What Epilepsy Means to Me: Leslie (Part Two)

We started Leslie’s interview yesterday and are finishing up today.  In the first part of the interview, Leslie told us the ignorance about seizures and epilepsy she dealt with in high school – like her high school peers and teachers assuming she had a nervous breakdown after she had her first seizure.

If you missed the first installment, go here to read Part One.  Who wants to read the end of a story first?? 

Leslie picks up talking about the treatments she’s tried.

Robert’s Sister:  What treatments have you tried?   What has worked?  What hasn’t worked? 

Leslie and her daughter

This is a difficult question because many people are after THE answer, THE cure, or think THEY have found THE answer, THE medication, THE surgery, THE DEVICE, THE medication.

So I would caution readers on several things: “Epilepsy” is a term, rather than a specific disorder with a specific treatment. What works for one person could kill another. So never, EVER tell anyone to try a specific medication, diet, device, surgery, etc. You don't know that person's medical history, what their sensitivities, allergies, etc., are, whether they are surgical candidates, etc. You are not a doctor.

Now that I have offended everyone . . .

I have been on many medications since the 70's, some of which have been pulled from the market for various reasons. I am allergic to many medications. I have adverse reactions to others.

I was finally stabilized on two medications, which I will not mention, lest people demand them of their physicians. I was stable for a number of years, until my daughter was born in 1995. I then began having more seizures, until I was having three per day, plus multiple nocturnal (nighttime) seizures. In 1998, I underwent surgery. A year later, I developed excruciating vertigo, which may or may not be related to epilepsy – all these years later, a dozen top Epileptologists are puzzling over it. About a year ago I began seizing again and am again trying more medications. The current one I am starting is the last non-experimental medication available.

I am no longer a surgical candidate. The first surgery left me with a loss of peripheral vision; a second one would leave me blind.  I am currently out of options.

This is why I bristle when people say, "I haven't had a seizure in five years, since I had surgery/started (medication/diet/mediated/moved/whatever).” DON'T GET COCKY!

Robert’s Sister:  Do you think the medications affect how you feel?

Lol, I don't know! I've been on one or another form of medication, usually multiple medications, since 1974. I'm now 55 years old. How can I judge whether my feelings are from the medication, the disability itself, the obvious changes in the temporal lobe (the seat of emotions),  life, etc., etc.?

Robert’s Sister:  Have you done any advocacy work (individually or with an organization) or participated in any research studies?  What made you want to be involved?

I didn't think about advocacy work until recently, when I found all these amazing state, national, and Facebook groups. I honestly did not know there were advocacy groups! In the 1970's, at least in my area, it was the dark ages. If one had a seizure disorder, one stayed silent. Now – we talk. I am just starting to do that.

Since at this point I am so often bedridden due to medication induced falls, or the need to be in a dark room, I participate mainly online, by posting in groups and on websites, and answering questions about epilepsy and seizures on one of the internet’s Q&A forums. It's shocking to me that the same ignorance I experienced in the 70s is still around today. Just today, I found a question about epilepsy and the first person who answered said it is a mental illness.

I've participated in many research trials, mostly at Stanford University Hospital. It's how I helped test a computer program to provoke seizures, how I learned that one-third of people with seizure disorders also have panic disorder, and how high the rates of depression are in people with seizure disorders.  I do it both to help myself and because it's the one way I can contribute to medical science, a field I was going to enter before epilepsy took away my chance to be either a facial reconstructive surgeon or a paramedic.

If I run out of meds to try (and we're headed that way) I'll be trying medication research trials. Again.

Robert’s Sister:   How has epilepsy affected your life?

I'm not going to mince words here: epilepsy has devastated my life from my first seizure until now.

I was never able to do any career I wanted because my health problems excluded me. Panic disorder, which was part of the epilepsy, kept me from going away to college. The medications affected my thinking and thus choices I made, and I'm sure I would have made wiser choices had I been more clear-headed.

It was difficult to find people to date, let alone a long-term relationship, so I did not marry until I was 36, which of course affected having children. We chose to have one child (who is quite healthy), but the stress of pregnancy increased my seizures so much that I had neurosurgery in 1998 in an attempt to be more present for my then two year old daughter. The sugery was successful for a year, after which I developed remnant, unrelenting vertigo.

