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

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

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