Six Days and I haven’t completely recovered from my seizure. I am still sleeping most of the day because I simply
can’t stay awake. I am so tired. My body is a little sore. My brain is worn out. My pain levels are back to normal. My thinking skills have improved greatly. The aftermath feels a lot like the aftermath of a full blown migraine but it takes a little longer to recuperate. I haven’t had a seizure in almost 5 years so I didn’t remember it taking this long to feel better or sleeping this much. It makes me feel old.
People count the days, months, years since their last seizure. A month, 6 months, 1 year, years are landmarks worthy of celebration and parties. Epilepsy warriors and heroes are praised by doctors, family, friends, and random people. Its weird how something you have no control over becomes an accomplishment. But when you break that streak its devastating, especially if you had passed landmarks. What you knew would happen eventually just turned everything upside down. Your right back to square one.
My count is four days. My count started over November 22, 2017.
I was seizure free for four years, eleven months, and two weeks. The middle of January would have been five years. I had gone to almost daily seizures to none. A huge accomplishment. Uni and I would have had a feast, celebrated. Five years is a landmark. The accomplishment was gone in less then a minute.
An epileptics die from seizures and seizure related causes. It doesn’t matter what kind a person has or how it presents, it can be deadly. Brain damage, heart attack, an injury, and crappy timing can all result in death. And Unexpected Epileptic Death Syndrome is where a person can die after a seizure for no other apparent factors. An epileptic does not just worry because a seizure is around the corner, its because that seizure can kill.
I would be somewhere and wake up somewhere else a few times a week when I first presented. One day I had a neurology appointment and was waiting for my ride. He called and I was walking out of my dorm. The next moment there was a loud car horn and he was pulling me out from the middle of the road. I had wandered into the middle of a busy street and was almost hit by a car. I had lost about ten minutes. I don’t remember the walk to the parking lot, but my friend noticed I was quiet and was stumbling but didn’t think much of it. When he stopped yelling and realized what had happened he was scared and blamed himself.
Every time I wake up to a story or the realization that I almost died or could have died it is frightening. But it’s not something that I can dwell on. I’ve been blessed that I haven’t experienced any serious injuries and have narrowly dodged grave peril several times. All that can be done is to hope and pray we are just as lucky next time.
Your Favorite Martian Techno’s “Epileptic Techno” is awfully prejudice, hurtful, and harmful. I cannot post the video. If you are light sensitive do not go find it on YouTube. I accidentally clicked the link and then felt like I was dying. I read the lyrics and comments and was amazed. Lyrics
I have never seen a dance move that looks like an seizure. I watch a lot of music videos. One person chimed in to express how the video was not offensive, it is a joke about dancing and seizures. This begs a few questions. Is a video that purposely adds triggers offensive? Is a video that uses a cartoon character having a seizure as comedy offensive? Is the equating dancing oddly and having a seizure offensive? Yes, those are all offensive. They should not be normalized. If you want to tell a joke at my expense that is your right. Do not tell me its not offensive. It is my right to be offended. And if you got to say “I ain’t trying to disrespect epileptics,” your disrespecting somebody. If it isn’t an epileptic then maybe someone with turrets syndrome.
The song is alright, its my genre. The chorus is catchy and it has a funny cast of characters. There were a few epileptics in the comments who really enjoy it. A few who had seizures. There was one line I liked:
I felt my muscles expand and contract
I passed out on the dance floor laying on my back
Reality started fading, cutting in and out
It is the one moment I can relate to. Its the last moment of consciousnesses, the floor, and the first moments of regaining consciousness.
Go see the comments
True Story. This is a good description.
Go check out how his song sparked a conversation about epilepsy.
My relationship with the floor is the only thing that I know won’t change with time. Like an old friend, our relationship won’t fade. When I fall, the floor will catch me.
When I was a drama student I had to learn to fall. Stretch, relax, breath, and now fall. Up and do it again. And again. And again. Until it doesn’t hurt. There is an art to falling. The key is to commit. Commit: do not to try to catch yourself. The floor will catch you. Now you can learn to direct your fall. Fall safely, the floor will catch you. After you’ve learned how to fall you put the fall into the lines. And the stage floor will catch you.
After I learned how to fall I put it into practice. If I started to fall I just fell. I was less likely to get injured if I committed to the fall. When my body changed I lost the ability to fall safely. I don’t have the control over my muscles, I can’t make them relax. But, the floor is still there to catch me.
I knew I had a solid bond with the floor a few weeks after I started having pretty regular seizures. I woke on the floor. I knew I had just had a seizure by the looks on peoples faces. I said, “hello floor.” I couldn’t ask “why am I here?” I knew. I couldn’t ask “where am I?” I could tell by looking around. Then I looked at the scared faces and said “I’m alright.” The floor was there to catch me.
