Tag Archives: epileptic seizures

Temporal Lobe Anomaly

unknown-1769656_1280

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.

Leave a comment

Filed under Essays, Living w/ Epilepsy, Non-fiction

Brain Matters

Physiology_for_Young_People_-_1884_-_Surface_of_the_cerebrum

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

Leave a comment

Filed under Living w/ Epilepsy, Non-fiction

Blood Moon Super Moon

Eclipse_lunar_(Blood_moon)_del_8_de_octubre_de_2014_10

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.

Leave a comment

Filed under Essays, Living w/ Epilepsy, Non-fiction

Seizure Drunk

starrynightfusedglass

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.

Leave a comment

Filed under Essays, Living w/ Epilepsy, Non-fiction

It’s Good To Be Kind

30_marijuana_dispensaries_la1

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.

Leave a comment

Filed under Essays, Living w/ Epilepsy, News, Non-fiction

Representative Baker is a Big, Fat, Faker

Pennsylvania

It seems that marijuana is in the news everyday.  More states are fully legalizing it, Colorado, Washington, Oregon, Alaska, District of Columbia… Ohio could be next?!  There is a movement for a referendum on the ballot in November.  Vermont has a bill, SB 95, in their state Senate.  Everyone is waiting for California to legalize it already. Entire countries are allowing home cultivation (Hi Germany!).  Ecuador is considering decriminalizing all drugs. The US Senate Appropriations Committee just voted 18-12 to pass a bi-partisan amendment to allow the Veterans Administration (VA) doctors the right to discuss medical marijuana with their patients in the 23 states where it is legal.

The Pennsylvania General Assembly is teasing me again.  The PA Senate passed a medical marijuana bill!  For the second time.  A medical marijuana bill passed in the Senate last year.  The House let it die.  The House would let me die too. The Pennsylvania House of Representatives will probably sit idly by and name bridges for dead veterans.  I am all for naming bridges for veterans, but maybe the townships and county governments could do that.  The House of Representatives does not need to do that. They should be talking about the veterans who committed suicide after traumatic brain injuries and post traumatic stress disorder.  Veterans who could have been treated with marijuana.  No, those veterans don’t get coverage on House Floor.  When they do get is short and fleeting.  The House is stringently opposed to medical marijuana.  Senate Bill 3 is not on the docket.  Its sister bill, House Bill 193, is stuck in committee.  The Commonwealth wants to wait for the Federal Government to act first.

There are scientific medical studies being published almost daily that show the numerous medical benefits.  At least three of my neurologists and my primary care physician agree that marijuana is a hopeful “new” treatment for my epilepsy.  Brain Doctors agree!  The Epilepsy Foundation agrees!  Some of my epilepsy friends successfully use cannabis to prevent seizures.  My Facebook friend Ricardo gives his daughter “Tuffy” cannabis oil that he has to make himself.  It has saved her life.  I love Ricky’s posts and pictures of Tuffy.  She was previously living a nearly vegetative state.  She had  hundreds of seizures a day and needed a helmet.  Ricky fought New Jersey to legalize medical marijuana and get Tuffy medicine.  She is a growing little girl again.  Cannabis has given Tuffy her life back.  The pictures are amazing.  Her new-found freedom from seizures is a blessing.  It gives me hope.  Cannabis IS medicine.

I don’t have much hope that the House will help me.  I have been on this roller-coaster for too long.  Even if the House did discuss SB 3 on the Floor, it probably doesn’t have enough Republican Majority votes. It’s not going to get me any relief anytime soon.  I can go to my neurologist and we can talk about how we live in the wrong state.  She would prescribe me medical marijuana if we were a different state.  I have been going to this doctor for over ten years.  She is deeply familiar with my condition. She recognizes the benefits of marijuana.  But the Pennsylvania House of Representatives, with their lack of medical expertise, says no.  I wasn’t even happy when SB 3 passed 40 to 7.  It passed last year as SB 1182 with 43 votes.

Senator Pat Vance got up before the vote and basically lied.  She said the National Epilepsy Association opposed medical marijuana.  I don’t know who the National Epilepsy Association is.  It was certainly not The Epilepsy Foundation, who is the actual voice for epilepsy in the USA.  The Epilepsy Foundation is in full support of medical marijuana.  FULL SUPPORT.  Whoever Senator Vance spoke to is not representative of the real epilepsy community.  I almost had a seizure I was so pissed off at her misrepresentation.

The head of the House Health Committee, Representative Matthew E. Baker promises not to do anything.  One person is mucking up the works.  He represents a small percentage of Pennsylvania citizens.  His district is distinctly mountainous and rural.  There aren’t many people living in Tioga, Pennsylvania, the largest “city” Mr. Baker’s District  68.  As of the 2010 census there were only 41,981 people in Tioga.  The total population of District 68 was 60,512.  There are 12.79 million residents in the Commonwealth.  I did the math, that’s less that 0.004% of the population.  I would wager a guess that there are more white-tail deer in District 68 than people.  Even the deer would support medical marijuana.  They love to eat it.

