Tag Archives: epileptic seizures

Epilepsy Every Day

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I’m one of the lucky ones.  I don’t have seizures every day or every week even.  It’s the side-effects of the medication that affect me everyday.  The meds are always there dragging me down.  When I mention them to my doctor, he nods and agrees they are indeed the side-effects of the medications.  I take them to essentially numb my brain to prevent seizures.  Double vision, dizziness, and poor balance, are all par for the course. Mood swings and depression are also probable side-effects from one or more of the medicines I must take, twice a day.

I struggle with these pharmaceuticals all the time.  None of the dozens of meds I’ve tried has given me seizure control.  Doctors generally agree that the less seizures you have the better. I’m given to believe that idea as well.  But every day I feel tired and disconnected. If I didn’t feel confused, I wouldn’t feel anything at all.  Memory problems are a common side effect too.  This is the one that worries me that most.  Who knows what I have forgotten and what I will continue to forget?  Will I someday forget the faces of my children?  It might as well be written on the side of the bottle.  Oh right, it is.  I nod along to stories I don’t remember.

It is the fear that cripples me.  The fear of a seizure, the fear of injury or accidental death.  I fear I will have a seizure or lose my balance and fall down the stairs.  It’s a rational fear.  I wonder what it’s like to not be afraid.  I wonder what it’s like to remember everything, all the time.  Once I forgot my middle name.  It’s a bad place to be. In the hospital, confused and frightened and maybe not in control of all your limbs and then someone asks you your name.  Every day I fear that happening again.  I don’t want to wake up in the hospital.  Odds are I will.

I try to minimize my risk, but even standing still is a risk for a person with epilepsy.  At any damned second at all, I might fall over and who knows when I will remember what is going on.  I don’t remember things every day.  One second here, gone the next.

My family will ask me, “What did you just say?”  And I will have no answer.  Who knows what I said?  It’s gone now.  I want to live in my life, not live in fear of it.  I want control, but that’s just an illusion.  My brain is in control and it is an evil beast.

Even when the seizures aren’t stealing my consciousness, they steal my confidence.  I don’t want to have a seizure by myself in public.  It’s just part of the seizure life: the fear, the confusion, the depression, the loss of control.  These things stalk me.  What choice do I have?  I have to try and keep the monsters at bay.  Every day without a seizure is a good day. And some days with seizures can still be good days too.  It’s all perspective.  There are little seizures and they are always better than the big, bad seizures.  The side-effects are better than falling down dead.  We live in lucky times, when epileptics aren’t forced to have brutal brain surgery against their will and get locked away in institutions.  Nobody thinks I am possessed.

Epilepsy is a roller coaster, a circus ride gone wrong with a quarter stuck in the gears, grinding away, out of control.  Every day is a struggle, a fight, a blessing.  I have a life after all.  Even if it is inconvenient.  I have to work around the fear and the shame and the loss of memory and the certainty of more seizures to come.  

I don’t hope for a cure.  I hope I can keep it together just for today.  I hope that every day.

NEXT UP: Be sure to check out the next post tomorrow by Jewel Gibson at livingwellwithepilepsy.com for more on Epilepsy Awareness. For the fullschedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET

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High Hopes, Low Supply

seedlingMy brief window of a seizure-free streak has broken.  It’s okay, I can still see through the window.  The seizure was mild, I only lost a few seconds.  I didn’t convulse or drool or do any of the other various embarrassing things a person might be prone to do during a seizure.  I was brushing my daughters hair when I felt a rising, vaguely familiar, sense of I’ve done this before.  l tingled.  Of course, I had done it before, I’ve combed my daughter’s hair thousands of times. I ignored it. Then the next thing I knew, my daughter was looking at me.  She told me I just had a seizure. I was surprised, like I always am.

“How do you know?” I asked.

“You stopped combing my hair and just stared at me.”  She responded. She’s an old hand at seizures by now. She has witnessed dozens, probably hundreds of seizures.  She recognized the signs. I lost the time, my brain was completely wiped. I never finished brushing her hair.

