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

A Long Summer

It has been a very long spring/summer this year.  That’s why it has been a long time since I posted.

After recovering from the virus that hit me just prior to the proclamation signing I developed another virus.  This one hung on for a long time.  After a month I reluctantly went to the doctor who told me my lungs were irritated and put me on the steroid prednisone for seven days.  Instead of getting better I got worse.  I returned to the doctor and discovered it had turned into a bacterial infection.  I was sent home with a prescription for antibiotics (10 days) and codeine cough syrup.  After what seemed to be an eternity I finally got well again.

However during this time things had become very hectic.  We had been house sitting for 6 months and the home owners asked if we’d like to stay through the summer and following winter.  We love the house and property so we said yes!  When they came home in the spring, they began to clear out things so we could unpack more of our stuff and settle in better.  Although it was nice and feels good to not be living out of boxes, it did cause quite a bit of over doing it on my part.  My body simply doesn’t handle heat we had this summer and heavy work very well any more.  It’s not only because of my epilepsy, but because I also have fibromyalgia.

During all this time I had some family issues going on with relatives.  It didn’t take long before I began to feel like a pressure cooker about to blow.  I also began to withdraw from everything.  I had tons of unanswered emails and rarely interacted outside my home. I was tired all the time.

Although levetiracetam can cause depression I really didn’t believe that was the culprit.  I think the combination of situations all collided at once and the result was depression.

One of the hardest moments prior to my “shut down” was learning that members of my immediate family have been talking about me.  They apparently believe I looked up epilepsy online and convinced myself I have it.  That was the preverbal straw that broke the camel’s back.  I felt like I’d been punched in the stomach.  Family is the greatest source of support and I just discovered I did not have support from them.

When talking to my husband about it he told me maybe we should send them all copies of the medical bills and lists of tests that have been run and see what they say. 

I keep thinking to myself who in their right mind would ever want to have epilepsy?  Why would someone think I would “convince myself” I have a condition/disease/disorder such as this?  Do they think I enjoy being on medication that is causing a laundry list of side effects that I have to deal with daily?  Do they think I am enjoying watching my hair fall out by handfuls every time I brush my hair, or having vertigo, dizzy spells, insomnia and on and on?

Then there are also whispers about how I keep posting epilepsy information on my facebook page and it’s annoying.  Really? Seriously?  I am an advocate for Epilepsy Awareness.  I am an official Ambassador of Purple for PurpleDay.org.  With 1 in 26 people being diagnosed with epilepsy at some point in their lifetime OF COURSE I’m going to spread information and awareness.

Needless to say all of these things began getting to me until I withdrew from everything and almost everyone. 

Slowly now I am getting myself back on track.  It’s still a struggle and it still hurts that my family isn’t supportive, but I have to carry on.  I need to carry on for myself, my husband and daughter who I love dearly and who are always there for me.  I have to carry on for all the people diagnosed with epilepsy and those who will find themselves diagnosed within the days/weeks/months/years to come.  Bottom line, I have to carry on.  So I am holding my head high again, picking myself up and pushing forward. 

Hugs,
Cat

Sometimes it’s not the seizures…

Living with epilepsy you can become overwhelmed as you deal with seizures and the lingering effects of them.  However, it’s not always difficulties from the seizures themselves that are cause for struggle.

Side effects of medications can cause many complications and struggles in daily living.  Sometimes it feels like I’m forced to decide which is the lesser of evils, dealing with seizures or dealing with the side effects of my medication?

This struggle has never been more apparent to me than the past six days.

On Wednesday April 11th I awoke with a sore throat.  That day I would be traveling to the Nebraska State Capitol in order to receive the Purple Day Proclamation from the Governor of Nebraska.  I also had to give a short speech about Purple Day, epilepsy and the proclamation.  A little sore throat was not going to stop me!  I did in fact attend, gave my speech and had my picture taken with the Governor:

However, in the following hours I noticed I was becoming more and more exhausted.  By evening it was apparent I was becoming sick.

By Thursday morning I awakened with an incredibly sore throat.  It felt as though I had burning coals in the back of my throat.  I couldn’t swallow anything without pain.  I was growing weaker by the minute and nothing seemed to help.

Friday morning, my birthday, I was getting worse.  My husband (who had the day off) made a doctor’s appointment for me.  The doctor did a strep test, which thankfully came back negative.  The downside was it meant what I have is some sort of virus.  That meant that they couldn’t give me any kind of medication, I would have to ride it out and let my body fight off whatever it was I had.

