BIKELEPTIC | Slightly Off-Kilter and On Two Wheels

Seizures & Epilepsy – Dispelling Myths

NW Quimby & 16th, Twitter tedder42

Last week in the earliest fingers of the falsest of dawns, on what did we decide? Monday, July 7th? There once was a man. This man was equipped with a lovely shade of salmon and mango (you know, to match the dawn, or ironically. . . my website layout) rattle cans and very emphatically wrote a clear statement on a sharrow and in the bike lane between NW 16th – NW 20th and NW Quimby – Raleigh. This declaration, whether in rage at the lack of equal rights afforded to certain individuals with invisible disabilities, outrage at cyclist indifference or senseless hooliganism, we will never know. The words he etched: “FUCK YOU AND YOUR EPILEPTIC LIGHTS.”

People noticed. A few commuters took photos of it and tweeted to Jonathan Maus who subsequently wrote about it on his very popular Portland area bike news and online resource site: BikePortland. You can read the original article here. And as with any internet or news article, there came the comments. . . and the commentators. I generally stay away from such things, but I was called out in the article specifically for my article that I wrote back in January 2013 called “All Lit Up” regarding this very subject. If this paragraph sounds familiar, that’s because it should. You’re not going senile and there’s not a glitch in the Matrix. I stole it almost directly from an article I wrote a few days ago called, “All Lit Up: Redux” which is a twinsie article to this one. Speaking of the Matrix, Hugo Weaving has epilepsy!

What really stood out to me is the misinformation and judgement that people were throwing around in the BikePortland comments – I really, really hate to use this word, but it was a kind of NIMBYism that I was kind of shocked to see. When it comes to people with visible and intellectual disabilities such as wheel chair users, amputees, low-visibility, or perhaps someone on the Autism spectrum; the public will generally attempt to make considerations for their condition to make facilities more accessible. But sitting disabilities and invisible disabilities tend to be open to dismissive and sometimes angry resentment.

So what about those invisible disabilities? Bare with me because this is old, but a ‘1994-1995 Survey of Income and Program Participation (SIPP) found that 26 million Americans (almost 1 in 10) were considered to have a severe disability, while only 1.8 million used a wheelchair and 5.2 million used a cane, crutches or walker (Americans with Disabilities 94-95). In other words, 74% of Americans who live with a severe disability do not use such devices. Therefore, a disability cannot be determined solely on whether or not a person uses assistive equipment.‘ (source)

And that’s just talking about severely disabled. Disability is defined by the ADA as ‘a physical or mental impairment that substantially limits one or more major life activities of such individual.’ (source) According to the ADA, to be considered disabled: ‘impairment that substantially limits one major life activity need not limit other major life activities in order to be considered a disability. . .an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.‘ Thus people who are HIV+, suffering from PTSD, dyslexia or from drug/alcohol addiction can be considered disabled.

But enough about defining disability in general. Let’s talk about epilepsy!

SCIENCE!

What is epilepsy? It’s a disorder in which a person has two or more unprovoked seizures. Unprovoked means that the seizures are not brought on by a clear cause such as alcohol withdrawal, heart problems, or extremely low blood sugar. (source) So diabetic seizure? Not epilepsy. Doing the whiskey withdrawal dance? Really dangerous. Life-threatening even. If you know someone that needs support in recovery; assist without coddling or getting all co-dependent. However, still not epilepsy.

Is having a seizure the same as having epilepsy? Not necessarily. In general, seizures do not indicate epilepsy if they only occur as a result of a temporary medical condition such as a high fever, low blood sugar, alcohol or drug withdrawal, or immediately following a brain concussion. Among people who experience a seizure under such circumstances, without a history of seizures at other times, there is usually no need for ongoing treatment for epilepsy, only a need to treat the underlying medical condition. (source)

Okay, so seizures. . . generally when people picture a seizure in their head what do they think of? Those flailing on the floor kind make for pretty good ratings on TV, I hear. You may have heard of them as “grand mal” seizures and they are part of the Generalized Seizure family. Also, guess what? Stop calling them grand mal seizures! It’s an antiqued phrase. When Describing a “grand mal” seizure, you’re describing a “Generized Tonic-Clonic” seizure.

Let’s talk about seizure types!

