The story of my Epilepsy diagnosis isn’t exactly a pretty one, but really…who doesn’t have a tumultuous journey with this so-called condition?

I was contacted a couple of weeks ago by a writer for aolhealth.com. As I always say…any and all times we have the opportunity to talk about Epilepsy, it’s a good thing!

My thanks to Amy Capetta at aolhealth, and Cyberonics for approaching me. The more we push to erase the stigma, the more we accomplish for Epilepsy in general.

I know I’ll do everything I can to make sure this happens!

aolhealth.com story on living with Epilepsy

With all of the internet traffic we see lately on Epilepsy and living life with Epilepsy, I haven’t seen much on this news story that was released on Monday:

The headline read: Only some epilepsy drugs may raise suicide risk.

The study was done in the UK, and consisted of more than 44,000 UK patients who used epilepsy drugs between 1990 and 2005. Researchers found an increased risk of suicide, attempted suicide or “self-harm” only among current users of certain newer medications that had previously been linked to a risk of depression.

The drugs? Topiramate (Topamax), Tiagabine (Gabitril), Levetiracetam (Keppra) and Vigabatrin (Sabril).

Everyone on an anti-seizure medication, from Topamax to Dilantin to Vimpat can see the words right on their pill bottle. I checked mine this morning, and there they were: ‘May increase risk of suicidal thoughts and activities’. It most likely depends on your pharmacy, but my pill bottle is filled with other warnings too. It’s a mess of red and yellow stickers (and teeny tiny writing). ‘Medication should be taken with plenty of water (that one is in bold type); ‘May cause drowsiness, alcohol may intensify this effect, use with care when operating a car or dangerous machinery’; ‘This medication may lower the effectiveness of some forms of birth control. Consult your doctor or pharmacist’.

It’s confusing and many of those stickers can be overlooked if we aren’t cognizant of what we are taking. Before you begin a medication, you must speak to your neurologist about the possible side effects. Do your own research on the internet. Know what you are in for before popping that first pill in your mouth. We read often about how depression is so prevalent in people with Epilepsy; we have to know what to expect and what certain drugs can do to us. And, if you aren’t comfortable with the side effects, talk to your neurologist. You may have other options.

Talking to your family and friends, those who are around you often, might also help. People who are close to you will notice changes in your behavior, perhaps even before your notice them in yourself. So, it’s nothing to be ashamed of if you let your spouse, partner or parent know about these warnings. Are the stickers necessary? Yes, but to some degree, we must ‘warn’ ourselves and be prepared for what might happen when we take a certain medication.

As for Monday’s news, doctors will probably tell us if you take medications other than the ones mentioned in this study, you still must be aware. The fact is, thoughts of suicide or depression in general may be associated with the actual seizures. Mood changes may occur before, during or after a seizure, and in other people with Epilepsy, mood changes are not related to the timing of a seizure, but relate to where the seizure is coming from in the brain. A seizure that comes from an emotional center in the brain may be more likely to produce a change in mood.

How often seizures happen also plays a role in depression. People who have seizures frequently may be more likely to feel depressed than people who have well-controlled seizures.

So, there’s still a great need for awareness, and don’t make a secret of the potential side effects of your anti-seizure medications. It just might help you and others around you.

For more information on Epilepsy and Depression, click here.

We ask the question so often. Why don’t more people ‘Talk about It’? In other words, why is it so difficult to speak freely and honestly about Epilepsy and seizures?

Greg Grunberg has done an excellent job of pushing the issue, as have organizations like the Epilepsy Foundation of America, its affiliates, CURE, The Danny Did Foundation. But really…is it so tough to be frank about this? Apparently, yes.

A friend who is deeply involved in Epilepsy programs and advocacy said something to me yesterday that really stuck. She said that it will be the young people that bring Epilepsy out of the shadows. In other words, they seem to have shed the fear and have made the commitment to help erase the stigma. They recognize that some won’t accept their situation, but still, they move forward. When you look around and really examine all of your relationships with advocates, those who live with Epilepsy and those who care for people living with Epilepsy, isn’t this the case?

I’ve mentioned before in other posts that I have no issues speaking freely about my illness, either to others in the Epilepsy world, or those who have no affiliation. I’ve suffered greatly for this; lost friends, sacrificed the trust of co-workers, and raised some eyebrows among other things. But, I committed myself to honesty because this is truly the only way we can help raise awareness and erase the stigma. And, I see so many others who have approached this in a similar way.