This is apparently a direct result of my Levetiracetam.  Among many other side effects, Levetiracetam is known to lower your immune system and can effect both your white blood cell count & red blood cell count.  Neither my husband nor my daughter caught whatever this virus is which also goes to show I have a lowered immune system.  To be honest all I can say is that this really sucks!

Our general practice doctor did tell me that along with my vitamin B6 I needed to add Vitamin D3 to help boost my immune system.  My hubby picked some up for me and I began taking it that day.

It’s funny though, everything I’ve been learning about Levetiracetam & it’s side effects (depleting B vitamins, depleting D vitamins, lowering immune system & blood counts) have all come from sources other than my neurologist.  My neuro hasn’t offered any information in regards to dealing with side effects since placing me on Levetiracetam.  Sometimes I think our general practice doctor knows more about epilepsy than my neurologist!  Frustrating, but I am thankful for my GP Doc! 

Finally after 4 days in bed I awoke this morning feeling better.  I’m still not at full strength, but I’m much better than I have been this past week.  My throat for the first time in nearly 6 days is mildly sore, a great improvement over the burning coals sensation.  I’m on the road to healing, but it’s taken much longer to fight off this virus than it ever did pre-Levetiracetam.

Cat

Why am I speaking out and being an advocate?

I know a lot of people in my life are wondering why I am being so outspoken about epilepsy.  It’s not normally in my nature to be vocal or put myself in the public eye.  Most of my life I’ve spent trying to blend into the crowd and “fly under the radar” so to speak.

I’ve thought about this and decided to express exactly why it is I am speaking out, publicly, about epilepsy.

First, I feel God is calling me to do this.  When I became a youth leader many years ago I didn’t do it on a whim, but rather because I felt a strong undeniable calling to youth ministry.  It was unlike anything I had ever felt before in my life.  When I began to feel the calling to speak out about epilepsy (before my diagnosis) it was the same strong undeniable calling.  I reminded God I’m not a good speaker, I’m timid/shy, I had no idea how to even get started with this undertaking.  Then He reminded me that He simply wanted me to accept His will for this season of my life and that by doing so He would open the doors, give me the voice, the opportunities and the words.

Second, after beginning to learn about epilepsy, how misunderstood it still is, how little public understands, the lack of funding /research, and how prevalent epilepsy is, it just seemed to be the right thing to do.

Third, I am also doing this for my daughter, Emily.  I want to be an example to her that no matter how timid you are, no matter how tough the road ahead seems to appear, you can overcome and accomplish anything when you’re following God’s will.  It’s much the same as when I participated on the worship team at church.  I love to sing, but I am terrified of singing in front of other people.  Not only did I have to sing in front of the congregation, I also had to sing with a microphone!  I was a bit notorious for not turning my mic on in the beginning.  Since then I’ve not only sung with the worship team, but I have also done several solos (which also scares the pants off me!).  I didn’t do it to be in the spotlight, I did it to show Em that no matter how scarred mommy was of singing publicly, I overcame my fear.

So those are the main reasons I have been speaking up and speaking out about epilepsy. 

Cat

A Matter of Semantics

As I embark on this journey with epilepsy and interacting with more people in the epilepsy/seizure community I’ve encountered many different views.  Although I’ve learned a great deal that’s positive, I’ve also discovered dissention which troubles me.

Let’s face it, some people love to nitpick.  They seem to be argumentative by their very nature.  Others may lack knowledge on a particular subject and form opinions based on that limited knowledge.  Then there are some who don’t seek out information independently of what their doctors say, trusting their doctor knows best.

What troubles me in particular is a certain amount of nitpicking when it comes to the very basic terminology used for epilepsy.  I’ve seen fights erupt within the epilepsy community over a simple word or turn of phrase.  

Let’s start with the very definition of epilepsy as defined by the Epilepsy Foundation: “When a person has two or more unprovoked seizures, they are considered to have epilepsy.”

That seems pretty straight forward, right?

Yet, that being said, many people with reoccurring unprovoked seizures will argue that they do not have “epilepsy,” they have “a seizure disorder.”  (They tend to say things like, “Oh I don’t have epilepsy, I have a seizure disorder due to a brain injury” or something similar.)

I’m not totally sure why the word “epilepsy” is such a bone of contention.  Perhaps, because their doctor/neurologist used the words “seizure disorder” they believe it means they don’t have epilepsy?  Maybe they are scared of the word “epilepsy” and fear what others may think if that term is used?  Maybe a combination of reasons?  I’m not sure, but it frustrates me nonetheless.