I asked her, “What happened?”

“Not much,” she said.  “You just looked at me with a weird face and didn’t respond.  You smacked your lips.”

I had to believe her.  That sounded like a seizure.  The problem with seizures is, you don’t remember.  That’s part of so many seizures, the loss of consciousness.  You don’t know what you don’t know. Time is fluid and I have to believe what other people tell me.

“It wasn’t severe,” she continued.  She was 13 and very calm.

“How long did I lose?” I demanded.

“I don’t know, twenty seconds, a few minutes.”  She was bored of talking about it already. It is just part of our life.  And it was not nearly as bad as last time.

January was a “bad month.”  I had a few clusters of seizures, culminating in three or four tonic-clonic seizures.  I can’t remember how many. Those ones hurt. They are the “bad ones.” This seizure wasn’t like that.

Simple and Complex Partial (also called Focal) seizures aren’t nearly as destructive.  They are the “good ones.” There is a broad spectrum of seizures I experience. The small ones can precede big ones, but sometimes I am lucky.  I will only lose a few seconds here or there. I can go on with my day, more or less. I’m not wrecked like I am after a Tonic Clonic (also called Grand Mal).  

I went almost two months without a seizure.  Which is as good of a stretch as any.  I often have multiple seizures monthly.  They cluster and I am wiped out for days or weeks after.  I can’t stay awake and sleep for 12 hours straight.  Weeks of postictal recovery stretch out.  I sleep and am unable to do simple things. I don’t leave my house.

A short complex partial seizure is like a walk in the park in comparison.  I felt fine-ish afterwards. I still felt like a person, not just a disconnected, neurological mess of burnt out circuits.

With every seizure there is infinite risk and fear.  I had been so hopeful.  Since January was such a wreck, I started a new treatment plan.  I added Keppra, an anti-seizure med, and medical marijuana.  I was hopeful that I could find that magic combination of meds that would keep me seizure-free.  I once went 7 years without a tonic clonic seizure. Those were the sweet days…  I dream of getting there again someday.   I had two months seizure-free and I didn’t have a seizure cluster.  That’s better than nothing. It’s a lot better.

I fell in love with my new Harlequin vape oil.  It is 1:1, equal parts THC:CBD.  I felt great. I had been looking for quality medical marijuana to treat my seizures for 21 years.  I have been a vocal advocate since I was diagnosed.  The culmination of Pennsylvania’s MMJ program was a literal dream come true.  I was driven 2 hours away to get my legal medicine as soon as my card was valid.  I don’t drive, seizures prevent me.  It was a big deal to get the ride.

I was ecstatic to get my new vape pen.  I bought a few different things to try, since I hadn’t tried vaping before.  Harlequin was just what I had been dreaming of.  I floated on a happy cloud and didn’t have any seizures.

Then I ran out…  And so did the dispensary…  I had two different rides set up, people willing to take the trek in the snow to get more medicine.  But the Harlequin was sold out. (It still is.) The next closest dispensary in Pittsburgh was also sold out.  It is a popular product. Thousands of people have been waiting for access to CBD oils. There is so much hope from the neurological community.  We all want CBD. I’ve contacted the dispensary dozens of times. They have been friendly and as helpful as a sold-out store can be. They keep me updated, but there isn’t the supply to fill the demand.  

There’s a small catch to our MMJ program.  Everything must be grown and processed in Pennsylvania.  That takes time. All the products available all over the country are unavailable to us.  We are forced to wait. A watched pot never boils or grows fast enough. It was great that they opened the first dispensaries, but only one company was shipping their precious products.  They have been highly popular. There are shortages all over the state. I can’t get to Philly even if they had some. An 8+ hour drive is out. It’s just not feasible for me. I have to wait until the supply is back and more grower/processors get online.  There is a dispensary that is slated open in my hometown, but the opening date is not exactly set. First it was “Late March.” Then it was “April 13th, subject to change.” It’s still nearly a month away, if all things go as they expect.  I’ve already contacted them to let them know I want to be first in line when they open.  I’m not fooling around anymore.  My mother-in-law has her card and Parkinson’s.  She is anxious to get the also-sold-out CBD capsules.  We have high hopes.

