Losing My Mind…

MAY 2013

I don’t have much memory of that day after it happened – only what I was told.  

I do remember the part before – I had knee surgery the day before.  I woke up that morning, took my pain pills and crutched my way into the kitchen.  

Had breakfast, watched my kids get ready and my husband get them out the door to school.  

My parents were in town to help out and shortly after everyone had left my Mom suggested we sit on the front porch to get some air.  

I was sitting on my porch swing, my parents were in the chairs across from me.  My Dad had asked me a question that I was googling on my phone for the answer.  I remember reading him the answer.  

My next memory is laying on my porch, men in navy blue shirts leaning over me, talking to me, so many questions.  

I wanted them to be quiet, I wanted them to stop talking.  I remember being carried down my front steps, I remember being loaded in, I remember being confused.  

I truly did not know what was happening, I didn’t know how I had gotten where I was. I could hear my Mothers voice, I heard her ask why the lights were not on.  

I could hear the EMTs talking to each other.  He put an IV in my arm, I asked him what he was doing.  He said, “it’s in case you have another seizure, I’ll be able to stop it.”  

Weird, I wondered who he was talking about? Not me, I had knee surgery, not a seizure, why was I here anyways?  

I said, “Do you see the man driving behind us?  He looks just like my husband.”  

“Mam, that is your husband.  He is following us to the hospital.  You suffered a grand mal seizure and you are in an ambulance going to the hospital.”   

It’s hard to explain when part of your life, minutes, hours go missing.  You strain your brain to retrieve the memory.  You close your eyes and try your best to remember what happened the way people recall the event to you.  

But it’s not there, it’s just a blank space of nothing, your mind has tricked you into thinking you were in control of your brain all these years.  

The shock when you realize it’s the other way around is sobering.  

That day at the hospital the Doctors concluded that my seizure was a direct result of my surgery, or the anti-nauseants or the anesthetic.  It was what they called induced, brought on by an outside factor.  

I was to see a neurologist but they all felt confident their diagnosis was correct.  I went home that day and slept, and slept and slept some more.  I saw the look on my husbands face, my parents face – I realized that it had been more traumatic for them than it had been for me.  

After all… I had no memory of it.  Over the next few days everyone just stared at me, watching and waiting to see if it would happen again.  

It didn’t.

I went to see a Neurologist, the best in the city, the head of Neurology – I would have an answer for sure.  He agreed with the Doctors from the hospital that day but to be sure he would send me for an EEG and a CAT scan.

If those came back clear he wouldn’t take away my license nor would he put me on a anti-seizure medicine.  I was just to stay clear of the anti-nausea medicines I had been given for my surgery.  

It came back clear, hallelujah I was fine!  Let’s just move on with life please…..

FEBRUARY 2014

My entire house had been hit with the stomach bug except for me.  They were finally recovered and we were getting back to normal.  

I woke up to the phone ringing, it was the school district saying school was cancelled due to snow, yay – no getting up.  I closed my eyes again and immediately knew it, that nauseous feeling – for the love, I caught the stomach bug.  

I went into my bathroom and found a prescription I’d been given from my knee surgery for Phenergan (a popular prescription anti-nauseant) in case I had been nauseous after surgery.  I hadn’t been nauseous after surgery so I’d never taken it, but I was now so was thankful to find it!  

It said to take 1-2 every 6 hours.  I was beyond nauseous at this point so I was taking two!  I went back to bed, told my husband I wasn’t feeling well and what I had taken.  I fell back asleep and when I woke up a couple hours later I felt great, not sick at all.  It had worked, stomach bug successfully averted.  On with the day…

My husband was home that day, he was working in the barn down our driveway.  My daughters gymnastics class had not been cancelled so I had told him I would be taking her.  

I yelled to my daughter that we would be leaving in 10 minutes.  I walked into my closet, stood in front of the shelves I keep my jeans on and tried to decide which ones to wear.  

I heard my name being yelled, I felt someone shaking my shoulders.  I opened my eyes and saw my husband was staring down at me.  What on earth is he doing? Why is he calling my name and why am I laying on the floor of my closet?  

“What?” I said, as though it was perfectly normal for me to be sleeping in the closet.  

“What happened? What are you doing? You were completely unconscious!” he said.  

Weird.  I came in for pants and woke up on the floor – I don’t know how much time passed between the two.  My 11 year old son found me, he thought I was sleeping, or dead, he wasn’t sure.  He ran to find his Dad.  

My husband put me in my bed, I heard him on the phone with my Mom.  

He said to me, “your Mom thinks you had a seizure”.

Impossible,  I was just looking for pants.  In my life I don’t ever remember being so tired.  I slept all day, he kept waking me up and asking me questions, I’d answer correctly and he’d let me go back to sleep.  

