@thamazingrach Thank you. The surgeries in Dec 2007 fixed the seizures for a very long time. They seem to be returning though. It's scaring the hell out of me. The last two days I had two VERY STRONG auras, but they didn't expand into a Grand Mal. Prior to surgery, my normal seizure wasn't a grand mal, but the "aura" which is a Complex Partial seizure. They would sometimes (but very rarely) expand into a grand mal. It did in this video because we needed them to and removed my medication.
wow...the nurse didnt know enough to take it off? thats scary! my husband has been having seizures alot lately no idea whats causing it. hes on 1000 mgs of Keppra twice a day. I starting having seizures the end of July and then in september he had his first...Kind of scary! I hope your doing better though!
i have 2 questions 1. whats that snoring like sound at 3:58? my next question is whats the differnce between non epiliptic sezuries and a epeleptic sezure my older brother had a sezuire when he was a baby and he does not have epelepsy sorry if i am spelling this wrong
@lhohneklab My best guess is the seizure (aura) starts about 1:45. In the hospital I usually hold an aura for 10 seconds before I do something. I can see my breathing become deeper at 1:45.
My usual seizures the auras in these videos. Most people do not know when I have a seizure. I have to tell you. I have complex partial epilepsy that generalize sometimes. I'm to alert the staff (press that button, tell the sitter) when I feel a seizure. Sometimes they generalize into this.
Watching these videos makes me feel like more people should be aware of just how serious epilepsy is.
I'm 18, and was diagnosed with Juvenile Myoclonic Epilepsy. For a few years I was having petite mals and noone noticed. In fact, my family often made fun of me. One day in computer class, I fell to the floor, went purple & blue, started making a weird screeching noise and began to seizure. I don't remember any of it, only waking up in emerg.
So I had my VEEG Jan. 25-29th and they said they were able to gather enough information to diagnose my seizures as being Atypical Juvenile Myoclonic Epilepsy. My Keppra has been increased twice since my Epileptologist appt. so now am taking 3000mg per day and was told to check back with them next week and depending on how my szs are doing will depend on if I have to add another med or not. I hope you are doing better. It feels great to know that I am not in any way crazy......^_^
Yay! Sorry it took so long to respond! I've been out of town. It's weird to say "Congratulations", but "Congratulations" on no longer feeling crazy. ;)
I'm on 4,000mg/day of Keppra, 550mg/day Lamictal. They took me off primadone because my current neurologist doesn't like it. I haven't noticed any change in seizures since it was removed. That's good.
They have now started adding Lamictal to my Keppra...I am supposed to gradually work up to 100mg twice daily. I follow up with my Epileptologist on March 25th. I do hope you are doing well....oh and I guess I am gonna have to call again about my video disk they sent me. First disk didn't work they were supposed to Fed-Ex me another one but haven't yet......
It's one of my "standard" (complex-partial) seizures (deja vu, dread) then it hits this point of no return. I push the button when I have the standard seizure. Then, woah. The way I describe it to people is it's like listening to a beautiful symphony and suddenly one of the low-tone instrumets switches key and it darkens. The drop off means no return. My father has pulled me out of the bathtub more times than I can count. Yike.
I am so sorry that neither the sitter nor the nurse took your CPAP off. It was obvious that it should have been taken off as it was only keeping your airway open while you slept. The nurse should have known the difference. I do hope you are currently doing well. I have Epilepsy too and go to see the Epileptologist for the first time on January 4th, 2010. I am greatly looking forward to the appt. as my seizures are not controlled at all right now. Thanks for posting this video!!
I am doing very well. My epileptologist tells me I have not had a seizure since surgery, but I disagree. I think I had three through June 2008. I have episodes now every so often, but she says it is anxiety. I suppose she's right, as I don't have my distinctive "seizure headache" after these episodes. They feel like seizures, though!
Good luck with the Epileptologist! What city do you live in? Where is your appt?
I live in Ocala, Florida and my appointment is in Gainesville, Florida at Shands at University of Florida. I have videos of some of my seizures however I have been unable to catch any of my grand mals on video as they only happen during sleep. I say you know your body better than anyone else and if you feel you are still having szs you could very well still be having szs.....stay on top of it.....
I will. Thank you very much for acknowledging that. I've felt crazy lately because everyone, in all directions, is telling me it's "all in my head," so to speak. Then they told me that before I began my testing at Emory. Before Emory no test or imaging showed anything. I don't normally have Grand Mals. When I find the videos of my standard seizures, I'll post them.
