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pkimmer

Cluster Seizures

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

The EEGs can be normal and you can still be diagnosed as a seizure patient. 

 If you are monitored in a unit for a period of time and  the discharges occur that will tell them where the abnormality is coming from.  If you are clustering it will be great.   It happened to me one time and I was grateful they were able to see it.  They changed medications at that time for me. 

 MRI's indicating only a minor abnormality but nothing causing seizures until a few years ago.  It is how thinly the slices of the MRI helps in the diagnosis.  They found out the cause of my seizure disorder was during gestation.

I am on 3 medications to control my seizures. Exercise, sleep and eating a balance diet really helps anyone dealing w/ health issues.  Stress brings on seizures but by exercising daily, sleeping and eating a balanced diet has helped me.

Each person has an individual cause.   Now medications has them better under control.  The doctor has to know your case a little bit.  I have had seizures for a 40 years.   

Re: Cluster Seizures

Hi tonialpha,

I wish I had gone to the emergency dept. of the hospital the last time I had these seizures (Sept'10). I had 14 within a 24 hour period; 6 of them were within an hour apart. It would have been a good time to try to find the cause of them...

Do you always lose consciousness during a complex partial seizure? I don't lose consciousness so I'm guessing that mine are simple partial. I guess that's why it never occurred to me before that I might be having seizures. I hope to find out more on Monday (28Feb'11) when I see my neurologist.

Re: Cluster Seizures

A learned during the time period I was being recorded.  I had several partial complex seizures during that time period of the Cluster.  They administered medication to stop the seizure activity.  I thought I  was alert but I was sleepy and apparently dosed off twice and was not aware of it.  The EEG recorded indicated  what had occured along w/ the visual recording.

Each patient is different.

I have had 2 brain surgeries too, prior to this recording. I also have a VNS.

Re: Cluster Seizures

That sounds sad, hope you are fine now!!..

Re: Cluster Seizures

Conciousness isn't always lost during complex partial seizures, although that's the most common observed.  Often people don't recognize other complex partial seizures.  I know, for a fact, that although I don't always lose conciousness.  My neurologist still claims all my seizures to be complex partial.  He still wants them listed in the seizure diary.  Sometimes they're so short that I don't even notice their occurnace.  Sometimes I won't know until someone witnesses it and tells me about them.  This is new, they used to always be drop attacks.

Re: Cluster Seizures

Hi tcameron, 

Thank you for your response. Now I'm really confused. I thought that the difference between simple and complex partial seizures was level of consciousness and that when you had a cps you lost consciousness. I guess I've got a lot to learn about this confusing and mysterious condition.

Re: Cluster Seizures

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

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

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

Re: Cluster Seizures

T,

I also have all my meds and suppements, vitamins... written out. Now I shall add my prescribing doctor since it wasn't my GP.

I have also typed up a table showing the date and times of my last episodes in Sept'10 with the time between each of 14 episodes and any thoughts, symptoms, when the seizures awoke me from sleeping...

As well, a medical history of anything that may be related throughout my nearly 50 years for her to keep on file.

I think I've covered everything. Let me know if you think I've missed anything.

Also, let me know if you are interested in the questions I'm going to ask. Perhaps there's something you would ask that I'm missing...

p

Re: Cluster Seizures

P,

Looks like you've got it!  None of my business, but... have you had epilepsy for nearly 50 years, or are you almost 50 years old?

T

Re: Cluster Seizures

Good question, T. I am almost 50 years old (in May). I've been experiencing what I now know are seizures for 10 years. I was only diagnosed a month ago.

What about you, T; how long have you been having seizures?

p

Re: Cluster Seizures

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

Re: Cluster Seizures

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

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.

p

Re: Cluster Seizures

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

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

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?

Re: Cluster Seizures

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?

Hi T,  If you click on

Hi T,

 If you click on my name, it should take you to my community profile where you can see that I'm from Canada etc but also, if you scroll down a bit there should be a link to my story that you can follow to read my story.

I hope you find it! :)

p

Re: Cluster Seizures

Yes, I live in Canada and once you make your profile public, I’ll know where you’re from too!

I have not yet been referred to an epileptologist; hopefully I will be tomorrow when I call my neurologist. I’ll be sooo disappointed if she hasn’t arranged it in the last week.

That’s great that Dr. Fisher is your doctor. In all of the videos I’ve watched with him narrating, I thought he seemed very knowledgeable, caring and compassionate and  wouldn’t it be nice if he was my doctor. I hope I don’t have to wait too long to get in to a clinic in Toronto but I’ve never done this before so I’m not really sure of wait times, etc.

