High fives for FIRST Seizure Free Monthiversary!

Make that 24 Days...

#epilepsyawareness

I Am Alive

I felt something last night. I felt normal. Really normal.

It was my twelfth seizure free day and I felt ALIVE, fully ALIVE. I have missed that feeling more than anything else, that ability to connect, to engage, to live. It came back last night - warm fuzzy feelings and compassion. Love. My brain was processing love.

In addition to my medication, I started a restricted low-carb diet on Friday, November 15th. I have not had a seizure since Sunday November 17th. I have only experienced a few visual illusions, small blue sparks - the kind that generally lead to pre-ictal fear and then simple complex, tonic and absence seizures. There is no fear. The sparks come. The sparks go. No seizures.

The first few days it felt like a coincidence. It had to be.

My life brought a great deal of stress that week and yet I had no seizures. Not one. My calendar remained blank.

By week two I was back on the treadmill. I feel compelled to exercise. I am not lying on the couch. I am not exhausted from seizures.

I ate turkey and a bit of green veggies on Thanksgiving. I did not miss the stuffing, the candied yams, the cranberry - they looked delicious but I did not miss the seizures.

On day twelve, yesterday, I felt compelled to add Yoga. My body and brain wanted to stretch and relax. I rolled out my pink Yoga mat. Calm. Balance. Breathe.

It is 6:30 AM and I feel alive, alive in a way I have not felt in a very long time. <3

Our New American Health Care System

IMPORTANT: Even though it is a PAIN to navigate the new federal healthcare system - having health insurance will change my life - it will save my life. 

I am an American woman living with uncontrolled seizures. I have Epilepsy and I am currently uninsurable. 

My life will change in January. Insurance will bring luxuries to my life including proper medical treatment, MRI and diagnostic tests and the ability to take life saving medication without fear of running out of prescriptions. It is going to be a beautiful brand new world for me. One day soon I will not live in fear of dying because I cannot access proper care; I will struggle, I will fight but I will live.

FYI: November is National Epilepsy Awareness month in the United States.

#aca #gopurple #epilepsy #ofa #obamacare

------------------

Today you get to read my email response to a question floating around at work about healthcare.gov and our new American health care system. Yes, we get to discuss things like this at my job - pretty cool place. 

In response to those angered by the healthcare.gov website:

I liked this Reddit "Explain To Me Like I am Five" counterpoint to those who feel that the new system, specifically healthcare.gov, is a failure:

http://www.reddit.com/r/explainlikeimfive/comments/1owop4/eli5_how_did_healthcaregov_cost_634000000_that/ccwhsmv

However, even with government inefficiencies and bureaucracy calculated in -  I don't personally get it. We have a $100 Million Website linked to a $643 Million System that does not work. This must be fixed!

I am uninsured and live with Epilepsy - so of course I started the healthcare sign-up process on day one. My state requires using the federally generated healthcare.gov process. (Online sign up results will vary based on whether your state sets up its own service or not.) Most states use the federal system.

Federal system - for the first 30 days the system was unusable. It would not populate form fields. It would not save most information to the database. It would not recall information that it had saved.  

It took weeks for me to get a login to work. I don't mean it took weeks for me to fill out the application and verify my identity. No. It took weeks to just get the username/password to work. 

The system is still down more than it is up - I was on there Tuesday of last week. Too much traffic (at 2 AM?) - could not log in.  I try to log in a few times every week.

Identity verification process is broken for most applicants. it is better to call Experian and Healthcare.gov on the phone. Phone reps from both companies are excellent - great customer service. (Kudos: https://twitter.com/seizethediary/status/393877888132345858)

I am still waiting for my identity verification to process - the database "backlog" needs to be remedied - so when I (eventually) log in at healthcare.gov the database has my verification info on file. Once the database is fixed I should be able to choose a healthcare plan.

*/

RQ

Cognitive Seeds

It is after midnight. I am experiencing complex partial seizures, the first I have experienced at this level since increasing my dose of Keppra to 3,000 mg per day. My symptoms are typical of my previous complex partial seizures. I am experiencing a sense of derealization. I am a hostage to fear. I am falling down the rabbit hole.

A neural storm has scattered and shattered my emotions. Newly sprouted cognitive seeds give life to photonic phantoms which sprout and grow before my eyes.

 

The world is too fast, too loud.   A single point of time, a single memory, is creeping in on a wave of ictal fear. I am choking and drowning in experiential hallucinations.

My higher cognitive functions are totally fucked.

I am experiencing a single point of time. Not a second of time, not a snapshot, a single point. In essence, though, my temporal neocortex, perhaps more specifically my Amygdala, have turned this point into the inexplicable. It is EVERYTHING.  It is a universe onto itself. It is omnipresent and omnipotent. I am overwhelmed, engulfed, my brain has gone supernova and sucked me into a cognitive black hole. 

Brain Zombies - Attack of the Cluster Headaches

If you have ever had a migraine and screamed into the darkness - you know pain.  If you have ever broken a bone and lived months without repair - you know pain. If you have ever been in labor while your body prepares to birth a full-term fully-fledged new human - you know pain.

Been there. Done that.

What you do not know about is cluster headache pain. It IS different. It IS worse. Cluster headaches suck. They eat your brain.