The floor is always there to catch me.
The floor is always there to welcome me back.
What does your ribbon look like? We usually see it crafted into a butterfly or given some type of bling. I thought about how the ribbon is more then an awareness object. When we look at the ribbon we think of our loss, struggles, pain, and brokenness. But we also get a sense of togetherness, courage, and strength. It turns a survivor into a warrior. The most important thing about the awareness ribbon is that it is a symbol of hope.
Hope. Romans 8:24-25
“24 For in this hope (of everlasting life) we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? 25 But if we hope for what we do not yet have, we wait for it patiently.”
I cannot hope to be healed if I’m already healed. I can’t hope for a cure if we have one. I can’t hope to be without pain if I am pain free. Hope inspires people. Seeing hope in others is inspiring. We wouldn’t have any epileptic medicine if hope hadn’t inspired someone. Once we have a cure to epilepsy and migraines, we will hope for an affordable cure. We need hope. To keep hope alive we need patience. We learn patience and we can encourage each other to never give up.
Why did I draw it that way? I am a Christian.
I believe that I should take all my worries and pains to Christ, as the saying goes “take it to the cross.” That is why I started the ribbon faded and torn on the right. I believe Christ will take everything and make it new again. That is why as the ribbon falls to the front of the cross the color changes to just lavender and then ends is a smooth cut. The ribbon is not tied like the traditional ribbon so that it could blow away, Christ is capable of healing-illness and brokenness disappears. All things are possible through Him.
I went in for a general check up at the dentist today. My Mom went back with me because I had a migraine. The mix is delightful. So we get through the exam, the doctors were great and understanding. Then comes the bad news. The mile long list of what is wrong with my mouth.
And then, “Are you sure your not feeling any dental pain?”. We assured her that I did not feel any dental pain, usually only feel the head pain. We explained to her that I my tooth has some strong competition. “Well,” says the dental assistant, “this tooth right here should be causing considerable pain.” Crap, so is it something we need to take care of ASAP? No! No, its not. For a few reasons. The nerve in that tooth is reacting to the broken tooth abnormally. It is not infected. And mostly its because I don’t feel the pain. So on that list, its second to last. Perk of having an abnormal brain.
The one thing that sucks is that because of my neurological issues the doctor is scheduling short visits. He doesn’t want me there for more then an hour at a time because of all the triggers in exam rooms. So I’m going to be going to the dentist a lot.
Epilepsy complicates all aspects of dental health.
- Medication: Some medication cause tooth decay, dry mouth, or gum issues. The side effects of medication can include infection, dry mouth, overgrown gums, delayed healing, bleeding gums, and post-op bleeding.
- Triggers: The lights, loud noise, or the procedure itself could cause a seizure.
- A seizure could break a tooth
- Can cause teeth to grow out of ailment
- Vomiting: The acid eats away the protective coating on your teeth. If you do not naturalize it, like with baking soda, it is very bad. The worse thing you can do is brush your teeth or sleeping before rinsing out your mouth.
- You can crack your jaw from the fall
- The nerves in your teeth could react to infection and breaks abnormally
An epileptic has to make sure their dentist knows that you have epilepsy and all medications. The dentist also has to know how to handle a seizure so that he/she can make a plan.
Regular dental check ups is recommended. Also being diligent about daily dental care.
My gums bleed and I get infections easily. I also have a hard time controling how hard I brush my teeth. This is because my muscles still jerk and I get tremors in my hands. One time I was flossing when suddenly my hand went flying. The jerk broke my tooth. I broke my tooth while flossing. I was too embarrassed to tell the dentist what happened.
I’ve looked up “brain fog” and its description is a bit different then what I have experienced in relation to epilepsy and migraine. The symptoms I experience included:
- troubles thinking
- short term memory issues
- No concentration or focus
- feeling like I’m outside of what is happening
- unable to process what is going on around me
- problems thinking of words
- problems remembering what words mean
- problem solving
- can’t remember what I’m doing
- mobility issues
- Problems going place to place. Like I have trouble walking from my room to the kitchen because I don’t remember where the kitchen is or what the word kitchen means. What is that? Why should I go there? How do I get there?
- confusion and frustration
Brain fog is a symptom that can be a warning sign and is a symptom experienced while recovering from the seizure. It can last a long time or just a few minutes. I usually experience brain fog for long periods. It is frustrating, especially when the people around me are not understanding. Its especially hard when it happens in public places. There is nowhere to hide and difficulties communicating what is happening. Which is problematic more so if brain fog is a warning sign. There are symptoms a lot worse and more dangerous then brain fog. I think brain fog is more annoying and frustrating symptoms of seizures and migraine. It is one symptom that makes it hard to pass interviews and keep managers happy. But the most important thing about brain fog is that it is a single that there is something amiss with my neurons.