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

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

A Good Side Effect!

If you have to have a side effect from a medication you might as well have a good one!  I am happy to report I have experienced just that!

For the first time in 4 years I have been migraine free for one month!!

My neurologist said that migraine prevention or reduction could be a possible side effect of the Levetiracetam.  I kept my fingers crossed and hoped that might be the case for me.  Even though it’s only one month, for me that is a lot.  I’ve had monthly migraines for the past 4 years without fail. 

My migraines are classified as menstrual migraines, meaning I get them anywhere from 2 days prior to the onset of my period until two days after it begins (a four day window).   I can always tell when I’m about to get one too.  I get a stiff sore neck, nausea, and the worst… my sense of taste goes wacky on me and nothing tastes like it should. 

My three tonic clonic seizures have all occurred this past year when I developed the migraine at night while sleeping.  I’ve suspected that the nocturnal migraines are what trigger the seizures, now I’m not so sure.  Although I do still feel there’s some sort of connection, I have learned that the changes in my sense of taste could in reality be a simple partial seizure.  The nausea could be an aura of my nocturnal migraine, or it could be an aura to the oncoming tonic clonic.  It leaves me scratching my head (and I think my neurologist too) .   They do say that migraines & seizures are “cousins.” 

Women who experience migraines with auras are at a higher risk of developing seizures/epilepsy.  Not all people with epilepsy have migraines and not all people with migraines have seizures, but there is definitely an overlapping.

I also have to report that I am finally feeling like myself again.  I had quite a few days there where I went from apathetic to very depressed.  I was close to calling my neurologist.  I gave it a set number of days and if it didn’t get better I was going to call.  Then finally it did get better.  I am wondering if the side effects of the Levetiracetam are amplified by hormonal changes?  That’s a question I will be asking my neurologist on the 14th of March.

Speaking of which, I am not exactly happy with my neuro or his office at this point in time.  We realized after our last visit (David, my hubby always comes with me) that the neuro didn’t give us an exact answer.  So last Thursday I called his office and asked a direct question.  I was told by his nurse she would find out and call me back if not later that afternoon, then on Friday.  Friday came and went with no call.  I still haven’t received a call back and it’s Wednesday… nearly a week later.  That in itself is frustrating.  I’ll probably call Thursday morning since I’d really like to have an answer before I forget that I ever called.

I’ve been busy lately, crocheting like crazy.  I’m making lavender awareness ribbons with small crocheted purple Irish roses on them for Global Purple Day 26 March.  Lavender is the international color for epilepsy awareness, and purple is the color chosen by Cassidy Megan, the founder of Global Purple Day.

Well it’s late and despite my Levetiracetam insomnia I need to try to get some sleep.

Hugs to all,
Cat

Tough Day

Today has been a tough day for me.  Last night I didn’t get to sleep until well after 2:30am.  Thankfully my hubby didn’t have to work today due to the holiday.  I woke up at 4am, 5:30am, 6am and then I think it was around 8am when I noticed Dave wasn’t in bed and I went back to sleep again.  Around 9am ( I think) I felt our daughter lay her stuffed giraffe in bed next to me and whisper, “here mommy.”  I slept a little while longer and finally got up at 10:45am.

You’d think I’d feel great, but I felt like I had no sleep at all.  Hubby had closed the bedroom door so I could maybe get some sleep as he could tell I’d been tossing and turning.  He saw Em sneak in the room and give me her giraffe.  I made sure to give her an extra tight hug, kiss and a thank you for her sweet gesture of offering me her giraffe to cuddle.

Dave was a trouper today.  He watched after Em, did dishes and other stuff and let me try to rest.  I spent nearly the entire day in my jammies and crocheted some tiny roses for the Epilepsy awareness ribbons I plan to give out for Global Purple Day.  Still, I felt like I’ve been run over by a truck.  No energy and zapped of any happy feelings.

Maybe it’s partially due to the weather.  It’s been gloomy and rainy all day and that could be kicking my fibromyalgia into high gear.  However several times this evening I’ve cried (hid it from hubby though).  I’m not sure why I feel so down today/tonight.  I’m hoping it’s not a side effect of the generic keppra rearing it’s ugly head.  I know that depression can be a side effect, but was hoping I wouldn’t experience it.  We’ll see.  As I said it could just be the weather triggering my fibro.  That and my lack of sleep the past few days.

I just looked at the clock and see it’s just after midnight now.  I thought I’d be in bed long before this. Uhg.  So I’ll end here and try to get some rest.  Hopefully this is just a brief passing thing and I’ll feel better tomorrow. 

Hugs to all,
Cat

Reactions to Epilepsy

Recently, a forum I read had a poll question about how people respond to epilepsy for you.  Some of the choices were things like: “overreact, under react, just right, they don’t know, they don’t care and other.”

