Tracing My Seizure History

When I had the nocturnal tonic-clonic seizure on 18 June 2011 I thought it was my first.  I was told that 1 out of 10 people will have a seizure at some point in their lifetime and many continue on never having another seizure.

After my third seizure I began researching and learning about seizures and epilepsy.  I was diagnosed in January 2012 with Idiopathic Epilepsy.  Idiopathic means they have no solid evidence why you have developed epilepsy although they may have a suspicion.  In my case we suspected a head and neck injury which occurred in January of 1991.

During my journey I began learning the many different seizure types and my memory was jogged.  At some point during my first marriage I remembered having a tonic-clonic seizure in a doctor’s office following a blood draw.  Since I remarried and no longer lived in that city or state, plus I had no idea what the date had been I wasn’t sure if I could get any information about the event.  I decided to try anyway.  I looked up the medical clinic online, downloaded and filled out their request for medical records form, wrote a letter explaining what I needed and why, then hoped for the best.

A week after sending off the information request I was shocked to find an envelope from the medical clinic.  Inside was a photocopy of the exact information I needed including my previous doctor’s notations!  I finally had a date for my first witnessed and documented seizure, it occurred on 11 May 2001!

More recently I’ve remembered many “odd” things that began happening a year and 5 months following the accident.  Back then I thought they were just weird occurrences and brushed them off as being nothing.  I had no idea that what I was experiencing back then were seizures.  To me, a seizure was something that was dramatic and convulsive.  I didn’t know that a seizure could be something as simple as having a strong sense of Déjà vu. 

I remembered waking up in the middle of the night, unable to move or speak with a strong sense of fear.  It seemed to last an eternity when in fact it only lasted 1 or 2 minutes.  Many times as I was falling asleep I would begin to hear a man’s voice (like a news broadcast on tv) except I couldn’t hear the words being spoken, or I would hear music as if the radio was left on in the other room.  I would get out of bed to go “shut off” whatever was left on, but never found anything on and the sounds I was hearing would stop within 2 or 3 minutes.

As things progressed I began having partial seizures (on an almost daily basis) where I would suddenly and momentarily be unable to understand the words someone was saying to me.  They were brief, not understanding language for 30 seconds to a minute, but it was just long enough to lose track of a conversation.  This caused me to have to ask people to repeat what they’d just said to me.  I was so embarrassed and chalked it up to being tired or having “fibro fog” due to my fibromyalgia.

The Déjà vu happened pretty much on a daily basis until I was placed on Levetiracetam.  I had grown so used to feeling it wasn’t until the medication began working I realized it was gone.  It was almost odd not to feel Déjà vu because I had grown so accustomed it.

All these things point to the fact that I’d been living with untreated, undiagnosed epilepsy for nearly 20 years.  Since I was not treated the seizures were becoming progressively worse, until finally in 2011 they reached the level of becoming reoccurring complex partial seizures with secondary generalized tonic-clonic seizures.

Although we’ll probably never be able to conclusively prove my head and neck injury caused the epilepsy, I am much more satisfied in my own mind that it did.  Being able to trace back my seizure activity to within a year and five months of the accident has helped me feel a bit of closure as to “why” I have adult onset Idiopathic Epilepsy.

Hugs,
Cat

Dream? Seizure? Both?

Today I had a very strange/disturbing experience.  After a long stressful weekend we came home Sunday exhausted.  This morning I awoke still feeling tired.  By early afternoon I couldn’t keep my eyes open.  I took my daughter to her room and told her mommy needed to take a rest.  She gave me a hug and I went to the bedroom to lay down.

It didn’t take long and I was asleep.  As I slept I had a vivid dream.  It was really neat.  I was here at the house, looking out over the cornfield.  It was sunset and there was snow on the ground in my dream.  I was taking pictures of the sunset reflecting on the large silo’s (which don’t exist in reality) and thinking to myself I should do an oil painting of the scene. 

A neat side effect of my meds & B6 is that my dreams are very vivid in color and I have a good memory of them when I awaken.  When they are good dreams it’s really neat to remember them in such detail.

