Diagnosis of a Mad Girl

Ever since I can remember, I’ve been weird.
Not creepy weird, just the “what an interesting person” weird. Friends never noticed it as much, though I never had the same group of friends every year to notice my issues. But family and close family friends saw it.

The most obvious oddity was as simple as this:

There I would be with someone, chatting away in a conversation. With no indication as to why, I would just suddenly begin staring into space. Most people would call it being “zoned out”. During that time (no more than a few minutes at most) my eyes would gloss over and I was completely unresponsive. You could shout, wave your hand in front of my eyes, snap, shake me… It didn’t matter. I was simply not there. After a bit, I would abruptly return to the conversation. Sometimes vaguely aware something had happened, but mainly, just continuing on with the conversation. It became my thing. “Christy zones out”. Especially when involving TV or electronics. People began to expect to see me zone out from time to time. Simple enough, right? But there were many other oddities that weren’t so simple.
And here comes the part where I begin to worry. Yes, worry. I worry that with every word I write, your opinion of me will be changed. Yes, you. As well as everyone else. Because it isn’t easy to see psychotic symptoms and not deem a person crazy.
And even at the age of 6 (earliest I can remember), I worried about it then, too.

At an age I can’t even remember, I had extremely vivid dreams. In these dreams, which actually felt like reality, I would fly. Actually, that’s not entirely accurate.

In these dreams, my soul would step out of my body and fly about the room. I never made it out of the room, but it was kind of like being Wendy meeting Peter Pan, learning how to fly. I barely remember these “dreams”, now. However, I do recall that they existed.
But the first time I ever saw something and remembered it, I was about 6.

I was sleeping over at my Grandparent’s house, one evening. After being asleep for quite some time, I suddenly heard a rumble. And I felt, what could only be accurately described as, a light. A warm, fuzzy, happy feeling.

I opened my eyes and hanging above me, seeming to float in clouds, was the face of my deceased Grandpa, whom had passed when my mother was young, before I was even I thought.

When I went to sit up, it was my soul that sat up from my body. And I just stared at him. His face was rugged, but so soft in nature. His eyes were deeply kind and understanding. He showed me his hands, rough but full of affection. And when he spoke, his voice was loud, but gentle.
And he said “Christy, I am an angel. I chose the face of your Grandfather so that you would not be afraid. I am here to tell you things. Things you won’t want to hear. This leaving of your temple must stop. They’re coming. And for you. Do not leave. Know this… You will see the beginning of the end. And you must fight.”
At this point, there was no audible voice anymore. It was as if the light had penetrated my soul and was speaking a language of which I had no comprehension. I felt. And I knew. Somehow the light imprinted a code of sorts, on me. It said, I want to be a mother, I want to be a wife. I want to serve HIM. And I must love.
Then it was all gone. The space in front of me was just that… Space. And I instantly fell back asleep.

To this day I will not deny that I was changed deeply by this moment. And, even as my tale unfolds, I will never deny HIS presence in these times.
As you can expect, it was many years before I told anyone this story. As a child, who had already felt a strong spiritual pull, I knew what had happened was real, so no one needed to know.

It was over 15 years later before I ever had a visual experience again. But the experiences never stopped. They became dreams.

“They say” you don’t remember most of your dreams. I remembered 95% of them. And I dreamt every night.