Many people chose to hide their epilepsy from all but their closest friends & family (due to fear caused by the stigmas attached to having “E.”)

I haven’t been silent about my seizures.  I’ve been honest since what I thought was my first one on the 14th of June 2011.  (more on that later) 

This poll question made me stop and think about the reactions people in my life have had.  I’m happy to say most have been supportive and understanding.  They’ve questioned me, wanting to know & understand more about epilepsy and what it means.  A couple people have overreacted and I’ve had to sort of calm them down and assure them the world isn’t ending, my life isn’t ending, it’s OK.  A few had no real reaction other than being relieved that in some way we finally had some answers.

I can’t complain, I am very blessed with supportive people in my life.

Then Saturday happened.

It was my first “punch in the gut.”  I found out that a close family member (who I have not directly spoken to about my epilepsy) was saying that my epilepsy is made up & all in my head!  ----OK so they are partially right as epilepsy IS in the head…. but I digress.

They’ve apparently been saying to other family members that I “willed” myself into seizures after reading about them on the internet!  WHAT?

Have I read about seizures on the internet?  Sure!  AFTER my 2nd seizure, because I was trying to figure out what the heck was going on.  I knew the neurologist said that the 2nd seizure would follow within the first year if I was developing a “seizure disorder” ( the term they use for epilepsy because they feel it’s a softer blow than saying “E” outright).  I didn’t really learn too much and was still convinced I wouldn’t have another seizure… even though I’d discovered that 2 or more seizures = epilepsy.   AFTER the 3rd seizure on 5 January 2012 I read more so I’d know what kind of information I needed to have for my 6 month follow up with the neurologist later that week.  Glad I did too because I had everything in order to give him when we were in his office. 

I was literally speechless after hearing this.  After I got over the initial shock I then became angry.  Not your run of the mill “I’m miffed” sort of angry, more like totally enraged angry.  I could not believe this person would think such a thing much less say it out loud to other members of the family.  I wanted to call them immediately and say, “Do you really believe a neurologist would place me on an antiepileptic medication…. at a fairly high dosage… not to mention a very expensive medication if I was making this up? Do you REALLY believe a neurologist, trained in epilepsy and specializing in electrical anomalies in the brain, would be fooled by someone making it up? SERIOUSLY?”  AARRRRRG!

After speaking with my husband Dave, (ok more like ranting to him) he said I needed to let it go and try not to let it bother me.  (Good advice since stress & anxiety can trigger seizures in someone with epilepsy.) He said we know the truth and the people who truly love and care about me know the truth and that’s all that matters.

I also talked to one of my best friends about the situation.  Her response was maybe I should take the ambulance bill, the ER bill and the neurology bills to this person and show them the costs involved with my “made up” seizures.  She knows me well and the family member of whom I speak and was not surprised.  She told me (as did my hubby) not to waste my time & energy worrying about it.

Easier said than done I’m afraid.  It was a very painful blow from an unexpected source.  I’m no longer as angry about it as I was, but there is still pain from being deeply wounded by the situation.  It’s tough when you expect support, love and understanding from family and find that instead you are being talked about behind your back and dismissed as “making it up.”

For a short amount of time I began to rethink what I have felt to be a calling.  I thought about ending my blog, not saying one more word on facebook about epilepsy and telling our pastor I will not speak the Sunday before Global Purple day. 

Following my third seizure I had become excited with all I was learning about epilepsy and wanted to share it with anyone who would listen.  I have “reshared” posts of epilepsy facts from various epilepsy foundation facebook pages in order to promote awareness.  I felt called to become an advocate of epilepsy awareness.  I felt blessed to be able to do these things which not only help myself, but would help many other people.  To be able to speak for people who couldn’t or wouldn’t speak for themselves. Then with one blow from a family member I nearly gave all that up.

Now, after a few days to let myself settle down, although hurt, I will not let this person become a roadblock to doing what I know is right and what I feel God is calling me to do.  We all face roadblocks in our lives and they do not define us, it’s how we handle them that defines us.  I will not be stopped.  I will not let this person silence my voice and stifle my calling.

I think I just had my very first hard lesson in why many people choose not to disclose their epilepsy. 

Hugs to you all,
Cat

Joys of Medication… “dream a little dream” & “hair today, gone tomorrow.”

Almost all medications can involve some sort of side effects.  This is no different when it comes to antiepileptic medications.  Some side effects of Levetiracetam (generic Keppra) can be good, such as it may stop or reduce the number of migraines.

Still, other side effects can suck, big time.