According to a recent Quinnipiac University poll, nearly 90% of Pennsylvanians support medical marijuana.  Matt Baker is keeping medical marijuana languishing in the House Health Committee.  One person is preventing a vote on the House Floor.  One person is preventing democracy.

I just want medicine.  Colorado and Washington are rolling in tax money from legal marijuana.  LEGAL.  In Pennsylvania I can’t get a prescription from my brain specialist.  The House of Representatives would rather have me and millions of Pennsylvanians suffer.

It doesn’t matter that my Representative Pat Harkins said he would vote yes.  He is in the cock-blocked minority.  It doesn’t matter that Governor Wolf is holding round table discussions with the Attorney General and advocates and doctors who agree.  Governor Tom Wolf says yes, yes, yes.  Baker says no.  He receives money from pharmaceutical companies.  Pharmaceutical companies that have an interest in preventing medical marijuana.  Does anybody else find it concerning that the Chair of the Health Committee gets money from drug companies?  It seems like a conflict of interest to me.

I’m guess I have to take my advocacy to the President.  He’s the last hope of the empire.  He could write an Executive Order legalizing medical marijuana.  He could reschedule marijuana, he could legalize marijuana.  He could do any of the three.  He’s on Twitter now.  I’ve already Tweeted to him about this.  I am very persistent.  Tweet.  Tweet.

Mr. President, Please Free the Weed.  You know you want to.  I know you can do it.  Congress might try to stop you, but they can’t.  They don’t get anything done.  Please.  Please.  Pretty-please with a cherry on top.  I just want to have less seizures.  I wish I could schedule a seizure for you so you could understand my life.  I read your memoir.  I know you are a compassionate man.  

Do what is right.  Matt Baker won’t.

Last night I was snuggling in bed with my kids before bedtime.  Out of the blue, my 11-year-old daughter said it was “pretty impressive that Mom was still alive since she could have died so many times, because she has so many seizures all the time.”  Kids say the darnedest things…

1 Comment

Filed under Current News, Living w/ Epilepsy, News

No Common Sense For The Commonwealth

Cannabis_plant_from_'De_historia...'_Wellcome_L0051246

I have long been a silent supporter for medical marijuana.  But I was afraid to really speak out.  I was a Nancy Reagan’s “Just Say No” kid.  Would the moms shun me at the school if they knew?  It was safer to stay silent.  So what happened?  Charlotte Figi happened.  When Charlotte’s Web hit the news I cried.  I was so happy to see this beautiful little girl reclaiming a life that she almost lost due to seizures.  I was so happy for her and her family.  And then I cried for my children… They have to live with a mommy who sometimes screams and falls down.  That is the worst effect of my epilepsy: my kids have to see me have a seizure.  If you’ve seen a seizure you know, it’s pretty much the worst thing in the world.  If you haven’t, lucky you.  I hope you never do.  Unless you work in Harrisburg or DC: I would love to have a seizure in front of you.  You will be rightfully frightened.  Seizures change everything.

Parents in Colorado and New Jersey and Pennsylvania are fighting to get their children marijuana.  How could I stay silent?  It IS a matter of life and death.  Seizures kill.  Epilepsy is a terrible disease that holds us in a cold grasp until we die. People die from seizures and seizure related injuries everyday.  Over 50,000 Americans lose their life every year.  For me it’s all about seizures, everything in my life is about seizures.

Medical marijuana can SAVE lives.  The Epilepsy Foundation supports medical marijuana.  The nation’s largest epilepsy organization is advocating for marijuana.  That’s huge!  The seizure preventing effects are visible and undeniable.  ALL epileptics need access to this natural medicine that is recommend by Surgeon General nominee Sanjay Gupta and my personal doctors.  I’d like it if Pennsylvania would allow me that courtesy.  23 other states would.  I’m tired of my government treating me like a criminal.  I’m not a bad person.  I just want to have less seizures.  I want to stay conscious at ALL times.

The Pennsylvania Government denies that there is any valid information in the hundreds of studies not done in Pennsylvania.  All the scientific literature does not matter to them.  They insist that they would have to re-do the studies here.  But they won’t do the studies.  Science doesn’t matter to them.  The fact that the federal government has a patent on cannabis (Patent #6630507) means nothing to my so called Representatives.

I read the studies.  The information is there for the taking.  The internet grants us immediate access to governmental documents and scientific journals.  I am convinced.   Marijuana has been known for CENTURIES as a treatment for epilepsy.  Why should I suffer for being born in the wrong century and state?  I just want to be able to grow a plant and stay conscious.  Marijuana can help.  There is anecdotal evidence.  There is scientific evidence.  I’ve had too many seizures to just sit by and wait for Pennsylvania to grow up.  For years I suffered in silence.  I felt so alone in my unstable state of consciousness.  I thought that nobody understood me until I met other people living with epilepsy.  I need to educate the world about my deadly, deadly disease.