I'd rather have a migraine, broken hip and be in labor while riding a bicycle uphill in a blizzard as a horde of zombies clamber after me screaming "BRAAAAAINSSS!!" than have a cluster headache.

I mean it.
I do.

-RQ

A TRIP TO AREA 51

Happy Friday! Here's a cheesy video commemorating my recent trip to Area 51.

Director's notes:

• I so totally did have an absence seizure at THE Black mailbox
• That tarantula was awesome
• My actors worked for Butterbrot
• Our rooms had no heat but were clean
• I met a one-eyed horse

I have no idea why THESE pics turned out this way. You HAVE to see them in their original unedited glory:

Absence on the Extraterrestrial Highway

Rachel, NV - Extraterrestrial Highway - Area 51

I had an absence seizure last Friday, October 11th, at the Black Mailbox on the Extraterrestrial Highway near Rachel, Nevada. The Black Mailbox is famous for being near the front entrance roadway of Area 51. It is a spot where many tourists gather to look for UFOs.

I was not abducted by aliens. 

I was, however, momentarily abducted by my brain.  

I had just been handed a camera from a German couple who were on their anniversary. I offered to take their picture at the Black Mailbox.

And then I was on the ground. Fuc...k. Confusion; the sting of a twisted ankle and scraped knee. Oh, good, no broken cameras. 

I handed the German tourists' camera off to someone else.

Give me a minute.

Ankle. Twisted. Need to dust the dirt off of my clothes.

Are you ok? Are you ok?

Ok.

To an outside observer it appeared as though I had tripped over something. A small rock perhaps? I didn't trip though. Had I tripped my body's instinct would had been to brace for impact, for my hands to reach out. I was standing and then I was on the ground. No in between. Standing. Ground. 

Five minutes later I was fine - twisted, dusty and bruised but fine.

I have been fine since. 

This is day five without a seizure. Five whole days. Five. 

The prior week I had Simple and Complex seizures on Friday, Saturday, Sunday and Tuesday. Maybe the medicine is working. 

Maybe this is not reality. My body is lying silently on an alien exam table; I am zipping through space and I am dreaming... 

*/
RQ

$9,153.60

Uninsured? Don't qualify for Patient Assistance programs?
 

Ganesh overlooks an auspicious display

$9,153.60* is what my brand name non-generic anti-seizure medication would** cost. This is not a year supply. This is a four month supply. That's $27,460.80 annually. 


Sure, four months of the generic would run $561.72 - that's $1685.16 annually. However, not everyone with epilepsy can take generic forms of their medication. Brains are funny finicky beasts.  

While most patients can safely switch their medications among different formulations of the same antiepileptic medication, the Epilepsy Foundation recommends that consent must be obtained from the individual with epilepsy and their physician before any such substitutions are made – to avoid potentially life-threatening seizures. Too many people have been harmed; some have even died as a result of an unsupervised switch. (Read more...)

- Epilepsy Foundation

I'm ready to live in a world where everyone has access to life saving medical treatment. Are you?



*Keppra 1000 mg 120 tablets based on Costco Pharmacy listed cash price
** I qualify for a Patient Assistance Program

Enter October

I am busy. Busy is good. Busy means that my brain is working. Busy means that my seizures have been sporadic. I have not had a seizure since Sunday. Are you freaking kidding? I kid not. That's almost three days!! This is big time news for my stormy brain. Wootah! Ordering a #1 Brain coffee mug right after this post.

I am excited about the future. I am excited about the possibilities.

Here are a few things that are going my way this week:

• Projects
• Medication
• Relaxation

Projects. Although I sometimes miss working in the "real world", working from home rewards me with interesting projects. I have a number of projects that I am currently working on - creative/technical/nerdy work - primarily paid but also some volunteer charity work. I work with people all over the world from the comfort of my home. Why yes, I do get to wear pajamas to important (phone conference) meetings.

Medication. UCB sent my adjusted refill of Keppra to my doctor. Well, not my current doctor, my old doctor, who is almost 2 hours from where I now live. I have to pick up the medication in person. That's a whole 'nother ball of wax. Breathe. Anyhow, I will have medication for the rest of the year! A small miracle for someone who is uninsured. Checkbox next to "one less thing to stress over". Checked.

Can't afford your AED medication? Have you looked into patient assistance programs? No this is not some clever advertisement hidden in my diary. Seriously, not having reliable access to AED medication has been my BIGGEST stress factor. 

Check out this list from the Epilepsy Foundation: 

http://www.epilepsyfoundation.org/aboutepilepsy/treatment/medications/upload/Patient_Assistance_Programs_March-2013.pdf

I'm going to level with you here, it can be a tremendous pain in the ass and run-around to get doctors to agree to send in the paperwork. You will have to follow-up with everyone. You may have to make multiple in-person nagging appearances - if your seizures are uncontrolled, like me, you may have to bum a ride from a friend.  You will spend hours and hours on hold. You will need to document and track everything. It can be stressful. These medications though, they don't just CHANGE our lives, they SAVE our lives. Be patient. Don't stress. Write in your own diary as you wait, yet again, on hold.