I often dreamed of things I had never seen before. I saw children. My children. I saw family, much older. I saw scenarios that in years to come, would happen. Sometimes my dreams where really bizarre. And ultimately, these dreams would spawn a collection of dream journals and dream interpretation books, bought mostly by my Mother. Before the dreams journals, SHE was my dream journal.
Along side the dreams, other issues developed. Most of the issues were met head on by doctors. But some that I never spoke about. Because, quite frankly, no one wants to be called crazy.
From a young age, I had terrible migraines. Doctors prescribed many things. When I was old enough, I took imitrex, and it helped some. But nothing seemed to stop them. They got so frequent that I actually got used to them. After years of enduring them, this sums up all that they were: it felt like someone was jamming an electrified ice pick, that was so cold it burned, deep into my skull and brain. I would be stabbed over 50 times in under 2 minutes, an average of twice a day, from around 6-7yrs to 30yrs. But I adapted. I mean, why let a migraine stop you?
I had major bowel issues. Not to be terribly graphic, but at a very young age I just couldn’t poop. Eventually, my stomach pain led to a doctor visit, including a sonogram, concluding that I was full of shit. Literally. I had to be given suppositories for what seemed like forever. But. Eventually I was okay. But I still had tummy issues. Pain. Ulcers. Diarrhea and constipation back and forth. Acid reflux. Basically, my digestive system and I are not, and have rarely ever, been friends.
My periods were irregular. Which wasn’t as big a deal, until I wanted to have babies. Babies required some regularity. And somehow, I managed to have two beautiful babies. Though it took every last inch of my strength to get there.
And my heart would flutter occasionally. But, of course, nothing ever showed on the monitors.
All for which my parents and I sought medical attention.
What I didn’t tell my parents, or anyone, was the overwhelmed feeling I had.
Anytime I was around someone I could taste, that’s right you read it correctly, I would TASTE their emotions. It first began with seeing my Grandpa. From that moment on, when someone was angry I tasted metal. Not quite metal, I sort of acidic metal. Almost like licking a battery. (C’mon, you know you’ve all done it!) If someone was happy, it was like buttery croissants dipped in cotton candy.
And right now you may be doubting me. But I am urging you to hold on.

If I could gather the people together, whom I have shocked with this ability, I could gather at least 25 people. Seeing as I only began using it outright from about age 16 on, I would say that’s pretty decent.

If I could gather the people who would say I always know how they feel and have a way of seeing things that most don’t… You could assemble anyone who has spoken to me on a personal level.

And if you asked anyone of them how I “explained” the ability, the resounding answer would be: a gift from my CREATOR. It wasn’t until I became strong in my faith that I felt comfortable using it outright and acknowledging where it came from.
But I didn’t begin telling people that it wasn’t a feeling, but rather a taste, until I was about 27yrs old. I mean, don’t you think I’m insane by now? Don’t answer that. Just keep reading.
What I also didn’t tell people were the moments of visual and audial disturbances.

As I entered my teen years, life became overwhelming. Call it angst, call it puberty, whatever it was, I was just done. I was constantly haunted my a voice in my head and a face in my dreams. Occasionally both.

Imagine, if you will, you’re looking at the world around you. Your phone, hands, desk, floor, etc. Now, imagine someone took an overhead projector transparency sheet, You know, the clear ones that teachers used to write on, and on the transparency was an image that was actually a video. Still mostly transparent but images are there, moving. So they take this sheet and place it in front of your eyes. You see the world around you, but on top of it, you see a semi transparent scene as well. I know it is hard to imagine. But that is the best I can do. So, you’re walking along and this sheet falls down over your eyes. On this transparency sheet are rows upon rows of TVs. On every TV there is a different “show”, each one brightly lit and with their volumes at maximum. The shows changed. Some stayed the same. Some were memories, some were premonitions, some were dark and terrifying.

Then, imagine to your right and left there are radios. Every radio tuned to a different station. Volumes at maximum.
For a few minutes, an average of 5 times a day, I was trapped in that.
The world got confusing. My heart would race and I would stumble over words. Sometimes I would just withdraw. The world around me would seem utterly overwhelming.

I didn’t talk about it much, and after a while I began cutting.

When I would cut my skin, the overwhelming sensation would ease, just a little.

At this point I began seeing her.

A woman. The most beautiful, evil thing I could imagine. She was in my dreams. Every night. Telling me the worst about myself. Making up the worst when there wasn’t any bad.

I finally cut just a little too much and my family found out. I remember cutting and knowing I needed to stop. But my legs wouldn’t move. I couldn’t take my eyes off of the slashes, as my hands rhythmically sliced my thighs with a straight razor. I remember feeling like I couldn’t stop. After it stopped suddenly, I walked into the living room, almost like a zombie, and just showed my Mother, Brother, and step Dad what I was done. I remember feeling nothing but tired. After that night, going to a hospital and going to a psych hospital, to ultimately go home with my Mother, we sought psychiatric help.
And that’s where I thought my life would begin. A psychologist believed I was bipolar. After a glucose tolerance test they suspected a blood sugar problem. And years later these things were confirmed.