But I ran out of my medicine.  I had a seizure.  I was heartbroken.  It was a small seizure, and it was only one.  One seizure is always too many.  But you take what you get.  I felt frustrated.  I wished desperately that I could drive across town, or the state, to get some more vape oil.  The law says I can.  I had the ride.  It didn’t matter.  I considered going to Michigan or Canada.  They have MMJ and are actually much closer than Philly, yet still too far away.

I don’t blame the dispensary or the grower/processor or the state or anyone else.  We have the beginning, we have hope… But we are still having seizures and still waiting on our medicine.

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Temporal Lobe Anomaly

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This post is part of the Epilepsy Blog Relay™ which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

I told my husband, Adam, that I was going to write about epilepsy and everyday life.  He laughed and asked me, “Do you know what everyday life is?” I laughed back.  It might seem harsh, but it’s true.  I guess I don’t really know what everyday life is.  Everyday is different.  There are days of consciousness, days of unconsciousness, and days of semi-consciousness.  There are good days, bad days, seizure days, recovery days, manic days, depressive days, even some regular, old, I-feel-like-a-normal-person days.  Everyday is a surprise when you live with seizures.  Some days you stay conscious all day long.  Some days not so much.

It’s shocking what ten short seconds can do to you.  I blipped in and out of consciousness and found myself on the floor.  I was not bleeding because my husband helped me lay down instead of falling face-first like seizures are prone to do.  (Get it?!!  Prone!)  Now I’m tired and weepy.  I thought things were going so well.

I went four whole months of consciousness and normal sleep patterns.  Now I am back to square one.  Square negative one.  My brain had an electrical storm and now I will be soft and squishy for days.  Sleep will descend like a meteor.  My windows are shattered from the impact.

I don’t want to admit how quickly doing so much better can go to smashed face into the corner of the sink and bleeding broken on the floor.  Fours month wasn’t forever, but I was starting to think it was.  Maybe I could go six months without seizure.  I would make a sign and take a selfie like all my Epi Friends online.  Ten seconds later and all that shit has been destroyed.  At least my husband was in the bathroom with me.  This time I woke up on the floor confused and tired, but unharmed.  There is always that at least.  My tongue doesn’t even hurt.  I didn’t wake up in the hospital naked.

Bathrooms are extra deadly for epileptics.  All that porcelain and water.  I read about people who have died in the bathtub all the time.  All the time.  I didn’t fall out of the shower, I just stepped out of the shower and started to fall to the ground.  That’s what my husband tells me.  I needed him to tell me.  I don’t know what happened.  I came to full consciousness in bed, with him telling me he was staying home from work.  Because I had a seizure.  That’s always news to me.  You don’t know what you don’t know.

This was what I would term “a small seizure”  I was only unconscious for a short time, not hours.  I feel unable to do anything, to attend to anything.  I hope I will remember to brush my teeth.  My children will not be fed by my hand today.  My husband has to do it all.  I’m just trying not to fall over.  I wore my shirt inside out.  I discovered it hours into the afternoon.  Just another day of everyday life with epilepsy.

The floor always wins. Today it was a soft landing at least.

NEXT UP: Be sure to check out the next post tomorrow by Abby Gustus Alford at livingwellwithepilepsy.com for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat  June 30, 2017 at 7pm EST.

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Brain Matters

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This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

My brain has too many tabs open, until the entire machine crashes.  It can happen at anytime, for no reason at all.  The seizures are the most visible part.  It’s easy to see when I fall down and shake.  It’s the most dramatic.  The mood swings and lost time and forgotten memories can’t be seen.  The confusion has no name.  You can’t see the noise in my head or the way light and sound can be a weapon.  Feelings can be seizures.  My mind is an ocean of words and thoughts and dreams and fears and logic and fantasy.  Are they memories or memories of dreams?

