Tuesday, January 28, 2014

The Doctor Is In...Well Kinda

So what comes next?  

 

Well there was a doctor, a neurologist.  He was local, from the hospital that we used.  He was on our insurance.  He was the one who was supposed to fix me.  He was my exorcist.  

The first appointment was amazing.

Nothing was really answered in definite terms.  But as my mom and I sat in the little room, I read the posters on the wall.  

 

Do you ever experience …

1. feelings of Déjà vu

Check

2. loss of vision or blurring

Check

3. tingling feelings

Check

4. profuse sweating

Check

5. dizziness

Check

6. racing heartbeat

Check

7. lightheadedness

Check

8. blackouts

Check

9. severe headaches

Check

10. an overwhelming fear

Check

If you answered yes to one or all of these you may be experiencing epileptic seizures.

Please see a doctor immediately.

Check, well kinda.

 

I was so excited!  

Mom! Mom!  Every one of those, that’s what I feel.  That’s what it is.  I have seizures; we are in the right place.  We’ve got it!  I felt like I had found the buried treasure, this was medical.  Doctors fix stuff, I’d be fine.  My demon would be gone in no time.  See ya later sucker.  

And, the doctor seemed to agree…well kinda.  He believed what I “say” I experienced sounded like seizure activity.  He could not say for sure due to no actual proof.  

You see, I didn’t mention the fact that the ER nurses never actually got me hooked up to anything, at all, ever during my multiple seizures that night in the ER.  They watched them happen, though I don’t think there was ever a detailed report given to anyone, certainly not to me.  

 

So, we would do tests.  Find out for sure, see what was going on.

The doctor gave us some details.  Seizure disorders are more common then I realized, that there were medications that could control the episodes, that most people get their medication set and only come back to the doctor for a yearly check up, that many people just grow out of them.  

This didn’t sound bad, barely even an issue.

All I had to do was get through the tests and then I’d know why.  I’d know what.  I’d know if it was a tumor crushing my skull or a scar in my brain, or whatever else caused this weird brain activity.  

Tests.

Then I’d know the facts.

 

I was naïve and positive, or maybe just hopeful.  Desperate is probably the best word.  I was desperate.

 

So we did the tests.  I laid therestill in claustrophobic tunnels.  I stared at flashing lights.  I slept.  I didn’t sleep.  I had nasty goop in my hair.  Electrodes stuck across my head, my chest.  I was tested.  

My parents and their insurance companies paid a lot of money for a lot of big beeping machines to test me.  For nurses to hook me up, and aids to monitor.  For doctors to read and diagnose.

 

I passed!  Or, as I saw it, I failed.

 

The tests were all clear.  Clean.  Nothing.  Nada.  

 

Which in epilepsy terms apparently meant I was just likethat vast majority of people that have seizures.  No body knows a damn reason why my brain went nuts.  

I didn’t even get to officially have seizures.  I had presumed seizures.  

Which pissed me off.  

Presumed.  Like maybe I was lying.  Like maybe I acted like a crazy person for fun. Like maybe the little demon who consumed my body was my imaginary friend.    

 

Okay, as a grown up I do know that presumed is more of a legal term and was never meant to offend (though occasionally I do think these doctors mean to offend…more on that later).  

 

But it did feel like a kick in the gut.  It felt like my demon chuckled, can’t catch me.

 

The plus side?  They still treat you for presumed seizuredisorders.  So it was medication time.  Yay, well maybe.  

In my case, not yay.  

But that is for another day.  

 

Below I have a list compiled from Epilepsy.com.  I’m posting it because I think it helps to actually read a list like this.  It is broken down into categories (beginning, middle, and end seizure activity) which I will explain more later.  

I’ll place a star by the ones on the list I typically experience with my episodes…never mind.  I literally just started almost every single one.  The few that I didn’t star I’m not sure about since someone else would have had to observe me to tell me what I was doing, since almost all of my seizures have occurred in private I don’t know everything that I do or have done during an episode.

 

Early seizure symptoms (warnings)

Sensory/Thought:

Deja vu
Smell
Sound
Taste
Visual loss or blurring
Racing thoughts
Stomach feelings
Strange feelings
Tingling feeling

Emotional:

Fear/Panic
Pleasant feeling

Physical:

Dizziness
Headache
Lightheadedness
Nausea
Numbness

No warning:

Sometimes seizures come with no warning

Seizure symptoms

Sensory/Thought:

Black out
Confusion
Deafness/Sounds
Electric Shock Feeling
Loss of consciousness
Smell
Spacing out
Out of body experience
Visual loss or blurring

Emotional:

Fear/Panic

Physical:

Chewing movements
Convulsion
Difficulty talking
Drooling
Eyelid fluttering
Eyes rolling up
Falling down
Foot stomping
Hand waving
Inability to move
Incontinence
Lip smacking
Making sounds
Shaking
Staring
Stiffening
Swallowing
Sweating
Teeth clenching/grinding
Tongue biting
Tremors
Twitching movements
Breathing difficulty
Heart racing

After-seizure symptoms (post-ictal)

Thought:

Memory loss
Writing difficulty

Emotional:

Confusion
Depression and sadness
Fear
Frustration
Shame/Embarrassment

Physical:

Bruising
Difficulty talking
Injuries
Sleeping
Exhaustion
Headache
Nausea
Pain
Thirst
Weakness
Urge to urinate/defecate

 

Source: https://www.epilepsy.com/101/ep101_symptom

 

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