Relaxation. It's cooling off in my part of the world which means that, well, I can't help myself - it's baking season!!! Cooking and baking help me relax. They are simple pleasures. My absence seizures are extremely infrequent and my Simple and Complex Partials generally give me enough warning in advance for me to avoid chopping off a finger, so far anyhow. Sometimes you gotta live a little. I'll let you know if I lose a digit or get an oven brand in honor of the baking gods.

Wishing you a month filled with good cheer.

RQ

Yesterday and Today

ME: I need to lie down.
BF: Just a minute.

I remember the first Grand Mal aka Tonic Clonic seizure I ever had in public. It was summer, during a short vacation. I was eighteen years old running wild and free with friends. We had danced all night at a club called The Fine Line. It was afternoon and we were wandering through thrift shops and record stores. It was over 100 F, a typical blazing hot Tucson afternoon.

We were in a record store called Zia Record Exchange. My then boyfriend was a huge Beatles fan. Huge. On the record store wall hung his Holy Grail. *cue angels singing* It was the Beatles' album Yesterday and Today, THE one with the controversial "butcher" album cover.

He had to have it. It would change his life. He knew it.

I had to have a seizure. It would change my life. I didn't know it.

I was not feeling well. My mouth had gone metallic, beads of sweat were forming on my upper lip, I began to wonder if I had caught a cold. Everything felt off; surreal.

ME: I need to lie down.
BF: Just a minute.
ME: Right now. On the floor.
BF: Hold on, don't lay on the floor. Almost done.
We were next in line at the cashier. Maybe I could hold on just a little bit longer. Maybe I...
ME: I ca...ah...

I woke up staring at an openwork industrial ceiling and bright fluorescent lights. Where was I? How did I get on the...ahhhhh the back of my head..I could feel the bump rising on the back of my skull. Was there blood? I wasn't sure if my head was bleeding. I was lying on a grey concrete floor. Sounds began to rush in. People. Everywhere. People. Crowding around me. 

My boyfriend was pushing through the crowd. He reached down to grab my hand. He was red-faced with embarrassment.

BF: She's fine. Back up. She can get up.
VOICES IN CROWD: *Gasp!* Ohhhh. *Mumbles.* *Shuffling*
CASHIER: Would you like us to call an ambulance? Sir?
BF: No. She's fine. It's fine.

I shakily rose to my feet. The crowd dissipated. Everyone pretended that nothing had ever happened. The cashier shuffled his feet and looked at the floor. He would not make eye contact with me. Nobody would. My boyfriend hugged his brown paper bag containing Yesterday and Today, dropped his head and yanked me by the arm out the front door.

BF: How embarrassing  You were flopping around like a fish. Never do that again.

What?

*/
RQ
www.seizethediary.com

Don't Give Up - Some Days Suck

Dust yourself off and get back up!

Monday was brutal. I had a number of seizures and felt horrible for most of the day. I felt defeated. I HATE every time I have to take my phone out and punch shorthand seizure codes into Google Calendar through a cloud of tears, snot and cries. I want to type FML, WTF and SUCKS. Seizures SUCK. You know it, I know it. It's okay to say it. It's okay to cry, it's okay to feel depressed but it's not okay to give up.

Today I have felt incredible - lots of work done, no issues whatsoever. Seizures? What are those? Never heard of such a thing.Tuesday - muse day. Today is one thousand times more inspiring than yesterday.

What was the difference between Monday and Tuesday? Monday was stressful. Extremely stressful. You are not a wimp if stress triggers your seizures. Your brain might be a jerk (pun intended) -  but you, no, you are no wimp. You are strong. Every tomorrow holds possibilities. Every tomorrow could be better. If not tomorrow, then the next day or the next.

Today is a beautiful day.

Here is the first thing I saw this morning:

Good morning my love!

I haven't even left the house yet and I already miss you. I love you so much! You will have a good day today. I know it. I love you!!!!

-A 

Thank you A. Thank you for being the calm voice that weathers the strongest of electrical brain storms with me.

And Now For Something Completely Different

By request I present Roadrunner Eating Meatball.

#ghostingitforward #GIF<3

Glitchy Monday

Nothing major but Monday has been a bit glitchy.

First Seizure Free Sunday

Sunday was amazing. It was my first Seizure Free Sunday in months. Took a fantastic day trip in the convertible. No. I was not driving. It was beautiful and sunny out and I got lots of great photography time in.

It was a nice change from Seizure-y Saturday.

 I'm very busy today but had to stop by and say:  Wahoooo!

Happy Monday everyone! Be kind to each other.

We All Fall Down

Welcome to Fall. Fall. This whole mess started with fall, or rather falling. Anyone else ever had an absence seizure and fell down a flight of stairs?

Guess what. My seizure free streak ended last night.

No, it is not the end of the world.

I had a few minutes of irrational fear, visual illusions, nausea and right temporal lobe pain. It did not last for long. It did not cascade into a cluster of seizures. It did not feel as uncontrollable as before.

Time to take my meds and start my seizure free Sunday.

Dancing to Bread Pudding

Hey Diary, it's me, RQ. I'm just checking in real quick. It's been 40 hours since I started my increased dosage of Keppra. It is 8:30 AM and I am making bread pudding and blasting music in my office. I have work to do today.