First, let me say I am not a “morning person.”  Yet this morning I woke up at 5am, wide awake!  One of the side effects from my Levetiracetam is vivid dreams.  So far none have been nightmares.  Usually they are dreams that make me say, “hmm, that was weird,” when I awaken.  They are all very vivid and realistic.  This morning’s dream was one that came from memories in my past and left me feeling a bit uncomfortable.  Hence the reason I decided to get up and make coffee rather than try to go back to sleep.

Another side effect I’ve been noticing more increasingly is hair loss.  It seems every time I brush my hair or wash my hair I am seeing an increase of hair left in my brush or comb. Uhg.  I’m not going to go bald, I don’t have any bare patches, but it’s still a bit frustrating to see.  That’s just my own struggle with vanity I suppose.  The hair loss should taper off after I’ve been on the Levetiracetam for about six months or so.  It’s all just a part of my body getting used to the medication.

The dizziness and lack of coordination have gotten tons better already!  I’m happy about that.  It’s no fun standing up and suddenly  having the room spin, or walking across the room only to find you’re beginning to tip sideways into the wall, or even tripping over your own feet.  That was driving me a little crazy as I am not the most coordinated person in the first place! 

I am also no longer zombie like.  I don’t feel totally exhausted and out of it all day.  I really believe taking the 100mg of vitamin B6 with my morning Levetiracetam helped with that.

All of those side effects are not-so-bad in my opinion and well worth it when it comes to preventing my generalized tonic-clonic seizures.  So I’ll stick with my Levetiracetam as long as it seems to be keeping my seizures controlled and as long as I don’t develop some of the more dangerous possible side effects.

If you are placed on an antiepileptic drug my advice to you is not to give up on the meds during the first few weeks if you experience similar side effects as I have.  Give your body time to adjust, odds are it will and the side effects will subside.  However, if you experience some of the more severe side effects that are possible with these medications, do not hesitate to call your neurologist or epileptologist and discuss it right away.

Hugs to all,
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

Medical ID’s: Part 2

FINALLY yesterday morning after much anguish & debate I ordered my medical ID.

My biggest dilemma is that I am allergic to stainless steel, sterling silver and many other metals.  So the typical medical jewelry was not going to work for me.  I did find some beautiful gold pieces, but they had rather HUGE prices!

I tried one more time yesterday morning to find something and came across a titanium dog tag necklace that came with a titanium chain.  Other websites offered the titanium dog tag, but sold them with stainless steel chains. 

Even though it’s not the prettiest thing in the world, it will serve it’s purpose and could save my life.  I ordered it.  Due to being a first time customer, I received a discount on my entire order which helps.  I bought a USB emergency pin drive to go along with it.  It comes with pre-loaded software that I can put all my medical info in.  That way if something would happen and EMT or ER person can simply plug the USB into their laptop or desktop computer and have all my info at their fingertips.  It’s compatible with both PC and MAC and can hold 1Gig of storage.

My order is supposed to be here by Friday, so I should have everything before we go out of town to see family on Saturday.  I feel much more comfortable knowing that.  It’s one less weight off my shoulders.

Cat

Vitamin B6

The tired feeling which is a side effect of Levetiracetam was rendering me almost completely non-functioning.  I’ve had to force myself to do simple daily tasks because of the extreme exhaustion I was feeling.  I also noticed that I was becoming increasingly grouchy.  This worried me.  I noticed I was growing more and more irritated and quick tempered with Emily during the day.  Not good.

At first I thought it was simply I was tired therefore grumpy.  However it was worsening which led me to believe it might be one of the dreaded known side effects of the Levetiracetam.  That’s when I began researching to find answers.

I found several neurological websites discussing Levetiracetam and adding vitamin B6 supplements.  Apparently studies have shown that adding vitamin B6 with your Levetiracetam can curtail the side effects of irritability, tiredness and the “out of it” feeling.

Three days ago I began to take B6. 

Yesterday I noticed that the overwhelming tired feeling didn’t strike until very late afternoon.  Prior to taking B6 I would get that exhaustion within 2 hours of taking my Levetiracetam.  I also noticed I wasn’t being snippy with Emily.  It felt like any normal day and I wasn’t constantly on edge. 

I think it still remains to be seen if the B6 is truly making a difference, but so far it feels like it just might be doing the trick!  I’m hopeful that today will be much like yesterday and I’ll find I have more energy and less irritability. 

I’ve also been learning about some of the many different types of seizures (there are over 20 different types) and discovered I may have been having other types of seizures for years.  This is definitely a wild ride.

Cat

Medications: Brand Name or Generic?

Well, well, well, it seems I am learning something new every day! 

When I was prescribed Keppra we immediately got the prescription filled.  The pharmacist asked me if I wanted Keppra or the generic?  I said I’d need to ask the neurologist first.  The pharmacist told me the neurologist put “generic ok” on the prescription.  Without giving it another thought I said I’d take generic, thinking it would save us money.