Shortly after taking the pictures of the sunset in my dream it faded to black as it normally happens before I awaken.  This time however, things took a dramatic unexpected turn and I have been left wondering.

Suddenly I opened my eyes (so I thought) and I saw gray & black fuzzy specks, like on an old TV when you don’t have a channel signal.  Next I saw petal shape outlines in white that started small and then grew in size as they moved from the center towards the outer edges.  One after another all starting in the center then moving (sort of like concentric circles).  Then I suddenly felt strong tingling sensations in the top of my head.  In this “dream” I realized I was beginning to seize.  The tingles continued to gain intensity and then washed down my neck, shoulders and body in relentless waves.  In my thoughts I knew I was having a seizure but was unable to stop it.  I wanted it to stop.  I didn’t like it at all and for the first time I felt a strong sense of fear.  It seemed to go on for a very long time. 

When I did finally manage to wake up I was completely confused.  I thought it was a really weird dream… at least that’s what I tried to tell myself.  All my body wanted to do was go back to sleep.  My mind did not want to go to sleep as I was still feeling a sense of fear and wondered if it was possibly a ‘real’ seizure?  When I finally managed to sit up I realized I had been drooling.  My cheek was wet and my pillow was drenched where my head had been laying.  Still I tried to convince myself this was just a weird dream.

Why then am I now wondering if it was a seizure?  Several reasons.  First the sense of confusion which is still lingering nearly 8 hours later.  Second, I began developing a headache right after awaking and it’s still with me now.  Third, I am exhausted and achy.  My body hurts, my  head hurts and I feel like I could sleep a week easily.  Lastly, when I got up my daughter asked me if I was “Ok?”  Apparently she heard something and was worried something was wrong with mommy. 

My neurology appointment is on 14 March, so I will definitely be telling my neuro about this and see what he says.  Maybe it was just a dream, but I have to say it was a very disturbing experience and I won’t be forgetting it any time soon.

Cat

My Seizure History - Part 2

The minute we got home following the neurologist appointment when I got my test results the count down began.  I marked on the calendar what would be the 90th day following the first (hopefully only) seizure when I could finally drive once again.

August 24th at 7am I was awakened by my hubby.  He told me, “you just had another seizure.”  My response was simply, “oh crap,” then I went back to sleep.  It wasn’t until several hours later I awakened, sore, head splitting with a migraine and a bit confused as to why I had been asleep so long and why my hubby was home on a day he should have been at work.  That’s when the reality sank in that I indeed had another seizure.

The neurologist had told us if I did have another we didn’t need to call 911 unless the seizure lasted longer than 5 minutes.  All there was to do at this point was try to rest.

The next day David called the neurologist and left a message that I’d had a second seizure.  It had only been 67 days since the first seizure. 

We were a bit surprised that the neurologist never called us back. 

During that time my husband’s father was not doing well.  He was in a nursing home and his health was going up and down.  We were also at that time preparing to make a decision as to whether or not to renew the lease on our apartment or not.  Add on top of that the new school year was beginning, which is one of the intensely busy times of year for my hubby who works for the school district.

What we had both forgotten was that we had left our old cell phone company.  We decided to go with trac phones until after the start of the new year.  So the neurologist DID try to call us back, but we had new numbers and he only had our old numbers.

Later on in September as we were in mid-move from our apartment to a house rental, David’s father passed away.  Let’s just say that 2011 was a very tough year for many reasons.

In January we received a reminder card in the mail from the neurologist’s office.  It was time for my 6 month follow up appointment.  Before we even had a chance to call and set up the appointment I had seizure #3.  January 5, 2012 at 4:55am came the tonic-clonic.  This one was a tad different.  For some reason I regained consciousness at the end of the clonic phase.  I heard the sounds I was making, saw my arms jerking and couldn’t do a darn thing to stop either.  It was the end of the clonic phase, so it was only a few seconds that I was aware I was seizing, but wow, it was a very weird experience!