I was bipolar at roughly 23. And after gestational diabetes with my first child, I eventually went full blown diabetic, Insulin and pill dependent. I went 8 years building a way of life based off of the information that I was bipolar.

My only issue was that I had many other symptoms that didn’t fit.
But instead of seeing everything as ONE issue, I did what most would do. Considered myself bipolar and sought medical attention for the other symptoms. I based coping skills on cognitive behavioral therapy, I found groups to help me learn. And everything seemed like, though it might be a struggle, ultimately I would be just fine. A little crazy, maybe. But okay.
Then around the age of 27 I began feeling tired. Not just tired, but weak.

I’ve always been a fairly strong person. I lifted furniture with the boys, took dance classes, won arm wrestling matches. Even at my chunkiest, my biceps and calves were all muscle.

So when I started feeling tired just walking the 9 steps upstairs to our room, I knew something was up. But I didn’t have insurance and I didn’t have money.

So I ignored it. I pushed through. Even when I was exhausted I pushed my body. I didn’t sleep much and when I did it wasn’t well.

My body was often sore and occasionally I would just fall asleep uncontrollably.
So I got on Google. And webmd.

Yeah, yeah, I know. Crazy Google diagnosis. Whatever.

I had no way of seeking medical attention for it, so I researched.

I researched for 3 years.

And yes, I obsessed.
As those 3 years went by, more things began happening and the fatigue got far worse.

A lot of my symptoms went unspoken or only spoken to my husband.

There were times when I would tell my husband I just didn’t feel right.

In fact, I told many family members those exact words.

More alarming, I admitted to my husband one night, that sometimes when I looked at him and my daughter, I would think they didn’t look familiar.

Like, I knew they were my family but I didn’t recognize them.

But the moments were short and didn’t occur but once every 2 weeks or so.

At that point, I actually blamed it on my bipolar. Thinking it was just moments of disassociation. I then worried about my mental health, but I knew I could control it.

In 2015 I became pregnant. Twice.

Once in January, which ended in February with miscarriage and an official diagnosis of diabetic.

In June of that year, I became pregnant with my second child.

The pregnancy was difficult but I was always very upbeat during pregnancy (even with my first). I had to take progesterone injections once a week and my insulin consumption was HUGE. But I had insurance (Medicaid) so I could “afford” it. (Shout out to Medicaid for amazing coverage for ME, cause I know some people aren’t the same). The major difficulty of my pregnancy was dealing with the death of my father. He had battled prostate cancer for several years and had come to a point where nothing was left to do. My husband, daughter and pregnant me, moved in with him, my brother and his entire family. My Mom eventually moved in as well. (That’s 6 adults with one preggo, 4 kids, and two fish in a 3 bedroom house.) We cared for my Dad as he got sicker and eventually died. During that time, I managed to handle everything that came. We had an amazing support system and we had each other. But as I look back, I realise. There are a lot of blanks in my memory. The time was a decent amount of time, but in my memory there is much less that is concrete. Many memories are fuzzy and some are just gone.

My Dad passed December 31st, 2015.

The day after my birthday.
Fast forward, roughly one year later.

It is 11:30pm, December 29th, 2016.

I have a beautiful new child and a puppy. We have moved from the home with which we had stayed in with my brother and his family after our father’s passing, into our own home. My eldest child is doing wonderful in her new school.

The anniversary of my dad’s death is in 2 days. My birthday is at midnight.
I’m lying in bed, snuggling with my dog, and suddenly I feel a tingle in my face. It is between my eye and nose, about a centimeter from both. Suddenly, my face begins to twitch. My cheek is pulsating, my eye is twitching back and forth. My mouth is twitching, and with every twitch my top lip draws into an extreme Elvis lip.

And it continued to spread.

Eventually the entire LEFT side of my face was twitching and contorted. And as it was jokingly put, I looked like two face from the Batman series.

When I tried to speak, to alert my husband, I found I couldn’t think of the words to say.

It was as if my entire vocabulary had been wiped clean, yet I could THINK the words. I just could not get them to come out of my mouth. It lasted roughly 2 minutes. And when it was over, it was completely over. And I fell asleep almost instantaneously.