It’s all because of my temporal lobe.  It sits behind my ear buzzing way.  Picking which memories get to stay and which to throw away.  The temporal lobe controls all the fun stuff: talking and thinking and writing and feelings and making memories…  

Sometimes I can do all of those things.  Sometimes I can do none of them.  My left temporal lobe gives me the entire world and takes it way too. I hate to lose the ability to talk. I try to scream, but I can’t move a muscle.  Sometimes I don’t know what is going on or where I am.  I can’t remember my middle name.  I lose track of time and I get angry at sounds.  Words stop making sense.  Letters swims away.  The blackout is easier.  I’m here, then it’s later.  Things have happened, time has passed, I don’t have any memory of what might have been.

When I am stuck in semi-consciousness, it’s hell on earth.  Light and sound are ice picks in my brain.  I can’t control my body or respond to appropriate stimuli.  I feel like I am floating outside of my body, looking down on the scene below.  My muscles clench and release on their own accord.  They move under their own marching orders.  The veil between real and imagined become hazy.  Time is irrelevant.  And then there’s the vomiting…

When I was first diagnosed with Idiopathic Temporal Lobe Epilepsy in 1997, I only knew one other person who had seizures.  I had never seen her seize or talked about her seizures.  Over the past 20 years, I’ve met many other people suffering from seizures.  They all feel like my best friend.  Finally!  At last!  Someone who understands!

That’s why epilepsy awareness matters to me.  I don’t want other people to feel as alone and scared as I did when I woke up in the hospital, unaware of what had happened.

The International League Against Epilepsy (ILAE) released a new categorization of seizures.  All the names I used to know have changed.  These terms are more for experts than beginners.  The new terms make sense to me because I’ve been trying to describe my seizures for years.  The more words we can throw at it the better.  What I knew as a Simple Partial Seizure is now a Focal, Aware, Non-Motor, Sensory Seizure.  It’s a mouthful.  But it more accurately describes what happens once you understand the categories.  

I need to educate myself on the changes.  I need to understand them so I can explain them to everyone else.  It’s so complex it gives me a headache.  I’m relieved I didn’t have to learn it when I was first diagnosed.   That was a dark time in my life.  When I think about it now, I feel sad for the girl I was.  I wish I had more people to talk to.  I’m here to talk to you now.

NEXT UP: Be sure to check out the next post tomorrow by Lundbeck at livingwellwithepilepsy.com for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat March 31, 2017 at 7pm EST.

http://www.epilepsy.com/article/2016/12/2017-revised-classification-seizures

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Blood Moon Super Moon

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I’ve had epilepsy for my entire life.  Although, I didn’t know until I was in college.  It was quite the surprise to say the least.  I’ve known for nearly 20 years now.  Every seizure still takes me by surprise.   I can’t predict when I will have a seizure.  But right now would be a good guess.  I’ve been keeping track of my seizures for at least six or seven years.  The pattern is undeniable.  I don’t know why.  I just know that the full moon is a particularly seizure-y time of the month.

Now it’s the Supermoon and an eclipse to boot.  I am terrified of what might happen when the moon goes dark and turns red.  I am not like normal people.  I am a werewolf.  I howl at the moon.  Uncontrollably.  I don’t know now what it sounds like, you would have to ask my family.  I’m an unconscious werewolf.  My son did say that it sounded like I was barking once.

I wish I understood what it was about the full and waning moon that triggers electrical brainstorms.  My brain ebbs and flows with the tides.  I am eternally tied to the phases of the moon.  The moon is full and my brain buzzes with too much electricity.  I am concerned with flashing lights and upsetting music.  My brain needs to be insulated from my other triggers.  Get lots of sleep, stay close to bed.  Don’t get dehydrated.  Don’t go to Wine Fest Weekend.  Don’t get upset.

