then after..that..my daughter..have long ..mind absence...1or 2 days .before back to normal....
On December 18 I had 4 attacks in, first time ever, coming from the temporal lobe, not even kepra o Trileptal has worked, honestly don't know what else to do. Anyone knows anything tha could work? I'm really about to give up
I'm sorry you are going through so much right now. Sadly with medication, it can take some time until the doctors find the right combination to get seizures under control due to all of us being different. Has the doctor done any tests to get a better idea of what is taking place? Also, if you know what your triggers are, that can help you develop coping skills as a way to reduce seizure activity. Mine are triggered from stress and changes in weather (bad thunderstorms).
@@DefeatingEpilepsyFoundation did an EEG for 3 weeks, didn't had one until they decided to change the electrodes, usually trigger by dejabu, stress, or family problems. The last ones happened while sleeping.
@@carlosguerrero5533 I'm sorry you are going through that. Family dysfunction had a very negative impact on my epilepsy years ago. I found one of the ways to reduce my seizures was working towards establishing healthy boundaries. It's easier said than done. I would keep a journal of everything that is going on that is triggering your seizures and what symptoms you are experiencing. That way the doctor can go over it. That way if they do not pick up a seizure on the EEG anytime soon, the doctor has an idea of what is going on and what resources could help you.
I can several different types with mine. My order before a tonic clonic seizure is feeling like I’m on an elevator and reached the floor. I needed to be on where it goes slightly up and down. So going in elevators terrifies me even though logically I know it’s not my aura. The fear ones are random. They happened more and it’s annoying AF. You’re doing something and all the sudden you kinda feel dread and it culminates in a sort of startle panic thing for a few seconds and it’s done. One of the ones I absolutely hate is when I’m listening to someone and I recognize they are using words but they don’t make sense. Kinda like when you are reading a book get to the end of the page and realize you haven’t a clue what you just read… I read audiobooks so I have to run them back sometimes four or five times to what I last remember hearing. ITS ANNOYING. 😂 offertory ones are annoying cause they are never something nice. Yesterday while talking to my niece, I kept smelling apple cobbler. My sister’s first question was if it was a seizure… nope… I don’t get that lucky. I get to smell cat mess when those happen. The walking ones are weird. First, I am disoriented, I can tell im seeing things but they just don’t compute. Those are usually with the elevator feeling. The elevator feeling isn’t alway followed by a tonic clonic seizure. If it happens 5 times (no idea why) it means get to the ground NOW. I’ve literally had to lay down sidewalk, in the grass and woke up with a whole bunch of fire Ant stings, lay down in the middle of Walmart/the dollar store/wherever I happened to be. It’s annoying. Well, having the seizures is annoying, I think the thing that is most annoying is that my mom and sister, even though this has been a thing since I was a child, still act like somehow I can control the things that are happening. Like when I had one, I kept walking into a wall because I went to get a soda Got disoriented and next thing I know my aid was taking me over to my bed because I’ve been having a seizure. My mom seriously sat there and asked me the next day. Why were you doing that, and I was like that’s a seizure. Her response, “but you kept doing it. “😂😂😂 you would think they would figure it out by now. My eight-year-old son even knows when they’re happening.
I have Left Temporal Lobe Epilepsy . It was caused by a serious abscess that was inoperable and left me with an infarction. The Neurosurgeon put me on Kepra and sent me to a Neurologist who does nothing except Epilepsy and other seizure disorders. He has been a godsend. I’m now taking Lamotrigene 200 mg. twice a day and things are well under control.As I watched your video, I saw myself. My wife and I are in the Keto diet for weight, but I was happy that it’s also good for Epilepsy. An added bonus!!👍😊
☆ solidarity from a left TLE
Finally diagnosed as an adult and trying to find medication that works.
Thinking of you all and know you can keep fighting! ♡
We are thinking of you too! I'm happy you finally got an official diagnosis and are starting to work towards finding something to control your seizures. You can always reach out to me at info@defeatingepilepsy.org if you need help finding any information.
My 75 y/o friend: turns head to left, feels like falling and fear, multicolored rhymetic flashing lights like a police car. Feels other people are in the room, hears them talking and occasionally sees them but doesnt recognize. Those are his common auras.
I am so sorry your friend is going through all of that. I have the auras where I feel extreme fear, so I can relate to how distressing it can be.
So far being controlled with Depakote. Thank you.
I’ve been doing keto for the last 5 years to great result
That is awesome! I'm so happy to hear you are having success with keto.
Keppra and tegretol are the best medicines I recommend, I literally have 1 or 2 auras per year.