Sorry about the confusion: I am not going to college but I tutor at a boys-only private school called St. Andrew’s College in Aurora, Ontario. You should check out their web site at www.sac.on.ca   It’s interactive and it’s really cool. If you click on the Virtual Tour link then click on the Tower’s Library link, you’ll see where I tutor every Mon-Fri; mostly in the evening but during spares in the day as well. I’m educated as a Chemical Engineering Technologist and I tutor in the subjects of grade 8-12 maths, grade 8-10 science, and grade 11 chemistry and biology. Both of my son’s attend school here (one in his last year and the other in grade 10). My husband has taught here for 25 years. We also live on campus (20 years now) though you can’t see our house on the virtual tour page. 

When I got to ½ the dosage of Topamax and couldn’t concentrate and focus and only want to sleep, I
was mortified. I was also having daily nose bleeds and constant tinnitus. I called my neuro’s office and said the drug wasn’t working for me. She backed me off to ¼ of the dosage which I am tolerating so far. I read that if you are taking high doses of calcium and vitamin C, you shouldn’t take Topamax. I actually
stopped taking both because I was aware that Topamax can cause kidney stones. The one question I might ask Dr. Fisher is whether 2,000 mg of Vitamin C and 665 mg of Ca constitute high dosages.

I realized as I was typing Sept/11 that it would make anyone think of that day. Is there anyone who doesn’t know what they were doing at that time? My husband was away with a school program called ‘beyond the gates’ and I was supposed to be going to an AVON convention near the airport: yes, I was an AVON lady for a while!! Anyway, I cancelled my baby sitter and stayed home with my 2 precious boys (they were about 5 & 7 at the time) until my hubby came home the next day.

That’s great that you want to update your education. I took an online writing course and enjoyed it very
much. I really learned a lot. Have you had to wear a helmet before? I can’t imagine the stigma that goes with that. I consider myself very lucky. If I had to have seizures, I guess the kind I’m experiencing must be the easiest to deal with. Actually, that brings up the other question that I tried to ask my neuro but she couldn’t really answer: does the fact that I experience my seizures in clusters only put me at particular risk for them developing into generalized seizures or even status epilepticus? I’m not sure that is a question you would actually ask Dr. Fisher regarding your own situation so don’t worry if it doesn’t come up. Thank you for asking though, T, I really do appreciate it.

I don’t believe the EFA covers Canada but we have Epilepsy Canada and it further divides by province and region. But the thing I like about this web site that I haven’t seen elsewhere (in Canada) is the interactive community of other people that help me to feel less alone.

And you thought your message was long.  Phew!

Take care. P

By the way, it looks like our message space is narrowing by the day!! I suppose this is message is probably more suited to my blog...

Re: Cluster Seizures

My clusters I had two days ago was when I was fixing the dryer vent!

I pushed the dryer and the vent was not attached.  I was slightly confused but I knew I had to do something.  I suddenly got mad for no reason.  My daughter came in and noted I was having a seizure and handed me a vacuum cleaner and asked me if I was alright and I said I was fine.  It took me a minute or 2 to realize what I was suppose to do and then I could do it.

Normally it takes me 5-10 minutes to fix nozzle  the dryer but my daughter noted I was sitting on the floor staring at things and confused for a few minutes.  That night  my whole arm was sore and I went to bed.  That morning my husband noted I was having more little seizures and he handed me my emergency ativan and sent me to the ER.  The ER contacted my Epileptologist and she changed one of my medications.  My seizures were breaking thru not bad ... I personally wanted to go home.  I was worried I was having a stroke but they told me I had a bad seizure the day before and was a little disoriented.  Today I am just tired.  I haven't had this in a long time.    I felt embarrased. 

Re: Cluster Seizures

I used to always have my seizures in clusters, when I had them.  I'd have three on the same day, then usually not another one for almost a year.  It was always in three's.  My neurologist prescribed Ativan for the clusters.  When taken after the first seizure, the cluster stopped.

I hope this info helps.

 

Re: Cluster Seizures

Hi tcameron,

Thank you for your response regarding cluster seizures. I googled Ativan to find out about its usage, side effects... it seems that it is prescribed mainly for anxiety. Do you find that your seizures are induced by anxiety? I have been unable to make any connection what-so-ever to any trigger for mine.

pkimmer

Re: Cluster Seizures

Hi,

That's interesting about Ativan and anxiety.  Yes, anxiety can induce seizures for me.   Several other in my epilepsy support group take Ativan to combat clusters.  Did you know that A LOT of AED's are also used for anxiety and bipolar disorders?  It's been determined that these conditions are neurological, and are often located in or near the same part of the brain.  Stress would be a more accurate definition for the trigger, but anxiety causes stress! 

I only take the Ativan (lorazepam) after my first seizure.  If taken too often, it loses its effectiveness. 

I find a fever, even as low as 99* (stress), too much exercise at the gym (stress), 
and of course, missing any pills are definite triggers.  It's difficult to keep track of all those pills!  I take 4 different AEDs every day.  Most
of my seizures have no known cause. 

BTW, most of us can't find any triggers for our seizures.

I hope this helps!