But, when I see or read about young people like Kaitlin Nolte or a young man named, Michael Hutton, winner of the 2010 Dakota Pequeno Memorial Scholarship from the Epilepsy Foundation of Michigan, I’m amazed at how open they are about their Epilepsy. They have courage and strength that is so admirable. Not only do they live with their Epilepsy, but they are fighting to make a difference and to raise awareness. Chances are, they suffer like so many of us do, but they don’t let their pain stand in the way of their goals.

It might be too late for many to begin to talk openly about their Epilepsy, but we can certainly support the young people that are fighting to raise awareness and bring more attention to this condition. Whether it’s a $10 donation to their campaign for an organization’s event, the purchase of a purple beaded bracelet or simply reaching out to send them a note of hope, we can support their efforts. Helping them will help us all!

Epilepsy Advocate has launched a new campaign, Women Succeeding with Epilepsy. It’s a super collection of articles and webcasts that are available to all who wish to explore this interesting world of women living with the condition.

It’s true, we have some issues that differ from men. Can I have children if I also have seizures? How do hormones affect my Epilepsy? Can I raise a family if I have Epilepsy? How about something like osteoporosis? Is there a greater risk with Epilepsy?

I got the chance, through Epilepsy Advocate and Healthy Women, to speak to two women who are advocates for women living with Epilepsy.

Blanca Vazquez, M.D., is an attending physician in Neurology and director of Clinical Trials and Outpatient Services at the Comprehensive Epilepsy Center at New York University Langone Medical Center in New York.  And, Elizabeth Battaglino Cahill, RN, is the executive director of HealthyWomen, a non-profit organization providing women with in-depth, objective, medically-approved information on a broad range of women’s health issues.

Epilepsy advocates come in many different varieties. They can be those of us who live with Epilepsy, family members or good friends of those with Epilepsy, doctors and others in the medical field who deal each day with Epilepsy…or simply people who understand this complex world, and care.

I met Susan Noble online several months ago. She is an epilepsy advocate. Can she be classified in any of these advocacy categories? Perhaps, maybe in several, but I think her strongest characteristic is the fact that she is determined to make a difference when it comes to Epilepsy and those touched by it.

Susan lives in Florida and I had the chance to speak with her a few days ago.

“I wanted to do something to make a difference. I’m just that type of person,” she began when I asked her why she is so involved in the Epilepsy world. “I’ve been blessed my whole life. And, when you have someone in your family or in your group of friends who is affected by Epilepsy, you must get involved.” Susan has a family-member with Epilepsy.

Susan has partnered with two other women, Amy Lunn Mosser and Katie Hughes-Schroeder, to create a non-profit organization, The Fighting Epilepsy Foundation. The organization will be based in Chicago. She said the majority of funds raised will go towards research…and technology. The non-profit filings are pending, and Susan said she and her partners are beginning to schedule events and fund-raisers.

“We are three ladies, two of whom have kids with Epilepsy and I think this is our mission,” she said. She is committed to making her foundation unique and to cater to both children and adults. “We all seem to want the same thing. We will focus on research, support and finding a cure.” Susan said her foundation will also work to help parents of children with Epilepsy find the proper monitoring equipment. She has a particular focus on SUDEP and other conditions or situations related to Epilepsy. “I know someone who is terrified to let her two your children sleep alone at night. She is so petrified of SUDEP, she sleeps each night with her kids at her side.”

She wants to educate people, promoting support groups and connecting those who have Epilepsy. “I don’t want to fail, and I know there are many other organizations out there with similar goals and people behind them who are so determined to make a difference,” she said. “I’m hoping that someday, we can all be partners in advocacy, support and research. After all, isn’t that what Epilepsy needs?”

The organization has several events already on the books:

-September 2010: A launch reception for the Fighting Epilepsy Foundation in Texas
-October 2010: A launch party in the Chicago area for The Fighting Epilepsy Foundation
-October 2010: A 5K run/walk in the Chicago area to raise funds
-November 2010: A Texas Hold-em event in the Chicago area to raise funds
-April 2011: A walk to raise funds in Lincoln, NE

More information on these events will be available soon.

You can reach Susan Noble through Facebook. Click here to learn more about The Fighting Epilepsy Foundation.

Susan Noble, The Fighting Epilepsy Foundation

This will be my 100th post on Brainthunders. Is it a huge milestone…one worth mentioning or even celebrating? Probably not to most people, but to me…it’s a fete. So, I hope you’ll allow me the chance to reflect!