I was diagnosed with Temporal Lobe Epilepsy was in 1997.  I was 20.  I went to bed with a headache and woke up in the hospital, talking to my mother on the phone.  She asked me where I was.  I didn’t know.  I had no idea why I was on a phone.  The last I knew I was sleeping.  I could not believe that I had a seizure and was in the hospital brought by ambulance.  It was the first time, but not the last.

They kept asking me what kind of drugs I was on.  That made no sense.  I don’t take drugs. I had taken a biology exam and came home to sleep.  They tested me.  No drugs.  I was confused and angry.  I had another seizure coming out of the bathroom holding the warm container of my own urine.  I don’t remember much else.  Days later I saw a Doctor.  I can’t remember his name, he was just the first of dozens.  He told me I had Idiopathic Temporal Lobe Epilepsy.  It was a diagnosis that I could barely understand despite my years of college anatomy and physiology.  He also said Seizure Disorder but I liked that term even less.

I understood I had a seizure or I was trying to understand that. But I didn’t really believe it.  And I certainly didn’t believe that just because I had one seizure meant that I was going to have another.  I was wrong.  Poor Past Katie, she was so wrong.  That wasn’t my first seizure.  It was just the first time somebody saw me have a seizure.  Over time, as I learned more about my seizures, I realized I had hundreds of un-diagnosed seizures.  I have had seizures my whole life.  I will have them for the rest of my life.  Hopefully they won’t kill me.  I think that every day.

My diagnosis  has not changed over the years.  It’s still Idiopathic (Unknown cause) Temporal Lobe (part of the brain on the side, controls memory and emotions and so much more) Epilepsy (lots and lots of uncontrolled burst of electricity in my brain.)  There is still no reason, no cause, no warning when a seizure might happen.  My brain has too much electricity.  Yee-Haw!  It’s a rodeo!

I’ve gone years without seizures.  Ah, the good years; the sweet seizure-free years.  The longest I went without a Grand Mal (a massive, convulsive, secondarily-generalized seizure) was seven glorious years.  Now I am happy for seven days sometimes.  It’s been 14 days today.  I am finally feeling normal again.  My body has more or less physically healed from the last seizure.  The depression has lifted.  But who knows for how long?

This year the record is 42 days seizure-free.  Then I ended up in the hospital with gallbladder disease and had a cluster of seizures in June. They played fast and loose with my seizures in the hospital.  They gave me so many different injections and bags of saline and radioactive isotopes.  I don’t know what they gave me.  I had a seizure in the bathroom.  I bit my tongue and bled all over myself.  I wandered the halls and looked for my husband whom I had sent home.  I couldn’t remember doing that.  I was dazed and confused: lost in the hazy aftermath of a seizure.  At least I didn’t fall out of bed that time.  I woke up covered in blood and vomit and had no idea why.  Nobody in the hospital knew.  They don’t know how to treat me.  There is no way to treat me after a seizure.  All I can do is sleep and wait for my brain to reboot.  Seizures are exhausting, for days, for weeks at a time.  It’s not just the half hour that I lost, it’s everything that comes after.  My most recent seizure brought me a bruised rib.  But I didn’t fall down the stairs!  I fell into the banister instead.

I would try any plant that could help.  I’ve tried all sorts of minerals and supplements that I found referenced in the medical texts as a treatment for epilepsy.  Marijuana comes up again and again.  There is enough evidence for me and 85% of Pennsylvanians.  But I don’t have safe access to the strains that are curing epilepsy.  Charlotte’s web isn’t available in Pennsylvania.  The variety matters.  Think of marijuana like peppers.  You wouldn’t say that an Orange Sweet Bell Pepper was the same as a Ghost Pepper.  Jalapenos aren’t the same as Banana Peppers.  They are all different strains of the same plant.  Plants are like that.  When you are in a state with marijuana prohibition, there is no choice but one: whichever one your Dude has at that point in time, which changes all of the time.  Nobody else wants to consume marijuana that won’t even get you high. Children in Colorado are allowed to but I’m not.

The Commonwealth of Pennsylvania doesn’t trust me to live my adult life and make decisions about my body by myself with the advice of my doctor.  More than one doctor would prescribe me marijuana if they could.  I have been told more than once.  Neurologists talk about it with me at length.  We are all hopeful for “new” treatments.  But I am in the wrong state for that.

Is Pennsylvania part of the United States or not?  Nearly half the country would allow me medical marijuana.  It’s as free and clear as beer in Colorado and Washington.  But not Pennsylvania.  I am stuck here in the prohibition years.  No medicinal plants for me.  My seizures don’t matter to the legislators of Pennsylvania.

Seizures are being prevented. How can you allow us to go without treatment?  It is a cruel and unusual punishment.  

And that’s why they call us Pennsyltucky.

2 Comments

Filed under Essays, Living w/ Epilepsy, News