Hi.. I'm new in here..
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dfwtexas
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No, in fact he only had 2 seizures in his life, one grande mal and one tonic. He was on meds for few years and they were able to wean him off and he has never had another seizure. He is now 76 years old. They suspected a change in his blood pressure meds brought the seizures on.
I started having petit mals last year at age 47. I had trauma injury to my arm 3 years ago. After a lot of infections, multiple surgeries, seizures started. I have a metal plates and rod in my arm where it was rebuilt, so I understand your pain. They think either the infections or the antibotics did neurologic damage that started my seizures.
I started having petit mals last year at age 47. I had trauma injury to my arm 3 years ago. After a lot of infections, multiple surgeries, seizures started. I have a metal plates and rod in my arm where it was rebuilt, so I understand your pain. They think either the infections or the antibotics did neurologic damage that started my seizures.
I had my first one in 2001.. got on keppra, first 500 mg twice a day still have little episodes so the doc. put me on 750 mg.. It was fine till january this yr. when the doc. say try to reduce back to 500 mg & see what happen , by march 28 got a seizure during sleep, so went back to 750mg... by june 4th got the one that broke my shoulder... got surgery 12 days ago... i'm doing fine, now I'm on 1000mg twice a day.. but still worried about getting another one... I've appointment w/ neurologist in few months... they want my shoulder to get better so they can do MRI , plus they want to know how I react to my new dose... anyway.... still worried.. I'm 42 yrs. old. and I was happy with my "seizure free" for almost 8 yrs. 'till we reduce the meds... you think that is 100% the cause of a new seizure?..
dfwtexas
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I started on 500 mg (twice a day) of Keppra when I got diagnosed and then changed to 750mg three months later, as I was still having some seizures. I was doing really good, seiziure free for several months...but then 2 months ago I had a small complex at work and then had one during my sleep. I don't remember the nighttime one...but my son said my dog that sleeps with me went crazy barking and went and got him. By the time my son came into my room...I was on the floor holding my head. Doc upped me to 1000 mg after that. He said my blood level prior to the last 2 seizures were good. At this point, he is going to leave me on the 1000 mg for 5 more months. He said he wants to decrease me back to 750 mg if I can remain seizure free for the next five months. Although, I would like to have the meds decreased...it does make me nervous to change the meds. It's hard to say if your change in meds is related or is it something else going on in your life
sooo... when you got your seizure... you fall of the bed,? or you get up after the seizure..and fall? you said you have small episodes during daytime... how is it... can you explain what you feel..?.. have you get any test done..? do you take Keppra or generic...? i was on the name brand, and at the hospital they start gave me generic.... so far no diference...
dfwtexas
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I think I got out of the bed on my own...but not sure. My son said I was sitting on the floor, holding my head saying I was not feeling right. Had terrible headache and was sore in my back in shoulders.
When I first started having seizures, they did an EEG and MRI. Said EEG shows seizure activity.
I am on brand name only. I tried the generic in December and started having terrible mirgraines and got off it after 2 weeks. I wonder if yours are related to generics. It's pretty common on here that generic causes migrains, seizures, etc.
Most of my seizures have been at work...I am photosentive and I think it may be the lights. I remember my eyes rolling into the back of my head and next thing I knew I was coming out of it. I think it was much shorter than the complex partials I had before. Those times, I would just black out...but I would keep doing whatever I was doing at the time, eating, keying on the computer, etc...just not a very good job at it!
When I first started having seizures, they did an EEG and MRI. Said EEG shows seizure activity.
I am on brand name only. I tried the generic in December and started having terrible mirgraines and got off it after 2 weeks. I wonder if yours are related to generics. It's pretty common on here that generic causes migrains, seizures, etc.
Most of my seizures have been at work...I am photosentive and I think it may be the lights. I remember my eyes rolling into the back of my head and next thing I knew I was coming out of it. I think it was much shorter than the complex partials I had before. Those times, I would just black out...but I would keep doing whatever I was doing at the time, eating, keying on the computer, etc...just not a very good job at it!
right after my first seizure on 2001, they did MRI & ECG, showing nothing at all, so the only thing the doc. could come up with was, maybe I have a small scare on my brain due to a head contusion when I was 9 yr. old, and now is starting to gave me problems. Anyways I'm going to get more test done soon... I just praying not to have anything else since my arm still so fragile, another seizure could be catastrophic.... remember my surgery was on june 11..
dfwtexas
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Yeah, when I had to tell my trauma orthopedic I had E, his face dropped. After rebuilding my arm over 2 years, I knew he was thinking "Don't screw up the arm again!"
Best of luck. I have heard that it is not unusally for seizure activity not to show up on the EEG. I have found that lack of sleep is my biggest trigger. So I am very strict on myself about going to bed early, napping on the weekends, etc. Are you keeping a journal so you can determine if you have any triggers.