Next comes the debate is epilepsy a “disorder” or a “disease?”

In researching epilepsy for my own purposes I’ve read many neurological articles which refer to epilepsy as both a disorder and as a disease.  I can accept either opinion, though personally I tend to lean to the disease terminology. 

An argument was recently made by someone who was offended to be told epilepsy is a disease was that epilepsy is not contagious therefore it can not be considered a disease.

That is not firm ground on which to build an argument.  Why?  Because it is a basic fact that not all diseases are contagious.  I can name a long list of recognized diseases which are not contagious, but lets start with the basics of defining a disease.

From the free dictionary: “disease /dis·ease/ (dĭ-zēz´) any deviation from or interruption of the normal structure or function of any body part, organ, or system that is manifested by a characteristic set of symptoms and signs and whose etiology, pathology, and prognosis may be known or unknown.”

A really good argument for why epilepsy can be considered to be a disease can be found here:  EPILEPSY IS A DISEASE (NOT A DISORDER) - ONE INDIVIDUAL'S PERSPECTIVE

Another touchy subject I stumbled into deals with the very defining semantics of epilepsy.  If you have epilepsy are you “a person living with epilepsy,” or “epileptic?”  Never in my wildest dreams did I imagine referring to myself as epileptic would be such an earth shattering, offensive thing to many people!  I just want to say, “Really?”

We have become such a “politically correct” culture that we’ve begun redefining medical terminology to make things sound less “offensive” in the opinions of some.  Not all the newer definitions are a bad thing, however changing “epileptic” to “living with epilepsy” seems utterly ridiculous to me.

For example, when someone has blood glucose issues what are they called?  Diabetic.  Yep, someone living with diabetes is called a diabetic.  Someone living with blood clotting issues is called a hemophiliac because they live with the bleeding disorder hemophilia.  So then why is is such a huge issue to use the term epileptic for someone living with epilepsy?

I think the bottom line is simple.  Public perception, negative stigmas and myths that even today still plague people diagnosed with epilepsy. Rather than putting ourselves out there publicly and educating our friends, families, co-workers etc. many choose to hide our disorder/disease away and/or change the terminology.  What’s wrong with this picture?

We are giving far too much negative power to these words.  Whether it’s due to our own personal fears or because our doctors/neurologists are not well educated in the subject, we are as much to blame for continuing the negative stereotypes, myths and stigmas.  We as a community should be learning and then educating others rather than redefining existing terminology.

Who out there knows the Harry Potter series (books or movies)?  Remember Lord Voldemort?  No one dared speak his name and he was referred to as “he who shall not be named.”  His name was given power simply due to the fear his name invoked.

I think it’s much the same in the epilepsy community.  The words epilepsy, epileptic, disease… they carry a burden of fear for many people.  Not just those diagnosed with it but also friends, family and people who have little knowledge about it.  But as they say, “Knowledge is power.” 

In my opinion we need to stop allowing the negative connotations to spread and start educating and speaking the truth about epilepsy.  Stop being afraid and find our inner strength to not only educate others, but to first educate ourselves.  Don’t be afraid to question our neurologists, after all they work for us and they can be fallible.

With epilepsy being so prevalent (approximately 1 in 100 people diagnosed) we need to stand together as a community and stop nitpicking over semantics.

Just one epileptic’s opinion.
Cat

Purple Day Awareness & Updates

Well it’s been a while since my last post.  So much began happening so quickly I found myself quite busy in the days leading up to Purple Day.

First, I applied and was accepted as an Ambassador of Purple at purpleday.org.  After becoming an ambassador I then sent official requests for purple day proclamations from our Governor and Mayor.

I also asked our pastor if I could speak about Purple Day & Epilepsy in church on 25 March (the day before Purple Day) and he said I could.  I decided to make awareness ribbons for members of the congregation.  I began crocheting small purple Irish roses and attaching them to lavender ribbons with gold pin backs.

Next, I got to thinking how many school districts here transport special needs kids.  Many (probably without knowing) transport children with epilepsy.  Knowing that the (NSTA) Nebraska School Transportation Association are always looking for good speakers for conferences I decided to contact the NSTA executive committee and make the suggestion to have a speaker from the epilepsy foundation come speak at a conference.  The executive committee liked the idea and gave me the green light to contact the epilepsy association.

