I haven't been diagnosed, I've had many MRIs EEG but it's shown normal. I have been prescribed gabapentin but it's cause a grand mal seizure from withdrawal. Then I was prescribed keppra. Which didn't do much in preventing. So all in all I've stopped taking any antidepressants or anti seizures. I just had an episode sometimes it's not as intense sometimes I get more than one. But I feel it coming on. Usually occurs when I'm tired not enough sleep, anxiety, or stress. Also near my menstrual cycle. Monthly for a week. It's 1-2min but afterwards I feel confused and exhausted with guilt or sadness. Lightheadedness.
I've been trying to watch what I eat. Ashwaganda herbal and Magnesium supplement. Chamomile tea. Chiropractor. Every time it occurs I feel broken.
Thank you for sharing your experiences. I've been researching seizures and there's only so much general scientific knowledge can tell someone. To hear it from someone who has truly been through this is both important and informative.
Thanks for sharing. I arrived here while searching for TLE. In my late 50s, I was diagnosed with TLE less than 2 weeks ago and I have been dealing with a variety of emotions. Even though I was diagnosed just recently, I believe that I have been having to deal with its effects for at least a decade, if not more. Apparently everyone's experience with TLR is different. Frankly, I think that my situation is less dramatic than what certain people have. Like most people, I feel it coming on in kind of a wave (here we go again…), kind of an anxiety floods over me, and sometimes I get this strange odor of roasted marshmallows. The thing that made me go visit a neurologist was my memory loss. I often forget things like people's names, recent events that I have attended, my way around, etc. For the moment, I was prescribed an anti-epileptic drug – at least it helps me sleep.
Oh my God! You described the EXACT feelings that I have during my attacks. I should discuss that with the doctor because they thought I have anxiety attacks. It's unbelievable how my symptoms are similar to yours. You discribed them very well that's something I fail to do. Thank you so much fro sharing
I thought it was still night terrors since i was a kid. They have got worse now, I am 42! I really appreciated your explaination of what its life. Rang a bell with me. Big time. Then reading the comments here I realise that I am experiencing the same as others here, I need to speak to a doctor !
Interesting. My auras felt like "The Shining", fear. Would last about 5 seconds and then the "event" (the phrase seizure is creepy) would begin. I am unaware of what happened so I know what happened by those who witnessed it. I would not fall, in a trance, smacking of lips. I had surgery in 2007 and have since been seizure free. Hippocampus ( left) was removed. The type was (use the old term) Complex Partial. For those with intractable epilepsy, I highly recommend surgery.
I have TLE and went undiagnosed for 6 years. I have an aoura to start with and it's usually a weird sense of smell, taste and feeling in my stomach. Then when the episode happens I can't communicate at all and if I can it'll be maybe one word answers. I've even tried texting during one and it comes out with a load of random things. I can even feel sick during one, and then after I usually get a headache and I'm usually quite tired. X
Yes to this!!! I have medial temporal lobe seizures that go bilateral when they are bad. They start in the hippocampus. Sometimes I lose consciousness.
Thank you so much. This experience is identical to episodes I've had in the past but no one believes me and I tend to undersell it when I call it 'deja vu'.
Thanks for sharing, Please consult with a doctor & do very thorough research before stopping medication, because I've heard if you keep it untreated it might progress. Wish you the best
I was absolutely delighted a grateful with the immediate healing I got through Dr Olojo channel on YouTube.Now I'm free from EPILEPSY and I’m happy Thanks Dr olojo #drolojo.
I was just recently diagnosed with tle it truly does suck cause nobody could figure out what was wrong with till I had an eeg and i had a seizure during the test sadly I have no warning on when it's going to happen it just does
I have pvnh and TLE with intractable complex partial seizures and status epilepticus. The Jamais vu feeling I get is usually the room opens up or closes down and i begin to forget where I’m at. I get the feeling that I’m like in a terrible nightmare and there is something not human that wants to harm me. I’ve also had a couple of ecstatic seizures where I felt like my body and minder were charging up and I was about to learn some crazy meaning to the universe and why were here and then I just black out and forget everything.
