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. 

$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

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. 

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