Zombie Meds

ImageHere’s the thing about the zombie apocalypse: I’m afraid, very afraid. I’m not afraid of zombies or anything, I’m pretty sure I could outsmart a zombie.  I’m not afraid that I couldn’t outrun them, even though I can’t.  I’m afraid of what happens when I can’t get my meds.  My first plan, come zombies or some other apocalypse, is to raid as many pharmacies as I can.  I’m not taking the pain pills or anything like that.  I’m taking all the anticonvulsants I can find.  They don’t exactly have a high black market value.  Yet.  They can’t be taken for fun.  I promise you, they are not fun to take.  So I hope that they might be looked over if I don’t get there first.  This is my apocalypse plan.  Get my meds.  I can’t get away from the zombies if I am having a seizure!

Missing even one dose of an anti-epileptic drug (AED) can cause a seizure.  Even being late with one dose can trigger a seizure!  I didn’t always take my meds.  I was in denial for a long time.  Being told that you have a lifelong disease at the age of 20 is pretty shattering.  I first received my diagnosis after waking up in the ER.  They wanted me to pee in a cup and talk to my mother on the phone, 200 miles away.  I had no idea what had just happened.  The last thing I remembered was that I had a headache and went to bed, in my bed, in my bedroom.  Then….  ER, phone in hand, very confused and angry.  I was probably groaning like a zombie.  Seizures can be eerily zombie like.

You should ask my husband about the details.  He’s the one who witnessed it then and too many times since.  I’m not aware of anything when I have a “big” seizure.   Convulsions are the “big, bad ones.”   I categorize the different types of seizures I have by severity.  There are so many complicated and confusing sounding names; simple partial-onset seizures (the small ones), complex partial-onset seizures (the medium-terrible ones), secondarily generalized tonic-clonic “grand mal” seizures (the big, bad ones), and all together it’s called idiopathic temporal lobe epilepsy.  It’s a lot is comprehend mere minutes after finding yourself in the bathroom of an ER, holding a cup of what you hope is your own urine, apparently having another seizure.  I remember saying, “I’m having that weird feeling again.”

And that’s how I became an epileptic.  Except that I always was, I just never knew before then.  There were signs of course, now that we know better.  I can even remember having seizures now.  I just didn’t know what they were then.  It was a hard transition in my 20’s coming to terms with it all.  I have always been glad that I had my childhood at least.  My childhood was happy and healthy as far as I knew.  I used to feel like a normal person, not a sick person.  I am thankful for that.

I had been having that “weird feeling” for years before I ended up in the ER for the first time.  It was a scarily common occurrence.  My eyes would slip out of focus for a second and then the world would change.  Whatever I was looking at would looking new and unfamiliar.  My own hands would look slightly different.  Things were off just a little bit.  It felt… weird.  It was an odd experience, otherworldly.  It felt disturbing and usually it made me sick to my stomach.  I tingled.

That “weird feeling” is a seizure.  I didn’t know that then and I didn’t even acknowledge it for a long time.  I referred to them as “auras,” only a warning sign that a seizure might occur.  I said it was the opposite of déjà vu, “jamais vu,” never seen.  But no, it is actually type of seizure.  There are over 30 different kinds of seizures!  I suspect I am experiences undiagnosed seizures as well.  I experience odd smells some times, things that are not there.  I zip in and out of consciousness so fast no-one can even notice.  The convulsions are the scariest and the easiest to diagnose.  This is the type of seizure you see on TV, with the screaming and the shaking.  I can’t stand to see someone fake it on TV, I have to look away.

The “auras” are just one of the “small ones.”  It’s a small one when I don’t lose consciousness.  When it’s only a terrible feeling that does not progress to screaming and drooling, when it doesn’t “secondarily generalize.” When it doesn’t encompass my entire brain, it’s just one small deadly lightning strike.  Then I need to take a nap.  A lot of my epilepsy involves taking naps.  It is an exhausting experience to have a seizure.  Afterwards I stumble around like a zombie for days, barely living in this world.

Sometimes I smack my lips and make repetitive movements.  Or so I’m told.  I have no memory of these seizures.  That’s a “medium terrible” seizure; complex partial onset seizure.  You might have heard it called an absence seizure or a “petite mal.”  I lose consciousness but I don’t have convulsions and scream and shake like a fish out of water.  I can still fall over though.  If I’m aware enough before it hits fully, I’ll try to lay down.  Stop, Drop, and Don’t Roll!  Usually I’m pretty confused and unresponsive.  This is when the drooling occurs.  Generally no screaming, but plenty of moaning.  Uuuughhhhnnnnnn!

