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I'm not sure that I am having seizures, can anyone give me an opinion?
Fri, 01/07/2005 - 18:03Comments
RE: RE: I'm not sure that I am having seizures, can anyone give
Submitted by mexican_fire on Fri, 2005-01-07 - 16:08
Hi BRuce,
Seeing that I have Mycolonics and was born with them, I would say you are mathing her up with pretty well. That is what it is. I have them in my shoulders, arms, hands, uppers legs and torso.
I don't lose consiousness either.
THey happen during the night, and those aren't the ones that are a problem, the ones during the day create msot of it.
I will drop stuff, throw stuff, fall out of chairs, or get thrown to the ground from the force of the seizure. I have an all tile house, so seizures like that can get dangerous. I have a special epilepsy helmet that I have to wear on the days that that occurs, because I have an injury list as long as my arm wtih those.
She needs to be re-evaulated for this. Myoclonic seizures will ONLY respond to Depakote drugs. Tegretol drugs/Dilantin drugs/Pheno/Lamictal etc. Have a very poor outcome in terms of treatment.
I take 1250 mgs of Depakote and 3600 mgs of Neurontin to control mine.
I am 31 now. I was just diagnosed with all this crap last year, but have been on AEDs for suspected seizure activity for 5 years. This wasn't picked up by anyone in the family, because they thought what I was doing was all normal, so it got ignored. The school system turned away from me and just laughed saying I had a behavior problem and that my mom had better get me on Ritalin before school starts, or I wouldn't be allowed to enter the 4th grade.
I was born with Myoclonic seizures. These are lightening fast jerks of the head, neck, shoulders, arms, hands, upper legs, and torso, also known as a whole body jerk.
Usually most people have about 3 parts that jerk. It is also known as the "Muscle-jerk" seizure.
I have JAE (Juvenile Absence Epilepsy), comes with Absence and TC seizures. Diagnosed as an adult.
Then I have MTLES (Mesial Temporal Lobe Epilepsy Syndrome), comes with Epileptic aura, Simple Partial, Complex, and Secondarily Generalized TCs (nocturnal). It also creates something very similiar to Migraines called Epileptic Cephalgia.
I have had everything against me from the begining.
I was severely abused by my dad as a child. He used to beat me till "it" came out my nose, and my nose would actually bleed. He would throw me down stairs or off the attic landing (20 foot fall), picked me up by my neck or throat and beat my head on the wall or wall corner as hard as he could or until he was too tired to do it anymore, he would take 2x4s and hit my head like it was a ball on a tee. He broke my jaw once by hitting with a 2x4 and on another time when he used sheer force to grab/hold me by my jaw, that he broke it by crunching it. Wouldn't allow me to get it fixed either time. He did other things like that for 20 years, and never gave a care.
I have had 3 brain infections, 4 major concussions, and my Cajun/Native American Heritage (genetics), and I was also born with it, and no one ever knew until it was too late.
So, 30.5 years down the road here I am, and can't even use my degree.
The Myoclonics will get worse with time, because that is their nature. Mine are only partly controlled on high doses of AEDs.
Nancy
Hi BRuce,
Seeing that I have Mycolonics and was born with them, I would say you are mathing her up with pretty well. That is what it is. I have them in my shoulders, arms, hands, uppers legs and torso.
I don't lose consiousness either.
THey happen during the night, and those aren't the ones that are a problem, the ones during the day create msot of it.
I will drop stuff, throw stuff, fall out of chairs, or get thrown to the ground from the force of the seizure. I have an all tile house, so seizures like that can get dangerous. I have a special epilepsy helmet that I have to wear on the days that that occurs, because I have an injury list as long as my arm wtih those.
She needs to be re-evaulated for this. Myoclonic seizures will ONLY respond to Depakote drugs. Tegretol drugs/Dilantin drugs/Pheno/Lamictal etc. Have a very poor outcome in terms of treatment.
I take 1250 mgs of Depakote and 3600 mgs of Neurontin to control mine.
I am 31 now. I was just diagnosed with all this crap last year, but have been on AEDs for suspected seizure activity for 5 years. This wasn't picked up by anyone in the family, because they thought what I was doing was all normal, so it got ignored. The school system turned away from me and just laughed saying I had a behavior problem and that my mom had better get me on Ritalin before school starts, or I wouldn't be allowed to enter the 4th grade.
I was born with Myoclonic seizures. These are lightening fast jerks of the head, neck, shoulders, arms, hands, upper legs, and torso, also known as a whole body jerk.
Usually most people have about 3 parts that jerk. It is also known as the "Muscle-jerk" seizure.
I have JAE (Juvenile Absence Epilepsy), comes with Absence and TC seizures. Diagnosed as an adult.
Then I have MTLES (Mesial Temporal Lobe Epilepsy Syndrome), comes with Epileptic aura, Simple Partial, Complex, and Secondarily Generalized TCs (nocturnal). It also creates something very similiar to Migraines called Epileptic Cephalgia.
I have had everything against me from the begining.
