I know how you feel man I have had epilepsy senses I was 6 years old and it got worse after I hAd a tumor taken out of my left temporal lobe. The scaring caused damages and now I have larger episode. Like the saying goes life sucks then you die
Hi, First of all well done to you for making a good video and explaining about your Eplilepsy.....not many people would do that!! I also have it and have done since I was 17 and listening to you was like listening to my own story as I do exactly the same. The only difference is I do take medication even though it hasn't fully controlled them. I just hate the way it affects my life so much especially with regards to things like work and driving BUT I try to enjoy life. Keep smiling!! x
I'm 23 and have had epilepsy my entire life. I feel exactly the same and it makes me angry that there is a long span of time that I don't remember. Once I had one while I was in the shower and my body covered the drain and my face was in the water at the bottom of the shower. I'm lucky my sister heard me.
Everytime I have one it's like a punch in the face. I have to go back to square one.
@Niceboy3377 Thanks for writing that comment - and a very important one that people don't often dare ask. I have total amnesia during seizures, so I don't remember any pain. I'm told that I don't appear to be in pain during the convulsions, despite the strange yelling and foaming at mouth. For a few hours afterwards, it's like I have a natural anaesthetic which wears off. Pain then becomes apparent - bitten tongue, bruises and zero energy. I guess everyone is different in that respect.
A huge, huge thank you to the people that have kindly left messages on this video. I have found that I have to spend a lot of time using public transport and hence do not get much time to answer people individually - much as I would like to. Nevertheless, your comments have been very inspiring: I feel very grateful for them.
hey im 13 and ive had siezures since 2nd grade . when i have seizure i cannot use my arms. i cant talk. and i can barely move . but i only have seizures when i am asleep and my my family knows when i have a seizure bc they can hear me making moaning noises and hear me bumping into the walls while im trying to walk to their room . but the siezures stopped about 3 years ago and i havent had one since . i also got pills. i had to take tham after the siezure ended
Terrific Tonya offering you support and love from America. I was born with a rare brain abnormality resulting in over 150 seizures a month for 43 years. Nov 2010, seizures stopped altogether for 5 months(reason unknown). I appreciate this video and your bravery in coming forward in telling your story. Hold onto Hope and know you are not alone. - Terrific Tonya Heathco, National Seizure Disorders Foundation , Tennessee USA
I have epilepsy too and I have had them for 42 years. When I have a seizures I get no warning at all and then it is like I do not exist. I can not feel the jerking. It is peaceful and I have no concept of time, until I come out of the seizure. It usually take me about a day just to sleep it off. It is very painful and I get confused and exhausted.
In June I had a tonic clonic at night. It was scary as hell waking up on the floor, in tremendous pain because I bashed my face on the floor, and no clue whatsoever what happened. Boy did I feel beat up, emotionally and physically. Not to mention depressed for hours afterward.
My face was bruised up. I think it was because the doc is tapering me off Tegretol. Only take Lamictal and Klonopin
ya temperal lobe epelipsy sucks i started having them when i was 24. No reason at all .My longest epesode was 45-75 seconds.. where i blacked out if you guys know what i mean
I'm 44 and I just started having seizures. I have been having dejavu auras for the last 10 years. I have had a total of 3 seizures, in the last 5 months. The last time I stood up next to my bed and fell against the wall. I hit my noseHARD and woke up in a big puddle of blood.I had an MRI and EEG and they showed nothing wrong.Now I'm on Keppra. Pretty scarey
Thank you for taking the time to write that message to me. I appreciate that it is a frightening experience, being diagnosed with an illness where you lose control of your brain - your memories and thoughts being 'switched off' for a time... More frightening I think is the way that other people respond to this and then having to take on board THEIR fear about something that you have done when you have utterly no memory of that event or any 'say' in the matter.
The more I find out epilepsy, the more I appreciate that we know very little about it. Medics want to prescribe an instant 'cure' and do so through pills which can work very well in some cases - and for those cases, I am very pleased. However, in about 30% of cases, these pills do NOT work and have abysmal side-effects. I was one of those. Please have the courage to talk about your experiences and don't allow fear to overcome your condition. It IS scarey - share this, discuss it and stay strong.