Last fall as I was about to take a separation from my job in corporate communications, I had a vision for a blog. I wanted to inform people about Epilepsy, all the while showing support and advocacy for those who live each day with this consuming disease. I wanted to swap stories of success in terms of treatments and medications, helping others find the right care and support. I think we all deserve this.

I know how it affects me and my family. I have miserable days when I scream at my husband, “just make it go away,” and I can’t get out of bed. And, I have beautiful days when I thank God I have the support and commitment from a few family members, my amazing doctors and some remarkable friends. I know there are many others who share this sort of pattern when it comes to a life with Epilepsy.

When I began writing about living with Epilepsy, I decided I wanted to tell both my story and the stories of others, those who live with the disease and those who are connected to those who live with it. I think Epilepsy consumes both those of us who conquer it each day, and those around us. I know you’ll agree.

Can we do much more to raise awareness and hope? Absolutely. There isn’t enough time in each day for us to spread the word. But as I’ve said many times, we must do this together. We have to remain positive and we certainly can conquer. Epilepsy, and the other diseases associated with it, deserves much more attention and action. The people out there who make it their mission each day to help spread the word or raise crucial dollars for research and programs, deserve our support and our approval. One organization can’t do it all. I think we should be thrilled at how far we’ve come, granted there’s a lot more work to do.

As one board member of the Epilepsy Foundation of Michigan once told me, Epilepsy is not ‘sexy’ so therefore it doesn’t seem to get the attention, recognition, let alone the funding, it needs. But I’ve convinced myself that by telling our stories and spreading the facts, we can move the needle. We MUST support each other, whether we are talking about SUDEP, Lennox-Gastaut Syndrome, Juvenile Myoclonic Epilepsy, Generalized or Partial Epilepsy…they all matter.

Five years or even ten years from now, will we be in a better place in terms of support and research? It remains to be seen. Will a cure be discovered? Perhaps. But in the meantime, we can continue to spread the word and tell our stories. I hope you’ll be a partner in this mission.

In the words of Christopher Reeve, “Once you choose hope, anything’s possible.”

Hayden and me, after speaking at an Epilepsy Foundation of Michigan Event

I think I’ve told many-a-readers…we recently moved to a new home. So, talk about stress! The boxes, the unpacking, the painting. Have I mentioned the boxes? Yesterday, I dug through my 114th box (that is an estimate) and discovered something I’ve been saving for nearly 8 years. It’s a wire chest full of get-well cards and notes that people sent me in early 2003 when I got sick and received my diagnosis of encephalitis and meningitis. There are literally hundreds of cards, emails, photos, notes. My Mom and now-husband had kept friends, co-workers and family updated on my situation and they encouraged people to write to me and send photos since I had suffered such memory loss.

I sat for a long time last night and read through each of those cards, with Hayden by my side. It was quite a cathartic experience, but also very emotional. I never really knew how sick I was in January 2003. I never fully understood what an impact my near-death had on my Mom and my then-fiance’, now husband, not to mention others who are close to me. Since I was the one fighting for my life and struggling to get my world back, my ability to realize the impact of my illness was a bit clouded. I was so determined to get well, I don’t think I gave any thought to what I was really going through. I certainly knew very little, if nothing, about Epilepsy and seizures which is what I was left with. My, how that has changed.

This might be a ‘way-out-in-left-field’ suggestion, but I think it was good to re-visit what got me to this point in my life. It was much more about reading the messages from people who care about me, reading their notes, encouraging me to learn as much as I could about Epilepsy and why and how I was going to live my life with this illness.

“…the delicate balance and complexity of the human body is truly amazing,” said one of my then-bosses, an engineer.

“…keeping you in our prayers. Make sure you take one day at a time and question each and every step those doctors take,” encouraged an old friend from college.

“…we’re all pulling for you big-time,” said one dear friend of my Mom’s.

“…how can you not be in my thoughts and prayers? You will beat this disease up in the years to come!” That was from one of my closest friends, who still to this day questions me via phone, text or email as to whether I’m taking care of myself and taking my meds on time!

Needless to say, that chest of cards and notes now has a new home, right on my desk in full view. I am going to make sure I look at it each and every moment I sit here, for inspiration and hope. As so many people pledge, Epilepsy won’t get the best of me, nor will it control my life. And, I have about 350 cards and notes to remind me each day of this promise!

I’ve been communicating with a ‘friend’, someone I’ve become close to via the web. Like so many of us, she and I connected because of Epilepsy. She reads Brainthunders and is someone who is adamant about keeping up with the latest research and information on Epilepsy. She has a daughter, college-aged, and she is tremendously concerned. For the sake of confidentiality, we’ll call her daughter ‘Lila’.

Lila has lived with Epilepsy for only about 7 years. I say ‘only’ because she wasn’t born with it, and like me…she hasn’t been as cognitively affected as many of those kids who were born with the condition and are living with daily seizures. She has seizures each day, about 5-10. She has also had surgery, so as her Mom put it…some of her learning skills have been snipped. Her math and science skills are lagging and in her Mom’s own words, “our experience has been that teachers do not recognize that she is having a seizure unless they are interacting with her when it starts. Sometimes she has hand or mouth motions that are indicators, but not always.” Lila wants to continue her education…specifically, she wants to go away to college. My friend’s question -  how can Lila plan to attend college, and is there a college program out there that caters to those who live with Epilepsy?

After Lila’s Mom and I talked, I did a lot of research for myself. It’s true, there are programs for students with ADHD and ADD, but those of us who live with Epilepsy and are affected cognitively, have memory issues or attention issues…what are our options? If we are looking for smaller class sizes and a good teacher-student ratio, where do we go? The Epilepsy Foundation has some information on how those with Epilepsy should not be discriminated against, but there is no information on where to look for a program.

So, this is an open question for all of you with college-aged kids, or kids who are approaching college-age. What are your options? Have you consulted with your neurologist(s) regarding this question? Do you know of any universities or small private colleges with programs? I know your answers might help Lila and also other teens who want to take this path.

Some would say I’m one of the lucky ones. I have an aura prior to my seizures.

An aura is described as ‘a distinctive feeling or some other warning sign when a seizure is coming’. For those of us who have auras, they can be so different, and that’s both good and bad. Bad because they are tough to study and localize, and good because doctors can firmly say that a seizure is on its way if you do have one. I’ve had people tell me they get the taste of metal in their mouth. Some people become incredibly irritable and downright cranky. For me, I begin to think everything and everyone is familiar. It’s that ‘been there, done that’ feeling, even though there’s nothing familiar about it. Technically, it’s a feeling of de’ja’ vu. I can be walking around our downtown area close to our home and every face looks like someone I knew from my past. I know then that I must either call my husband or my Mom, or at least sit down.

Researchers say as many as 65% of us who have Epilepsy have these ‘warning signs’. Neurologists might say this is good, but I’m beginning to question them. The last few ‘bad days’ I’ve experienced have been filled with auras, which of course has led to seizures. My question is…for those of us who experience auras, do they make us live in fear of having a seizure?

Photo courtesy: Flickr

No matter how extensive or complex your aura is, it’s still a warning that a seizure is coming. And, I guess that’s not so bad.

Granted there’s nothing we can do to prevent the auras, sort of like there’s nothing we can do to prevent the seizures. But still, every strange feeling I get…every wave of de’ja’ vu, I begin to panic rather than prepare. I decided last night, I must try to accept my auras and take them for what they are, a warning or a signal. I should probably feel lucky I have them so I can prepare myself and those around me.

Like most everything involved with having Epilepsy, this takes some time to get used to.

I always feel a sense of pride when someone I know speaks honestly and truthfully about living life with Epilepsy. Don’t we need much more of that?! My thanks this morning to Bob Fiore for his tireless work in raising awareness and promoting advocacy. You can read the article on his site, or on the Greenwich Times site. I think Bob would agree…the more we talk and inform, the more attention and understanding for Epilepsy.

I noticed some Facebook posts…people wanting more information on SUDEP. I think we all can agree that not enough attention is paid to seizure deaths. Check out this fantastic organization based in Chicago for lots of resources. And, you can learn what the Stanton family is doing to bring SUDEP out of the shadows. The Danny Did Foundation is also encouraging all of us to bring much more attention to Epilepsy and SUDEP. It’s so easy, just log on and send a note to the President, your Senators, Representatives–anyone who can make a difference…let them know how important research and funding is for Epilepsy.

Speaking up and speaking out CAN help. With 3 million people in the U.S. living with Epilepsy and nearly 50 million people around the world, we can stand up and be noticed!

Bob Fiore of Connecticut Epilepsy Advocate

Danny Stanton