‘Not all seizures can be easily defined as either focal or generalized. Some people have seizures that begin as focal seizures but then spread to the entire brain. Other people may have both types of seizures but with no clear pattern. Society’s lack of understanding about the many different types of seizures is one of the biggest problems for people with epilepsy. People who witness a non-convulsive seizure often find it difficult to understand that behavior which looks deliberate is not under the person’s control. In some cases, this has led to the affected person being arrested or admitted to a psychiatric hospital. To combat these problems, people everywhere need to understand the many different types of seizures and how they may appear.‘ (source)

Seizures are broken up into TWO broad categories: GENERALIZED and FOCAL – searching on the internet, it was difficult to find all of the seizure-types in once place. Many sites would talk about the most common, some would talk about childhood seizures, others would talk about more uncommon disorders. I thought that it was weird that no one sat down and took the time to compile a list of seizure types with a brief description of what type they were and where they affected. . . Oh look. I did. I will not claim that this list is all-inclusive or that I am not missing any information. I am. I tried to look only on reliable (though internet) sources, but I also didn’t take a whole lot of time doing it, relying partially on my background knowledge to guide me. If it’s not in an appropriately sourced footnote format, you know what? I spent a long time on it, but not too much – research isn’t my job, and I graduated college almost 10 years ago. So you get what you pay for.

It IS important to note that there are about 30 different types of seizures and only a small percentage of them the person loses consciousness during. Symptoms vary depending on the type of seizure. The Mayo Clinic says a seizure can produce symptoms such as:

• Temporary confusion
• A staring spell
• Uncontrollable jerking movements of the arms and legs
• Loss of consciousness or awareness
• Psychic symptoms

Psychic symptoms… What they mean by that is that ‘the seizure effects the part of the brain that triggers emotions or previous experiences: it may cause feelings of fear, anxiety, déjà vu (the feeling that something has been experienced before), etc.’(source) It doesn’t mean that I am going to guest host with Jon Edward. What about those Greek Oracles of Delphi that would huff thermal vents to send themselves into seizures to get all prophetic? And then in the 15th century CE, two Dominican monks wrote in the witching hunting guide “Malleus Maleficarum” that ‘epilepsy was the sign of the devil, something that led directly or indirectly to the death of thousands of women, many of whom had epilepsy during the 200 year lifespan of the inquisition.’ (source)

Haters gonna hate!

If you’re interested in reading about the history of epilepsy. Here’s a 27 page document on antiquity to modern day epileptic stuff.

So you have generalized seizures. They happen all over your brain. Like a hat. Then you have focal seizures. They happen or at least start in one part of your brain but then can spread to different parts or all over the brain. Our brains are fascinating. I am sure everyone has heard stories about someone getting in a car accident, having a traumatic brain injury and then acting like a completely different person. Well, this can be exactly like that. But on a very temporary basis. (Or a TBI can be the catalyst for a seizure disorder.)

CAN YOU GROW OUT OF SEIZURES? Yes and no. Some types of childhood epilepsy, like febrile seizures, only effect infants up to about 6 years old at the latest then while they say to watch out for any warning signs, you’re golden. Rick Harrison, the owner of Las Vegas’ Gold and Silver Pawn Shop and star of History Channel’s “Pawn Stars” is the spokesperson for the National Epilepsy Foundation. He also has epilepsy. At 18, Harrison says in many interviews he finally outgrew his seizures. And you know what? That happens sometimes.

In a recent March 2014 interview Harrison raises his concerns about the lack of publicity on epilepsy awareness. “You could take people with autism and a dozen other diseases and there are still more people with epilepsy. I don’t know why it doesn’t have star power. . . I guess it does. I’m a fat bald guy who works in a pawn shop.“

So we’ve been talking about seizures in general. What about epilepsy? Did you know there are almost 40 different kinds of epilepsy!? There are! I made you a list with a brief description of what each diagnosis means. While I was making it, it felt like I was going through the epilepsy haunted house and it was very difficult for me, as someone that has a lot of the symptoms that I was writing about. It put a lot of things in perspective. Sometimes you’re lucky and you get a really fancy diagnosis when you have an epileptic disorder. However, if your seizure has been diagnosed as epileptic (and not as a non-epileptic event such as drug/alcohol use, stress, etc) sometimes the doctors still don’t know what the hell cause them and it can take years to get a proper diagnosis. That’s how you end up with terms like “GEN CONVUL EPILEPSY W/O MENTION INTRACT EPILEPSY.” (Not me, by the way. I HAVE mention of intractable seizures.) That’s their way of putting you into a category so at least they have something to go on until further testing can happen. So they can say, “Okay, we’ve got generalized seizures. So let’s test in that category.” Or even, they can medicate then in that category, because not all treatments work for not all disorders or seizure-types.

So what about treatments? Are people with seizure disorders just screwed? Yes and no. There are some types of epilepsy that just affect children and they will naturally grow out of such as well known actor’s, Danny Glover or pop icon Prince. Others people will be affected for their entire life and respond fantastically to treatment. Once under control you’d never know if it was

Unfortunately not all stories end well, as is the story of Olympic runner Florence Griffith Joyner who died in the midst of a seizure during her sleep and was known to suffer from temporal lobe epilepsy.