If not for a kind soul named Annie, I would be doing none of this today. It is more likely that I would be curled up on the floor somewhere in the house contorted and making weird crying sounds while snot drips down my face.  That was typical. That was my new normal.

Today though, oh, hold up, the bread pudding is done, BRB...

Today I am fully functioning. I have paid projects to work on all day. I can do that because somebody cared, because somebody helped.

I do not want to start crying again about how happy I am to feel alive.

We need to care more about others. Caring changes lives. Caring saves lives.

Pay it forward today. Do something simple and kind for someone today because we are all in this together.

Crank it Up

Meds increased. Feeling a bit Keppra zombified but no seizures for 24 hours! Productive day one.
Yessssss!!!!

Control

RECEPTIONIST: We don't take uninsured patients
Me: I am willing to pay cash up front.
RECEPTIONIST (channeling Louis C.K.): Suck a bag of dicks.
Me: Excu....hello? Hello?

Cold calling Neurologists and begging for appointments is heart breaking. Not a single place in a 100 mile radius would give me an appointment. The Neurologist I saw once will not give me an appointment until November 12th - I last saw that Neurologist in April. No follow-up. No medication adjustment. Nothing.

Uninsured. Undermedicated. Uncontrolled. This has been my life so far with Epilepsy.

Hello diary, it's me, RQ. Have you heard? I'm running out of medication. Either I find someone willing to adjust and refill my prescription or I start weaning myself off of the medication now - for fear of status epilepticus from sudden withdrawal from the too low dose of Keppra that I currently take. 

The well is running dry. My options are running out. It's coming down to Zero Hour.

I got a call yesterday. A family doctor was willing to see me as a new patient. When? TODAY! Seriously, today. Really?

I nervously printed out my color coded Excel seizure journal calendar pages and my bulletpoint one page list of types of seizures that I have. This could be another appointment where I hand over cash, nothing is done because my condition is "outside my specialty". I am told "good luck" and shuffled out the door.

I wasn't getting my hopes up. How could I? The realization that my medication is running out and that things may only get worse is very real.

I sat in the lobby filling out a stack of new patient paperwork. SEE ATTACHMENT inked in draftsman penned small-caps on many lines with my boyfriend's favorite pen that I said I'd stop taking from his desk.

NURSE: RQ? 
Me: Yes.

I follow the nurse to the scale. I try not to look at the numbers. I look. Yeah, I hope to hell these boots weigh ten pounds.

NURSE: How tall are you?
Me: Five-four

I follow the nurse to the exam room.

NURSE: Hop up on the table.

She grabs my hand.

NURSE: You are absolutely frozen!
Me: I know. I don't feel well in the afternoons. Medicine wearing off.
NURSE: Blood pressure a bit high, probably just nervous to be in a doctor's office.

The nurse leaves after recording my elevated blood pressure. I wait for the doctor.

I am freezing. It's already started. My right temporal lobe is throbbing deep below the surface. Every sound is heightened. Loud. The mumble of a patient and doctor in the next room - blasting in my mind - too loud - disturbing - I try to ignore it. I can feel the fear creeping up. Rising epigastic sensations? Check. All the stereotypical signs are there.

She enters. Blonde haired, petite and smiling warmly. I like her immediately. She shakes my hand and notes my icy skin.

I am already having trouble speaking. I am having a seizure in front of a doctor. It's real. It's here. It's now. I try to hold it together through jitters - fighting to get words out. It is good that I have printed all of my documentation. It is good that I only need to shakily point and say a few words.

And she turned around and took me by the hand
And said I've lost control again.
And how I'll never know just why or understand
She said I've lost control again.
And she screamed out kicking on her side
And said I've lost control again.
And seized up on the floor, I thought she'd die.
She said I've lost control.
She's lost control again.
She's lost control.
She's lost control again.
She's lost control.

- Joy Division - She's Lost Control 

I cry when she writes me an adjusted prescription - a higher dosage of medication - enough to hopefully stop the uncontrollable seizures.

ME: You are saving my life

She sniffs and her eyes mist over. She tells me we are going to get things under control. 

Masquerade

The painted faces on the street
caricatures of long ago
oh they were young and oh so sweet
down beyond the boulevard
knock on doors and empty halls
and still sometimes remember
the masquerade's forever

Berlin - Masquerade

I love this time of year, the last summer days leading to Fall. I spent Saturday morning wandering through a Halloween store looking at cheap costumes and tacky lawn displays. I went to a concert on Saturday night. I spent Sunday afternoon making raspberry lemon muffins.

I had two good days this weekend. I only added two time stamps to my Google calendar. One was Saturday when it appears that I  mentally "checked out"  in Safeway. Maybe I was day-dreaming, maybe it was an absence seizure - since there was no pre-ictal agony or pain. Odd. Generally I have some sort of my-head-is-fucking-murdering-me aura before anything hits me. I would not had noticed if not for my boyfriend asking what took me so long (it took me half an hour to grab one item and meet him on the other side of the store? What?) Two was Sunday afternoon when the typical coldness crept over my body and chilled my limbs. I went to sleep for two hours. I felt fine after.