He wanted me to drink water, I couldn’t – I was too tired.  I probably slept for a solid 18 hours.  

I woke up to my phone ringing, it was pitch black out.  It was the next morning.  It was the school again, calling at 5am to say school was cancelled again.  I lay there some more, my husband was not beside me – I could hear him in the kitchen.  

I got up and felt like I’d been hit by a truck, every muscle in my body ached.  My contacts were still in my eyes. I went into the bathroom and looked in the mirror.  My face was bruised on one side, I had clearly met the island in my closet on my way down to the floor. 

I walked into the kitchen, it was still dark outside. There he was, he hadn’t been able to sleep.  He doesn’t do well with situations he can’t control or make better.  

He looked at me and said, “How are you feeling?”

“Fine.” I said.  

“Look at your face”, he said. “What happened yesterday?”  

I said I didn’t remember anything other than looking for pants.  I remembered nothing, nothing.  

I started to talk more and I remember the expression on his face changing, he started walking towards me and I heard him say, “are you alright?”  

“Mrs. Reid, you’ve had a seizure, we’re taking you to the hospital.”  

Again with the men in blue shirts.  I couldn’t have had a seizure, I was just talking to my husband in the kitchen.  I remember crying. I felt weak, I felt sore, I felt out of control.  I felt like I was losing my mind, literally.  

Why was it betraying me like this?  

My heart went out to my husband.  He said that yes my memory of what happened was correct.  He said I was talking and then started slurring my words and suddenly got a glazed look in my eyes.  

He had asked me if I was okay and my head just flung backwards and there we were on the kitchen floor, for better or worse, me having a seizure and him scared out of his mind.  

He had to call 911.  He had to yell for our oldest, he had to tell him he was in charge.  He had to call for our youngest and take her with him to the hospital.  He had to fend off Hugo who thought his Mother was being attacked.  

It was not how he had seen his day going… 

The feeling I had after these two seizures was different than before.  Maybe it’s because there were two and not just one.  When I was at the hospital that day they did a CT scan of my brain which came back clear but again told me it was likely an allergic reaction to the medicine.  

Back to the neurologist I should go and no driving until then.  The next few days I have little memory of.  I remember feeling paranoid, scared, I never wanted to be alone.  

My husband took time off work and if he had to go anywhere I would go with him.  I was scared of the world, I was scared of my brain. I didn’t trust it anymore.  I could tell he felt sorry for me, I could see it in his eyes.  I had always been strong and now I felt weak.  

A couple days later we went to Starbucks and stood in a long line.  

I looked around at the packed coffee shop and whispered to my husband, “I think I know everyone in here.”

“I’m pretty sure you don’t, are you alright?” he said.

I looked up from his neck and back around and he was right, I didn’t know anyone – I wanted to cry.  

What was happening to my mind and how would I handle life right now if he left me standing alone in Starbucks?  

 

I went back to the Neurologist and had more tests done, he said again that they were all clear and it was a “provoked” seizure.  

He would not take my license away, he would not put me on anti-seizure medicine but I was to never have Phenegran again.  He said it was a severe allergic reaction that had also played havoc on my brain.  

I went home and got back to my life, day by day I started to forget what had happened and started to trust myself again, trust that I would be ok as long as I didn’t take any other medicines.  

MAY 2014

My husband was out of town, he was in Atlanta with our youngest son.  

I woke up and left with my daughter , we went to Target, we went to the gym.  I checked her into the daycare and walked into class.  I stood near the front of the room, ready for my cardio kickboxing class to begin.  

20 minutes into class I lost my balance, I thought it was my new shoes so I walked to the back of the class and took them off.  I walked back to my spot, I felt dizzy – must be the heat, I felt like I was going to fall – must be the exercise.  

Don’t stop, push through, you don’t know anyone in here, you are not a quitter.  

Ever have a deja vu?  That feeling that you’ve been in the same place with the same people in the same situation before?  

Well take that feeling and mulitply it by 1000, but not it a good way – like you want to escape, you want out of that feeling more than anything in the world.  

Add a feeling of nausea and dizziness.  I could see my arm punching in front of me but felt like it wasn’t mine – it was a total mind / body disconnect, they call it an aura.

This was my last memory. 

“Mrs. Reid, I’m a medic with Williamson County, you suffered a seizure, you’re in a ambulance and you’re being taken to the hospital.”

“No, no I didn’t.”

“Mam you did.  There was a nurse in your class and she told us what happened, you had a grand mal seizure 40 minutes into class.”

I cried, I didn’t want to be there. I wanted them to let me out. I wanted to go home.  What had I taken? What had happened before that brought this on?  Surely something? Anything?  Nothing.  

“Mam your friend Amy has your daughter.”  