January 13, 2012 I had the follow up appointment with the neurologist.  We talked about the 2nd and 3rd seizures.  He gave me a sort of “hand slap” about not being able to get ahold of us after the 2nd seizure and said we needed to get me on medication to try to stop and/or control the seizures.  He again asked Dave the specifics of the seizures and asked me specifics of the post-ictal phase of them.

During the discussion he asked if I ever stared off in space (and explained absence seizures).  I said no and then double checked that Dave had never seen me do that.  Then I asked about something that’s bothered me for years.  I told the neurologist about how on occasion I will go to bed at night and as soon as I lay down I hear voices or music, sort of muffled, like a tv or radio was left on in the other room.  It has caused me on more than one occasion to get out of bed and check that tv’s & radios were off. 

The neurologist simply said, “hmmm,” then changed the subject back to trying the medication Keppra.  All I could think at that point was, “great, I’m having seizures and NOW the neuro thinks I’m nuts too!”

Since that time I’ve been learning a great deal about epilepsy and the many different types of seizures… one of which is exactly what I described to the neuro (music /voices) and is considered a simple partial seizure!  I’ve also discovered that several things I’ve always brushed off as being symptoms of my fibromyalgia are in fact simple partial seizures as well.

It would seem my seizure history goes well beyond that seizure on 18 June 2011!   Recently, I was reminded that during my first marriage, while living in Yankton, South Dakota… I had a tonic-clonic seizure after a routine blood draw in my doctor’s office.  That was sometime around 2002 or 2003.  I’d forgotten all about that! 

Needless to say, I have a great deal to discuss with my neurologist at my upcoming appointment on 14 March!

Cat

My Seizure History - Part 1

The 16th & 17th of June 2011 my husband and I were attending a business conference in Kearney, Nebraska.  Friday was a long but exciting day.  After the conclusion of the conference we headed back to Omaha.  On our way home we stopped in Hastings to visit my step-mother.  My father had passed away April 22nd the morning of Good Friday, and we wanted to see how Dorrit was doing.  We had a wonderful evening and we all went out to dinner together.  My friend Theresa and her family kept our daughter Emily with them overnight while we were away at the conference.  That Friday, she text me and asked if Em could spend another night with them.  Em was having fun and Theresa thought it would be easier on us if we didn’t have to rush back to Omaha to pick her up.  We agreed to let her stay another night, which turned out to be a “God thing.”

We arrived home around 11:30pm, exhausted.  We literally dropped our suitcases and laptops in the living room and went straight to bed.

At 3:10am I awoke (regained consciousness) in the back of an ambulance on the way to Lakeside Hospital.  I couldn’t move and thought I was dreaming until the EMT began asking me questions.  He told me I’d had a seizure and my husband had called them.  He reassured me that everything was fine.  I was very confused.  A seizure?  Me?

He asked me my name, my date of birth, my age and where I had been / what I’d been doing earlier that day?  I knew my name, told him my date of birth then proceeded to give him the wrong age… I made myself a year older (you’d think being a woman I’d err on the side of making myself younger! LOL ) When it came to where I had been or what I’d been doing I was clueless.  He told me not to worry, just relax and said he was going to start an IV.  I remember being able to lift my left arm for him.  I felt the IV needle go in, the cold IV fluids going in and then passed out again.

Once we arrived at the hospital I remember being taken out of the ambulance (vaguely).  I have no memories of what the EMT’s looked like, I never saw their faces. My first clear memories are from inside the ER.  After transferring to the bed I saw David, my husband, come walking towards the exam room I was in.  I looked at him, threw my hands up and made a face like, “what the heck?” He smiled, relieved to see what he’d consider a typical “Cathleen” response.  Then I looked expecting to see Emily by his side and was shocked (almost panicked) that she was not with him.

When I asked where Emily was he looked at me and said, “Seriously?  You don’t remember?”  I said no.  The nurse assured him it was normal to have amnesia after a seizure.  After some prodding I eventually remembered she was with my friend Theresa, but had no idea why.  It took quite some time and prompting before I realized we’d been at the conference.  At this point I was still unconvinced I’d had a seizure and even asked David if he was sure he didn’t dream I had a seizure and called 911?  He laughed and said, “No, I didn’t dream it, you HAD a seizure.  The firemen and EMT’s couldn’t even wake you up!”