I was severely abused by my dad as a child. He used to beat me till "it" came out my nose, and my nose would actually bleed. He would throw me down stairs or off the attic landing (20 foot fall), picked me up by my neck or throat and beat my head on the wall or wall corner as hard as he could or until he was too tired to do it anymore, he would take 2x4s and hit my head like it was a ball on a tee. He broke my jaw once by hitting with a 2x4 and on another time when he used sheer force to grab/hold me by my jaw, that he broke it by crunching it. Wouldn't allow me to get it fixed either time. He did other things like that for 20 years, and never gave a care.
I have had 3 brain infections, 4 major concussions, and my Cajun/Native American Heritage (genetics), and I was also born with it, and no one ever knew until it was too late.
So, 30.5 years down the road here I am, and can't even use my degree.
The Myoclonics will get worse with time, because that is their nature. Mine are only partly controlled on high doses of AEDs.
Nancy
RE: RE: RE: I'm not sure that I am having seizures, can anyone g
Submitted by batman on Fri, 2005-01-07 - 18:03
Nancy,
I don't know what to say about the life you've gone through with father, other than down right wanting to hold you in my arms right now. The mental and emotional feelings will never go away. I do want to ask this. How are you doing physically?
The hardest problem I've had took place 3 years ago. I was forced out of a church, which I really enjoyed going to for almost 6 years. This took place just a few months after I finally had one of my then complex partial szs taking place inside the church. Of their 3 reasons why were unfair, an excuss and a down-right lie. I brought my story to the attention of a coalition group exectutive director and he could tell right off that this church has disability discrimination. The only thing that is keeping away from fighting it is that the American Disability Act [ADA] doesn't include equal right for people with disabilities to attend churches. Sure there are laws enforcing the requirements to get everyone to the church door, but doesn't mean that they're going to let you come inside.
With what has happened and visiting other local churches over these three years, I've made the decision to just stop going to churches. To study and learn on my own at my own pace. I think that I've learned more on my own over the past three years already.
I noticed that this group does have something available to chat. However, I'd like to chat with anyone who's willing and interested, sometime in the future. You got me interested in doing some search and learn more about MTLES. Please share what you know and possibly a good online source which has enough information.
God Bless you Nancy.
Bruce
Nancy,
I don't know what to say about the life you've gone through with father, other than down right wanting to hold you in my arms right now. The mental and emotional feelings will never go away. I do want to ask this. How are you doing physically?
The hardest problem I've had took place 3 years ago. I was forced out of a church, which I really enjoyed going to for almost 6 years. This took place just a few months after I finally had one of my then complex partial szs taking place inside the church. Of their 3 reasons why were unfair, an excuss and a down-right lie. I brought my story to the attention of a coalition group exectutive director and he could tell right off that this church has disability discrimination. The only thing that is keeping away from fighting it is that the American Disability Act [ADA] doesn't include equal right for people with disabilities to attend churches. Sure there are laws enforcing the requirements to get everyone to the church door, but doesn't mean that they're going to let you come inside.
With what has happened and visiting other local churches over these three years, I've made the decision to just stop going to churches. To study and learn on my own at my own pace. I think that I've learned more on my own over the past three years already.
I noticed that this group does have something available to chat. However, I'd like to chat with anyone who's willing and interested, sometime in the future. You got me interested in doing some search and learn more about MTLES. Please share what you know and possibly a good online source which has enough information.
God Bless you Nancy.
Bruce
RE: I'm not sure that I am having seizures, can anyone give me a
Submitted by batman on Thu, 2005-01-06 - 04:32
Uncertain exactly as for if this could be a simple partial seizure [sps], but it might be a closer match at being a myoclonic seizure. I will difinetly recommend that you contact and visit a neurologist, who handles various types of neurological problems, one of which is seizures & epilepsy, or to another specifc type of specialist who deals directly for people with epilepsy. A epilepsy specialist is called a epileptologist. For a begining to get to either of these types of doctors you may need to see a general/primary physician, to give you a referal.
To learn more about seizures, go back to this website home page www.epilepsy.com, then in the menu on the leftside of the page point your mouse arrow over the top one titled "ALL ABOUT EPILEPSY & SEIZURES" then when the additional listings come up point and click on the one titled "Types of Seizures". After you come to the next page and along the same leftside menu area there will be multiple types of seizures. In the list the type I named about will be in the menu. Point and click, then you can read over the details describing it, along with other types you might need to glance over.
Wish you the best.
Bruce J
Uncertain exactly as for if this could be a simple partial seizure [sps], but it might be a closer match at being a myoclonic seizure. I will difinetly recommend that you contact and visit a neurologist, who handles various types of neurological problems, one of which is seizures & epilepsy, or to another specifc type of specialist who deals directly for people with epilepsy. A epilepsy specialist is called a epileptologist. For a begining to get to either of these types of doctors you may need to see a general/primary physician, to give you a referal.
To learn more about seizures, go back to this website home page www.epilepsy.com, then in the menu on the leftside of the page point your mouse arrow over the top one titled "ALL ABOUT EPILEPSY & SEIZURES" then when the additional listings come up point and click on the one titled "Types of Seizures". After you come to the next page and along the same leftside menu area there will be multiple types of seizures. In the list the type I named about will be in the menu. Point and click, then you can read over the details describing it, along with other types you might need to glance over.
Wish you the best.
Bruce J