Monday, September 3, 2018

And Even More Neurological Bewilderment

Yeah.

I'm obsessed with my brain and my EEG's.

The crazy thing is, I'm not really worried about myself. Nor do I want treatment.

I'm just fascinated...and very frustrated.

I've been studying EEG stuff via YouTube and various websites.

I've been looking at the EEG snapshots DFW Neurology has given me, and I've been reading the report they provided.

There are things that don't add up. Or at least they don't SEEM to add up. I've drafted an email, to them, that I'm going to send after the holiday weekend is over. I have a feeling DFW Neurology is going to provide me with an answer that seems logical on the surface. But after I think about it for an hour or so, I'll realize they were trying to trick me into thinking they're logical people. 

First of all, they provided me with 10 printed snapshots of my EEG.  I had asked them, in my angry email, to provide snapshots of my seizures so I can show them to another doctor. I'm HOPING this is what they've given me. It wouldn't be logical to give me snapshots of when my brain was acting normally and expect another doctor to be able to provide a valid second opinion from that.

The EEG pictures they sent me do look spikey. But I can't tell for sure. The thing is, I get confused between epilepsy spikes and eye blinking artifacts.

There's a chance DFW Neurology sent me home with pictures of my eyes blinking. Interesting, I suppose. But not very useful.

If they DID send me home with pictures of my seizures, there's a contradiction.

The doctor had told us, after I asked, that there were no seizures when I had pressed the button. Yet 7 of the snapshots, have a little marking where I pushed the button.

2 of the 3 that do not have button pushing marking are sleep snapshots.

Wait! I think I just noticed something. The three that do not have a button-marking have a thing that says SpikeGen followed by various brain locations and the numbers.

SO maybe DFW Neurology gave me a combination of things—snapshots where I pressed the button and snapshots from when the EEG software picked up epilepsy spikes.

Though that leads to another contradiction.

The report says under sleep EEG-All stages of sleep were obtained and sleep is considered to be restful. There are no reported events with the event trigger or diary entry in sleep. No clinical, subclinical, or electrographic events were observed. There are no focal or paroxysmal waveforms.

Yet two of the snapshots they've given me of sleep seem to say I was having spikes.

Maybe they determined the spikes weren't significant. Okay. That WOULD make sense.

BUT...then why send me those particular snapshots?

One possibility is, I'm wrong about them being sleep EEG's.

I just assumed that they were since they happened at 11:37 PM and 4:41 AM.  And despite some maybe (small) spikes, they look quieter than the other EEG snapshots they gave me.

There's another thing about sleep. This is probably stupid and picky, but...

I don't sleep straight through the night. I wake up often to pee and deal with cat issues. Then sometimes I have insomnia.

I had expected to be questioned about this—maybe get a bit of a lecture. I think it was a fair expectation. Sleep is extremely important to our health, and I would expect a doctor to be concerned.

She said absolutely nothing.

And why is there absolutely nothing about it on the report. Even a simple, All stages of sleep were obtained, and though broken, the sleep is considered to be restful.  

Now I'm looking at the 8 button pressing pages.

If they are not seizures, why did they provide me with these pages?

I pressed the button much more than 8 times.  It was probably double that a day—maybe more.

Did they just want to show me what my brain looked like at some of the times that I FELT like I was having a seizure?

Well, I'm going to move onto some other bewildering things on the report.

Wait.  I just found something else. I hadn't carefully read the technical summary yet.

It says here: The EEG is notated with patient events at the direction of the patient by depressing a push button mounted on a waist worn EEG recording device. Computer-generated spike analysis was performed and the EEG is notated with events that were determined to be of significance by the digital analysis software showing automated spike detections and automated seizure detections. 

SO it seems they did send me home with 7 pictures of where I felt I was having a seizure and 3 pictures of when the computer thought I was having a seizure.

I'm picturing this conversation with Alexa.

Me: Alexa, I don't feel well.

Alexa: No. You are completely fine. But 20 minutes ago, you were not fine.

Me: But I felt fine 20 minutes ago!

I'm not sure, though, if my maybe-seizures weren't connected to the button-pushing. Because, at least with the myoclonus, the button would be pressed AFTER the incident.

Myoclonus is a quick surprise. I can't very well press it while it's happening. Plus, in order to press the button, I had to unzip the backpack and dig around searching for the damn button.

The snapshots they provided me represent 9-10 seconds each. So the previous pages, that I'm not seeing, might have had seizure-spike-things.

If the neurologists and tech were very smart, I would have assumed they checked back a few pages. But I don't get a sense that they are very smart.

One last strange thing (for now!)

Under a section labeled, Push Button Events, it says There following events were noted in patient's diary.  (just noted their typo thing there).  Then under that, DFW Neurology lists what I had been told to write in my diary. This is my eating time, pill-taking time, and bed time.

From what I've read on other websites, I've gotten the idea that patients are supposed to ALSO describe the symptoms they were experiencing when they pressed the button.  As far as I remember, I wasn't told to do that. And Tim was with me when I was given diary instructions. He also doesn't remember the tech telling me to do so.

I wouldn't have pressed the button while eating or taking my pill, so why are these things listed under push button events?

I'm done with the strange things.

Now I have a purely annoying one.  One of the last things the report says is, Patient refused video monitoring so it is difficult to clinically correlate this EEG finding.

It makes me sound like a difficult patient.

You know what, though? I AM a difficult patient. And I'm glad I am! I think patients need to be difficult...if difficult equals refusing unnecessary testing, demanding logical answers and, doing our own research.  It's not safe to be an easy patient who takes the doctor's opinions as gospel.

I refused the video EEG for three reasons. A) extra cost B) invasion of privacy. C) my symptoms are very rarely visible.

If C was not true, I might have put consideration into giving in regarding A and B.

Here is a website listing examples of focal seizures—the kind of seizures where the person is fully aware.

The symptoms listed under non-motor:

Feelings of fear, anxiety, anger, or pleasure

Changes to your vision, hearing, smell, or taste

Having sensations of being hot or cold

Seeing or hearing things that are not there

Feeling like your body is distorted

Feeling like your body is missing or doesn't belong to you

Feeling or being sick

Changes to breathing, heart rate, or skin tone.

Deja Vu

Difficulty Processing Language

I am pretty sure most of these things would NOT be seen by a video camera...unless it was a magical camera.

I find it disturbing and insulting that DFW Neurology thinks they have to rely on a video camera instead of relying on what I tell them I'm experiencing.

That being said, when I first saw the doctor after getting the seizure-news, she bombarded me with questions about symptoms.  It's hard talking to her, though, because she has this way about her. It's like she's in a hurry and....

I can't explain it.

Maybe it's that her way of talking is very rapid and intense?

I tried to tell her about my weird/bad feelings. Or I just wanted her to take my word for it that I'm having weird/bad feelings. But she kept demanding that I be more specific.  From what I remember, she was asking me where in my body the feeling occurred. I told her it was all over, and she wouldn't accept that.

It was damn annoying.

I think most doctors have a very hard time tolerating the idea that some symptoms are indescribable.

I have a feeling that there are symptoms missing on a lot of medical websites, because doctors refused to acknowledge those that can't be described in simple terms.

Though I am grateful to have seen some sites where it's acknowledged that some epilepsy symptoms are indescribable.

Anyway, if there are any doctors out there who listen carefully to their patients, believe their patients, and can tolerate some confusing answers by their patients....well, I hope lots of wonderful things happen to these doctors. They deserve wonderful things.