EPILEPSY INTERVIEWS! 

 

Welcome to the beginning of a series of interviews with fellow epilepsy warriors. Today our guest is a dear friend, Lindsie, and from here on, I’ll refer to us just as “L” and “Z” for Zanna.  Lindsie is a great friend, a mom, a crafty lady, and a cook with the fantastic http://momsbistro.net

Name and age: Lindsie Zagiba, age 34

Zanna: How old were you at diagnosis? Tell me about how you first became aware of your seizures.

Lindsie:  I was 26 when I was diagnosed. When I was 16 I had a couple of odd episodes, my parents took me to the hospital and the docs said it was all stress, non-epileptic. They told me to do “cognitive therapy” because I was stressed out. At 16 I’m not sure what I was stressed about, but that’s what I was told.

I had one in 2012, and the doc thought it was temporal lobe epilepsy. Then we moved and I didn’t have any issues till I had a seizure at work, in the preschool kitchen. I was prepping the kids’ food and then I woke up in the hospital. After that one it became more of a reality. I started using marijuana but that wasn’t enough, so I started on traditional drugs. I was on Keppra for awhile- such horrible side effects! It worked for seizures, but made me angry all the time, frustrated and short-tempered. I also felt super jittery.

 

Zanna: I can relate a bit, Keppra made me feel depressed and like I was under a dark cloud.

Clarify for us, what is your type of epilepsy? How would you describe your seizures?

Lindise:  Temporal and frontal lobe origin. Mine are the kind you see on TV- the tonic clonic ones that affect my whole body.

 

Z: Give us a little more insight about how the seizure feels and the post-ictal sensation. (Post-ictal: the period of time immediately following a seizure.)

L: Everything just feels kind of overcast and hazy, just not right somehow. And then I don’t remember anything, and I lose bladder control, and wake up just so achy and tight and throbbing headache. And I usually bite my tongue or cheek and that really hurts.

Z: How did you respond to your diagnosis?  What was your initial reaction?

L:  I went through the denial, thinking I could handle it myself, and then thought, I’m not dealing with this!

When I couldn’t drive anymore, the anger really hit. There went my independence! I hated to put a burden on other people asking for rides, that fueled the fire of anger even more.

 

Z: What has helped “quench” some of that angry fire? Or helped you cope with epilepsy?

L: Getting some exercise helps for sure, getting my blood flowing. Getting into my hobbies and cooking a lot is something else that helped. I love doing creative things too, my crafts and crochet, and putting my energy elsewhere like volunteering. It puts things into perspective.

Z: What was your scariest or strangest seizure experience?

L: The one I had when I was driving when the kids were with me. Anthony (her son, who was 8) rescued me by pulling the emergency brake when he realized what was happening. I’ve never been so terrified or relieved. (Side note: Amazingly, nobody was seriously hurt in this accident.)

 

Z: Tell me about your medication journey…what worked or didn’t, side effects, aggravating experiences, insurance troubles? And what has been the most frustrating about the drugs?

L: That Keppra rage was my biggest problem. And just the runaround of trying to find what works, having some meds work for awhile and suddenly not work anymore.

 

Z: Have any alternative therapies been effective for you? Tell me about this.

L: In that postical time. marijuana has been helpful for me. Or when I feel a little “off”, it helps a lot on those days too, kind of a preventative.

And DJ (her awesome chiropractor hubby) can adjust me, which helps my body, but that doesn’t stop seizures.

 

Z: Along the same lines… what has your experience been with neurologists? And how has this journey changed your view of medical care for people with long-term conditions?

L: One of the worst parts of it is the doctors saying “Well, we could try this…” and they don’t sound confident at all about whether it’ll work.  

 

Z: That’s the mystery, right? No matter how a great doc is, they’re making an educated guess. 

L: Yes, exactly! And docs and staff need to be united, work as a team.  Like with general checkups, look at the whole picture. If I go to a primary doc and they don’t even check my medical records, don’t consider my seizures, I want to say, get a grip! At one point the meds I was on counteracted the birth control I was on. So I got pregnant, that’s how we had our second son. Some doctors have the personality of a wet toilet seat, I swear they shouldn’t be practicing.

 

Z: What would you say is the biggest life adjustment you’ve had to make? What is your biggest challenge in living with epilepsy?

L: Not being able to drive is a big one. The worry that my oldest son has, I hate that. He wants to be a protector, to look out for me. (He’s 11 now.) I hate the fact that he’s seen numerous seizures.

 

Z: How has epilepsy affected your family life? your marriage?

L: We talked about the kid thing. With D.J. and me, it’s strengthened us, seeing how much he cares for me through all of this. The love that I receive; I appreciate him more, and it goes both ways.

 

Z: I think our husbands want to protect us, they worry, we hate it but we can’t help that. And we see that our men are solid… and it’s for better or worse!

L: Right, we’d do the same for them. This is what makes you realize what marital love really means.

 

Z: What do you wish the general public understood about epilepsy?

L: It’s not what people perceive it to be. It’s not just flopping around on the floor. There are seizure triggers, and they’re unique for each of us. Don’t make assumptions! Someone might be triggered by flashing lights, but I’m not. And the daily struggle too, it’s the sleep issues, the other triggers, the worrying, the “what-ifs”.

 

Z: Have you experienced any surprising or unexpected gifts because of your diagnosis?

L: Finding you guys! Because we understand each other and made an instant bond. Medically, for me finding out I had a Chiari malformation, which needed to be addressed. I just had surgery, and that should improve some of the issues I was having.

Z: Many thanks for your honest conversation! We will have more of these talks with fellow warriors in the days to come. Check out Lindsie’s great cooking blog and share it with a friend!

 

For more information about epilepsy, please see http://www.epilepsy.com or http://chelseahutchisonfoundation.org

For more info on Chiari malformation, see http://rarediseases.org/rare-diseases/chiari-malformations