Uh… firemen?  Suddenly as I was becoming more aware of things and I also became quite … well… mortified.  I was sleeping nude… and now I was finding out that our apartment had been full of firefighters as well as the two EMT’s all trying to awaken me.  I wanted to crawl under the bed!

The ER nurse was incredible!  I couldn’t have asked for a better nurse. She was supportive and caring.  I would love to meet her again and give her a big ole hug and a thank you!  She did her best to reassure me that the EMTs and Firefighters had “seen it all” and I had no reason to be embarrassed.

The ER doctor however, was quite the opposite.  He seemed convinced that drugs or alcohol had been involved in my seizure.  It wasn’t until my urinalyses and blood panel work came back that he suddenly changed his tune a bit, realizing there were no drugs or alcohol in my system.  My EKG was normal and once my CT scan results came back negative, he then said what happened was not a “real seizure” because I had not (in his words) “peed or pooped during the event.”

We were sent home after being told to follow up with our general practice doctor and a neurologist.

During my time I the ER I had a wicked migraine and couldn’t wait to get home so I could take my Excedrin!  Once the migraine began to subside I was completely spent.  The rest of the morning and afternoon I was in bed sleeping.  In the late afternoon my girlfriend brought our daughter home and checked on me.  It wasn’t until I got out of bed that I realized every muscle in my body hurt, like the worst fibro flare up ever!  My legs were weak and shaky and all I wanted to do was go back to bed.

First thing Monday we saw our general practice doctor.  As David briefly described what happened our doctor said immediately it was a classic tonic-clonic seizure.  He said it was beyond him and I needed to see a neurologist.  He told us a huge number of people every year experience their first ever seizure and that half of them live the rest of their lives never having another.  We all hoped that would be the case.  He also shook his head when we told him what the ER doctor had told us about it not being a “real seizure.”  He said not all people lose bladder or bowel control during a tonic-clonic seizure, and the ER doctor should have known that.

I never really got the full picture of my seizure until we saw the neurologist.  As David described to him what happened the neuro would stop him and ask very specific questions.  Let’s just say my jaw dropped more than once hearing the description and I even said, “really?  I did that?” a few times too.

Apparently at the very beginning of the tonic phase I let out a cross between a scream and a moan, which is what awakened my hubby.  Then he said my body went ridged and almost appeared to levitate when I stiffened. That only lasted seconds, quickly followed by total body convulsions (clonic phase) during which I was making gasping/ moaning/swallowing sounds.  The entire seizure lasted less than 1 minute, but seemed like an eternity to my poor hubby.

The neuro assured us it was a tonic-clonic seizure, gave us the same seizure statistics as our family doctor, and then ordered tests and a follow up appointment.   A week later I went to the hospital for a sleep deprived EEG followed by an MRI without and with contrast.  The next week we went on the follow up to get the results.

Both the EEG and the MRI were negative.  I had mixed feelings about this.  Part of me was very happy they had not found anything terrible!  Yet part of me was bothered that nothing was found that could explain the seizure.

Being the computer geeks we are, we decided that apparently my brain just needed to “reboot” and I’d probably never have another seizure.

After some brief discussion we were told I needed to be seizure free for 90 days before I could drive and I would need to have a follow up appointment in 6 months.  Then the bomb dropped.  The neuro looked at me and said, “If you are developing a seizure disorder the second seizure will follow within the first year.”

A year?  I have to “wait and see” for an entire year before we can say it was an isolated incident?  I was very surprised.

We went home.  We kept the hope that this would be a one time event and I’d go on the rest of my life seizure free, but that was not to be the case.

To be continued…

Cat

I WILL NOT KEEP SILENT!

The more I read and learn about epilepsy the more I find that there are still stigma’s attached to the “E” word.  Many people hide the fact that they have epilepsy and fear that someone will find out.  I REFUSE to keep silent and hide! 