Otherwise my weekend was magical. My slumber filled with surreal yet non-threatening dreams, my waking hours filled with conversation. I want to tell a million stories when my brain is working - I want to get everything out - before the cognitive clouds gather again and the electrical brain storms return. Brain monsoons.

I was thinking about the duality of my summer childhood days.

My maternal grandparents were prim and proper. Maternal summer days were filled with pretty dresses, crisp linen, books and embroidery work. I baked peach pies with my maternal grandmother and gathered strawberries from the garden. I wore white satin gloves and had tea parties with my grandmother. My well-dressed grandfather would take me on weekend day-trips to prospect for opals and other gems and minerals.

My summer childhood days were chaste.

Sometimes when I have a seizure - it is not fear that I feel - instead I feel TIME, a very specific moment of time. Sometimes I feel an exact moment of time I spent with my maternal grandparents - I feel the exact color, emotion, warmth, and smell of the moment - an exact moment perfectly preserved, crystallized and encapsulated - I am emotionally overwhelmed by the nostalgia. Afterwards it is impossible for me to speak about it without a face full of tears and a lump in my throat. The moment - it is heightened -hyper-real. Sometimes seizures are like time machines.

My paternal grandparents were drunk and disorderly. Paternal summer days were filled with dirty hair, greasy burgers, books and bar patrons. I ran wild in the desert as my maternal grandmother tended bar. My t-shirt and jeans wearing grandfather would stop to buy me a "pop" at a local bar on our way home from grocery shopping. I didn't realize as a child that it was because he needed another drink - he couldn't wait to get home to his own bar - he had to have another drink right now.

I have not had seizure related memories of my paternal grandparents - instead my memories are "real" (sometimes seizures make you question what is "real".). My memories are sometimes happy and sometimes brutal - spending early mornings with my cousin's in my grandparents bar - we shot pool and played the jukebox while our grandparents slept - we drank far too many high ball glasses of soda pop from the [soda] [tonic][Coke][7up] button-triggered bar pour gun. We rode dirt bikes, traded pocket knives, shot off firecrackers and ate too much candy. We explored abandoned yet perfectly intact houses - pretending they were our own.  We ran under foot among drunks and floozies. We cried when our grandfather was murdered.

My summer childhood days were vulgar.

the reeling figures pass on by
like ghosts in some forgotten play
beneath the black and empty sky
music plays and figures dance
with partners chosen by chance
and still some times remember
the masquerade's forever

Berlin - Masquerade 

Friggatriskaidekaphobia

Happy Friday the 13th!

Some of my fondest memories are from Friday the 13ths. The day we moved into a new house. The day my brother wrote FUCK in the neighbors wet driveway cement. The day my local Payless Shoes store manager called ME on the phone one boring afternoon in 1981 to tell me I had won FREE shoes for my amazing coloring contest entry! Yessss! I rocked that clown coloring page. I tossed and turned all night thinking about my shoe prize.

Frig. I did not fall asleep until 3:00 AM last night.  Same story. Different day. I take Keppra in the morning and six or so hours later I begin to feel the stab of pain in my right temporal lobe; I feel the cold slowly crawl down my limbs. I wait at least eight hours until I take the next dose. On a good day I will only have multiple Simple Partial Seizures (SPS) between doses. I do not keep track of every SPS but try to track every Complex Partial seizure.

Suck it September.

September has not been a good month. I have had Complex Partial Seizures and Tonic Seizures almost every day. Complex Partial Seizures are freaky because I do not remember moments of time, I feel them creep up and garble my ability to communicate - sometimes I become highly irritable and communicate irrationally - sometimes I just stare bug-eyed into space and become non-responsive. Tonic seizures are weird because although I maintain conscious ability my body becomes contorted. I like to imagine that I curl up coolfully though - striking Count Orlok's Nosferatu poses like good ol' Max Schreck circa 1922.

*/

Read more from RQ at www.seizethediary.com

Suck It Amygdala

Irrational Hulk signing in. HULK AFRAID.

I can feel when my medication is wearing off. As I've said, it's normally about 6.5+ hours after I've taken my last dosage of Keppra. Sometimes it is sooner. Sometimes the medication never quite feels like it has "kicked in".

There was no "kick in" last night.

I take my medication at 8:00 AM in the morning and by 2:30 PM I normally feel the old familiar twang of ache from my right temporal lobe. And then I play the waiting game. I am prescribed to take Keppra twice daily, every 12 hours. I NEVER make it to hour twelve without having a seizure or six. I try to hold off. I don't take my medication until at least 5:30 PM.

I suffer through the Simple Partial Seizures (SPS) that creep over me throughout the afternoon. I don't worry too much about those - it's the Complex Partial Seizures (CPS) and the Tonic Seizures that really get me going. Simple Complex - my head hurts, my stomach is flipping, I feel fear, I'm freezing - this is my normal midday reality. I'm not quite there yet today. Give it time. It's creeping in the shadows just around the corner.

I took my second dosage of Keppra (1000 mg) at 5:30 PM. I made it! Only a few hours of SPS. If the meds work I get a few hours of peaceful normalcy and my life is happy and all is well. I try to go to bed before the meds wear off again.

Head still hurting. Still freezing. No appetite. Everything is blah.

According to my notes, it was 7:30 PM when I began feeling "off", not just SPS "off" but on the verge of CPS off - as though I might check-out at any time.