I’ve been taking Levetiracetam almost two weeks now.  Initially I had some side effects.  My coordination was off, dizziness, vertigo, sleepiness and generally feeling “out of it” which occurred within 2 hours of taking the medication. 

In the past few days I noticed that most of the side effects were diminishing.  I no longer have coordination problems and the dizziness/vertigo is easing up as well.  However the drowsy, heavy feeling is unrelenting! 

I decided to do some reading online about the medication to see if I could find out how long it would take my body to adjust to the medication.  I was shocked with what I’ve discovered.  Apparently the generic form, Levetiracetam, is made by several different manufacturers.  It turns out that it’s vital that I always get it from the same manufacturer as they all use different “fillers” which could cause some serious problems. 

I also learned that there have been issues with the generic form.  The instances of serious side effects are higher with the generic brands.  The drowsy/heavy feeling, coordination problems, fuzzy/foggy feelings and some really bad/serious side effects (and even an increase in seizures) are much more predominant in the generics.

Now I am giving serious thought to having my neurologist switch me to Keppra (name brand).  I also learned that taking vitamin B-6 along with the Levetiracetam (and even name brand Keppra) has been proven to lessen side effects.  Thankfully I did have some and I have begun taking it.  We’ll see if it helps lessen the side effects of the Levetiracetam.  I’m hoping it does because I’m so drained, tired and out of it and I don’t like it one bit.

So word of warning:  Always double check whether you should be taking the name brand medication, or if the doctor says generic is ok, do your research before saying yes to generic!

Keep smiling!
Cat

Medical ID’s

 

When I picked up my prescription I began reading the paper of information that accompanied it.  It said patients are “strongly urged” to wear some sort of medical ID while taking this medication.  Then next day while shopping I got a general “check my wallet card” medical ID bracelet. 

For many years I’ve known I should be wearing some sort of ID.  I used to have a necklace and a bracelet due to the fact I was allergic to penicillin.  Since then I’ve become allergic to several other medications, so I already knew I should have been wearing some sort of medical ID.  Ironically I became allergic to the nickel in the stainless steel necklace and bracelet I used to wear years ago.

The new bracelet is the same and also was way too big.  I bought a small leather bracelet then promptly took apart the medical bracelet when I got home.  I put the ID with the medical insignia on the leather bracelet.  This way I have something that fits my wrist and won’t cause hives!  However, it’s not that ideal.  It works for now, but I need to get something better.

There’s where my dilemma begins.  I’ve googled medical id’s for days and my head is spinning from it all.  Which kind should I get?  A necklace?  A bracelet?  I know I’d like to get a USB pin drive type.  I’m thinking maybe a keychain type.  That way I can put it on a chain if I want or I can simply clip it on me (or my keychain).  However I want something I can wear in the shower.  I’ve looked and looked at necklaces and can’t figure out what to get.  It’s making my brain hurt!

I did get a paper with the bracelet that folds into wallet size for my purse.  I filled it out and put it in my wallet that day.  The only problem would be what if I don’t have my purse nearby?  That’s the reason I want to get the USB that I could clip to a belt loop or wear on a necklace.  Oh well, I guess I’ll just keep looking and eventually I’ll find what I want/need.  I’m just surprised that there are so many more options out there than there were years ago.

Cat

Lesson Learned! Take your meds on time!

Today I learned a lesson in taking my medication.

This morning was an early morning.  I was singing with the worship team at church, so we had to up and out the door early.  Since beginning my medication a little over a week ago I’ve been taking it at 9am and 9pm.  Today we had to leave the house before 8am.  I decided I was going to wait until the last minute before leaving to take my meds.  It wasn’t until we were at church and had begun practice I realized I’d forgotten to take my levetiracetam (generic keppra). 

At first I thought well, I’ll only be a few hours late, how bad can that be?  Little did I know I was going to find out long before church was over!

My husband David and I sang a duet during the offering.  We’ve been wanting to do one for a long time and finally had the opportunity.  I was very excited about it as it reminded me a little of when we’d sing together at karaoke while dating.  However, just prior to the duet I began to get a wicked headache.  By the time church was over and we were heading home it felt like my head was going to explode!  I have to admit it wasn’t as bad as the migraines I’ve been getting for the last four years, but it was darn close.

As soon as I got home I took my medication.  It took a good 3 hours before my headache eased up, but I am happy to say that it finally did and I was much better.  I did notice that I became very dizzy and wobbly about 30 minutes after taking my meds.  It was almost like the first couple days I took it.

So I learned a valuable lesson today.  Always, always, ALWAYS, take my meds on time!

Keep smiling!
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