Thank you so much for courageously sharing your experiences with TLE.
As a lifelong Temporal Lobe epileptic myself due to an injury sustained at birth, I've spent 43 of my now 53 yearlong life on medication; so, I truly appreciate your reservations re anti-epileptic meds.
Stay strong and keep sharing with others as you bravely continue managing your life with TLE.
I have the same thing…word of advice from someone a bit older…i used to not want meds either…thought everything was ok…Fast-forward 20 yrs…im in hospital hooked up to EEG for a week…TLE an over time greatly affect your memory and overall quality of life the seizures can permantly scar your lobe and spread to the other lobe…my loss of ability to store memories is devastating to me as I don't remember special times with my kids…I would reconsider meds…speak with another neurologist…Im having surgery soon to remove the part of my brain where most of the activity originates….slow down…speak to a neurologist and research…damage to your brain is serious…this could lead eventuality to alzimers disease
This was an interesting watch. I was diagnosed with TLE as well and my experience is a bit different to yours. I have memory loss and also Alice in Wonderland syndrome so it feels like I'm growing as tall as a house and that became pretty dangerous because I'd find myself in weird places. I also feel so invincible, like a god of some sorts. Being from South Africa and mental health not being such a big thing over here, my parents believed I was possessed and would try to exorcise me (lol ridiculous I know). I spent most of my teen years and early 20s in and out of psych wards. I'm 30 now and only got my TLE diagnosis at 27. I wish I could do this without meds but the memory loss is a bit too hectic but I'm really glad you're doing fine without meds. Hopefully I'll get there one day as well. Best of luck to you
I’d love to hear more about the “inner trembling”, tongue sweeping, face tingling, and saliva. Do you have trouble waking up? I appreciate you describing your symptoms. 💕
I use rosewater to stop my auras from progressing when they come on. I love my complex partials, they are spiritual trances for me. I keep spray bottles of rosewater everywhere easy to reach. Keppra is the worst most disgusting med I've ever taken I wanted to DIE. I would rather have seizures every day than remain on Keppra. Rx Lamictal and cannabis and aromatherapy works wonders for me. Good luck to you sweetie.
Girl!!! Thank you for this video! Firstly I am South African too!! Yay hahaha but I also have TLE, I wanted to ask if you ever have emotional outbursts (screaming/crying uncontrollably/immense sadness/desire to get away?)
The herb you are using, whats it called & how is it spelt? I had an horrific experience with AEDs, made me feel like I was a caged animal & would hurt someone or myself, then I had a partial but painful statues for days.
So at first i thought this was demonic so I didnt tell my mama. But my mama witnessed me start to have’em. I feel when its comin, that dejavu feelin and feelin like somebody talkin to me, or a dream. Then i suddenly have a episode.. my mama say I start to talk nonsense like today she say i said i wanna buy her a cow🤦🏾♂️im on Keppra but its not workin. Whats helpin for yall? I need this to stop.. im prayin for all us man fr
I also experience these types of seizures I am finally getting proper treatment I am due tomorrow for a lumbar tap. It is hard dealing with seizures no one really knows what it feels like or how much it affects us. I am going to look into the alfalfa. Sending you healing hugs so happy I found your channel 💖
I haven't been diagnosed, I've had many MRIs EEG but it's shown normal. I have been prescribed gabapentin but it's cause a grand mal seizure from withdrawal. Then I was prescribed keppra. Which didn't do much in preventing. So all in all I've stopped taking any antidepressants or anti seizures.
I just had an episode sometimes it's not as intense sometimes I get more than one. But I feel it coming on. Usually occurs when I'm tired not enough sleep, anxiety, or stress. Also near my menstrual cycle. Monthly for a week.
It's 1-2min but afterwards I feel confused and exhausted with guilt or sadness. Lightheadedness.