I was having a conversation with my boyfriend. Wow, my right temporal lobe is feeling super stabbity. Quiet down up there! *broom handle to upstairs brain bonk*

RQ: Amgydala are you there? It's me, RQ. Hello? Why is it so dark in here? Who turned out all the lights? Where did the happiness go? I'm afraid.

Amygdala: EVERYTHING IS WRONG!! RUN!!! FIGHT OR FLIGHT! FIGHT OR FLIGHT! 

RQ: I'm afraid but I will fight! FIGHT!!!!!!

I am arguing with my boyfriend. My brain has absolutely convinced me that I have every right to engage in an intellectual battle to the intellectual death. It is the most important battle of all time. It is my battle and I MUST win it.

BF: Your medication is not working. No more conversation. Let it go. Lie down.

RQ: You want to take EVERYTHING away from me! I won't let it happen! I won't!

BF:  No more. 

RQ: I WON'T LET IT HAPPEN!

two minutes pass....

RQ: It's going away.

BF: What is?

RQ: The fear. It becomes EVERYTHING.  It's going away now.

BF: Good.  

My muscles are contracting. My body is contorting and curling. I cannot control this.

I cannot sleep until after 1:00 AM.

Learn more about the Amygdala starting at 1:00 in this video.

The amygdala has long been implicated in the semiology of temporal lobe epilepsy. John Hughlings Jackson's (1880) earliest description of the ‘dreamy state’ published in Brain stresses the sensations of terror and anger, as well as the premonitory and epigastric sensations, olfactory hallucinations and automatic behaviours that we recognize as features of complex partial seizures arising in the temporal lobe. 

Scientific Commentary:

• Dimitri M. Kullmann

What's wrong with the amygdala in temporal lobe epilepsy?

Brain first published online September 14, 2011 doi:10.1093/brain/awr246 

Tonos: The Hands of Fate

I think I've found my Halloween costume. How about you?

I had a stiffy at 2:00 AM. 

I take 1000 mg of Keppra twice daily but it isn't enough. Somewhere around T-minus 6.5+ hours I start feeling WEIRD. I get my typical headache in the right temporal lobe, I feel frightened, irritable, cold. Sometimes I can fall asleep and just experience seizures in my sleep. Sometimes it is impossible to sleep. Last night was an impossible-to-sleep night.

I have been experiencing new seizure symptoms. WebMD strongly suggests that these symptoms are indicative of taint cancer. My symptoms are textbook for Tonic Seizures

My jaw tightens. I cannot control my eyes. My neck muscles feel as though they are winding tighter and tighter. My hands and feet begin to curl into distorted positions. I cannot control this even though I am fully conscious.

My favorite Tone is Tone Loc. LMS if you are an 80s kid.

Sometimes the tonicity is so great that I feel my chest constrict. Air escapes my lungs and my mouth opens to release a small shrill cry. I sounds like baby Godzilla blowing bubbles. Sexy.

A Little Background Info

Temporal Lobe Epilepsy

Just notes.

Medial temporal lobe epilepsy often has an onset within a structure of the brain called the hippocampus.  It accounts for almost 80% of all temporal lobe seizures.  Medial temporal lobe epilepsy is also considered a syndrome, which means that a lot of different conditions can result in medial temporal lobe epilepsy.  Individuals who have medial temporal lobe epilepsy have seizures by definition of temporal lobe origin.  There are a lot of different names for the seizures that occur in temporal lobe epilepsy, including,“psychomotor seizures”, “limbic seizures”, and “temporal lobe seizures”. 

I love the word hippocampus. Hippo...campus....

 However, there are some risk factors that suggest that an early injury in childhood for patients may end up developing medial temporal lobe epilepsy.  Many individuals will have a history of at least one seizure having occurred in early childhood with the majority experiencing some type of febrile seizures.  Others conditions often associated with temporal lobe epilepsy are head trauma that has resulted in loss of consciousness, injuries during early childhood and birth, brain malformations, infections such as encephalitis or meningitis, and even some tumors within the temporal lobe.

And further...double down with the febrile and meningitis?

 The most common manifestation of auras typically is that of a déjà-vu experience or some gastrointestinal upset.  Feelings of fear, panic, anxiety or a feeling of a rising epigastric sensation or butterflies with nausea are also other ways in which auras present in medial temporal lobe epilepsy. Some people also report a sense of unusual smell that can raise a possibility of a hippocampal abnormality or a tumor in that area.

Like this status if you seize every time. Common manifestations/yay for probably not a toomah.

Sometimes seizures can be associated with a fixed stare, impaired consciousness, in fumbling with their fingers or lip-smacking movements that last 30 to 60 seconds.  There can be a posture change in an arm that also can help to delineate the location of these seizures.  Some people also note problems where they speak gibberish or lose their ability to speak in a sensible manner.  Some individuals report difficulty with the language, particularly if the seizures are coming from the dominant temporal lobe 

The freakin Pod People stare and aphasia. Impaired consciousness? Yes, please.

