Encountering Epilepsy

1. One in 26 people in the United States develops epilepsy at some point in their life.

2. Epilepsy does not discriminate: that is, anyone can develop it, no matter the age, gender, or any other potential factor.

3. It is often officially diagnosed using a machine called an electroencephalogram (or EEG). EEGs are used to measure brain waves and check for abnormalities.

4. Seizures are categorized into two main categories: generalized and focal. Generalized seizures involve the entire brain, whereas focal seizures have a specific area where they stay.

5. After an epilepsy diagnosis is given, going to the hospital is not required every time. However, there are times when it should be done, including if a severe injury occurs, if two or more seizures happen in a row, or if it lasts five or more minutes (as a rule of thumb).

6. There are many potential causes, including but not limited to, genetics, infections, and brain abnormalities.

7. While uncommon, death during a seizure is possible. It is called SUDEP, standing for sudden unexpected death in epilepsy. It occurs to about one percent of people diagnosed with epilepsy.

8. Several things can trigger a seizure to occur, especially with people diagnosed with epilepsy. Some of the most common are missed medication, heat, and dehydration.

9. A healthy diet and exercise can improve the quantity of seizures, as it is less likely for a person to have a seizure while exercising, but it is still possible.

10. Another dangerous thing that may happen during a seizure is status epilepticus. This is when seizure activity continues for more than five minutes or they happen one after another without consciousness in between them.

11. There is no cure for epilepsy. There are, however, several different types of treatments. These include medicine, different diets (ketogenic, Atkins, and modified of both of the previous listed), and even different types of surgery. Surgeries include the VNS implant, RNS implant, and sometimes even a lobotomy (severing of connections in the brain) or lobectomy (removal of part of the brain).

12. Not all seizures appear as shaking while being unconscious. Some look like daydreaming or doing weird things while completely unaware.

13. Finding the right treatment plan is very difficult for most people, as there are side effects to everything. Some of the harshest side effects include mood instability and what is known as "brain fog," where you may struggle with memory and recalling stuff even in the short term.

14. While legal in most, if not all, states, medical marijuana is not helpful to everyone. It is most helpful in patients with a rare form of epilepsy known as Lennox-Gastaut Syndrome.

15. Just because someone has a single seizure does not mean they have, or will have, epilepsy.

Now I want to share my journey with epilepsy...

At 13, I had a seizure at my friend's house. I woke up in the hospital, confused as to why I was there. Just a week later I had my second seizure. I was told that day that I have epilepsy. I had no idea what epilepsy even is. About a week and a half later, I saw a neurologist and was immediately put on an infamous anti-seizure medication. It is well-known for causing mood instability. However, I went seizure free for nearly five months. I switched to a different medicine, hoping for less side effects with the same seizure control. I didn't have any effects until I was on a high dose. My seizures became predictable, I was having them every three and a half weeks. I was soon switched to a new medicine but it worsened my memory and did nothing for my seizures. I have been on the same regimen since I was 16, having some side effects but more seizure control, going 4-6 weeks between them. When I was 18, I had a VNS implant procedure done. The only side effect of that, which I experience, is my voice changing when it fires every 1.8 minutes.

Resources for the facts at the top:

Empowering People's Independence

mayoclinic.org

webmd.com

Thank you for reading and please feel free to share my story and this information.