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