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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, 2011-02-27 - 13:30

Hi Pkimmer,

I'm confused as well.  However, that's what Dr. Robert S. Fisher's nurse, Mimi Callinan told me.  He was the  editor-in-chief of this website until a couple months ago.  In fact, you can still find some of his videos here.  Look up "Understanding Epilepsy."  He's my epileptologist.  He's the Head Epileptologist at Stanford's Epilepsy Ctr.  You might want to discuss this with your neurologist to find out her opinion.

I think the reason all my seizures are considered complex partial, is because that was my diagnosis.  I don't know what else to say, other than one of Dr. Fisher's patients was told this.  I no longer experience auras, so I thought that meant the seizures were different in many ways.  I wish I could clear this up, but it's time to talk to your neurologist.

Take care, 

T. Cameron 

P.S.  Call me "T"

 

Hi Pkimmer,

I'm confused as well.  However, that's what Dr. Robert S. Fisher's nurse, Mimi Callinan told me.  He was the  editor-in-chief of this website until a couple months ago.  In fact, you can still find some of his videos here.  Look up "Understanding Epilepsy."  He's my epileptologist.  He's the Head Epileptologist at Stanford's Epilepsy Ctr.  You might want to discuss this with your neurologist to find out her opinion.

I think the reason all my seizures are considered complex partial, is because that was my diagnosis.  I don't know what else to say, other than one of Dr. Fisher's patients was told this.  I no longer experience auras, so I thought that meant the seizures were different in many ways.  I wish I could clear this up, but it's time to talk to your neurologist.

Take care, 

T. Cameron 

P.S.  Call me "T"

 

Re: Cluster Seizures

Submitted by pkimmer on Sun, 2011-02-27 - 13:36

Hi T,

I agree that it's time to talk to my neurologist. I'm seeing her tomorrow and hoping for some answers. I have specific questions written out, I'm bringing my husband and mentioning some symptoms that I didn't have a chance to mention the first time.

I'll check out the video you mentioned also. Thanks for your support.

pk

Hi T,

I agree that it's time to talk to my neurologist. I'm seeing her tomorrow and hoping for some answers. I have specific questions written out, I'm bringing my husband and mentioning some symptoms that I didn't have a chance to mention the first time.

I'll check out the video you mentioned also. Thanks for your support.

pk

Re: Cluster Seizures

Submitted by tcameron on Sun, 2011-02-27 - 14:23

PK,

I'm glad you've got your questions written out.  It makes the meetings so much easier and shorter as well.  I've often forgotten an important question, before I started writing mine down.  I show my questions to him, he explains his answers, then writes them down on my list.  It's so much easier to have written answers, because sometimes I forget. 

I also type up my list of ALL meds and vitamins, the prescribing doctor's name and phone number, along with the dose and time of day AM,  Miday, and PM, so he gets the info right upfront.  All the staff needs to do when I visit, is make a photocopy and add it to my file.  When I see him,  I ask if/where any changes need to be made.  I update the list after every appt., even if there are no changes, and give a copy for my sweetie/caregiver as well.  I always put the appointment date on it, so we know for sure which list is the most current. I give it to my dentist, and G.P. as well.  (It also helps when travelling.  They don't expect me to pull out all the pill bottles; that's enough info for them!)

(Believe it or not, I saw someone at Jack-in-The-Box, take out her 7-day pill counter in a ziplock bag with the list in the dining room when she was eating.  Strange, but that's how I got my idea!)  I have several nurses and a doctor in my family and have shown them my list.  They told me they'll advise their patients to do the same! 

BTW, Please let me know your neurologist's answer to our questions.  I'm going to call MINE, if she disagrees w/ Dr. Fisher on any of these points.

Thanks and good luck tomorrow!

T

PK,

I'm glad you've got your questions written out.  It makes the meetings so much easier and shorter as well.  I've often forgotten an important question, before I started writing mine down.  I show my questions to him, he explains his answers, then writes them down on my list.  It's so much easier to have written answers, because sometimes I forget. 

I also type up my list of ALL meds and vitamins, the prescribing doctor's name and phone number, along with the dose and time of day AM,  Miday, and PM, so he gets the info right upfront.  All the staff needs to do when I visit, is make a photocopy and add it to my file.  When I see him,  I ask if/where any changes need to be made.  I update the list after every appt., even if there are no changes, and give a copy for my sweetie/caregiver as well.  I always put the appointment date on it, so we know for sure which list is the most current. I give it to my dentist, and G.P. as well.  (It also helps when travelling.  They don't expect me to pull out all the pill bottles; that's enough info for them!)

(Believe it or not, I saw someone at Jack-in-The-Box, take out her 7-day pill counter in a ziplock bag with the list in the dining room when she was eating.  Strange, but that's how I got my idea!)  I have several nurses and a doctor in my family and have shown them my list.  They told me they'll advise their patients to do the same! 

BTW, Please let me know your neurologist's answer to our questions.  I'm going to call MINE, if she disagrees w/ Dr. Fisher on any of these points.

Thanks and good luck tomorrow!

T

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