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Cluster Seizures

Mon, 02/21/2011 - 17:24

For the last 10 years my (undiaganosed) seizures have occurred only 4-6 times a year but when they do, I get a cluster of at least a dozen and more over the course of a 24hour period.

I saw a neuro for the first time last month (Jan/11) because I didn’t realize that I might be having seizures until I did a little Googling last summer (2010). I’m assuming they are simple partial seizures since I remain conscious and aware.

My neuro said that my description (see pkimmer story) was that of seizures but I forgot to ask what kind. I’m seeing her in a week (28Feb’11) to get her assessment now that MRI has come back normal like all of my other tests. Until then, can anyone shed some light on the SEIZURE CLUSTER aspect? The only thing I’ve found in my research pertains to tonic clonic or seizures complex partial seizures where consciousness is lost. Even then, they talk about a lot fewer seizures within a 24 hour time frame so I’m quite confused about it...ANYBODY??? Thanks for listening :  ) pkimmer



Comments

Re: Cluster Seizures

Submitted by tcameron on Sun, 2011-03-06 - 07:14

Hi P,

I finally finished my personal story for this website.  It's called T's Story.  Please tell me if you're able to look it up.  I need to know if it's visable to other members of my.epilepsy.com.  You live in Canada?  Wow! You're neurologist is right; epileptologists are much more experienced.  Have you been directed to a specific one?   This website can direct you to one in your area.  I'm calling Dr. Fisher's office on Monday to ask about complex partial and not losing conciousness.  Any questions you'd like me to ask?  The beginning of the home page of this website shows a small video on the bottom right called "Understanding Epilepsy."  That's Dr. Fisher, my epileptologist.  The director of the Stanford Epilepsy Ctr.  I didn't have to wait too long to get in.

You're going to college?  I've completed my AA, but I need my BS.  (Sept. 11, reminds me of the 9/11 attack on the U.S. by al queda in 2001.)  I'm sure you heard about that!  Is it emergency number for Canada?  That's why al queda chose that date. The jobs depression is worse in CA than most of the U.S.   I won't be able to compete with my outdated skills.  I'm going to try the online University of Phoenix as soon as possible.  Better sooner than later.  I get tired and need to rest in the afternoons, but it still...  I can't work for money and get Medi-Cal and Medicare to pay my prescriptions, doctor bills; that kind of stuff. 

I don't think I'll be able to get a tutor with an online university.  I have a learning disability, compounded by Dilantin.  It took almost 10 years to get my AA, 'cause I can only take on course at a time.  One subject is almost a full-time job for me!  My job skills are out-of-date.  If I'm going to compete, I've got to update them, and have a BS degree!  I'm also afraid of needing to wear a helmet on the job. (Stigma.) 

Even though I'm still having drop attack seizures, most of my headaches are gone, and the postictal confusion is shorter.  Sometimes epilepsy gets better after menopause.  I hope my seizures stop in a few years.  I'd love to live a normal life.  It might be "the change of life"  or the Vimpat; another AED I take.  It really helps, but it's still new.  Also, every brain is different, and all can cause depression or suicidal thoughts in some people.  I feel elated, more happy than before I took ANY medication.  Does the EFA cover Canada, or do you have an epilepsy foundation for your country?  It sure explains a lot of info we've both been wondering about!  Call 1-800-EFA-1000 (332-1000)  If they won't send you info, I'll order it, and mail it to you!

Sorry this was so long.  Take care, 

T

Hi P,

I finally finished my personal story for this website.  It's called T's Story.  Please tell me if you're able to look it up.  I need to know if it's visable to other members of my.epilepsy.com.  You live in Canada?  Wow! You're neurologist is right; epileptologists are much more experienced.  Have you been directed to a specific one?   This website can direct you to one in your area.  I'm calling Dr. Fisher's office on Monday to ask about complex partial and not losing conciousness.  Any questions you'd like me to ask?  The beginning of the home page of this website shows a small video on the bottom right called "Understanding Epilepsy."  That's Dr. Fisher, my epileptologist.  The director of the Stanford Epilepsy Ctr.  I didn't have to wait too long to get in.

You're going to college?  I've completed my AA, but I need my BS.  (Sept. 11, reminds me of the 9/11 attack on the U.S. by al queda in 2001.)  I'm sure you heard about that!  Is it emergency number for Canada?  That's why al queda chose that date. The jobs depression is worse in CA than most of the U.S.   I won't be able to compete with my outdated skills.  I'm going to try the online University of Phoenix as soon as possible.  Better sooner than later.  I get tired and need to rest in the afternoons, but it still...  I can't work for money and get Medi-Cal and Medicare to pay my prescriptions, doctor bills; that kind of stuff. 

I don't think I'll be able to get a tutor with an online university.  I have a learning disability, compounded by Dilantin.  It took almost 10 years to get my AA, 'cause I can only take on course at a time.  One subject is almost a full-time job for me!  My job skills are out-of-date.  If I'm going to compete, I've got to update them, and have a BS degree!  I'm also afraid of needing to wear a helmet on the job. (Stigma.) 

Even though I'm still having drop attack seizures, most of my headaches are gone, and the postictal confusion is shorter.  Sometimes epilepsy gets better after menopause.  I hope my seizures stop in a few years.  I'd love to live a normal life.  It might be "the change of life"  or the Vimpat; another AED I take.  It really helps, but it's still new.  Also, every brain is different, and all can cause depression or suicidal thoughts in some people.  I feel elated, more happy than before I took ANY medication.  Does the EFA cover Canada, or do you have an epilepsy foundation for your country?  It sure explains a lot of info we've both been wondering about!  Call 1-800-EFA-1000 (332-1000)  If they won't send you info, I'll order it, and mail it to you!

Sorry this was so long.  Take care, 

T

Re: Cluster Seizures

Submitted by pkimmer on Sun, 2011-03-06 - 13:25

Hi T,

I am unable to see your story. Any time I’ve tried to check your profile, it says, “community profile is not public.”  In order for others to see it, you must make your profile ‘public’. Remember when you set up your account and you checked off the state and country you are from? (You can access that
page again through ‘Manage my account’. Right under ‘Country’ is a box that you have to check in order to make your profile public. Once you’ve done that, other people can see your profile info.

Good luck. I’ll get back to you about the rest of your questions later.

p



Hi T,

I am unable to see your story. Any time I’ve tried to check your profile, it says, “community profile is not public.”  In order for others to see it, you must make your profile ‘public’. Remember when you set up your account and you checked off the state and country you are from? (You can access that
page again through ‘Manage my account’. Right under ‘Country’ is a box that you have to check in order to make your profile public. Once you’ve done that, other people can see your profile info.

Good luck. I’ll get back to you about the rest of your questions later.

p



Re: Cluster Seizures

Submitted by tcameron on Tue, 2011-03-08 - 13:22
I'm still confused.  I looked up Help as well.  It asks for a Blog and all kinds of other stuff.  Did you make a story?  If so, what kinds of things did you put in it?

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