Thankfully there is a lot of advancements in medical science; definitely more so than when Harriet Tubman did her amazing work all while suffering narcolepsy and temporal lobe epilepsy. Now there are dozens of antiepileptic medications on the market that have been developed to target certain seizure-types and more. The problem is that what may work for some, doesn’t work for others, getting dosage correctly and not having counteractions. Sometimes the dosage could get up into toxic dosage, which brings up what’s called “polypharmacy” which is using two or more medications to supplement the same issue. This can allow for lower dosages (sometimes) but ends up ultimately with more pills. Of course you need to talk to your neurologist about the best course of action to take on this.

There’s also brain surgery! Sounds scary, but the brain is smart – smarter than you’d think. Wait, what? Yeah. It actually is really good at healing itself. I want to say that we only use about 20% of our brain, but people try to quantify that like jello squares in a pan. You can’t really do that. It’s more like when you’re defragging your computer and there’s a lot of green lines, red lines and unused gray space. When they go in and repair the damaged portions, like scrapping off the brown part on a banana, the brain does an amazing job of reallocating the files and coping. But that only works for focal epilepsy. Because they can go in and pin point the one place that the seizures are starting and nip it in the butt. . . or head. . . whatever. I mean, what are they going to do for generalized seizures? Give you a cerebrumectomy?

There are a couple options for generalized seizures. The vagal nerve stimulator is one that has been found to be moderately successful, though it is primarily used in focal seizure patients. For both teams there is a lot of research into the ketotonic diet. I’ve read a lot about it. I’ve seen some videos on it working successfully. If you have a seizure disorder and want to try it; talk to your doctor. Actually, if you’re doing anything that changes your life dramatically whether it’s an extreme lifestyle/diet change, new exercise plan etc – it doesn’t hurt to check in with them. Especially if you are a smoker and you’re stopping. Nicotine effects both the dopamine and serotonin receptors and your doctor has prescribed you meds based on that. If you stop smoking, you may end up not getting enough meds or getting overdosed. Super important.

Maybe it says more in his 2003 biography by Jim McDonough, “Shakey” or his recent 2013 autobiography “Waging Heavy Peace” but world’s greatest guitarist, spokesperson for environmentalist issues and 68 year old hippie Neil Young got the short end of the disorder stick. Early in life he was diagnosed with epilepsy, polio and diabetes. I’ve read many accounts that he decided to take non-traditional routes to overcome his symptoms but there is not a lot of information regarding what that is on the internet.

I’m kind of talking about “non-traditional” treatments. Right now in Colorado there has been a lot of new gardening techniques they have been working with. But when I mention marijuana, I’m not talking about smoking a joint or sitting on the couch with your kids passing the bong. They’re doing it more nefariously. You know, like they do to the elderly. In the applesauce. Or how you give your dogs pills; wrapped in a piece or cheese or peanut butter. Here’s the Tedx about Charlotte Figi the 6 year old with Dravet’s Syndrome who was treated with marijuana. And there’s nothing “hippie” about these kind of medical marijuana facilities. They are not only breeding for optimal output of CBDs, CBGs and all the other abbreviations I don’t know – they’re not producing your grandparent’s pot. These are like orchid tenders on steroids (except not because they don’t use those kind of chemicals.) There has been a federally approved pill on the market for years in the form of Marinol, that is available for a variety of disorders but IS a controlled substance and can be difficult to get a doctor to prescribe it. The problem that I see with marijuana is that there are so many different strains and they do so many different things. Until they fine tune the growing and production process of weed do I think that it will be more mainstream in herbal treatments. It would really suck to try to get something that you think is supposed to help with anxiety and sleep and end up getting something that is going to make you super conversational, manic, and have that psychoactive properties.

I’ve officially talked too much about drugs, so we will switch gears to. . .

Can epileptics drive? Yeah, sure why not? But seriously if you have your seizures under control and have gone without seizures for a certain period of time, you’re good to go. Here is some more information about specifics on specialty licenses and specific state provisions. As with operating any vehicle, if you’re not under control of your primary functions or will be in a position where you won’t – you shouldn’t do it. Whether that means your blood sugar is crashing, you had a few beers or you just smoked heroin. I don’t even think you’re supposed to operate a razor scooter under the influence. Nope. Just checked. Razor scooters are fair game. Get plastered and have at it.

So how do you tell if someone is epileptic? I don’t know. How do you tell if someone is gay? I mean, unless they’re actually having a seizure (which I guess I could write an article on safety procedures) or engaged in a relationship right in front of you, that’s a pretty weird question. ‘1 in 26 people in the United states will develop epilepsy in the United States at some point in their lives.’ That’s 65 million people around the world. Most of the over 2 million people in the United States with epilepsy don’t qualify for SSDI because despite living every day with either active or controlled seizures, they are still able to work.

Who knows if the next epileptic you meet is going to be a chief justice of the US, former NFL football player or perhaps a popular local bike shop owner you’ve talked to every week.