Friday, April 24, 2015

We have a winner

I have been dealing with these fainting seizure issues for YEARS.  They happen infrequently (so grateful for that) and were really hard to diagnose because every test came back normal.

Which is great, I mean no one wants to have a bad test result, but at the same time I am not imagining these episodes and I wanted to know what they were.   I have gotten a few misdiagnoses along the way; meniere's disease; salt intake issues; heat intolerance.....

But in March, I had an EEG as a formality to getting my license fully reinstated (I have a conditional license right now).  Yesterday I got a call from my neurologist's receptionist that my test results were ready and she made an appointment to for me to come in.  As we were on the phone she puts me on hold because she had to answer another call.  When she comes back on the line, she asked if I wanted to come in today because they had a cancellation.  Yes.  Yes I do.

Got to the appointment; Dr opened my file on the computer and began reading up to familiarize himself with my situation. He does this every appointment and prefers that his patients not talk during this time. I'm used to it now, so I get in and just zip the lip.

For the first time since I had been seeing this guy, he went all "Sciency" on me.  He started explaining sinusoidal waves (which I already knew - thank you Math degree) and the different ranges of normal waves vs waves that are out of the spectrum including higher frequency waves and slower frequency waves.

It was about this point that I realized he was gearing up to tell me something.

My left temporal lobe (above mt left ear, give or take a few inches in any direction) has a slower frequency with spikes.  Now I am not a neurologist, but that doesn't sound like it would would fit in the standard definition of normal.  It doesn't.

I have Epilepsy.

Initially he referred to the spikes as epileptic in nature, but I flat out asked him to clarify, I needed something more tangible than epileptic adjacent, so he did.  It's an epilepsy diagnosis.  Period.

I forced my brain to slow down and ask questions because my initial reaction would have had me say "Ok then, thanks very much" and walk out as if somehow I only had epilepsy in the confines of this room and if I leave then it isn't real.

But I didn't.  I stayed and asked questions:

1. Does my kind of epilepsy respond to medication? - Yes.
2. Will I be able to drive? - Yes, with medication and 6 months free of seizures (I am currently going on 5 months with no seizure right now)
3. Is there a chance of Celiac/Gluten interaction? - Not likely, although some epileptics have noted that they have IBS symptoms.
4. Any dietary restrictions or things that could help the condition? - None specifically, other than eating a healthy diet.
5. Can I still drink wine?  Yes, in moderation.

We are now going to wait until I have the MRI done in June to see if anything shows up there.  Perhaps a scar or lesion on my temporal lobe is causing the issue, who knows.  But we'll deal with it when we get those results.

Once all results are in, he is going to contact MPI.  My licence returning in January was conditional on a providing EEG results within a year.  So we are going to wait until I have been 6 months without a seizure and been on meds, so he can write to them and say, "I recommend that this individual continue to have their license as she has been seizure free for 6 months and is on medication to prevent any future occurences... blah blah blah ".

I walked out of his office with a mixed bag of emotions.  I was happy to finally get a diagnosis, scared and a little shell shocked at getting said diagnosis and uncertain of what it really all meant.

I was holding it together until I got on the bus to go home and I texted Brad and Debbie. I fell apart and started to cry.  Crying on public transit is never ideal, so I did try and reign it in somewhat.

In a weird twist, this day was also filled with irony.  Brad and I have been toiling with the idea of selling our Rav4.  I haven't really been driving since March of 2014.  Brad can't drive two vehicles at once, so we thought it might be a good idea to sell the Rav rather than letting it sit and pay insurance on it.

We made the decision Wednesday to sell it.  Brad took the photos and I made the Kijiji ad.  Post went live about 10:30 pm Wed night.  That night and all Thursday, Brad's phone just blew up.  There was more interest in the Rav than we ever could have hoped.  I wasn't even convinced that it would sell on Kijiji, but I knew that we could get more for it there than if we sold it to a dealership.

As I walked home all puffy eyed from my doctor visit, Brad was at the door holding a pen.  The Rav had sold to the first guy who contacted him, less than 24 hrs from when we first put up the ad.

The irony of selling the Rav on the very day I get my official diagnosis (which allows me to drive) is not lost on me.Honestly, what are the chances of that happening?

The good thing I suppose is that we can use the money from selling it to pay off some debt, landscape the house, put in a deck/fence and then look at getting a new SUV in the fall. I'm secretly leaning towards a Chevy Tahoe.

I'm actually quite grateful to Zach for this diagnosis.  Up until January, we thought I was fainting, as we could only go on my description because no one else had witnessed it.  All the tests we were doing were trying to determine the cause of the fainting and nothing was showing up.  But in January Zach saw me have one and said I didn't faint, but rather stared into space for 10 seconds, which is very different than how I perceived the event.  Bringing that to my doctor led us down a different path of testing and 4 months later, I have a diagnosis.

So there you have it.  Epilepsy. Right now, I just feel grateful. Grateful we figured it out; grateful it's treatable; grateful I never had a seizure driving and hurt anyone; grateful I will be able to drive and more than anything else, grateful for an extremely supportive loving husband who said and did all the right things last night and made me feel loved and safe.

Life is good.


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