Medications have kept me stable for years, and have turned my bones to dust. I fall and break bones nearly every year. I have broken both wrists, both ankles, the tibia on my right leg, and currently I have a broken toe from when I walked into a door while on Ativan to control the vertigo.

This past year, the medications stopped working and I started having seizures again. We are going through so many medications trying to find one that works, and so far have been unsuccessful. Soon, there will be nothing left to try. I am no longer a surgical candidate. There are almost no meds that I am not allergic or have unbearable reactions to.

Becoming more and more disabled has put a terrible strain on my marriage and I honestly do not know why my husband is still with me. Our lives together are nothing like the lives we had planned. I am, without a doubt, a burden.

I have lost every single friend I ever had, including people who knew me before the seizures started. When one can't do much, has to be in a dark room, move slowly, etc., most people don't stay around very long. So, in addition to everything else, I have quite a lonely life.

Robert’s Sister:  What is your favorite memory? 

Without a doubt, it was the lovely firefighter who was there when I drifted in and out of consciousness after my first seizure. I had no idea what was happening, but his calmness and caring made me realize that, whatever was going on, it would be okay because he was there.

He volunteered to ride with me in the ambulance (remember that EMTs and paramedics were a new concept in 1974, and our town did not have any). He went that extra mile to help me feel safe, and he sure succeeded. 

This experience has started my lifelong admiration for first responders. I've needed them many times since, and they have always taken good care of me, coming back to check on me after replenishing supplies at the hospital. They are special, special people, and they have my admiration and love.  Thank you, men and women of EMS.

Robert’s Sister:  Do you ever wish you didn’t have epilepsy?

Pretty much every day. Especially when I look at my life, what I wanted to do, what I will never do, because having seizures made it impossible.

I try to keep an upbeat attitude, but most people have no idea what I am feeling.  I have tried to share what epilepsy has done to my life . . . and the friends disappear.

Robert’s Sister:  What do you want people to know about epilepsy?

Wow. Considering the staggering ignorance out there, even among the medical community:

Epilepsy is not a disease.
Epilepsy is not a mental illness.
Epilepsy is not demon possession.
Epilepsy is not a sign that the person has special mental powers, can communicate with the dead, etc.
Anyone at any age, or background, can develop epilepsy.
Epilepsy kills more Americans annually than breast cancer.
The most common form of epilepsy is NOT tonic clonic (Grand Mal - convulsive) seizures. It is partial, both complex (where the person loses consciousness) and simple (where the person does not lose consciousness). These seizures can affect behavior, emotions, and the senses. So if you see someone acting drunk, high, or psychotic, they may be having a seizure.

Epilepsy is NOT a joking matter.

What can you do? Get educated. Then get involved. We need your help, desperately.

Robert’s Sister:  Is there anything else you want to say?

Yes.

We are real people.  Many folks think epilepsy doesn't affect them personally. But one in twenty-six people have epilepsy. What does that mean?

Put twenty-six people in a room. One will have epilepsy.

Why don't you know who has this disorder? Stigma. That's the sole reason. Stigma had driven us into silence. But not anymore. We need to speak out to remove this stigma. We are your friends, your relatives, your co-workers, people you encounter every day, and we need your help. More than anything, we need your acceptance.

Please don't be afraid. Yes, we know seizures are scary to watch. They are scarier to experience. Don't turn your back on us. Don't forget us. When you find out someone you know has seizures, ask them what you should do if they have a seizure in your presence. Then stick with them.

We are working very hard to live normal lives. But if you don't accept us, we will not be able to. So speak out.

Please.

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business. 

You know, it wasn't until very recently that I even knew about such organizations.

First place I would recommend is Robert's Sister, because Trish has such an upbeat attitude, and has such important information for caregivers, who often need to be the advocates for people with this disorder. And her personal stories give both caregivers and people with seizures an up-close-and-personal look into both what it's like to be a caregiver, and why we need to find a cure. [Editor’s Note: I promise, I didn’t tell her to say that! Thank you, Leslie!]

After that, I would recommend one joins local, state, and national/international organizations, both for seizures in general, and one's type of seizures specifically. Any of these organizations can give you valuable information on how to care for and live with epilepsy, how to find the best doctor and treatment options available, and give you support.

Because believe me, you're going to need it.

Robert’s Sister:  Thank you, Leslie, for sharing your epilepsy story!  You are an inspiration for all of us to get the facts out there about epilepsy and to get rid of the stigma.  

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.