I've been trying to watch what I eat. Ashwaganda herbal and Magnesium supplement. Chamomile tea. Chiropractor.
Every time it occurs I feel broken.
Thank you for sharing your experiences. I've been researching seizures and there's only so much general scientific knowledge can tell someone. To hear it from someone who has truly been through this is both important and informative.
I got unconscious
do you get really bad headaches with this? I feel a lot of this but i get what feels like a migraines with it
My mom delayed getting treatment for TLE and then developed dementia
Omg you explained it very well like i was not able to even explain how i fell my TLE to my consultant❤❤❤❤❤
Thanks for sharing. I arrived here while searching for TLE. In my late 50s, I was diagnosed with TLE less than 2 weeks ago and I have been dealing with a variety of emotions. Even though I was diagnosed just recently, I believe that I have been having to deal with its effects for at least a decade, if not more.
Apparently everyone's experience with TLR is different. Frankly, I think that my situation is less dramatic than what certain people have. Like most people, I feel it coming on in kind of a wave (here we go again…), kind of an anxiety floods over me, and sometimes I get this strange odor of roasted marshmallows. The thing that made me go visit a neurologist was my memory loss. I often forget things like people's names, recent events that I have attended, my way around, etc.
For the moment, I was prescribed an anti-epileptic drug – at least it helps me sleep.
Thanks again for sharing your experience.
Oh my God! You described the EXACT feelings that I have during my attacks.
I should discuss that with the doctor because they thought I have anxiety attacks.
It's unbelievable how my symptoms are similar to yours.
You discribed them very well that's something I fail to do.
Thank you so much fro sharing
I thought it was still night terrors since i was a kid. They have got worse now, I am 42! I really appreciated your explaination of what its life. Rang a bell with me. Big time. Then reading the comments here I realise that I am experiencing the same as others here, I need to speak to a doctor !
Thank you for sharing. I also have TLE on the left side but my symptoms are totally different for the most part. This is very interesting 🌸
Interesting. My auras felt like "The Shining", fear. Would last about 5 seconds and then the "event" (the phrase seizure is creepy) would begin. I am unaware of what happened so I know what happened by those who witnessed it. I would not fall, in a trance, smacking of lips. I had surgery in 2007 and have since been seizure free. Hippocampus ( left) was removed. The type was (use the old term) Complex Partial. For those with intractable epilepsy, I highly recommend surgery.
I feel I same thing no water in the mouth no shaking just visions until I come back I throw up
Welcome to my world, when you have a seizure it is like you are starting a new life.
Don't forget withdrawals from anything can give u a seizure
I have TLE and went undiagnosed for 6 years. I have an aoura to start with and it's usually a weird sense of smell, taste and feeling in my stomach. Then when the episode happens I can't communicate at all and if I can it'll be maybe one word answers. I've even tried texting during one and it comes out with a load of random things. I can even feel sick during one, and then after I usually get a headache and I'm usually quite tired. X
Yes to this!!! I have medial temporal lobe seizures that go bilateral when they are bad. They start in the hippocampus. Sometimes I lose consciousness.
Thank you so much. This experience is identical to episodes I've had in the past but no one believes me and I tend to undersell it when I call it 'deja vu'.
Thanks for sharing, Please consult with a doctor & do very thorough research before stopping medication, because I've heard if you keep it untreated it might progress.
Wish you the best
Thank you i am physician you really help me to understand the situation you r in ,wishing you good luck and happiness
I was absolutely delighted a grateful with the immediate healing I got through Dr Olojo channel on YouTube.Now I'm free from EPILEPSY and I’m happy
Thanks Dr olojo
#drolojo.
I have tle too I have subscribed to you it helps to connect I hope you get the answers about meds that can help. Thanks for sharing.