My worst seizure cluster occurred the night a friend of mine died.  I was too upset, my brain couldn’t take it.  It shorted out.  It was only a few days before the Full Moon.  Perigee is a scary thing.  When the moon is so close, it is so beautiful, so deadly.

Doctors and nurses, paramedics and police officers will tell you.  The Full Moon makes people do weird things.  We are 70% water, we are ruled by the gravitational forces of nature.  The moon will turn red.  My family is just hoping I make it through to the other side.  I hope it’s not a bad one this month.  I don’t want to bleed with the blood moon.  I already bit my cheek.  My mouth often takes the brunt of my seizures.  My teeth clasp and whenever I taste blood I suspect I’ve had a seizure.  They can happen so fast, faster than anyone can know.  Blood is bad sign.

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Seizure Drunk

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Whenever I end up in the hospital they ask me if I am on drugs.

The only drugs I am on are legally prescribed, anticonvulsant, pharmaceutical drugs.  The doctors ask me repeatedly if I have taken any hard street drugs.  They never believe me when I say no.  I am honest about my eating and caffeine and drinking habits.  I tell the truth about smoking.  I do not take drugs.  They never believe me.  Seizures look like drugged out states.  People in pain look like junkies.  I apparently look like both.  My liver has been infected, so clearly I was an IV drug user.  I am honest to a fucking fault.  Ask anyone.  I’m not known for keeping secrets.  I’m not on drugs.  I have never stuck a needle in my body, I’m not on drugs.  I’ll tell the doctors the truth.  They don’t believe me because seizure victims look like drugged people.  They don’t like drugged people.  They certainly didn’t treat me well when they thought I was on drugs.  I don’t know why seizures make me vomit.  But they do.  I’m not drunk or on drugs.

When they knew I was having a gallbladder attack, I was treated kindly.  They at least saw me expediently.  Of course, due to my liver, they asked me time and time again, have you ever taken IV drugs?  I tried to explain how difficult my veins are to find.  I would never be able to be an IV user!  My daughter’s cesarean birth was delayed because five or six different nurses couldn’t get the IV in, on several different spots, on both arms.  I’m not a drug user.  I’m an epileptic.  It’s a real bitch.  On so many levels.  My liver was most likely infected because of my seizure meds, or my rotten gallbladder, which has since been removed.

The last time I was in the ER they sent me home with paperwork that said I had an “Altered Mental State-Resolved”.  It took me a few days, because my brain was too foggy and mushy to care, but I eventually realized that it that said nothing about seizures.  I asked my husband what it meant.  He shrugged.  “Does that mean drugs??”  He nodded.  “I was having seizures all day!  I have epilepsy!”

“They can only judge what they see. The ER Doctor didn’t see you have a seizure.”

She only saw my confused, postictal, fugue state, that lasted an entire day, accompanied by vomiting and dehydration.  I get it.  I get it.  Seizures are scary and confusing.  Sometimes I wake up to people looking at me like what the fuck did you just do?

As it was happening, I was screaming, trapped in my head.  I’m an agreeable enough person.  If you tell me to come down stairs, I’ll come downstairs.  When I had my gallbladder attack, I met the paramedics at the door, ready to go with my purse and wallet and coat on.  The altered mental state time, I was stuck in a seizure unlike any other and I couldn’t control my body.  Even if I thought I was talking, I wasn’t.

The brain is a cruel mistress.  I would be lying if I said I didn’t enjoy my brain.  I amuse myself with puns and allegory.  I am proud of my writing.  That is all my brain’s doing.  But my brain also hijacks my body.  Just like a terror attack, everything is okay.  Until it’s not.  The Brain Bomb goes off and I drop to the ground.

