Interview with Epilepsy Advocates: Brett Meath

Q: Hello Brett! Can you tell us a little about yourself! 

      “I guess I'll start by saying I'm 33. I work part time for a great company in their warehouse. I’m one of 7 children with a great mom and dad! I am a big sports fan - The Cubs, Twins, Timberwolves, and Packers. I’m also a big movie buff… And I love to fish!!!”

Q: Can you tell us a little bit about "Brett's Epilepsy"? What are your goals to help others?

      “I started Brett Epilepsy (www.bretthasepilepsy.com ) about 2 years ago, in which I wanted to share my story about living with seizures. I wanted to try and give them a first-hand perspective about what it is like to be living with Epilepsy. I also wanted to teach people the truth about Seizures and what they really are.

      As my first year went by, I started doing weekly/monthly videos included throughout my blog. I have done interviews with Pro-Athletes and just normal people who have seizures as well. I am in the middle stages of starting to sell some epilepsy jewelry for my site as well.”

Q: That’s wonderful, Brett! I’m just curious; Which lobes of the brain are responsible for your seizures? Is there a specific condition causing this?

       “My seizures start from multiple places in the brain so they’re intractable. That is one frustrating part… Not being able to know where it difficult.”

Q: What types of seizures do you have?

        “I have Simple Partial Seizures. When I am about to have one, I do get an aura (Warning sign) that a seizure is about to start which is great! During that aura time, I try to brace myself for the seizure. I try to calm my nerves down and find a place to sit down. I am conscious during these times.

       I would say they last 15 seconds but it feels a lot longer than that… As the seizures begin, I get a tingling sensation in my body. My left arm jerks a little but they are not that noticeable. I stare off to the left side. I also get a “Déjà vu” feeling. After the seizure ends I get tired so I lay down for an hour or two. If the seizure was not that strong I can go back to whatever I was doing  prior - but that’s not very often. To be fully healthy again, it take a day or two.”

Q: Wow! Those are very similar to a type of seizure I have been having since brain surgery. This is the first time I have met someone having such a similar type! How often do you have these seizures? Daily, weekly, monthly, yearly? 

  
     “I have about 5 or 6 each month, as of right now. Simple Parcel seizures also. I get all day auras most days. I didn't really realize that just having auras all day can sometime be just as bad as having a seizure because of the worrisome. I worry that a seizure could come at any time. I’m actually even starting to have auras at night and I have trouble sleeping.”

Q: I completely get what you’re going through. I used to have hundreds of auras a day, and they can be so stressful. But you are such a strong person! What medications or forms of treatment have you tried so far? Which do you feel have been the best for you personally?

       “As of right now, I take Keppra XR (2000 mg) , “Lamictal (500 mg), Diazapam (when need be) and Zoloft . I've probably tries 15+ different Epilepsy medications so far. I do have a VNS implanted in my chest. It doesn't work that well for stopping my seizures, personally. But it seems to helps my recovery time. I have and will continue to look for surgery studies that I can try to get into. That’s one nice thing about my doctor. He likes to be aggressive toward my Epilepsy. He is ready to end it! That’s why I've been with him for the last 15 years.”

Q: It’s so great to have an amazing doctor. I am so glad that you have found such a wonderful one! How old were you when you had that “first seizure”? Did you have any idea of it, such as auras, weird feelings, etc.?

       “I was diagnosed  with Epilepsy at the age of 8 years old. I was having seizures before that. But because they were really unnoticeable, I didn’t know what was happening. I thought it was just part of normal life and didn’t know any better! 

       My dad saw my very first one. One day I was in the bathroom at home and my dad just happened to walk on by and noticed that little jerking of my muscles. It was going on in my left hand and scared the crap out of him!!! So that’s when I went to my doctor of internal medicine and he put me on medications for Epilepsy patients.

       However, he hardly knew what seizures were. It felt like he was putting me on the most common drug – Tegretol - for my seizures. He really didn’t know exactly what was going on. Trying to decide what meds to put a person with Epilepsy on. Thank God my parents called the Epilepsy Foundation of MN and they hooked me up with an Epilepsy Group. So they finally put me in the hospital for a week to monitor my seizures activity and confirm that I had Epilepsy.  I look back on it now and I just have to laugh. That’s all you can do!”

Q: It’s always good to laugh! Keeps things positive! With your current treatment, do you feel that the seizures are improving or getting worse?

       “I would have to say these past 6 or 7 months have been terrible. I’ve been having 5-6 seizures a month and trying multiple new medications. All have failed or major side effect such as double vision , dizziness… And even a urinary tract infection! So we decided to stop trying new meds for now and as new Epilepsy drugs or treatments come out in the near future, I will give them a shot. I'm just taking it day by day and trying to get through it all until I see my doctor in November.”

Q: I completely understand how you feel. Sometimes taking a break is the best thing to do. Since you decided to wait, have you found any new treatments that you are looking into trying in the future?

       “I had a VNS put in, as mentioned, about 3 years ago. I looked into the RNS surgery that’s going to the FDA as of right now, but my doc said “Your best option is to have deep brain stimulation surgery if you want to go that way in the future.” We are also looking into new surgery trials that maybe are going on.”

Q: I just started thinking of the RNS surgery myself. There are many tough choices on picking surgeries. I am truly glad you have a doctor giving you options. How has your city/community handled the public’s seizures?

       “We have the Epilepsy Foundation of MN nearby, and Its great. They have support group, events, and they go in schools and teach people about Epilepsy. We are lucky in MN to have Epilepsy awareness around the state - so it’s just great. I have started recently getting involved with them by volunteering at some of the events.”

Q: How do your loved ones help you through the hard times? Do you feel it is important to have loved ones close to you at all times?

       “I have a great support system with my loved ones. If I have any problems I can go to a family member and talk to them about it with no problem. I also have a psychologist that I can go to if I have stuff I need to talk to her about.

       I really do think it’s important to have family or friends that you can go to and talk to. People you trust and can talk to them about Epilepsy-related stuff or even just normal stuff as well. I will say that going to a psychologist does help out a lot too. Overall, though, I would say I talk to my parents the most when it comes to Epilepsy topics.”

Q: Parents are wonderful people to vent to. What are some things you wish loved ones understood better.

       “For one, every person with Epilepsy is different, so don't think everything is the same.

        Two, that recovery time is different for people and different things can cause a seizures. Such as lack of sleep, lights, tiredness, amongst many other things.

        Three, I have taught my family a lot of things about Epilepsy that they didn't know before and tell them if they have any questions about seizure, they shouldn’t be so afraid to come to me and ask.”

Q: I agree with all three of those things, completely. Back to the topic of treatment - Are you satisfied with your current doctors?

       “My doctors have been great. I've only had 2 Epiletologists in my lifetime, and my current one is great. I've been with the current doctor for 12 years or so. I actually switch groups to stay with my current doctor as he switches them. We are always on the same page and we think so alike.”

Q: That is great news. Epileptologists are amazingly talented and loving doctors. You just have to find that “one” that fits us perfectly. So glad that you have found yours like I have as well. If you could give 3 tips to help others who suffer similarly to you, what would the tips be?

1.      Stay positive even though that can be hard to do at times.

2.      Find a Doctor that you truly trust.

3.      Have a good Support System 

Q: Those are 3 wonderful tips and I agree with them 100%! Such important things to remember! Any last words you would like to share? 

       "Like I said before - Stay positive, educate others, live life to the fullest, and don't ever let Epilepsy stop you."

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Well, Brett, It has been a pleasure to interview you. I am so proud of all of your work and what an amazing advocate you are for others. I pray that God blesses you with the right treatment to try in the future – but regardless of that, I can see that He has definitely blessed you with amazing strength as of right now. Seizures can never take you down, because Epilepsy has made you as strong as you are today. Keep doing what you do, and never stop being such a rockin’ advocate! Applause to you!!!

I am sure everybody enjoyed the interview with Brett. Please be sure to visit his blog website below, and leave a comment with your thoughts on his story or any words you’d like to say. Please give him a huge THANK YOU for sharing his story with us, too!

Click HERE to visit Brett's website!