@tegid247 I hear you. However in our society epilepsy is treated as a disorder, but what if it is not a disorder? What if epilepsy has a true benefit. I have heard i n some cultures epileptics are viewed as shamans.
what meds were you taking? If it was primarily a drug for partial seizures, that could cause tonic-clonic seizures worse, ask for MD about this. Best of luck and TY for being brave enough to share your experiences:)
Thank you for posting this. I had a tonic-clonic seizure at work about 2 months ago. I'm still trying to figure out what happened and your account helps a lot.
Thank you for posting this. I was recently diagnosed with left TLE. I had been taking Tegretol for years because an EEG showed "a little something" but never given a definitive diagnosis until a month or so when I had an abnormal EEG.
I have tempal lobe epilepsy I had about 7 to 8 absent fits yesterday and it totally scared the hell out of me I saw a surgeon last year to whom sent me for tests then around the same time the consultant neurologist retired so there is not one where I live at present also I saw resident neurologist he said I was not on any medication for it and I would be having a far more greater life than I am now so I am told I am totally freaked out by it getting worse. I I also read somewhere you can con't
Love your vid, it says all the things I wanna say about my Epilepsy. Thanks man ^^
I'm gonna make a necklace with information on it and wear when I'm out, and keep information in my wallet and such.
I'm not afraid of having outdoors seizures, it's not like I can controll them, and I still need to go out, so I'll prepere as good as I can and go with that.
Nice video. I have tonic-clonic seizures as well (generalized). I've been planning to make a similar video recently because I think that the more we educate others about epilepsy, the less everyone will be hesitant to talk about it. Wish you the best.
I know how you feel man I have had epilepsy senses I was 6 years old and it got worse after I hAd a tumor taken out of my left temporal lobe. The scaring caused damages and now I have larger episode. Like the saying goes life sucks then you die
15charlee 6 days ago
Hi, First of all well done to you for making a good video and explaining about your Eplilepsy.....not many people would do that!! I also have it and have done since I was 17 and listening to you was like listening to my own story as I do exactly the same. The only difference is I do take medication even though it hasn't fully controlled them. I just hate the way it affects my life so much especially with regards to things like work and driving BUT I try to enjoy life. Keep smiling!! x
sippikatz 2 months ago
I'm 23 and have had epilepsy my entire life. I feel exactly the same and it makes me angry that there is a long span of time that I don't remember. Once I had one while I was in the shower and my body covered the drain and my face was in the water at the bottom of the shower. I'm lucky my sister heard me.
Everytime I have one it's like a punch in the face. I have to go back to square one.
WeaponXXIV 6 months ago
r seizures painful
Niceboy3377 7 months ago
@Niceboy3377 Thanks for writing that comment - and a very important one that people don't often dare ask. I have total amnesia during seizures, so I don't remember any pain. I'm told that I don't appear to be in pain during the convulsions, despite the strange yelling and foaming at mouth. For a few hours afterwards, it's like I have a natural anaesthetic which wears off. Pain then becomes apparent - bitten tongue, bruises and zero energy. I guess everyone is different in that respect.
tegid247 7 months ago
@tegid247 ohhhh i dont wanna have one especially tonic-clonics
Niceboy3377 7 months ago
A huge, huge thank you to the people that have kindly left messages on this video. I have found that I have to spend a lot of time using public transport and hence do not get much time to answer people individually - much as I would like to. Nevertheless, your comments have been very inspiring: I feel very grateful for them.
tegid247 8 months ago
hey im 13 and ive had siezures since 2nd grade . when i have seizure i cannot use my arms. i cant talk. and i can barely move . but i only have seizures when i am asleep and my my family knows when i have a seizure bc they can hear me making moaning noises and hear me bumping into the walls while im trying to walk to their room . but the siezures stopped about 3 years ago and i havent had one since . i also got pills. i had to take tham after the siezure ended
TheDarkhorse228 8 months ago
Terrific Tonya offering you support and love from America. I was born with a rare brain abnormality resulting in over 150 seizures a month for 43 years. Nov 2010, seizures stopped altogether for 5 months(reason unknown). I appreciate this video and your bravery in coming forward in telling your story. Hold onto Hope and know you are not alone. - Terrific Tonya Heathco, National Seizure Disorders Foundation , Tennessee USA
NSDFbyTerrificTonya 9 months ago
I have epilepsy too and I have had them for 42 years. When I have a seizures I get no warning at all and then it is like I do not exist. I can not feel the jerking. It is peaceful and I have no concept of time, until I come out of the seizure. It usually take me about a day just to sleep it off. It is very painful and I get confused and exhausted.
duvexy 10 months ago
i had one that took longer than 5 minutes
but lucky me, i was in the hospital
and after that i came in a clinick for people with epilepsy
and it sucks!
absfan16 1 year ago
In June I had a tonic clonic at night. It was scary as hell waking up on the floor, in tremendous pain because I bashed my face on the floor, and no clue whatsoever what happened. Boy did I feel beat up, emotionally and physically. Not to mention depressed for hours afterward.
