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Cluster Seizures
Mon, 02/21/2011 - 17:24For 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 Sat, 2011-03-05 - 21:49
Hi P,
Did your appt. with your neurologist go well? What was her answer the questions about complex partial seizures and losing/not losing conciousness? Just curious. I need to ask my neurologist questions if she disagreed with any of his answers.
Did she like the idea of your questions and Rx lists so she could make any necessary changes? I always update my Rx list by the appt. date and print out a new one (even if no changes are made) to keep sure it's up-to-date for my fiance', caregiver, and myself.
Take care,
T
Hi P,
Did your appt. with your neurologist go well? What was her answer the questions about complex partial seizures and losing/not losing conciousness? Just curious. I need to ask my neurologist questions if she disagreed with any of his answers.
Did she like the idea of your questions and Rx lists so she could make any necessary changes? I always update my Rx list by the appt. date and print out a new one (even if no changes are made) to keep sure it's up-to-date for my fiance', caregiver, and myself.
Take care,
T
Re: Cluster Seizures
Submitted by pkimmer on Sat, 2011-03-05 - 22:46
Hi T,
Thank you for your concern regarding my appt. I actually wrote a blog about it: my first ever blog! I called it ‘The Waiting Game’; an apt title I think.
My neurologist doesn’t seem to have much experience with epilepsy; at least not with cluster seizures. She is pretty much washing her hands of me. She said that if I called her in a week (on 07March’11), she expects
to have arranged an appt. for me with an epileptologist in Toronto (30 minute drive south of where I live) who can better answer my questions.
There is an epilepsy clinic there with all the specialists and equipment you might need to assist in diagnosing seizure types. The hope is that once I’ve seen an epileptologist there, it will be a foot in the door to
follow up testing and monitoring, ideally while seizing and to get to the bottom of the electrochemical mystery of my grey matter. I don’t even want to think about the waiting list to see the new doctor then afterwards, to be tested… People could be just lined up out the door waiting to get in. All in all though, I am glad that my neuro had the professionalism to point me in the right direction and into more capable hands.
I would love to get this started over the March Break and resolve it over the summer; or at least before Sept’11 when everyone, and their brother, needs a tutor again. I guess that’s a bit of wishful thinking.
Hi T,
Thank you for your concern regarding my appt. I actually wrote a blog about it: my first ever blog! I called it ‘The Waiting Game’; an apt title I think.
My neurologist doesn’t seem to have much experience with epilepsy; at least not with cluster seizures. She is pretty much washing her hands of me. She said that if I called her in a week (on 07March’11), she expects
to have arranged an appt. for me with an epileptologist in Toronto (30 minute drive south of where I live) who can better answer my questions.
There is an epilepsy clinic there with all the specialists and equipment you might need to assist in diagnosing seizure types. The hope is that once I’ve seen an epileptologist there, it will be a foot in the door to
follow up testing and monitoring, ideally while seizing and to get to the bottom of the electrochemical mystery of my grey matter. I don’t even want to think about the waiting list to see the new doctor then afterwards, to be tested… People could be just lined up out the door waiting to get in. All in all though, I am glad that my neuro had the professionalism to point me in the right direction and into more capable hands.
I would love to get this started over the March Break and resolve it over the summer; or at least before Sept’11 when everyone, and their brother, needs a tutor again. I guess that’s a bit of wishful thinking.
Re: Cluster Seizures
Submitted by tcameron on Sun, 2011-02-27 - 23:12
P,
I'm 51, & was diagnosed when I was 16, after my first convulsive seizure 12/75. I had smaller seizures all my life, but didn't recognize them until they became 'auras' for convulsive seizures.
- T
P,
I'm 51, & was diagnosed when I was 16, after my first convulsive seizure 12/75. I had smaller seizures all my life, but didn't recognize them until they became 'auras' for convulsive seizures.
- T