When I woke up, I had a sort of amnesia about it. I remembered that something weird involving my face had happened. But I wasn’t sure what it was that HAD happened. And that just made me more confused, and I was already confused.
But my birthday was just perfect. My kids went to my Mother’s house and my husband and I went to dinner with my best friend and her husband. After dinner we came back, played a game and hung out.

When I woke up the next day, the anniversary of my Dad’s passing, I felt emotional. I knew my stress levels would be high.

We visited my dad’s parents. We visited his grave. Then we went back to my Mom’s house.

A little while before midnight and the new year, my face began to twitch. At this point, my family intervened. My family all agreed that I needed to seek medical attention, even with no insurance.

The next few days as we tried to get an appointment for me, the twitches got worse. They began happening several times a day and increased in intensity and the area affected.

I met with one doctor, whom after one appointment said I was suffering from depression and anxiety. After bloodwork, she confirmed blood sugar issues and said I had diabetic neuropathy.
I wanted a second opinion.
As I combed through my years of research I began to consider one possibility. MS. It seemed to fit the bodily feeling I had. (And of course the mental side I chalked up to bipolar)

So we decided to seek a neurologist.
The neurologist confirmed left side weakness and twitches. He ordered bloodwork, an MRI and an eeg. I did the bloodwork and went to get an MRI. The eeg had to wait. I was both excited and extremely nervous about the MRI.

On one hand, it would undoubtedly show if I had MS or numerous other scary possibilities (tumor, fluid, illness).

On the other hand, I am extremely claustrophobic and more so when I cannot move, along with a closed space.

I really, truly believe I suffered acute PTSD after that MRI.
Results came back and I was 100%. Had some high cholesterol, my blood sugar was a little above desired. But my brain looked great.
I was relieved and frustrated. The spasms hadn’t stopped and now the moments of mental issues were increasing.
So, we planned on the eeg, since the neurologist was adamant and also proceeded to find a regular physician to begin diagnosis of my issues. And though the doctor undoubtedly helped me by replacing my long acting insulin with a pill, she ran blood tests and surmised that my blood sugar a1c being 1 point above normal was the likely cause. I was to begin my new pill and come back in 3 months to see how I was doing.

That wasn’t good enough.

I didn’t want to spasm like this more 3 months.
I went back to the neurologist, since he had expressed a desire to keep going until it was solved.

So, I set up the eeg and went to his office to have it done.
Here is what happened:

I walked into one of his small rooms, and there was a chair next to the table. A very warm, sweet woman told me to sit down and said she would begin attaching electrodes. But that they wouldn’t hurt one bit. And she was right. She attached each electrode. At least 15 of them. Possibly 20. After she was done, with her help, since every electrode was attached to a panel by a wire, and that panel attached to a computer, I laid down on the examination table. She turned out the lights, sat down at the computer with her back to me, and we began. It started with a series of questions. What year is it? 2017. What month is it? January. What day of the week is it? Thursday. Who is the current president? Obama. (One day before the inauguration. She said most people had been saying Trump, but I have to be accurate, lol). Then a series of commands. Look up, look down, look right, then left. Close your eyes. Open your eyes. After that, she said she had established a pattern and now the actual test would begin.

And wouldn’t you know, it would begin with flashing lights.
When I was young, under 5, I had 2 seizures. Both febrile in nature. My temperature was somewhere around 105, I believe. However, in highschool, junior year, I went to the homecoming dance. We danced all night, right in front of the dj booth! Then we went to a darker than most, restaurant and the pictures began. About halfway through 3 flashes a second, I asked people to warn me because it was making me feel sick. But, as high school boys do, one of our group called my name and purposefully flashed it in my face. I spent the next hour feeling like I was going to puke. I was weak, my head was spinning, I was disoriented and everything just felt WRONG. After a car ride under my boyfriend’s jacket, I slept in his bed, unaware of anything. But this is what he told me: “You just passed out. And you kept shaking every once in a while. So I took your dress off, and put one of my shirts on you” I was wearing said shirt. At that point I realised I had I problem with lights.

Though strobe lights had always made me feel sick.

So, back to the original story.
The test began with a light. Placed above my face, slightly to the right side. A strobe light.