T. Cameron

 

Re: Cluster Seizures

Hi,

That's interesting about Ativan and anxiety.  Yes, anxiety can induce seizures for me.   Several other in my epilepsy support group take Ativan to combat clusters.  Did you know that A LOT of AED's are also used for anxiety and bipolar disorders?  It's been determined that these conditions are neurological, and are often located in or near the same part of the brain.  Stress would be a more accurate definition for the trigger, but anxiety causes stress! 

I only take the Ativan (lorazepam) after my first seizure.  If taken too often, it loses its effectiveness. 

I find a fever, even as low as 99* (stress), too much exercise at the gym (stress), 
and of course, missing any pills are definite triggers.  It's difficult to keep track of all those pills!  I take 4 different AEDs every day.  Most
of my seizures have no known cause. 

BTW, most of us can't find any triggers for our seizures.

I hope this helps!

T. Cameron

 

Re: Cluster Seizures

Hi PKimmer,

I've had clusters of seizures from Temporal Lobe Epilepsy (TLE) all my life (58 years). For the first two or three decades, the clusters were mainly of stronger simple partial seizures. The clusters were mainly unpleasant visceral sensations of partial seizures (epigastric rising sensations, severe flashes of sensations of intense fear, etc.). The clusters usually came with a warning aura just as I would try to go to sleep the night before they would hit the hardest at the highest frequency per hour the following early morning, through the next day or so. My clusters have a period of returning in a little less than a month (not in sync with the moon, but more like my biological day is closer to 25 hours long than 24 hours long). The severity of the seizures in the clusters grew more intense over the decades, where they frequently peaked with secondarily generalized tonic-clonics during my fourth decade of life.

Various theories I've read that made the most sense to me, involved the notion of seizure kindling and seizure thresholds, with the model of occurrences of minor seizures briefly lowering the seizure threshold, until frequent and larger seizures raise the seizure threshold, stopping the cluster, with long term kindling raising the frequency/intensity of the cusp point over the decades. At the height of the fad of the mathematical dynamic systems of "Catastrophe Theory", it was often applied to epilepsy, with the simplest model of the Cusp Catastrophe, to more difficult models of the Butterfly Catastrophes, with a simplified limited model for periods of "Acute Repetitive Simple Partial Seizures" somewhere between Partial Status Epilepticus and Clusters of Simple Partial Seizures, determined by the cusp flip-flop of the threshold in a particular closely grouped bunch of seizures, in the dimensions of frequency and intensity of the group plotted against threshold level.

Some of the terminology for seizure clusters: http://books.google.com/books?id=UbRh4TkyK3QC&pg=PA717&lpg=PA717&dq=epil...

For the last 23 months, I've managed to stop my clusters from reaching tonic-clonics with a strong dose of regular Keppra, but I haven't any luck with AEDs stopping the partial seizures, in clusters, or otherwise.

A somewhat barbaric theory making a comeback, is briefly "stopping" epilepsy by raising the seizure threshold with Electro-Convulsive Therapy (ECT), while ECT has also been regarded as being another cause of epilepsy.

Tadzio

Re: Cluster Seizures

Hi 3Hours2Live,

Thank you for your extensive response. You've given me some interesting information both from first hand experience and through your own search for theories that goes beyond the ABCs of epilepsy. I now feel I have new options, of which I was previously unaware, that I can further research. I was felt like I was just going in circles acquiring limited knowledge that didn't really deepen my understanding of the vast possibilies of what could be going on in my brain that just doesn't show up on any sort of test.

Thanks again for your insight.

pkimmer

Re: Cluster Seizures

Hello my name is Danielle.  Six months ago I was Dx w/ Complex Partial Seizures.  Only in the past two months have I had 3 occurences, today being the 3rd (6 to 7 CPS related seizures, some minutes apart from a few hours over a 24 hour per). I was curious how do you feel afterwards. I am not on any drugs at this time.  I actually had to seek another opinion, well in the process  I have tried two various drugs with no success or success but REALLY bad (adverse) reactions.  Am I at risk of developing actual tonic clonic seizures? Last question, how is this effecting my body if they are not continous.  I am sorry I am asking questions that can vary in answer considering the individual.  Until I see my new neurologist I am lost right now....especially after today's events.  Thank You!!!!!

Re: Cluster Seizures

Hello my name is Danielle.  Six months ago I was Dx w/ Complex Partial Seizures.  Only in the past two months have I had 3 occurences, today being the 3rd (6 to 7 CPS related seizures, some minutes apart from a few hours over a 24 hour per). I was curious how do you feel afterwards. I am not on any drugs at this time.  I actually had to seek another opinion, well in the process  I have tried two various drugs with no success or success but REALLY bad (adverse) reactions.  Am I at risk of developing actual tonic clonic seizures? Last question, how is this effecting my body if they are not continous.  I am sorry I am asking questions that can vary in answer considering the individual.  Until I see my new neurologist I am lost right now....especially after today's events.  Thank You!!!!!