I had to get someone at work to finish making a drink the other day because of an event. I work at Starbucks. Ugh.
Thank you. I saw a few of your videos. Seizures are a real burden. I hope you feel okay. How are you?
I don't know how much to expect or what to feel now. Part of this could be because my new health insurance. They cover generics only, which is dangerous for seizures. I've been on generic Lamictal for quite a while, but recently switched to generic Keppra as well. Insurance will cover brand, but only 60% or something. That means I would pay $250/mo mail order on brand Keppra.
Yeah insurance companies can be a real pain. I was supposed to be on lamictal xr, but when I went to buy it my insurance wouldn't cover hardly any of the price. So now am on generic keppra and it only costs me $37.34 per month for 60 500 mg pills....much better price wise but as you can see from my videos I still have quite a few szs....
So I saw my Epileptologist for the first time yesterday and she increased my Keppra to 1500 mg per day, added vitamin B6 for my mood swings, and ordered a VEEG. I go in for the VEEG on Jan. 25th for approximately 3-5 days. She is also talking about ordering another MRI depending on what she sees when I get her the CD-ROM from my last MRI I had in like August.
Sometimes the EEG people will give you a DVD of the seizures you have during your VEEG. Ask. It was the EEG people who gave me this video. Worst they can do is say no.
Hey thanks for letting us know this. I will ask when my child goes in sometime this summer. She might be having brain surgery due to tubers in her brain. Hope things get better for you!
So scary. Sorry you have to deal with this.
thamazingrach 1 month ago
@thamazingrach Thank you. The surgeries in Dec 2007 fixed the seizures for a very long time. They seem to be returning though. It's scaring the hell out of me. The last two days I had two VERY STRONG auras, but they didn't expand into a Grand Mal. Prior to surgery, my normal seizure wasn't a grand mal, but the "aura" which is a Complex Partial seizure. They would sometimes (but very rarely) expand into a grand mal. It did in this video because we needed them to and removed my medication.
szrgirl 1 month ago
wow...the nurse didnt know enough to take it off? thats scary! my husband has been having seizures alot lately no idea whats causing it. hes on 1000 mgs of Keppra twice a day. I starting having seizures the end of July and then in september he had his first...Kind of scary! I hope your doing better though!
epicchickstix 3 months ago in playlist More videos from szrgirl
@DRnikkiHOUSE I hope your medical issues have resolved! Thank you for saying how obvious it is. I couldn't believe it when I saw the video.
szrgirl 6 months ago
how does the aura feels like?
monjanse 1 year ago
i have 2 questions 1. whats that snoring like sound at 3:58? my next question is whats the differnce between non epiliptic sezuries and a epeleptic sezure my older brother had a sezuire when he was a baby and he does not have epelepsy sorry if i am spelling this wrong
bowlchamp411 1 year ago
which moment does it exactly start?
lhohneklab 1 year ago
@lhohneklab My best guess is the seizure (aura) starts about 1:45. In the hospital I usually hold an aura for 10 seconds before I do something. I can see my breathing become deeper at 1:45.
My usual seizures the auras in these videos. Most people do not know when I have a seizure. I have to tell you. I have complex partial epilepsy that generalize sometimes. I'm to alert the staff (press that button, tell the sitter) when I feel a seizure. Sometimes they generalize into this.
szrgirl 1 year ago
@szrgirl ok thank you i wish all the best for you!!
lhohneklab 1 year ago
what is the ayra before a seizure?
monjanse 1 year ago
Seizures totally suck.. I'm so sick of them. Are yours under contorl?
Seizstore 1 year ago
Watching these videos makes me feel like more people should be aware of just how serious epilepsy is.
I'm 18, and was diagnosed with Juvenile Myoclonic Epilepsy. For a few years I was having petite mals and noone noticed. In fact, my family often made fun of me. One day in computer class, I fell to the floor, went purple & blue, started making a weird screeching noise and began to seizure. I don't remember any of it, only waking up in emerg.