She had me close my eyes and the light began to flash. It was roughly 8 bursts of flashes. With a few seconds between each burst. Each burst was slightly different with some pulsating faster, some slower. After the 5th burst, my face began to twitch. And I felt disassociated with realty. So there could have been 50 more. But I vaguely remember about 8. After that, she told me to keep my eyes closed but to take a moment and tell her when the twitching stops. After a few seconds, it slowed and stopped except for my eyebrow. I told her that and she said she thought that would end soon. 5 seconds later and it did. Then, I had to breathe in and out, as if I was running, for 3 minutes. By minute 2, I felt so weird. But I managed to get to 3. At which time she told me to keep my eyes closed and rest. Even sleep, if I could. I took one deep breath and upon exhale I was drifting off to sleep.
The next thing I remember is the warm, loving lady waking me and telling me the test was over. She removed the electrodes, while asking me to explain how I felt. With every description I gave, she completed my sentences. She told me that I would hear from the neurologist soon and I got in my car and drove home. I don’t quite remember the drive home. I think I told my Mom what had occurred.
Later that evening though, I was just sitting around and suddenly I felt very weird. I looked at my husband who was sitting down and said “I don’t feel right”. Within a minute, as I had both hands against our door, leaning and holding myself up, the oddest sensation overtook me. First my feet went numb.

Not even tingly, pins and needles numb, like GONE. I had no feet.

Within seconds it travelled up my leg and my knees began to buckle.

Luckily, my husband was still right next to me and as I lost control of all of my extremities, he caught me and stood behind me to help me stay sitting. My feet pointed into an extreme ballerina pose. My hands, all contorted into claws, shook slightly. And when I tried to speak, I could barely stutter and stumble over words. Some words came out as other words, some words I just couldn’t remember. It lasted about 2 minutes.

Then suddenly, like a weight being lifted I was back to normal.

From that moment, until 4 days later, the spasms and what I began to call “lock ups” increased.

On the 4th day, I began my period and suddenly, they were back to “normal”, which means once or twice a day.
3 days later I had another appointment with the neurologist to discuss my eeg results.
The neurologist tells me that if I had a different doctor or if I hadn’t had such a reaction, my eeg would have been deemed normal.

But, coupled with all of my symptoms, the reaction during the eeg and my doctor being good, my eeg was deemed abnormal.

Throughout the last part of my eeg there had been small bursts of activity. Which could have been overlooked, but instead made him believe I had a type of lobe epilepsy.

But, that since he had seen bursts on BOTH the right and left, he could be sure which type.

However, treatment was the same for both. Seizure medication. Because. I was an epileptic. Having simple partial seizures. And had likely been one my entire life, seeing as my MRI showed no trauma or damage.

I cried on the way home. I was so relieved to know that there was an answer.
He had told me the fatigue, sleep issues, likely my bipolar issues and undoubtedly the spasms and lock ups were seizures.
That night, I began researching.
I am the kind of person, that when I find out something about myself, especially an illness, I have to know everything. Like e-ver-y-thing.

So, there are 2 types of lobe seizures. Frontal and temporal.
It didn’t take me long to realize mine was temporal.

The two main nicknames for this type of epilepsy are “the prophets disease” and an Alice through the looking glass disease.
So, here is the part where I get all technical and tell you what it means. Everyone has a right and left temporal lobe in their brain.
It is located on the sides of the brain, roughly where your temples are located.

When a person has Temporal Lobe Epilepsy (here forward referred to as TLE) that means they have partial, focal seizures.

Basically, my seizures begin in my temporal lobe and focus on differing areas of my brain.

These seizures can be simple or complex, which basically means either it affects the temporal lobe alone (simple) or it affects other parts of your brain (complex).

With TLE being located in the Temporal lobe and able to spread to other brain regions, the symptoms are extremely widespread. Ranging from slight physical discomfort to extreme hallucinations.
People with TLE can also experience myoclonic (jerks, spasms and contractions of the muscles or loss of ability to contract the muscles) and tonic clonic (grand mal, with loss of consciousness) seizures as well.

Also, due to how deeply the seizures occur within your brain, TLE remains somewhat a mystery. With some people finding relief in medicine, some in surgery, and others none at all.
The ins and outs of life with TLE are vast and vary from person to person and all of the “in between” are full of wonderland type happenings, that could fill a book…
… Or a Blog… 😊


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