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

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

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