Unexplained Seizures

Do you know anyone in your life who has had unexplained seizures? Have you experienced a seizure personally? Perhaps you know someone who was diagnosed with epilepsy. Even for people with a diagnoses, I would be hesitant. Sometimes doctors seem to give a diagnosis even when there is no data to back it up.

Disclaimer: I am not a medical professional. I am not looking to diagnose or tell anyone what they should do with their treatment. I only want to share my personal experience. If this sounds similar to you, your friend’s experience, or your family member’s experience, maybe speak to a doctor about it.

So I was a wee 14 year old. I started high school. Not a month went by and I had my first seizure. We had just ran a few laps around a roundabout in the blazing heat, and went back inside the gym to sit and listen to the instructors. The boys left the gym to go to the bubble and the girls stayed inside. We all stood up and started to jog around the gym as told. It hadn’t even been 10 seconds and my vision just faded. My brain didn’t have any time to process what was happening. I woke up to paramedics asking me questions. What a scary thing. We thought that maybe I had a seizure because of the temperature changes my body had to handle. Extreme heat and then the coldness in a gym. I also hadn’t eaten much for lunch.

The second happened around exactly a year later I believe. Maybe it was 11 months. So I was a sophomore in high school now. I barely remember this one. I was in bed watching, ironically, a video about the brain. I loved science. I suddenly woke up to my worried parents. I had no idea I even blacked out or “fell asleep”. I had no warning.

This is where it gets interesting. After after two seizures, a doctor should check you out. It takes at least two seizures before they can diagnose you with epilepsy. So off to the doctor we went. I am not completely sure when I first went to the doctor. If it was after only the first two seizures or if it was during my junior year. Anyways, they did every scan they could imagine and found nothing. So what does my doctor do? He tells me it must be that I am depressed and stressed and that causes my seizures. Let’s keep in mind that he did no mental evaluation whatsoever. This was decided during a short doctor’s visit. I didn’t believe it at first. My instinct completely thought he was wrong. However, I knew that people with issues sometimes don’t realize they have issues. I mean, I knew I wasn’t in the best mood and I did feel anxious a lot. Like a lot. But something told me it wasn’t the cure. My parents seemed to think this might be the cause though. So then I started to feel like I was crazy. I then went to school wondering what things might “make me too stressed”. I started dropping stress out of my life due to fear. I will get into this more with junior year and later. (Added note: I initially thought that these seizures caused my bad emotional state. I didn't think my emotional state caused my seizures.)

Junior year. What an interesting one. My parents couldn’t afford the high school I was attending, so I went to a public school. I actually liked it. If I had a few friends, I would have been fine there. I started taking birth control pills this year. I ended up having a seizure in November. Then another one in December. I didn’t have any warnings with those. I fell flat on my face in November in my kitchen. My abs and nose were sore. In December, I was in the middle of getting dressed. And then I had a final one in January. The one in January was real “fun”. I was in my accounting class. I felt really sleepy suddenly, so I went to put my head down on my book. And tada! I woke up in a nurse’s office that I didn’t even know existed. Like I figured they had one, but still had no idea where it was. I hit my head apparently when I fell. That was the last time I was in that class. If someone named Mark remembers a girl who randomly had a seizure in your accounting class, message me or something. You seemed awesome. Sorry I was so awkward when you saw me in the store a few months later. I should have gotten your number. My mom just kept going on about eating organic. How embarrassing.

Anywayssssssss. My uncle paid for the tuition of the expensive high school. They were all convinced that I was too stressed out in the new school, so I just agreed to go back to the old one. What’s funny is that I think it was actually a worse school. I also dropped a “best friend since 5th grade”. We had had issues in the past and they just kept getting worse to me. Nothing was funny with her anymore. I was over it. So I dropped her and the whole set of friends connected to her. I got a few different friends that were a lot better. I was taking easy classes. I had been since sophomore year. I tried a harder English class in sophomore year, but the atmosphere already stressed me out. Which made me freak out that I would end up having a seizure. People probably thought I was just lazy or dumb. I mean, I even thought I was at that point because I couldn’t seem to handle anything.

Senior year. Yay! I had no episodes. So that must mean it was stress and I solved it.