I have never been on Keppra so I can't comment on what it is like. Tegretol helped to stop me from going into status epilepticus and has given me a good quality of life. I no longer have tonic-clonic or complex partial seizures. Once in a while I have the simple partial seizures, but it has been a while since I have had one.
Having temporal lobe epilepsy for 44 years, the auras are very scary, yet allows me time to prepare for a “possible” seizure. (about 50% of the time.)
They are very scary. When I was younger, I would become very frightened. Sometimes it would stop and I could calm down and other times I would go into a tonic-clonic seizure. In June it will be 43 years since my diagnosis.
I was told that I have a scar on my left temple lobe the dr suggested to have Lazer brain surgery, but it seems scary.
Any type of brain surgery can be scary because you don't know the outcome. I have seen some people never have a seizure again to some have complications. One of our interns wrote an article on laser brain surgery. Here is the link: www.defeatingepilepsy.org/epilepsy-surgical-series/laser-ablation/. I hope this information helps.
Takking Epnutin,keppra,topomax, have problem with speeking, even feel in by wallking and in my hand. Moove
I'm sorry you are going through all of this. That's a lot to deal with.
I have left temporal lobe epilepsy and when I have Ora’s my hole body falls asleep and I get a headache and I shake.
Headaches are very common. I would have a headache and then feel scared before having a seizure. There are many different types of auras that people can have with temporal lobe epilepsy.
Good day
My daughter having seizure..smack life's jerk..then after..that..my daughter..have long ..mind absence...1or 2 days .before back to normal....
On December 18 I had 4 attacks in, first time ever, coming from the temporal lobe, not even kepra o Trileptal has worked, honestly don't know what else to do. Anyone knows anything tha could work? I'm really about to give up
I'm sorry you are going through so much right now. Sadly with medication, it can take some time until the doctors find the right combination to get seizures under control due to all of us being different. Has the doctor done any tests to get a better idea of what is taking place? Also, if you know what your triggers are, that can help you develop coping skills as a way to reduce seizure activity. Mine are triggered from stress and changes in weather (bad thunderstorms).
@@DefeatingEpilepsyFoundation did an EEG for 3 weeks, didn't had one until they decided to change the electrodes, usually trigger by dejabu, stress, or family problems. The last ones happened while sleeping.
@@DefeatingEpilepsyFoundation thanks for the kind words!!!!
@@carlosguerrero5533 I'm sorry you are going through that. Family dysfunction had a very negative impact on my epilepsy years ago. I found one of the ways to reduce my seizures was working towards establishing healthy boundaries. It's easier said than done. I would keep a journal of everything that is going on that is triggering your seizures and what symptoms you are experiencing. That way the doctor can go over it. That way if they do not pick up a seizure on the EEG anytime soon, the doctor has an idea of what is going on and what resources could help you.
@@carlosguerrero5533 you are welcome!
I can several different types with mine. My order before a tonic clonic seizure is feeling like I’m on an elevator and reached the floor. I needed to be on where it goes slightly up and down. So going in elevators terrifies me even though logically I know it’s not my aura. The fear ones are random. They happened more and it’s annoying AF. You’re doing something and all the sudden you kinda feel dread and it culminates in a sort of startle panic thing for a few seconds and it’s done. One of the ones I absolutely hate is when I’m listening to someone and I recognize they are using words but they don’t make sense. Kinda like when you are reading a book get to the end of the page and realize you haven’t a clue what you just read… I read audiobooks so I have to run them back sometimes four or five times to what I last remember hearing. ITS ANNOYING. 😂 offertory ones are annoying cause they are never something nice. Yesterday while talking to my niece, I kept smelling apple cobbler. My sister’s first question was if it was a seizure… nope… I don’t get that lucky. I get to smell cat mess when those happen. The walking ones are weird. First, I am disoriented, I can tell im seeing things but they just don’t compute. Those are usually with the elevator feeling. The elevator feeling isn’t alway followed by a tonic clonic seizure. If it happens 5 times (no idea why) it means get to the ground NOW. I’ve literally had to lay down sidewalk, in the grass and woke up with a whole bunch of fire Ant stings, lay down in the middle of Walmart/the dollar store/wherever I happened to be. It’s annoying. Well, having the seizures is annoying, I think the thing that is most annoying is that my mom and sister, even though this has been a thing since I was a child, still act like somehow I can control the things that are happening. Like when I had one, I kept walking into a wall because I went to get a soda Got disoriented and next thing I know my aid was taking me over to my bed because I’ve been having a seizure. My mom seriously sat there and asked me the next day. Why were you doing that, and I was like that’s a seizure. Her response, “but you kept doing it. “😂😂😂 you would think they would figure it out by now. My eight-year-old son even knows when they’re happening.
Philippine.y daughter suffer this.condition..and long absences..condition..before and after siezure..