I made a basic inquiry on behalf of the NSTA and met Laura.  She is our local Epilepsy Education Coordinator.  As we emailed back and forth I told her part of the reason I got the initial idea was because of my own tonic-clonic seizures.  We began emailing and then spoke on the phone.  A few days later she met us here at the house.  She brought a bunch of information for me and we spoke for quite a while.  It was wonderful.

During her visit with us I gave her two of my epilepsy awareness ribbons.  One for her and one for her daughter.  She really liked them.  She told me she was looking for awareness ribbons for one of the Lincoln support groups so I asked if she’d like me to make some for them?  She said they’d need about 100. 

After she left we went out and I got more supplies.  I began that day crocheting more roses and putting together more ribbons.  I managed to finish the pins and she picked them up on the 18th.  That’s when I had to begin making the ribbons for church.  I also had to put together some power point slides about Purple Day and bulletin inserts about epilepsy for church.

The I got an unexpected phone call.  I didn’t recognize the phone number but decided to answer it.  It was the Governor’s office calling me!  I was told the Governor had approved the Purple Day proclamation, but it had been received too late for me to be invited to the March signing ceremony.  Instead they invited me to the April signing ceremony to receive it from the Governor.  I couldn’t believe it!  April 11, just two days prior to my birthday, I will be going to Lincoln to meet the Governor and receive the Purple Day proclamation!

During all of this I noticed on facebook that a local reporter was asking for news story ideas.  I messaged her and gave her the information on Purple Day including the website.  I told her maybe they could contact the epilepsy foundation.  To my surprise she messaged me back thanking me and said she’d get it on the schedule.

On Wednesday 24 March I received an email from the Mayor’s Office telling me the Purple Day proclamation was accepted and being signed by the Mayor!  They mailed it right away and I had it in time (it arrived Friday) so that I could display it on Sunday at church!

Saturday 24 March was a bit of a crazy day.  It was my mother-in-laws birthday and she had requested I make her birthday cake.  I spent the morning getting her cake ready while also trying to finish up awareness ribbons and my speech.  I got to bed very late that night after finally finishing everything I needed for Sunday morning.

Sunday 25 March was “my” Purple Day.  When I got up, I put purple highlights in my hair and dressed in purple.  My speech went well and I got some positive feedback.  I saw many members of the congregation wearing their awareness ribbons after church.  By the time we got home I was totally exhausted, but excited that everything seemed to go well.

26 March, Purple Day… I really didn’t have plans other than resting.  I awoke to find David home.  He told me he didn’t feel too well when he got up and decided to take the day off.  I got busy taking part in something called “seize the internet,” sharing epilepsy facts on facebook and twitter.  Then I got the phone call!

It was mid morning when Laura called me.  She said she’d just received a phone call from WOWT news asking her if she would do a live on-air interview on the 4pm newscast.  She called me to tell me and also said she had a suspicion I might have had something to do with it.  I laughed and confessed to her that I had contacted a reporter a few weeks prior.  That’s when Laura asked me to come with her.  I was stunned.  I said I would and she called WOWT back to see if it would be ok to bring me along.  She called back a few minutes later telling me they said to bring me too.  I looked like a deer in the headlights at that point and my hubby was laughing at me!  ( I still had purple in my hair!)

She picked me up at 3:15 as we had to be at the station by 3:30 to get ready.  It was an interesting experience being in the studio.  It looks so much bigger to me on the tv than it does when you’re actually in it.  Right after the interview I thought to myself, “that was a train wreck!” because I had been prepared to discuss Purple Day, how it began, who started it etc., but instead was asked questions about my life with epilepsy.  It caught me a bit off guard and I felt like I’d been very awkward during the interview.

When I got home, David had recorded it on the dvr and I was able to watch it.  It wasn’t nearly as bad as I thought it had been in my head thankfully.  Yet it still wasn’t as good as I’d hoped.  Still, all in all we did get out information on epilepsy which was important.

The last two days I’ve been basically recovering from all the excitement.  I am still feeling quite exhausted physically (which is probably also caused a bit by being nervous about my speech and about being interviewed). 

All in all I am proud of what I did manage to get accomplished in a short amount of time for Purple Day.  I truly feel God’s hand at work in all of this.  I have no doubts He called me to speak out and then opened all the doors!

What’s next?  Well for me I have an appointment with my neurologist on Friday.  We had to reschedule because my hubby had a meeting he couldn’t miss on the 14th. 

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