I understand why they hide their epilepsy, don’t get me wrong, I am not angry or disapproving of their decision to hide.  What I am upset about is that due to lack of understanding and awareness of the truths about Epilepsy people are made to feel they need to hide!  In this day and age people shouldn’t fear someone may “find out” they have “E.”

Since my generalized tonic-clonic seizures began, a little less than a year ago, I have learned a great many things about epilepsy.  A year ago if you said the word epilepsy I would of thought several things. 

1. Grand Mal seizure
2. Petit Mal seizure
3. Go on meds & everything’s fine.

I now know just how wrong I was and how little I knew about the condition! 

There are over 30 different types of seizures.  Not all seizures effect muscle control (no jerking or convulsions). 

One in ten adults will have a seizure at some point in their life.  One seizure does not mean epilepsy.  Two or more unprovoked seizures mean epilepsy.  One in one-hundred people will be diagnosed with epilepsy!

Medication can be a beginning step in the right direction, but it takes a long time to find out if your medication is working.  There are over 18 different antiepileptic drugs and some are seizure specific.  Sometimes a person may require more than one type of drug to control their seizures (especially if they suffer from different types of seizures).  Some people may even require surgery to try to control or stop their seizures.  Then, lastly, some people may live their entire life never having control of their seizures.

I learned about something called SUDEP.  It’s Sudden Unexpected Death in Epilepsy.  This refers to the unexplained death of an individual, with a diagnosis of epilepsy, who dies suddenly, in benign circumstances, without a structural or toxicological cause for death being found at autopsy.  I have also learned I am at a slightly greater risk for SUDEP because of my nocturnal generalized tonic-clonic seizures.  See: SUDEP – Wiki  and SUDEP Aware.

Did you know that seizure related deaths occur at a higher rate than breast cancer deaths?  I didn’t.  Here’s a few facts for you:

“Research has estimated that approximately 50,000 people die each year in the USA from status epilepticus (prolonged seizures), SUDEP, and other seizure-related causes. SUDEP accounts for 8-17% of deaths in people with epilepsy. Roughly 1 in 100 sufferers of severe epilepsy die of SUDEP every year. For sufferers of mild idiopathic epilepsy (epilepsy of unknown cause), the figure drops to 1 in 1,000 per year.”  (Wiki)

Since my first nocturnal generalized tonic-clonic seizure, as I was regaining consciousness in the back of an ambulance, I have felt at peace.  The more I learn about “E” the more I feel “blessed with a burden.”  Sounds strange huh?  Let me explain.

I am a Christian.  I believe God can heal me, but I also believe He can choose not to.  I believe God is allowing my epilepsy for a purpose.  Either to teach me, teach others through me, or both.  Whatever the reason, I trust God and I know He is in control.  So I feel peace.

The more I learn about “E” the more I want to shout from the rooftops everything I am discovering!  I refuse to remain silent and hide.  I want to speak out for those who can’t or who are afraid to.  Let’s put an END to the silence.  Let’s put an END to the stigmas attached to one of the most common neurological conditions!

Think about participating in Global Purple Day on March 26th.

Speak up and don’t be afraid to TALK ABOUT IT!

Cat

The Journey Begins…

Welcome to my new journey in life, living with and learning about epilepsy.  This wild ride began at 3:00a.m. on 14 June 2011 when I experienced my first nocturnal generalized tonic-clonic seizure.

More than 180,000 people are diagnosed with epilepsy every year.  Epilepsy affects nearly 3 million Americans and 50 million people worldwide.  Seven out of ten epilepsy patients never find a clear cause for their epilepsy. 

Does that shock you?  It did me.  

So join me as I learn and discover more about this new journey in my life living with epilepsy.  I’m sure it will be a wild ride! 

Oh, why the blog name My Excited Brain?  Well, I like to deal with adversities in my life using humor.  My type of seizures are caused by all the neurons firing at once in my brain making my brain sort of… over excited.  I jokingly said to my husband after researching done following my third seizure, “my brain’s just so excited!” (grin)  That became the inspiration for this new blog.

Keep smiling!
Cat