Holy **** did I seriously just forget my daughter was still at the gym? Yes, I had forgotten.  And who is Amy?  I don’t know anyone named Amy? What is happening? Where is my child?

Her pre-school teacher from the year before (Amy) had been there that day.  We had spoken in the lobby before class, like a gift from God he had placed her in class that day.  

I remember staring at the walls of the ambulance, my mind was not mine and in case I had forgotten here was my reminder.  

“They are trying to get a hold of your husband.”  Awesome, here we go again.

They wheeled me into the ER and I had to tell the story again, I was so tired,  I was tired of telling the story.  I hadn’t taken anything, hadn’t had any surgeries.  They asked me if I was taking diet pills? Pain pills? Any pills?  

I wanted to be able to say yes, I wanted there to be a reason WHY, but there wasn’t, it had just happened.  

The Doctor in the ER spoke to my Neurologist.  She said she was discharging me but was starting me on a anti-seizure medicine and I was not to drive until I saw my Neurologist again.  

I was in a daze, it was all a blur.  Had I really just had a seizure in a room full of strangers?  I was so private and all of these people had just witnessed this happen to me? I was horrified.  

My husband drove back from Atlanta with our son, they had to miss the event they had gone to see.  He was stressed, he felt helpless.  

I decided I wanted a new Neurologist.  I didn’t know exactly why, it was just a feeling.  My current one was close to retirement, I could feel his desire to be on a golf course instead of a medical office and I needed to be fixed.  

I went to see someone new, someone younger.  His youth didn’t scare me. I could tell he loved what he did and was eager to get me figured out.  

He said I needed to stay on the anti-seizure medicine, twice a day.  How long?  That was something he couldn’t tell me.  He said to stay away from pools if I was alone and not to have a bath by myself.  Like a child.

He said I had never had a MRI, he was sending me for one, particularly of my frontal lobe, to see what was causing the seizures.  

Then he looked at me like he wanted to be anywhere else other than that room and said, “I hate this part but I have to tell you that you cannot drive for the next 6 months.  If you have another seizure before that time the 6 months starts again.  It’s the law, I’m sorry.”  

My husband and I walked out of his office and I said I didn’t want to talk about it.  We got in the car and he started to drive, I began to cry to the point I thought I would never stop.  

I was certain I was dying of a brain tumor, who was going to take care of my family? Who was going to pack their lunches and take care of them when they were sick?

And no driving?  We had moved out of the city, their was no public transportation. Uber hadn’t come to our town and I had 4 kids going to 3 different schools.  

My husband said, “we’ll figure it out, we’ll get help, you will be fine.”  

My new Neurologist sent me for another round of EEG’s, ones where they change your environment.  When they put the bars up on the bed you start to realize they are anticipating you are likely going to have a seizure.  

I passed all their tests, ha – no seizure, nice try.  

I went for the MRI.  When I left after an hour and said goodbye to the tech who had run the test he said, “bye, good luck.”  

Ummmmm what?  I kept walking, I got to my car and wanted to go back and ask him what he had meant by that?  I thought about it the whole way home, who says that???  

I planned to go back the next day and demand he tell me what he meant by that.. like “good luck with the rest of your day?” or “good luck with what I just saw on the screen.”  

I didn’t go back.  I waited, waited for the phone call to come with my results.  

They told me the seizure medicine would take a few weeks to adjust to, a few months would have been a more accurate statement.  

It was awful, I felt terrible all the time.  I was so tired, I felt like a walking zombie.  My mood went up and down like a yo-yo and as my family member you never knew who you were going to get when you walked in the door.  

I couldn’t remember anything, I didn’t know what I had done that morning.  I repeated myself all the time.  

“You just told me that”, my husband would say. Then he stopped saying it and I could just tell by the look on his face he had heard it before.  

I started to think about what I was about to say, trying to remember if I had already said it during the conversation.

This medicine that was supposed to be stabilizing my brain made me once again feel like I was losing my mind. 

In the midst of my emotionally unstable medicine adjusting phase while waiting on my results (I was a total joy to be around) we were scheduled to go on a trip to the beach, we were leaving in a few days. 

The night before we left (a Friday night) I had left my phone in another room.  When I came back to check it (around 6pm) I had a missed call from a number I didn’t recognize and no voicemail.  

I immediately called it back and it was my Neurologists office, they were closed.  I said it was an emergency and got the answering service who did not know why anyone had called me and they wouldn’t be back in the office until Monday.  

I hung up and stared at the phone.  Why had they called me after hours on a Friday night?  Why hadn’t they left a message?  In less than 10 minutes I had it all figured out.  

I assumed he was calling with my results.  At the end of the day after he’d been done with his patients so he’d have quiet.  He had gotten my voicemail but wouldn’t ever leave bad news on a message so had decided to hang up instead.  That was it, I was dying, I just knew it.  

