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