My face was bruised up. I think it was because the doc is tapering me off Tegretol. Only take Lamictal and Klonopin
ReviewCam 1 year ago
i take zonisamide to treat my condition
Charlesmillz 1 year ago
ya temperal lobe epelipsy sucks i started having them when i was 24. No reason at all .My longest epesode was 45-75 seconds.. where i blacked out if you guys know what i mean
Charlesmillz 1 year ago
I'm 44 and I just started having seizures. I have been having dejavu auras for the last 10 years. I have had a total of 3 seizures, in the last 5 months. The last time I stood up next to my bed and fell against the wall. I hit my noseHARD and woke up in a big puddle of blood.I had an MRI and EEG and they showed nothing wrong.Now I'm on Keppra. Pretty scarey
milojams 1 year ago
Thank you for taking the time to write that message to me. I appreciate that it is a frightening experience, being diagnosed with an illness where you lose control of your brain - your memories and thoughts being 'switched off' for a time... More frightening I think is the way that other people respond to this and then having to take on board THEIR fear about something that you have done when you have utterly no memory of that event or any 'say' in the matter.
tegid247 1 year ago
The more I find out epilepsy, the more I appreciate that we know very little about it. Medics want to prescribe an instant 'cure' and do so through pills which can work very well in some cases - and for those cases, I am very pleased. However, in about 30% of cases, these pills do NOT work and have abysmal side-effects. I was one of those. Please have the courage to talk about your experiences and don't allow fear to overcome your condition. It IS scarey - share this, discuss it and stay strong.
tegid247 1 year ago
@tegid247 I hear you. However in our society epilepsy is treated as a disorder, but what if it is not a disorder? What if epilepsy has a true benefit. I have heard i n some cultures epileptics are viewed as shamans.
duvexy 10 months ago
what meds were you taking? If it was primarily a drug for partial seizures, that could cause tonic-clonic seizures worse, ask for MD about this. Best of luck and TY for being brave enough to share your experiences:)
ReviewCam 1 year ago
Thank you for posting this. I had a tonic-clonic seizure at work about 2 months ago. I'm still trying to figure out what happened and your account helps a lot.
deathweaselx86 1 year ago
Thank you for posting this. I was recently diagnosed with left TLE. I had been taking Tegretol for years because an EEG showed "a little something" but never given a definitive diagnosis until a month or so when I had an abnormal EEG.
ReviewCam 1 year ago
could you specify what medicine you took to treat your epilepsy?
loamobn 1 year ago
I have tempal lobe epilepsy I had about 7 to 8 absent fits yesterday and it totally scared the hell out of me I saw a surgeon last year to whom sent me for tests then around the same time the consultant neurologist retired so there is not one where I live at present also I saw resident neurologist he said I was not on any medication for it and I would be having a far more greater life than I am now so I am told I am totally freaked out by it getting worse. I I also read somewhere you can con't
DanielR305 2 years ago
Love your vid, it says all the things I wanna say about my Epilepsy. Thanks man ^^
I'm gonna make a necklace with information on it and wear when I'm out, and keep information in my wallet and such.
I'm not afraid of having outdoors seizures, it's not like I can controll them, and I still need to go out, so I'll prepere as good as I can and go with that.
Pumanic 2 years ago
Nice video. I have tonic-clonic seizures as well (generalized). I've been planning to make a similar video recently because I think that the more we educate others about epilepsy, the less everyone will be hesitant to talk about it. Wish you the best.
TonicClonic88 2 years ago
Anthony Peake has some good videos that touch on temporal lobe epilepsy, dont know if it will help greatly but he is very informative.
search youtube for cheating the ferryman of anthony peake.
all the best
ekahamsa 2 years ago
Good vid, Im a TLE too bro. Im hanging out for self driving cars.
Interactivesystems 2 years ago