Why do we always go to the worst possible scenario? Why do we assume the news will always be bad?  

I cried and cried and cried until I thought I would pass out.  

My husband said I was jumping to conclusions.

We drove to the beach and I waited until Monday for them to return my call.  

It was the nurse, “we were calling Friday with your appointment reminder.  Your scans came back clear, the Doctor didn’t find anything wrong.”

“I’m not dying?  I thought he was calling with bad news.” I said.

“No mam, your tests are fine, he will speak to you more next week at your appointment.”  

What a relief right?  I mean it was like a new lease on life wasn’t it?  Shouldn’t it be?

Part of me didn’t believe her.  Part of me thought they were missing something.  Part of me still didn’t feel normal.  

Even though it was supposed to be good news I still wanted an answer.  I still didn’t understand why this was happening.  

Maybe because if I didn’t know why they had occurred how would I know how to prevent them in the future?

I went back to see my Dr. when I returned.  He was so happy to report that my scans were clear.  He wondered why I was not sharing in his happiness.  

I stared at him and said, “then why am I having seizures?”,  “why didn’t anything show up on the scans?”

And then my young and jovial Neurologist switched to his serious Doctor face, looked at me and said, “I know you want an answer and I’m sorry but sometimes we just don’t know WHY.  Sometimes we just have to accept that things just happen and we do what we can to make sure they don’t happen again.  Trust me when I tell you that when you start having seizures at your age (easy with the age reference young gun) and I send you for brain scans you DO NOT want me to find anything because what I am looking for is a brain tumor.  This is good news.”

“So how long on the medicine?”

“There’s no test I can run to tell you you won’t have seizures anymore, you would be playing russian roulette if you stopped taking it.”

So that was that.

The next 6 months were the hardest months of my life.  I felt physically terrible from the medicine but eventually adjusted.  As someone who never liked to ask for help I was left with no choice BUT to ask for help.  

I needed to ask for a ride everywhere I went.  I relied on friends, I relied on my Mom and Mother-In-Law who came down to help, I relied on my husband and I probably wasn’t deserving of any of the help that I got.  I felt sorry for myself, I felt out of control, I felt weak.

In the midst of my storm there was a ray of light thrown in from the people I met during that time and it produced the most beautiful rainbow.  Friends I made who made those months more bearable, who drove my backside around, took me to lunch and most importantly… asked me how I was.

During those 6 months I realized how lucky my family was to have parents who were willing to drop everything and fly to another country to help us. 

And wow, what can I say about this amazing husband of mine?  What he had to put up, what he had to sacrifice to stay home and be with me I will never be able to thank him enough for.

He is somewhat over the trauma of it all and now I find it endearing that when we see fireworks he tells me to look away, when I’m out by the pool he bangs on the window for me not to be alone, when I take a bath he checks on me every few minutes, he is being 100% serious but I can’t help but chuckle.  

It has been almost 3 years since I’ve had a seizure, it has been the same amount of time since I’ve been on anti-seizure medicine.

And because my Neurologist could tell that I was not going to stop asking until he could give me some sort of explanation for what was causing my seizures he finally came up with this explanation that he was quick to say was not proven, it was only his thoughts.  

Maybe you are going through something similar that you can’t get any answers on, maybe this will be helpful to you as well.  I know it has put my mind at ease.

He said that everyone has a “seizure threshold”, that he could provoke anyone into having a seizure through medication that would push their brain activity over that threshold line.

He said the majority of people lived well below that threshold line, people with Epilepsy lived above it.

He thought that I had probably spent my life living just under it, tapping the ceiling dangerously but never being pushed over the line.

The medication or the mixtures of them I had taken for my surgery and then when I had the flu had lowered my threshold (or increased my brain activity) which caused the seizure.

Because I had always lived so close to that ceiling my brain now knew how to go there, it was familiar.  

My threshold may have been lowered by those medicines just enough that my brain wasn’t able to keep it’s activity from crossing it, even without being provoked by an outside source.  

So there it is, I feel like I just wrote a novel.

Thank you for listening to my story.  It is one I have been asked about so many times.  Why couldn’t you drive?  Are you really ok now?  Do they know what caused it?  I have tried to piece it all together the best I can. 

I am beyond thankful for my health, I am beyond thankful for my family and friends.

But do I still panic if I feel a twinge in my head? Absolutely.  I probably always will.

Will I stay on the medicine forever?  I hope not.

As long as I have to drive a car I will.

As long as I have to care for my children I will.

Maybe one day when we move to the beach and I can walk everywhere I will try.  Who knows, I need to work on getting that beach house first…… 

XoXo

– All photos by MINGO photography –