The diagnosis of medial temporal lobe epilepsy is still by listening to a person describe their seizures or talking over the symptoms of the seizures with a witness.  An MRI of the brain is considered the standard radiology procedure on these individuals in order to see the characteristic abnormalities associated with medial temporal lobe epilepsy.  An EEG is also an essential aspect of the management of patients with medial temporal lobe epilepsy and they often present with anterior temporal spike or sharp waves, which can invariably occur in both wakefulness and/or sleep.  Sometimes recording seizures is essential in a video EEG monitoring unit.  This is often done in order to localize seizures in preparation for surgery so that a decision can be made, whether surgery can be offered, and whether this may be helpful to stop the seizures in this situation. 

 Isn't that kinda crazy? Guess what. EEGs and MRIs - expensive but not magic. Personally, Non-insured-Joe over here - cannot afford luxuries such as video EEG monitoring or an MRI. For the uninsured, medical care for epilepsy is more like a trip to the village curandera than it is like a voyage through Star Trekkie phaser-scan machines.

I Hope That's a Zit

It's 5am. Why am I awake?

The seizures I have now are nothing like the seizures of my childhood.  I am not sure if those seizures would qualify as "febrile" or just simply the result of heat stroke. I'm curious but not interested enough to do any research into that.

We were staying at my uncle's house one summer. He refused to turn on the air conditioning. He lived in Phoenix. I know that some folks keep the thermostat high to save on cooling  bills but setting the dial at 98 C isn't exactly "cooling". The 98+ degree night temperatures in his home began cooking my brain. On my uncle's couch - I began to flop and fizzle like a fish in a cast iron pan.  This concerned my mother. Like all good 70s moms she didn't take me to the hospital, instead she raced me home in her Camaro. There was no air conditioning in the Camaro - my mom kept the windows rolled down, platform heeled sandal pushed into pedal, metallic tube top worn bralessly and Vidal Sassoon hair blowing in the wind. Every 15 minutes or so mom would throw ice water on my  twitching body.

I lived. There's really nothing more to that story.

The seizures I have now are nothing like the seizures of my late teens and early 20s. Those were from bacterial meningitis  - bacterial meningitis is the good shit - the kind that kills a lot of people. The seizures I had afterwards are the type of  seizures that most layman refer to as Grand mal.

I had a grand mal seizure in a huge record store once. People really freaked out and it was just like on TV where everyone stupidly crowds around you and screams for an ambulance. Nobody called an ambulance.

I lived. There is really nothing more to that story.

Why are the seizures that I have now so different? What's the pathology? Where did they start? How?

I don't have a definitive answer. I'm not an Epileptologist, hell, I'm hardly a scientist. What I am though is a documenter. I have documented my seizures over time.

Seizures I loosely documented: I was having absence seizures for years - maybe two or three times a year. They were a constant source of sprained ankles, busted ribs, bruises. For fucking real I was falling down the stairs at random times, running into a lamp post on the street, falling off of the city bus while carrying groceries. I got really good at keeping wrist and ankle braces in my bag  - supplies to unzombie myself at any moment. RICE: rest, ice, compression, elevation.

My current seizures are not those seizures.

What are they then?

On Monday, April 25th of 2013 I was at home. I had an absence seizure. I checked out for a minute. When the world came back into focus I was on the floor of my bedroom. My last memory was of walking down the hallway. I noted this in my Google calendar.

sidenote: The weird thing about absence seizures are that they give me a noticeable tremor in my hands - that tremor lasts for days. I normally have very steady hands so the tremor fucks with me on a psychological level. I have not had an absence seizure since I began taking Keppra but then again I only have 1 or 2 absence seizures a year typically.

A few weeks later I was on vacation - hiking canyons in Mormon god country. These seizures were different. Although I did have an absence seizure on March 11th (noted in Google Calendar as "Fall") something different was going on. The new seizures had precursor symptoms that became "typical" - these are known as pre-ictal or prodome symptoms or sometimes they qualify as an "aura" or sometimes as a simple complex seizure. Seizure terminology is confusing and inconsistent - at any  rate weird shit would happen, the same weird shit over and over again. At first I would feel as though my stomach were dropping - a feeling similar to when you ride on a roller coaster and go down a steep slope at high speed -  it's the weeeeeee part of the ride, I would also feel headache - very specific headache in the right temporal lobe, I would feel cold, I would feel nauseous.

During seizures observers say that I would stare off into space and become unresponsive. I find that terribly creepy. Pod people creepy.

Post-ictally.. do you mind if I say post-ictally, we're all friends here, right? Post-ictally I would be EXHAUSTED, post-marathon level exhausted - not that I've ever ran a marathon - I've given birth though - so what I am saying is THAT level of exhaustion - like a baby had just escaped my body and now I want a Gatorade and sleep.

What started these new type of seizures?

I was thinking about this when I woke up this morning. I have a zit on my upper lip. Shit, I hope it's a zit. I say that because last December my boyfriend had a cold sore on his lip when he woke up one morning. I didn't kiss him for the rest of the weekend. It was too late though and somehow, some way, despite the fact that 90% of the population ends up infected with Herpes Simplex (cold sores) by early childhood - I got my first infection with the virus last year. 

The infection sucked. Big time suckage. I was sick for over a week - in bed levels of sick. I had to take antiviral medication and I looked like Joseph Merrick. I stayed in my bedroom with a burlap sack over my head.