I also have nocturnal seizures.  Those are extra hard to catch since everybody is ASLEEP!  I can only guess when I’ve had one of those if I’ve bitten my tongue badly during the night.  Headaches are clues too.  Of course, I do know if I’ve fallen out of bed.  When my husband teases me for sleeping in the middle of the bed, I ask him, “How many times have you fallen out of bed?”  I am eternally grateful that I never fell out of bed when I had an elevated loft bed.  That could have been really bad.  I wasn’t even taking my meds then either.  I had lost my health coverage when I graduated from college.  I did not have a job that offered benefits.  None of my multiple jobs offered benefits.  Even with more than one job I wasn’t paid well enough for me to afford private insurance with a “Pre-existing Condition.”  My meds were hundreds, and now are thousands, of dollars a month.  I couldn’t afford that and I didn’t want to be an epileptic anyway.

I didn’t take meds or consider myself to an epileptic for years.  Denial didn’t change anything.  Then I got pregnant and I didn’t want to have a seizure and risk my baby’s life.  So I started taking my meds and being a responsible adult.  And now that I know better, I take my meds even thought I hate to.  It’s a love and hate, life and death, relationship.  All the myriad of side effects are still better than having seizures.  So, I grin and bear it and swallow the pills twice a day.  Even when they make me feel like I’m half zombie.

I feel so tired and dizzy every day.  I bump into things and bruise easily; huge, deep bruises that are black and blue, and purple and red and yellow and green.  I don’t even know where I get many of these bruises from.  But that might be influenced by my foggy zombie memory.  I’m not what you would call…  Oh what would you call it…?  Ummm…  I can’t remember what I was saying.  Oh, forget it!  I had neurological testing once that showed my visual memory to be in the 4th percentile.  96% of people can remember what they see more than me.  Do not ask me about a movie I “saw.”  I won’t know.  I can watch my favorite shows over and over again and experience them freshly.  I’m a lighthouse in the fog with a burnt out whale-oil lamp and a cracked lens.  I can see and remember some things through the mist.  But at lot of the finer details are lost.

I have to take a nap when the chemicals peak in my system.  My eyes can’t focus and my optometrist sees no physical reason for that to happen.  My eyes are fine; my brain is awash in anti-epileptic chemicals.  Sorry, you’re not going to be able to see straight for a few hours.  My head swims and I’ve just learned to take a siesta in the middle of the day when the meds peak.  I take my second dose before bed, so I don’t have to worry about it then.  All my doctors say, “Yes.  Ah-huh.  That’s happens.”  Live with it.  So I close my eyes when I see double.  It passes.  I go on about my day for a few more hours before it’s time to take my meds again.  It is better than the hundreds or thousands of seizures that I would have.  I know that now.  It is a deep level of understanding and acceptance I didn’t know I had.  It took years to find.  I would be very upset if the zombie apocalypse took my meds away.

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24 Comments

Filed under Living w/ Epilepsy

24 responses to “Zombie Meds

  1. I can’t imagine what that would be like,I can empathize however,as my kid brother used to have epileptic fits when he was younger,thank heavens he doesn’t have them anymore…
    But you seem very brave to go through on almost a daily basis!
    Loved how you wrote it,btw.Matter of fact and whimsy together,mixed rather well! 😀
    Take care,
    xo

  2. Thank you very much!!

  3. A great article Kat, spot on!

  4. Michele

    You could be describing my life. Thank you for sharing. I’m very grateful for my VNS + meds. I experienced a lifetime of what you describe. In recent years, my seizures are well-controlled, but I never feel completely “safe” because of nocturnal seizures and a breakthrough seizure which nearly caused me to drown 15 years ago.

  5. Wow…Your story is moving.
    We need to hear more stories from more people. We all need to know what epilepsy is. 1 in 20 children have it. 1 in 100 people have it.
    But it isn’t talked about. Most times hidden. Years ago “Cancer” like that. Now, everyone knows about it. Knows someone that has had it. There are campaigns for it, walks and runs, you name it, there is a way to help cancer victims. Not many hear of “Epilepsy” campaigns or walks. The ones living with epilepsy feel alienated. Many don’t have support. Many live in hiding. Many are afraid to say they have Epilepsy.
    In this day and age, it shouldn’t be this way. We all need to raise awareness when it comes to Epilepsy. It all starts with YOU.