Hah, no. Started college and had a weird....event happen to me. I don’t know what else to call it. I was meeting my business professors during this orientation thing. While I was talking to one of them, my vision started to get darker. And darker. Until I almost lost it completely. Of course there were no chairs, so I just sat on the floor while saying, “Hey, I’m sorry. I need to sit down. I think I might faint.” The professor said he had no idea I was having any issues. He seemed so concerned. Then he starting asking things. I mentioned that my doctor said I have problems because of my level of stress. I remember him asking how I was able to get through high school. Guess what? That made me cry because that expensive high school was so much like a hell. There I was. Sitting on the floor of a professional meeting area in professional business attire...crying. I had to go home. My hearing had gone away 50% in my left ear and almost 100% in my right. My face and legs were tingling. It was bad. My hearing came back and tingling stopped eventually. I dropped all of my classes except for a math course that semester. Out of fear of being stressed. In February, I was diagnosed with syncope (basically means fainting). I was told to eat more salt (which I thought I had plenty) and drink more fluids (when I could already drink a gallon a day probably). I was told I would “grow out of these issues”.

This next event was when I was still a freshmen in college. It was April now. I just left a fun class. I started walking down stairs and it was like my brain just wiped out everything. I had no idea who I was. I had no idea what I was doing, where I was, or where I was going. My only thought was to just start going back up the stairs and go back inside and wait to know what to do. I woke up in an ambulance. I was a bit bloody, but could you imagine how bad it would have been if I hadn’t turned around on the stairs? I got to fall up stairs instead of down them. I am thankful for that. Now I had always wondered what could be causing this. I had wondered about my hormones before. I always shut down that idea of it being the cause because I didn’t think hormones could cause seizures. I had been trying a new birth control pill. Now I know that you should never do this, but I stopped taking them in the middle of my cycle. It was giving me horrible cystic acne and I couldn’t stand my face looking that bad. It was the next day that I had the seizure in April.

In May, the same year, I was about to sleep. I remember feeling really weird and calling out saying, “Mom, I don’t feel good.” I had started to crawl out of my bed. I woke up to my parents. My dad had to move me during the seizure because I was blocking my airway with the way I was on my knees and then hunched over. My mom had to call for him because she couldn’t move me herself.

I put all of these details in case they sound similar to what you or your family member or friend is experiencing. I brought it up to my mom again that it might be my hormones. I found out that Catamenial Epilepsy is where someone has seizures because of an imbalance in their hormones. I think my progestin or progestorone or whatever drops sometimes way too much. I think I was also getting way too much estrogen with the regular birth control pill. I talked to my doctor about taking a “mini” pill? I think that is what it is called. It just has the progesterone hormone. I took it the first time and felt a sense of clarity. I finally felt normal. I also realized that I had this extreme brain fog. Now I only felt like this for an hour or two and then I was back to feeling weird foggy. I don’t know what gave me that insight into knowing how I should feel. Maybe science could explain that or maybe fate or God or something let me see how I should feel.

I have been on this now for 2.5 months. I had a blip about a month ago, but it takes time for it to regulate and work well. I finally feel more normal.

Symptoms/Problems I had before: seizures, memory loss, really bad short term memory, word finding issues, speech problems, headaches after going unconscious from a seizure, really bad fatigue, dizziness, syncope, weight gain, huge craving for sugar, stress, depression, etc. probably

Problems that seem to have improved so far:

-I do not crave sugar even close to how much and how often I did before

-I don’t have the syncope anymore really. I eventually got to a point where I felt dizzy after only 10 minutes of standing, but that seemed to go away very quickly with this pill.

-My mind is starting to clear up. I think my memory is getting a bit better finally and I might be able to learn new material soon.

-I don’t seem to need 12 hours of sleep just to feel tired after being awake for only 4 hours. I can sleep for 8 hours now and function like a normal person.

-My weight is starting to go down. It is now so much easier to manage. I don’t feel cravings all the time.

-The biggest thing that changed that I never expected was my mood. I am so optimistic and happy and stuff. Just wow. I feel like a completly new person in that way.

So if this helps anyone at all, that is cool. If not, I am glad that no one else on this website is experiencing this. I think my hormones are the reason for my seizures. I probably sound like some annoying person with a “Google degree”, but that is what I have. No doctor seemed to really care about digging into my issue further. They just wanted to give me some vague answer and shoo me away. So I took matters into my own hands. And my doctor simply agreed to me trying a different birth control. But I am the one that has greatly improved how I feel. I have not been officially diagnosed with Catamenial Epilepsy or anything, but maybe I will be soon. I am seeing my new doctor soon. That would have to refer me to someone else to even talk about that diagnosis. For a while, my family and I just didn’t have anymore money to figure out what was wrong with me. I still think I might have figured it out. It is the only thing that has made me feel so completely changed.

My doctor said syncope commonly goes away as you get older. I also remember my doctor telling me I had seizures due to my emotions basically. I think syncope goes away for most as they get older because your hormone levels change as you get older and they become more stable. I also truly believe my hormones were making me an emotional wreck, because now I feel stable on this progesterone. I probably forgot a few details. I will comment or edit new things in.