I was just recently diagnosed with tle it truly does suck cause nobody could figure out what was wrong with till I had an eeg and i had a seizure during the test sadly I have no warning on when it's going to happen it just does
I have pvnh and TLE with intractable complex partial seizures and status epilepticus. The Jamais vu feeling I get is usually the room opens up or closes down and i begin to forget where I’m at. I get the feeling that I’m like in a terrible nightmare and there is something not human that wants to harm me. I’ve also had a couple of ecstatic seizures where I felt like my body and minder were charging up and I was about to learn some crazy meaning to the universe and why were here and then I just black out and forget everything.
Thank you so much for courageously sharing your experiences with TLE.
As a lifelong Temporal Lobe epileptic myself due to an injury sustained at birth, I've spent 43 of my now 53 yearlong life on medication; so, I truly appreciate your reservations re anti-epileptic meds.
Stay strong and keep sharing with others as you bravely continue managing your life with TLE.
Stay blessed in Christ Jesus.
I have the same thing…word of advice from someone a bit older…i used to not want meds either…thought everything was ok…Fast-forward 20 yrs…im in hospital hooked up to EEG for a week…TLE an over time greatly affect your memory and overall quality of life the seizures can permantly scar your lobe and spread to the other lobe…my loss of ability to store memories is devastating to me as I don't remember special times with my kids…I would reconsider meds…speak with another neurologist…Im having surgery soon to remove the part of my brain where most of the activity originates….slow down…speak to a neurologist and research…damage to your brain is serious…this could lead eventuality to alzimers disease
This was an interesting watch. I was diagnosed with TLE as well and my experience is a bit different to yours.
I have memory loss and also Alice in Wonderland syndrome so it feels like I'm growing as tall as a house and that became pretty dangerous because I'd find myself in weird places. I also feel so invincible, like a god of some sorts.
Being from South Africa and mental health not being such a big thing over here, my parents believed I was possessed and would try to exorcise me (lol ridiculous I know).
I spent most of my teen years and early 20s in and out of psych wards.
I'm 30 now and only got my TLE diagnosis at 27.
I wish I could do this without meds but the memory loss is a bit too hectic but I'm really glad you're doing fine without meds.
Hopefully I'll get there one day as well.
Best of luck to you
Thank you for sharing this. I have TLE and it comes and goes it’s weird. It’s like a strong version of déjà vu.
I’d love to hear more about the “inner trembling”, tongue sweeping, face tingling, and saliva. Do you have trouble waking up? I appreciate you describing your symptoms. 💕
I use rosewater to stop my auras from progressing when they come on. I love my complex partials, they are spiritual trances for me.
I keep spray bottles of rosewater everywhere easy to reach. Keppra is the worst most disgusting med I've ever taken I wanted to DIE. I would rather have seizures every day than remain on Keppra. Rx Lamictal and cannabis and aromatherapy works wonders for me. Good luck to you sweetie.
I feel you
Disassociation?
Mydear I am also suffering from epilipesy disease last 21 years
Girl!!! Thank you for this video! Firstly I am South African too!! Yay hahaha but I also have TLE, I wanted to ask if you ever have emotional outbursts (screaming/crying uncontrollably/immense sadness/desire to get away?)
Thank you for sharing. I appreciate your openness and willingness to share your experiences.
The herb you are using, whats it called & how is it spelt? I had an horrific experience with AEDs, made me feel like I was a caged animal & would hurt someone or myself, then I had a partial but painful statues for days.
So at first i thought this was demonic so I didnt tell my mama. But my mama witnessed me start to have’em. I feel when its comin, that dejavu feelin and feelin like somebody talkin to me, or a dream. Then i suddenly have a episode.. my mama say I start to talk nonsense like today she say i said i wanna buy her a cow🤦🏾♂️im on Keppra but its not workin. Whats helpin for yall? I need this to stop.. im prayin for all us man fr
this is unrelated but you look like grimes (clair boucher)
Jesus Christ loves you
I also experience these types of seizures I am finally getting proper treatment I am due tomorrow for a lumbar tap. It is hard dealing with seizures no one really knows what it feels like or how much it affects us. I am going to look into the alfalfa. Sending you healing hugs so happy I found your channel 💖