Best of luck. I have heard that it is not unusally for seizure activity not to show up on the EEG. I have found that lack of sleep is my biggest trigger. So I am very strict on myself about going to bed early, napping on the weekends, etc. Are you keeping a journal so you can determine if you have any triggers.
no..I haven't kept records, because I have only one grand mal seizure and after that I was seizure free for 8 ys. 'till we reduce keppra, but I was very stress out right before my last one, you know... a lots of things going on and my head was spinning..... thats the only thing I can come up with..
hello
sorry I seemed to not welcomed you before...........*blushing*
I, too, have nocturnal seizures, and some of them, OK, most of them, in the past have been tonic clonic (grand mal).
I have broken many bones, bitten clear through my tongue on both sides countless times, and we won't discuss how many vertebrae in my neck and back have been broken or damaged from the seizures---actually, now that I think about it, there are only 6 that are NOT damaged/broken. BLECK.
And yes, I fall out of bed, I break furniture, including the bed (repeatedly). I've had multiple EEGs and video EEGs as well as portable EEGs done for 4 to 5 days at a time. I've been diagnosed recently with a 3d and 4th type of epilepsy....so now I have tonic clonic, myoclonic, electrographic and focal seizures in the left temporal lobe.........all of them nocturnal.
My E started when I was a baby.....when I was less than a year old. I've had it for over 43 years now, and I've been on close to 20 meds now. Right now, I am on a combo of Carbatrol, Klonopin (actually the generic--this is the ONLY generic I can use), Topamax (mainly for migraines, but also has a bit of seizure control) and I'm titrating back up on Lamictal after having been off it for several years.
Feel free to check out all the nooks and crannies here....we have plenty of neat things like the Library and the Kitchen which are full of information. The Padded Room is great for when you need to vent, so feel free.
So sit down, kick up your feet, and relax. Hopefully someone will bring around some decent coffee or tea, as I keep on burning mine.....
Welcome, and take care.
Meetz
:rock:
sorry I seemed to not welcomed you before...........*blushing*
I, too, have nocturnal seizures, and some of them, OK, most of them, in the past have been tonic clonic (grand mal).
I have broken many bones, bitten clear through my tongue on both sides countless times, and we won't discuss how many vertebrae in my neck and back have been broken or damaged from the seizures---actually, now that I think about it, there are only 6 that are NOT damaged/broken. BLECK.
And yes, I fall out of bed, I break furniture, including the bed (repeatedly). I've had multiple EEGs and video EEGs as well as portable EEGs done for 4 to 5 days at a time. I've been diagnosed recently with a 3d and 4th type of epilepsy....so now I have tonic clonic, myoclonic, electrographic and focal seizures in the left temporal lobe.........all of them nocturnal.
My E started when I was a baby.....when I was less than a year old. I've had it for over 43 years now, and I've been on close to 20 meds now. Right now, I am on a combo of Carbatrol, Klonopin (actually the generic--this is the ONLY generic I can use), Topamax (mainly for migraines, but also has a bit of seizure control) and I'm titrating back up on Lamictal after having been off it for several years.
Feel free to check out all the nooks and crannies here....we have plenty of neat things like the Library and the Kitchen which are full of information. The Padded Room is great for when you need to vent, so feel free.
So sit down, kick up your feet, and relax. Hopefully someone will bring around some decent coffee or tea, as I keep on burning mine.....
Welcome, and take care.
Meetz
:rock:
Meetz, Thanks for the info... you know... right now I'm like a sponge, absorbing every little piece of info related to E. For me, I think is different, because I didn't born with it, and 8 ys ago I had a single episode (grand mal) actually right before that I space out three times, the first one very short, and then longer and longer... the last one I was driving, and space out, my girlfriend noticed and try to get my to pull over, but I was unable to do it, why...? I guess my brain couldn't process the situation, believe or not I drove on the freeway for like 3 miles, like a robot, change lines, use my signal, change freeway everything the way we always do until finally I pull over and start to come out of "whatever" it is....
After my grand mal seizure got medicated and never, ever again feel anything at all, soo for me, was something that I got, got medication, and that's it..! never worried again... I went back having normal life like everybody else.. but now, things changed, I'm scared, worried, and wondering how my life is going to be from now on.... I'm a very active guy, always doing things arround the house, working during the week, and I'm happy that way... and now I feel like I become a drag to my family... I'm seating unable to do much due to my fracture, and doctors say I have at lease for 8 monts. that I will deal with...! but.. do my seizures continue..? they will became worst..? So far I got 3.. in all of them, I get very rigid, don't jerk, and bite my tong badly in my first one only, but the last one reap my shoulder, it is weird...!! I didn't jerk..... just extremely rigid with my arms up to the front and my head back.. I don't know....!!!
onder:
Another thing next tuesday I have appointment w/neurologist they want to do "sleep depraved EEG", never done it before, I worried because, lack of sleep and stress could trigger my last seizure,... soo yeahhh.... thats how I feel.....
I'm trying to figure it out how to stay awake all night... my painkillers make me sleepy...
Thanks again.... and I'm sorry if I 'talk' to much......