  6. Thanks for sharing. I have trigeminal neuralgia and for a time I was on epilepsy medication. Like you, I felt it was a lesser evil than the neuralgia, but it wasn’t pleasant. I know two people who have epilepsy and it is very debilitating, good on you for not giving up, but finding a way to have a life around it.

  7. Brittany

    I’m on 50mg of Vimpat and 600 mg of Keppra in the morning and 50 more mg of Vimpat and 600mg of Lamictal at night. I’ve had seizures since I was 14 years old and am now 22. I used to get dizzy all of the time when we were experimenting with the type of medicine we were going to use for me. I found out that I cannot use generic forms. I’m not sure what brands you are on, but the extra ingredients in the generic forms made me really sick (vertigo). Also, depending on how much you are taking at once, I learned that I had to space mine out for them to not make me dizzy. so I take my medicine every 12 hours. Although, I am on XR. Maybe you could discuss that with your doctor if it is at all possible. It might be even a little cheaper too. Not being able to be on generic sucks, but it’s better than being dizzy all the time. You can’t let this control your life, try talking to your doctor about alternatives. it took a very long time for me to figure out what I need (about 7 years) and have been seizure/dizzy free for over a year. Good luck to you. I put my email on here in case you have any questions since I went through the same thing.

  8. Christy Wyatt

    Great blog! I know that feeling..

  9. reading your story, was like reading my own. i had my first seizure as a ripe 19 year-old in college that spawned into a very confusing EMS ride and ER visit. my 20’s were also plagued with denial and rebellion. i, too, a religious about my meds and fear if they are not in close proximity. i suffer from many of the same side effects (foggy, forgetful, bruises).
    thank you for sharing your story! i would love to share mine with you and talk more about our experiences. having others around you that share your experiences can offer support and a place of safety and comfort. so, thank you 🙂

  10. Kat van Hookens

    really brilliant discription of a truely frightening condition… cyber hugs…

  11. Thank you! and You’re welcome! Sharing my story has been so empowering!

  12. Minnown

    Beautifully written on such a terrible disease. Spot on in some of your descriptions.

  13. Maggie

    Wow. This sure rings true! Thank you for making me feel “normal”!

  14. I have been stock piling my meds for ages waiting for the Zombie apocalypse, as long as you take Topiramate, or Pregabalin have a few spare that I don’t need. However the Keppra and Zonisamide are all mine.

    But on a sensible note, we are doomed and dictated to by our drugs. Like you I have my daily seizures. They are so common that they a part of my daily routine, Why take paracetamol when its not going to take the pain away, know your route in work so you don’t bump into things. So many little things that NON-Epilepitic workers in my department don’t even notice. Pointing out partial seizures so they can look out for them in future only to remind them the next day about it. If I didn’t have epilepsy I would be far more efficient than rest of the department, as I already work harder. Its a shame they don’t notice or appreciate it.

    While there may not be a Zombie Apocalypse anytime soon, I am sure the discrimination of people with epilepsy will come to an end sooner than we think.

  15. Thanks! I’m on Lamictal, so maybe you could start stockpiling that more me? 😉

  16. Wow, I found this article when I was having an exceptionally bad day…feeling sorry for myself (which I don’t normally do). I am just so tired of feeling drugged all the time and sleeping half the day a way. I went the surgery path and it didn’t work. My seizures are 100% under control I just wanted to get off these awful meds. I too am neurotic about my meds. When I pack to go somewhere I have like 5 different “sets” of meds in different places in fear of “what if that piece of luggage gets lost?” It’s hard to have something that people can’t see. Alot of times I feel like people look at me like I’m just lazy for sleeping all the time, that doesn’t even speak to my lack of mental “sharpness”. Well, I guess it beats the alternative. We are all in the same boat. Good to know I’m not alone.

  17. Just got us from my daily nap… Glad to know I’m also not the only one!!

  18. Very insightful. It took me while to figure out the side effects as many mimic the symptoms I get from MS, it was only by noting the regularity of them that my dim brain worked it out. 🙂

  19. I loved reading this. My son just turned 4 and has several different types of seizures. He is taking lamotrigine, zonisimide, and onfi. we just started the ketogenic diet this week since we haven’t gotten seizure control and he has status seizures in his sleep. Because of his age it is so hard to tell how he’s feeling and how the meds affect him. this gives me a lot of insight.

  20. Great! I’m so glad to be helpful. Good luck with the Ketogenic diet! Thanks for reading!

  21. nirile

    Tonic-Clonic? It sounds like a slang name. Or as Dave Barry would said, a great name for a rock band.

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