I found Merrick, as I have said, remarkably intelligent. He had learnt to read and had become a most voracious reader. I think he had been taught when he was in hospital with his diseased hip. His range of books was limited. The Bible and Prayer Book he knew intimately, but he had subsisted for the most part upon newspapers, or rather upon such fragments of old journals as he had chanced to pick up. He had read a few stories and some elementary lesson books, but the delight of his life was a romance, especially a love romance. These tales were very real to him, as real as any narrative in the Bible, so that he would tell them to me as incidents in the lives of people who had lived. In his outlook upon the world he was a child, yet a child with some of the tempestuous feelings of a man. He was an elemental being, so primitive that he might have spent the twenty-three years of his life immured in a cave.

-The Elephant Man and Other Reminiscences

I haven't had another visible cold sore since. WTF? Is the virus is hiding in my brain? Is it causing seizures? Science says that it is a possibility:

"...investigators at the NINDS who reported finding HHV-6B replication in the hippocampal astrocytes in two thirds of 24 patients with mesial temporal sclerosis, but not in patients with other causes of epilepsy. They speculated that HHV-6B might cause seizures by interfering with the astrocytes’ ability to transport glutamate (Fotheringham 2007). "

http://hhv-6foundation.org/associated-conditions/hhv-6-and-epilepsy

There are other possibilities though...

Thursday, September 5th

Yep. Better! I feel like I could wrestle a goat while simultaneously knitting a sweater. None of that happens. I do some house cleaning, lots actually, lots. Get some work done; plan some new projects.

My Neurologist MIGHT have an opening before my newly scheduled appointment in November. Maybe if someone cancels. Maybe. I pay cash and get treated like shit. For a five minute $300 office visit I MIGHT get a dosage increase in November.  Fuck, I hope so.

Wednesday, September 4th

Fuck me. I feel better after the med increase. Only minor sleepiness in the afternoon and some temporal lobe pain but no big.

Tuesday, September 3rd

Do not attempt seizures while uninsured.

I try to stick to my plan of lowering my medication dosage because I fear I will run out of medication before Obamacare or something comes along. I am freezing all day. My right temporal lobe pain will not stop. Seizures similar to Sunday and Monday only increasing.

My entire body aches and the anguish I feel after multiple seizures is getting to me. I punk out and take an increased dose of Keppra.  At this rate I will run out of medication before Christmas. Shit. Hohoho.

Observed: Lapsing into fetal position more severely now. Limbs drawing in toward body. Glassy eyed and nonresponsive.

Monday, September 2nd

Seizures both with and without aura. Similar to Sunday.

Sunday, September 1st

Pink days are bad days. More time stamps = more seizures.

I have completely lost it right? How do I think I'm going to lower my dosage of medication to "stretch" it out until an undetermined future date? I don't know but I'm really trying to lower my dosage back down to what I was prescribe initially in April. Why? Because I cannot get anyone but a Neurologist to increase my dosage of medication.  I can get refills from a Physicians Assistant, no problem. Problem is I am only prescribed 1000mg per day. I need twice that amount to make the pink days go away.


 Sunday sucks. Big time.

By afternoon I am lying on the floor in the bathroom while my boyfriend stands over me and tries to communicate with my uncommunicative body. Of course I don't remember any of this. I do remember going into the bathroom. I do remember lying down. Sometimes when I get an aura I will get this very strong urge to lie down for my own safety.

On the floor I lie in a painful contorted fetal position. I am unresponsive. I am making crying noises.


When I return from my little painful trip I am looking at red shoes. Red shoes? Yeah, my boyfriend's shoes. What the hell am I doing on the floor?

He talks to me in a calm voice and makes me lie down on the couch. I am exhausted. I still refuse to take a dose of medication that will help me out. I mean, I'm gonna beat this thing. I'm tough. You canduit!

By late in the evening I have lost. I am, ahem, according to observations, continuing to assume painful contorted fetal positions and becoming unresponsive.

I come to exhausted. My right temporal lobe feels like it is mushy and bruised. I spit blood into the bathroom sink.  I cry and cry and cry.

Take your medicine. Take it now. Take enough. Now. Now. Now. Go take your medicine. Go take it. Take it now.

He has to tell me a hundred times.

I finally begrudgingly take a full 1,000 mg dose. It isn't a miracle but within an hour I feel slightly better. My body begins to relax. I think I can sleep tonight.

Review of August 2013

Pink days are bad days. They are days I have seizures.

First half of August was good but by mid-month I was beginning to really feel the medication wearing off by mid-day. I try taking a nap in the afternoon to "stretch" the medication but it doesn't really work. I start having seizures in my sleep.

Aug 27, Google Calendar note:

Need to ween down to 1,000 mg per day maximum medication (which was original starting) dose - if I want this medicine to last a full six months - until hopefully I can get insurance. PA will not prescribe increased dosage. Afraid of going back to neurologist for another $500. What if I'm just told "too bad?". Fuck. This is not how this medication is to be taken. I have zero follow-up/adjustments. I hate having multiple seizures a day.

Aug 28th, Google Calendar note:

 Up all night. Extreme fear, temporal pain, typical nausea, urgency to pee, completely fucked.