After my grand mal seizure got medicated and never, ever again feel anything at all, soo for me, was something that I got, got medication, and that's it..! never worried again... I went back having normal life like everybody else.. but now, things changed, I'm scared, worried, and wondering how my life is going to be from now on.... I'm a very active guy, always doing things arround the house, working during the week, and I'm happy that way... and now I feel like I become a drag to my family... I'm seating unable to do much due to my fracture, and doctors say I have at lease for 8 monts. that I will deal with...! but.. do my seizures continue..? they will became worst..? So far I got 3.. in all of them, I get very rigid, don't jerk, and bite my tong badly in my first one only, but the last one reap my shoulder, it is weird...!! I didn't jerk..... just extremely rigid with my arms up to the front and my head back.. I don't know....!!!
onder:Another thing next tuesday I have appointment w/neurologist they want to do "sleep depraved EEG", never done it before, I worried because, lack of sleep and stress could trigger my last seizure,... soo yeahhh.... thats how I feel.....
I'm trying to figure it out how to stay awake all night... my painkillers make me sleepy...
Thanks again.... and I'm sorry if I 'talk' to much......
dfwtexas
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When I first started having seizures, I would have "functional blackouts", I thought maybe it was sleep disorder. I would leave my office in downtown Dallas and next thing I knew I was in my neighborhood in the surburbs. That meant I was driving in traffic and was on auto-pilot. Neuro told me that was complex simple and doing things on auto-pilot was not usual. Sounds like your experience.
you really
need to start a journal so that your neuro can know all of this. Man, oh, man, where is Skilly with her list? Let's see if I can remember it all........prolly not, but I'll try.....
1. Sleep. (how much, when, do you wake up during, etc)
2. Eating (how much, what, when)
3. TV/computer/video games (how much/what/when--yeah, it DOES make a difference, as some people are photosensitive)
4. Exercise (how much, what, when) yes, this can trigger seizures, but DON'T stop doing it. Just keep track of it, and if one particular exercise DOES trigger it, eliminate that exercise.
5. Auras. Do you have any? If so, what are they? Write them down.
6. For you, this is out.........I'd normally write keeping track of menses.
7. Any weird feelings that you have that you aren't sure of. Document them, date and time, how long they lasted, what they were like, etc, and ask witnesses if and what may have happened.
8. Seizures. Did any occur? If so, what were they like? Use your own personal memories, and witness accounts for documentation for the doctor.
**************
NOW here's other stuff to know.
1. SLEEP.......MINIMUM 7 to 7.5 hours per night, no ifs, ands, or buts about it.
2. Eating.....Skilly promotes 6 small meals a day to even out your blood sugar, and I think she's onto something. For every carb, a protein, and not more than will fill a dessert plate. Shop the perimeters of the grocery store too, in order to avoid the preservatives that really are an irritant to us E patients.
3. Limit how much you watch TV/video/computer, and see if that makes any difference in your episodes. Also, there is the possibility of getting blue polarized lenses in your glasses (if you wear them) to help cut this problem down.
4. We E patients do need to stay as fit as possible, but some seizures ARE triggered by exercise. Experiment, and see if some of your exercises are a trigger or not.....
5 thru 8 are self explanatory.
Take care.
Meetz
:rock:
need to start a journal so that your neuro can know all of this. Man, oh, man, where is Skilly with her list? Let's see if I can remember it all........prolly not, but I'll try.....
1. Sleep. (how much, when, do you wake up during, etc)
2. Eating (how much, what, when)
3. TV/computer/video games (how much/what/when--yeah, it DOES make a difference, as some people are photosensitive)
4. Exercise (how much, what, when) yes, this can trigger seizures, but DON'T stop doing it. Just keep track of it, and if one particular exercise DOES trigger it, eliminate that exercise.
5. Auras. Do you have any? If so, what are they? Write them down.
6. For you, this is out.........I'd normally write keeping track of menses.
7. Any weird feelings that you have that you aren't sure of. Document them, date and time, how long they lasted, what they were like, etc, and ask witnesses if and what may have happened.
8. Seizures. Did any occur? If so, what were they like? Use your own personal memories, and witness accounts for documentation for the doctor.
**************
NOW here's other stuff to know.
1. SLEEP.......MINIMUM 7 to 7.5 hours per night, no ifs, ands, or buts about it.
2. Eating.....Skilly promotes 6 small meals a day to even out your blood sugar, and I think she's onto something. For every carb, a protein, and not more than will fill a dessert plate. Shop the perimeters of the grocery store too, in order to avoid the preservatives that really are an irritant to us E patients.
3. Limit how much you watch TV/video/computer, and see if that makes any difference in your episodes. Also, there is the possibility of getting blue polarized lenses in your glasses (if you wear them) to help cut this problem down.
4. We E patients do need to stay as fit as possible, but some seizures ARE triggered by exercise. Experiment, and see if some of your exercises are a trigger or not.....
5 thru 8 are self explanatory.
Take care.
Meetz
:rock: