The Vagus Nerve Stimulator

The first Monday of every month, I go to a support group. This support group has only happened twice, but last night we had two speakers, one was the sales person/nurse for the VNS manufacturer, and the other was a local epileptologist. I had NO idea we had one in the area, last I looked there weren’t any. We talked a bit about what was going on in our lives, and then the VNS speaker stood before us and presented. She handed us VNS implants to hold, to look at. I, personally, am unlikely to get one of these devices. I’m a bit of a VNS-a-phobe if there is such a thing. But to hold a device that could change someone’s life in your hands? It’s a bit like holding the red button to start a nuclear war.

This little device is a little over the size of a quarter with one big wire coming out of it. As I rolled it around in my hands and looked at the electrodes that wrap around the Vagus nerve, I thought to myself If I knew this could change everything tomorrow, I’d be in the operating room now. The problem is, I’ve heard some horror stories about the VNS, and even after hearing the success stories it’s hard to get those tear jerking memories out of my head.

The VNS is now being used to treat depression (although no insurance company will pay for it, despite the limited side affects and how well it works). It’s come a long way since it was the size of what felt like a dinner plate.

I guess my point is, treatment is evolving, changing. I want to be someone who helps people get better. I want to be someone who changes at least one person’s world.

Please remember to donate. The race is on Sunday and we need to get closer to our goal! Even if it’s $1, please donate!


The Bad Days.

Some days are good, some days are bad. The good days are wonderful. You get to enjoy time with your friends, smile, laugh and know that it’ll be OK. The bad days you really feel the urge to just sleep the world away, and you pray that maybe tomorrow will be a good day.

Yesterday, well yesterday was a bad day. I had gotten home, and then… Well I don’t remember a lot of the evening. I ate, and then the seizures started rolling in. I said something on Twitter about it. My mom says she called. I slept. I slept a lot. 11pm rolls around and I decide to make my way up to bed. My legs were wobbly, I was wandering around like a staggering drunk.

To be honest, at some point I should have gone to the ER. I should have let them look at me. Make sure I wasn’t going brain dead or something stupid. Only problem with that is, they don’t know what to do with me. I can’t take Ativan anymore, their weapon of choice… So what? They stare at me while I feel miserable, and I feel even more miserable because I’m in an ER with blood taken and needles everywhere.

Knowing there’s nothing that they can do. Knowing that the best they can offer is next to nothing. That’s a kind of nightmare no one deserves. I mean, most people when they get sick they can go to a doctor, be given a pill and go home. They may not feel better immediately, but a few days they could. Even cancer patients have treatments. But there’s not much they can do with me. Not much other than use me as a pin cushion.

Today, I should stay in bed. I should watch some Netflix & sleep. But I refuse to give up my day because yesterday was a bad day. I refuse to let that happen. Today could be a good day, if I give it a chance.

Tea Leaves

This morning as I was doing my early morning surfing and preparing myself for the day, I took a drink of my tea. I’m drinking that green herbal stuff that doesn’t come in little baggies so you get stuck having to actually… see the tea leaves. As I looked in the bottom of my cup I saw the few leaves that escaped as they swirled around.

If I were a different person, I may look at those tea leaves and try to figure out what they mean. Maybe they mean I’m going to have a happy, healthy life. Maybe they mean my true love is about to come. Or maybe they just mean I need a better tea thing-a-majiggy.

The fact is, my future is uncertain. I may remain forever as I am now. I may always have seizures waking me up in the morning, bothering me at work, making it so independence becomes harder and harder. OR I may become seizure free. Maybe we’ll find the perfect combination of drugs that “cures” me. MAYBE just maybe I’ll be able to have a temporal lobectomy and stop having seizures that way. Maybe I’ll cave and get a VNS (for me it’s my worst nightmare, for others it’s been a dream come true).

I just want some certainty in my life. I’d like to know that tomorrow I won’t have any seizures. Tomorrow I’ll be able to get in my car and take myself to the store and get a big thing of toilet paper without having to worry how I’m going to get it on my bike, or WORSE take it on the bus. I just want some certainty that tomorrow will be easier.

The tea leaves are now down the sink, never to be seen again. That’s probably a good thing. No good news ever comes from tea leaves anyway.

A Good Day?

I’m wondering if today will be a good day. I know that’s silly but it’s something I have to worry about. Since adding Clobazam to my regimen I’ve been tired. I sleep fitfully and it’s not a pretty thing. NOW, now I get to add another dose of Clobazam (in the morning) take away 1/2 of my Keppra intake (HURRAH!) and keep my Vimpat levels the same. Today, I’ll be either a walking zombie, asleep, or possibly perfectly OK. I’m not counting on that last one though.

I do feel sorry for my coworkers, however. When things get like this, I stop making sense and my work is so much harder to keep up with. My train of thought is never right where it’s supposed to be, and I take more notes than I ought to. It’s not to say I don’t accomplish my goals… It’s just I should be able to accomplish more than that.

New drug

Clobazam is a fun thing. It’s like being drunk in pill form. When I first take it, it’s like being black out drunk. Approximately 1hr after taking it, it takes everything I have to stay awake. The next morning? I’m buzzed. My nose tingles and I’m a bit giggly. Right now I’m on 10mg in the evening, next week I start 10 mg twice per day. That’s when it’ll get interesting. The whole not being able to make it to work thing. We’ll see how that goes.

Otherwise, the drug isn’t awful. I’m not seeing some of the initial side effects like I have with many others. Tiredness, on a whole is not a miserable thing to suffer through. Drunkeness? Well people spend lots of money for that sort of thing. I’m still having seizures. I’d like to say they’ve slowed down some, but not yet. That’s fairly normal for adding a new drug. Nothing stabilizes quickly.

I do know, however, it’s not a cure. It’ll only last, at best, a few years. Maybe I’ll be one of the lucky few that this helps until we figure out something else to do.

As always, remember to donate. You can find the information to your right on this page. We need more treatment options. It’s not fair for anyone in this world to have to suffer through “well, being miserable is better than having a seizure”. That’s not a good way to live.

Illegal Drugs!

My drugs from Canada are here. In order to prevent the pills from getting seized at customs, it had a nice letter written by my doctor…

To whom it may concern:
Ms. J is being followed by the Johns Hopkins Department of Neurology for the diagnosis of intractable epilepsy – complex partial seizures. She is currently being managed with medications. She has failed more than eight medications and is currently on Keppra and Vimpat. Despite these medications she is still having break through seizures. I am prescribing clobazam to her medication regime.

Any further questions yadayadayada

Dr B

Apparently the major loophole we’re jumping through is that the FDA & customs allow drugs through if they’re unavailable in the US and shown to be of major assistance to those unlucky sods who have nothing else available to them. There are several pieces of paper all confirming the same that this drug ISN’T available in the US and I really really need it.

I’ve taken dose 1 and I’ve no idea how I’ll react to it. I guess I’ll tell you about that tomorrow.

The past few days

I’m still waiting on my meds to arrive. It really hasn’t been that long, but I’m actually fairly giddy about ordering drugs from Canada. From what I’ve read it’s more common than we’d think and only moderately bordering on the illegal side of things. The US *IS* currently doing FDA testing, but it’s still a few years off for this decades old drug to be approved here.

In the mean time, I’m tired. I’m bordering on cranky most days and really I would be happy to just sleep a few days running. All of the articles say fatigue is a mild side effect of Vimpat, but to be honest it really puts a hamper on my day-to-day life. I never want to be awake, and I could generally fall asleep just about anywhere. Oh golly that’s fun!

I still hope the NIH gets me in for the case study soon. I’d like to move along towards surgical intervention. I’m tired of seizures, and I’m tired of being tired. I’d love to go back to living a normal life.

I got a bike, mainly so I can get to and from places and have a bit less dependence on others. At least this way I can get to & from the co-op and get some vegetables as needed. No need to beg for car rides. That is definitely a major bonus. One issue is that the bike is a one speed with cruiser brakes. Funny how much that matters in a very hilly city.

Otherwise life is much the same. Caroline is working hard towards her goal to be fit & ready for the NYC Marathon in November. You can read about her training at her blog. If you’re interested in donating to make research a bit more possible, check out our donation site at the Epilepsy Foundation All money will go to research to help treatment options.

The Epilepsy Foundation

I don’t believe I’ve really written about how much the Epilepsy Foundation has helped me over the years. I feel it may be about time to do so.

Since I was a child, I’ve been relatively involved with the Epilepsy Foundation. That said, I’ve never gone to Congress speaking on behalf of the Foundation, I’ve never run around doing massive fundraisers, but I’ve done what I could. As a 17 year old, I spoke to the health classes about what epilepsy is, how it is managed, and more importantly how there is no cure. Those in classes below mine understood, and I think walked away knowing some of what we go through.

The Foundation, manages to help more people than you could ever imagine on a very limited budget. When you compare cancer funding vs epilepsy funding, the numbers are staggering. I’ve included a copy of a Newsweek article to give you an idea.

The statistics are stark and sobering— and for the uninitiated (which is to say most of us), startling. Epilepsy in America is as common as breast cancer, and takes as many lives. A mysterious and widely misunderstood affliction, epilepsy is a disorder in which the brain produces sudden bursts of electrical energy that can interfere with a person’s consciousness, movements or sensations. Up to 50,000 Americans die each year from seizures and related causes, including drownings and other accidents; one in 10 people will suffer a seizure in their lifetimes. By some estimates, the mortality rate for people with epilepsy is two to three times higher—and the risk of sudden death is 24 times greater—than that of the general population. There are 200,000 new cases each year, and a total of more than 3 million Americans are affected by it—more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined. Between 1 and 3 percent of the population will develop some form of epilepsy before age 75.

There is also a rise expected in the incidence of epilepsy among the veterans of the wars in Afghanistan and Iraq who have sustained traumatic head injuries. Yet public and private funding for research lag far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer’s and $280 for multiple sclerosis). It is time to remedy that gap, and to raise epilepsy to the front ranks of public and medical concern.

There is cause for hope. Science is unraveling more and more of the mysteries of the brain, and perhaps the source of the cataclysmic electrical storms of epilepsy will yield its secrets. Such, at least, is the aim of Sen. Edward M. Kennedy, who is considering a major bill to support enhanced research that will fund more work toward a cure, and of a resolute band of advocates that includes the man who sits nearest the Oval Office in the West Wing. White House senior adviser David Axelrod and his wife, Susan, are the parents of Lauren, a 27-year-old who began suffering seizures when she was 7 months old. Mrs. Axelrod, who contributes a piece in the following pages, is a founding board member and president of CURE—Citizens United for Research in Epilepsy. The group’s mission is clear from the acronym: to learn everything we can about epilepsy in search of a cure.

The reason Caroline chose to support the Epilepsy Foundation (and especially research) is because this isn’t just an American problem. Any funding for research brought in by the Epilepsy Foundation can help every person with epilepsy around the planet. Money makes the world go ’round, and without money the Epilepsy Foundation and other agencies have *no* chance of curing epilepsy. We, the ones who suffer from this disorder, will continue to live our lives around the numerous problems we face. We will suffer SUDEP, side effects, stigma associated with the disorder, and goodness knows what else.

Please consider giving. Please consider supporting this cause. Donate here, donate often, and show the world that you care

And that’s the end of my commercial broadcast. 🙂

The journey

I’m currently on a leg of my journey for treatment. I am being treated at Johns Hopkins I’m Baltimore, MD. The doctors are great, the hospital is wonderful, but the journey not so great.

The problem is: I can’t drive. so my options are either find someone who can drive me, or find someone who can drive me to the train station in Lynchburg, VA. One of my coworkers offered to drive me to the train station as she lives in Lynchburg. So currently I’m at her place and have been since last night. She’ll take me to the train station shortly and then I’ll be off on another 5+ hour journey to Baltimore BWI train station. Man, do I seriously miss driving.

It’s different in an area with lots of public transport. with multiple ways to get anywhere. It’s a bit more difficult here however. Everything is about planning, and not being afraid to ask for help sometimes. I’m not the type of person who likes help, however. I’m independent to the point of silliness really. So I guess this is a lesson in humility and dependence.

Right, off to the station I go!

  • Meg
  • Reid B. Kimball


%d bloggers like this: