The Bads and Goods of Epilepsy.

Featuring Shannon Boisjolie @Shady.Pines.MA_

December 20, 2021

Today, I will be talking about the bads and goods of epilepsy with Shannon Boisjolie.

Erik: “Hi Shannon thanks for doing this with me. I am going to begin by asking you, when did epilepsy begin for you; how old you were, when you were diagnosed, thoughts, memories, reactions etc.?

Shannon: “My Epilepsy started when I was 13 years old, it happened out of nowhere. I had my first seizure while getting ready for school. My mom found me on the floor. She is a registered nurse, so she knew what had happened by my state. I was taken to the hospital and from there I had tests done, saw my pediatrician and a neurologist. They couldn’t find any causes for my seizures. I was on Tegratol at first. I only had seizures every few years at first. Then in my early twenties they began to happen often. I would have up to 3 a month. I didn’t drive, and they switched me to Depakote and added Topamax, this went on until I was about 28. Then I was switched to Keppra and Topamax. I was also living in California at the time and so I started smoking Marijuana with my doctors consent. Within a few months my seizures slowed down and I had my last one in May of 2012.

Erik: “Do you think the marijuana is what helped you?”

Shannon: “I believe the Keppra and marijuana did. However a year ago in November everything changed….”

Erik: “In what way did it change?”

Shannon: “I had a very bad seizure at work…. Grand Mal. A year ago this past November, I busted my face and teeth, and ever since, I have bad muscle spasms, auras all the time, I believe petit mals, but I am never sure. I stopped driving again, and I recently stopped work because I can’t be a vet tech with as shaky and dizzy as I have become and since I live in Texas I can’t smoke either.”

Erik: “So you're currently not smoking and do you think that is why they're back?

Shannon: “I believe it has a part of it. But stress can take a toll too.”

Erik: “I feel Epilepsy can definitely cause more stress and depression too. When I could not drive, it was horrible missing hangouts with friends. I had amazing friends that would pick me up, but it was just not the same when you had to ask if they’d pick you up or when you had your parents drive you to them.”

Shannon: “Yes. I can’t even go run simple errands and after 8 years of being able to do so, it’s very hard. My mommy used to have to drop me off at work when I was the store manager.”

Erik: “Work was totally fine, my parents, along with my grandmother and brother, drove me to and from mine for almost a year, but it was just hanging out with friends that wasn't the same.”

Shannon: “It was embarrassing for me because I felt it hurt my authority at work. I was already a young manager. It was already hard enough; I’m a hard person. 

Erik: “You shouldn't worry about it at work, because you are already hired and being hired then having a medical issue after words, is not a reason. Do not let that scare you.

Shannon “Walls up. I don’t let people hurt me. Not anymore. So I tried to keep my epilepsy to myself. I felt it made me vulnerable. I still do. I had it used against me in high school after I gave everyone a show in the parking lot by having one outside my friends car and getting taken away in the ambulance. I have a bad habit of not breathing after a seizure”

Erik: “One of my worst ones was right on the main road; one of the busiest spots in my town….. mine was pretty public. But, if friends find it funny, they are not a friend I lost people after being diagnosed but I kept and gained some too which shows they're the ones that are very supportive and have the biggest heart.”

Shannon: “I definitely know who is a true friend. My depression also helped weed out friends. I was told they were tired of me always being sick or upset.”

Erik: “A close friend of mine became a Registered Nurse while I was going through this and he knows a lot about it and is supportive and understanding. He even drove me, picked me up, and we hung out while I had no license.

Shannon: “That’s so great. To me, I think Keppra is awful. It makes me angry, tired, and well it has the nickname keprage, but it helped stop my seizures”

Erik: “Keppra is definitely a big help to me too! When I was put on it, that’s when my seizures stopped (knock on wood). What are the bads of epilepsy to you?”

Shannon: “The bads to me? Peoples absolute ignorance, the medication side effects that never go away. The twitching, auras, dizziness. The other day my left hand literally started moving and twitching and I couldn’t stop it. It was a scary feeling. I thought I was having a stroke. My mom told me I need to see my neurologist again, something is going on. It scares me. I’m older now. So….. what could be changing?”

Erik: “Well everyday any day things can change so I would agree with your mom and mention it.”

Shannon: “Exactly!! And my neurologist is good.”

Erik: “My first two neurologist were the worst. I told my mom "we are not going back to these two". I go to this new lady now and she is literally a hero. Her office is only 30 minutes away from me. It was like a dream I found this lady. I got into her office by being recommended from a long time family friend.”

Shannon: “Other bads would be things I can’t do or rides I can’t go on. There is a lot I can’t do when I think about it. Also I’m terrified of being alone. I have stopped breathing several times after a seizure. I won’t be alone most times and I have someone right near by when I take a shower. I’ve been hurt while showering. So it’s a pain in the butt, especially for people in my life. I feel guilty and a huge huge burden.

Erik: “Don't feel that way…. you and I are just people that need a second hand. It is frightening to do some stuff like driving and being alone, but it’s something we want to do do and have to do and epilepsy is not going to stop us hahahaha.”

Shannon: “I try so hard to not let it. But it really does scare me. Especially now that I have my daughter. When it was just me, I was like, ROCK ON!!! Live life!! But now i have her and I’m more careful.”

Erik: “Yeah, having a child, I understand that, but having your husband there too is amazing. he's there to help and support you and drive you.”

Shannon: “Yeah he is amazing and helpful. I just hope all the time that he doesn’t hold resentment for me because of everything he has to do and because of everything I go through medically. I have had to have my teeth redone 3x already.

Erik: “During one of my seizures I bit down so hard I cracked one in the way back and a tooth never hurt so bad…. I was in the worst pain.”

Shannon: “Yup. It’s the worst. And I HATE the dentist.”

Erik: “What are your goods in Epilepsy?”

Shannon: Honestly the only goods are that I have made a lot of good friends online who understand what I am going through and how I actually feel. That I have been able to help people who have been newly diagnosed and are terrified. I have spoken to a lot of people who put up that they were just diagnosed and don’t know what to do, and they are having seizures and need support, 

Or they have just started a medication I have or I am taking and I have told them my experience. Being part of a community and helping others. Especially when someone has a terrible diagnosis and they have 20 or more a day and just need to talk.”

Erik: “I feel the same way. You meet new people that feel the exact same way and are going through the same thing as you is nice.”

Shannon: “I used to be on twitter too, but people are nuts on there. I was talking to other epilepsy people there too.

Erik: “I've met amazing supporters through Epilepsy Foundation of America (EFA). It just feels so good talking to people that are exactly like you and know what you're going through and understand you.

Shannon: “I love talking to others about it. It also helps me as it helps them. Especially when it feels like you are free and then it sneaks back up. That’s how it felt for me, even though I knew I wasn’t “cured” or it was gone for good. I just didn’t expect it to pop out of nowhere and then continue on. With new symptoms…… It’s scary.

Erik: “That is a huge fear, that it can pop up out of no where, but it does no good to worry. You just have to think positive and remember that you are way stronger than epilepsy.

Shannon: “That’s what I try to do everyday. I can’t stay home or wrap myself in bubble wrap.”

Erik: “Exactly!”

Shannon: “That’s pretty much the only goods. Epilepsy has cost me a lot over the years. I wish I had more kind things to say towards it. I have learned a lot because of it, made good friends because of it, but lost A LOT, because of it…… I also seem to have a weird curse since 2018.”

Erik: “Losing friends sucks 100%, but them leaving due to your diagnoses shows they’re not the right ones.”

Shannon: “Well I’m really glad that you asked me to do this. I’m glad to help and it’s nice to talk about it.”

Erik: “It definitely is. Thank you so much for doing this it means so much!

Shannon: “You are very welcome and thank you!”

If you have any further questions about epilepsy or need someone to talk to, you can contact Shannon on Instagram, @Shady.Pines.MA_

How long did it take you to not be scared to let people know that you have Epilepsy?

Featuring: Melissa Lee Ferro @_melisslee

December 5, 2021

Melissa: “It all began when I was 12 years old, but only my family knew about it; parents, grandparents, and cousins. All the way up until my junior year of high school, I tried to be normal and have no one know about my epilepsy until I became homeschooled.”

Erik: “So none of your classmates, teachers, and friends knew about you having epilepsy or the reason why you were home schooled?”

Melissa: “No, I explained to my school and friends that that was the reason in my junior year of high school.”

Erik: “Did it bring any fear or worry to you when you told all of them.”

Melissa: “No, they all looked at me normal.”

Erik: “That’s awesome! As they should.”

Melissa: “They all came to my graduation party and I loved going to concerts that summer too. All of my doctors asked me about the bright flashing lights, but they didn't bother me.”

Erik: “That’s great that they do not cause any bad reactions. I actually went to a big rock concert back in September of this year and I was a little bit nervous about all of the lights, but thankfully it was one of the best nights of my life. I brought sunglasses in case the lights were too bright.”

Melissa: “I have no fear in going to concerts.”

Erik: “I don’t either now that I have been to one since I was diagnosed.”

Melissa: “I lost some of my closest friends when I let this out to them. It’s so immature and ridiculous of them to hurt me, but I’m over them and I have a better life now.”

Erik: “If they don’t understand you, that shows that they’re not the right friends.”

Erik: “What is one thing you would like everyone to know about the world knowing that you have epilepsy?”

Melissa: “Just go with the flow, be positive, it won’t go away go, take your meds, and it will stay in your life and be safe.”

If you have any further questions about epilepsy or going public about having epilepsy, you can contact Melissa on Instagram @_melisslee