My brain makes me cranky and sensitive to sound and light.  I can’t drive because I can’t trust my brain to keep me conscious.  It’s a real pain in my ass.  My family can tell when I’ve had a seizure.  They have to tell me.  I change somehow.  I can’t tell you how because I don’t remember.  My voice changes, my eyes look around with childlike wonder/terror.  I can’t think of the words I want to say.  In the days after my handwriting changes.  If I can even write at all.  I am not in control of my body.  I vomit and spill water all over myself.  Did I mention it’s a real pain in my ass?  Once I spilled water on myself.  I was unable to drink it.  I hoped that perhaps osmosis would be enough, so I laid in the water for hours and hours.  I hoped we had some left over gills from our common fish ancestors.

My head is half-pounding today, the pain lingering behind my eyes and centered in my forehead.  It feels like my brain is mushy somewhere inside there, like my spinal fluid levels are off.  Headaches are usually a sign of a seizure.  It’s classic postictal (post-seizure) state.  It’s a ice pick through my brain.  Just like that man who had the train spike through his skull and lived.  That’s how I feel.  I look like a drunk, drugged out person.  Apparently, I look like someone who is unworthy of sympathy.

Maybe that is why so many people are dying from heroin.  They are afraid to seek treatment.  I am afraid to seek treatment.  I’m not even on drugs.  I don’t want to be treated like I am.

A seizure is so much worse.  I can never get clean.  There’s no rehab for me. I can just hope that the next time the hospital will believe me.  I didn’t take any drugs.  I’m having a seizure.  It’s not my fault.  I’m not drunk!  I’m trying to answer your questions.

The first time I ended up in the ER, in 1997, they asked me what drugs I took.  The most recent time, in March, they asked me what drugs I took.  The answer is always the same, “What the hell are you talking about?  I was just at home, minding my own business, not taking drugs.  What the hell happened??”  Seizures are like that.  When you blackout, you are black out.

I wish people understood.  I wish the paramedics and ER doctors understood at least.  I’m going to keep talking about it until they do.  What else can I do?  I am at the whim of others when I have a seizure.  It terrifies me.

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It’s Good To Be Kind

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I am a Superhero!  I have the power to save lives!!  I have knowledge and knowledge is power.  All I have to do is share my knowledge.  What happens with that knowledge can’t always be known.  Today I know.  I helped save a life.  My knowledge, my advocacy, affected a human being’s life.  I saved a life.

I was told that my “tip” about medical marijuana helped someone get through cancer.  I started to cry.  I might be the only person who ever said, “I’m so glad to hear you are using.”  It sounded so wrong, but it felt so right.  I was so happy to hear it.  I helped him beat cancer.  What more is there to life?  Something I said changed his life forever.  I am so proud. I get scared being an advocate. People with big mouths and contrary ideas get murdered in other countries.  Sometimes they get arrested in this one.  But then something like this happens and I know I’m doing the right thing.  If you don’t know, you can’t get help.  Cannabis is medicine.

When I heard that my friend had cancer, I sent him an email.  I said, “Hey, I have no idea what you think about pot, but check it out.  There is so much information out there and cannabis is being used to treat and cure cancer.  Check it out.” It worked. He told me, “I don’t want to say it got me through, but it got me through.  It got really bad during chemo…”  I started to cry, so I gave him a hug. I feel like a fucking Super Hero.  Just call me Marijuana Girl.  I’m the THC Crusader!

I used to say that if I helped one person by sharing my story, I achieved my goal.  I know that to be true now.  One person matters.  I matter.  My advocacy matters. He thanked me for writing my blog and fighting for medical marijuana.  “I’m glad to know there are people out there fighting for this.” I feel the same way.  I’m encouraged by my advocate friends.  People that I have never even met in person.  We are all working together for the same goal.  A complete end of prohibition of marijuana.  Free the Weed!!

I can’t be silent.  I’m tired of waiting.  I want the same medicine that other epileptics have access to.  There are all sorts of cannabis treatments available to epileptics in other states.  But not in the Commonwealth.  Not for me. I read about CBD/THC patches that are available in dozens of states.  Creams and oils and I wouldn’t need to smoke anything if that’s what you are worried about.  I can’t afford to drive to Colorado.  If I could, I’d be a happy, healthy, hopefully seizure-free girl.

That’s all I want from this life.

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