I wish, truly that people understood epilepsy.
itsjustjennad 1 year ago
What's cpap?
fritzeugen02 2 years ago
So I had my VEEG Jan. 25-29th and they said they were able to gather enough information to diagnose my seizures as being Atypical Juvenile Myoclonic Epilepsy. My Keppra has been increased twice since my Epileptologist appt. so now am taking 3000mg per day and was told to check back with them next week and depending on how my szs are doing will depend on if I have to add another med or not. I hope you are doing better. It feels great to know that I am not in any way crazy......^_^
SalemRose88 2 years ago
Yay! Sorry it took so long to respond! I've been out of town. It's weird to say "Congratulations", but "Congratulations" on no longer feeling crazy. ;)
I'm on 4,000mg/day of Keppra, 550mg/day Lamictal. They took me off primadone because my current neurologist doesn't like it. I haven't noticed any change in seizures since it was removed. That's good.
szrgirl 2 years ago
They have now started adding Lamictal to my Keppra...I am supposed to gradually work up to 100mg twice daily. I follow up with my Epileptologist on March 25th. I do hope you are doing well....oh and I guess I am gonna have to call again about my video disk they sent me. First disk didn't work they were supposed to Fed-Ex me another one but haven't yet......
SalemRose88 2 years ago
Some hospital people really suck!
kittypride2 2 years ago
What kind of Aura do you have before it starts?
kittypride2 2 years ago
It's one of my "standard" (complex-partial) seizures (deja vu, dread) then it hits this point of no return. I push the button when I have the standard seizure. Then, woah. The way I describe it to people is it's like listening to a beautiful symphony and suddenly one of the low-tone instrumets switches key and it darkens. The drop off means no return. My father has pulled me out of the bathtub more times than I can count. Yike.
szrgirl 2 years ago
I am so sorry that neither the sitter nor the nurse took your CPAP off. It was obvious that it should have been taken off as it was only keeping your airway open while you slept. The nurse should have known the difference. I do hope you are currently doing well. I have Epilepsy too and go to see the Epileptologist for the first time on January 4th, 2010. I am greatly looking forward to the appt. as my seizures are not controlled at all right now. Thanks for posting this video!!
SalemRose88 2 years ago
I am doing very well. My epileptologist tells me I have not had a seizure since surgery, but I disagree. I think I had three through June 2008. I have episodes now every so often, but she says it is anxiety. I suppose she's right, as I don't have my distinctive "seizure headache" after these episodes. They feel like seizures, though!
Good luck with the Epileptologist! What city do you live in? Where is your appt?
szrgirl 2 years ago
I live in Ocala, Florida and my appointment is in Gainesville, Florida at Shands at University of Florida. I have videos of some of my seizures however I have been unable to catch any of my grand mals on video as they only happen during sleep. I say you know your body better than anyone else and if you feel you are still having szs you could very well still be having szs.....stay on top of it.....
SalemRose88 2 years ago 2
I will. Thank you very much for acknowledging that. I've felt crazy lately because everyone, in all directions, is telling me it's "all in my head," so to speak. Then they told me that before I began my testing at Emory. Before Emory no test or imaging showed anything. I don't normally have Grand Mals. When I find the videos of my standard seizures, I'll post them.
I had to get someone at work to finish making a drink the other day because of an event. I work at Starbucks. Ugh.
szrgirl 2 years ago
I am sorry to hear that....I hope things get better for you.
SalemRose88 2 years ago
Thank you. I saw a few of your videos. Seizures are a real burden. I hope you feel okay. How are you?
I don't know how much to expect or what to feel now. Part of this could be because my new health insurance. They cover generics only, which is dangerous for seizures. I've been on generic Lamictal for quite a while, but recently switched to generic Keppra as well. Insurance will cover brand, but only 60% or something. That means I would pay $250/mo mail order on brand Keppra.
szrgirl 2 years ago
Yeah insurance companies can be a real pain. I was supposed to be on lamictal xr, but when I went to buy it my insurance wouldn't cover hardly any of the price. So now am on generic keppra and it only costs me $37.34 per month for 60 500 mg pills....much better price wise but as you can see from my videos I still have quite a few szs....
SalemRose88 2 years ago
So I saw my Epileptologist for the first time yesterday and she increased my Keppra to 1500 mg per day, added vitamin B6 for my mood swings, and ordered a VEEG. I go in for the VEEG on Jan. 25th for approximately 3-5 days. She is also talking about ordering another MRI depending on what she sees when I get her the CD-ROM from my last MRI I had in like August.
SalemRose88 2 years ago
Sometimes the EEG people will give you a DVD of the seizures you have during your VEEG. Ask. It was the EEG people who gave me this video. Worst they can do is say no.
szrgirl 2 years ago
Thanks I will ask if they can do that when I go in for the VEEG... :)
SalemRose88 2 years ago
Hey thanks for letting us know this. I will ask when my child goes in sometime this summer. She might be having brain surgery due to tubers in her brain. Hope things get better for you!
MesoFrog 2 years ago