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Old 01-24-2017, 11:44 AM   #16
Clodfobble
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I'm just very experienced at smirking, is all.

Also, I'm officially sick of this shit. I've had a headache ever since they put it on, and all I want to do is sleep all day. I have some mindless work I could do (transcribing interview audio) but I can't even manage that. The EEG nurse hasn't called me back, and very soon we will pass the deadline where I couldn't make it to the office in time even if she did say "Come get it off a day early," because I have to go pick up the kids from school.

But I did manage to get a tank top on, at least.
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Old 01-24-2017, 12:29 PM   #17
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Tank top. January.

Little bit jealous.
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Old 01-24-2017, 03:04 PM   #18
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You'd be less jealous in the summer when it's 110 outside.


Also, FREEDOM! She called just after I posted, spritzed collodion remover in my hair ("may melt soft plastics," so obviously it's super-great for skin and hair...), and took the damn thing off. Yay! Now I just have to keep twitching until my followup, wherein they will (most likely) up my meds and I can finally sleep at night again. Huzzah.
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Old 01-24-2017, 05:35 PM   #19
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Well you got to be an Ood for a couple of days anyway.

Now you can write a book about it!
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Old 01-24-2017, 05:38 PM   #20
Clodfobble
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Nah. I'm busy writing someone else's memoir.
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Old 01-25-2017, 06:55 PM   #21
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The picture looks like you photoshopped your face over a magazine ad. Not that I think you did. Just looks like it is.

Also... You have heterochromia? Or is that a reflection. I don't remember you having that... And if you do and I forgot it, but remember that you have 2 other different things, I'm an asshole.
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Old 01-25-2017, 09:01 PM   #22
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It's just a reflection in the mirror from the overhead light. Now that I look at it, neither eye is representative of my actual eye color, which is kind of a murky greenish. Not blue, but not what you would call obviously green either.
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Old 01-25-2017, 10:46 PM   #23
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Quote:
Originally Posted by Clodfobble View Post
Doesn't this look like fun? --snip--

Once they had the wires in, they went ahead and did the regular series of challenges, like flashing strobe lights right in my eyes. This successfully caused some seizing, which is a first since all other recent challenges have been successfully medicated, but not surprising since twitches-despite-medication are the whole reason I'm in their office. The EEG tech couldn't tell me anything, of course, but she was already making hints about "sometimes they don't always make you do the full 48 hours," and wants me to call her tomorrow to let her know how it's going, which to me says, "Oh yeah, we definitely already got what we needed, I just have to give the results to the doctor before they can officially cut this 2-day nonsense off early."

On the one hand, everything itches. But on the other hand, I get to smell like electrode super glue. So, you know. Pros and cons.
Well, all of it really.

When we made periodic visits to Children's Hospital for SonofV's EEGs, we were instructed to wake him up several hours early so that he was sleep deprived when he got hooked up. That was a pretty reliable contributing factor, when combined with the flashing lights.

I've sat through a number of these, as a close spectator, not the star of the show. And it kind of broke my heart one time when over the course of the last thirty minutes where they let him sleep while recording, I sat close by, watching carefully. I counted eight seizures while he slept. I remarked to the technician operating the system afterward as I was looking at the traces, he said, "I counted forty."

Wha...?!

My poor little kid was having a seizure (under these conditions, true) about every 45 seconds?! His seizures were mostly of the absence variety, though he would sometimes have tonic/clonic seizures too. They usually lasted about ten seconds or so. I can see now how that could have a *serious* impact on what he got out of the lessons at school.

Imagine having 10-25 % of your minutes in class drowned out completely, sight and sound, and you don't know when.

He's still seizing when he's careless with his medicine or his rest. Broken teeth, road rash, broken/lost glasses, phones, etc.


well. now I have hijacked your thread Clodfobble. Sorry. Just brought back some powerful memories. I sincerely hope you're able to find a way to cope that lets you live how you want to live. Truly.
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Old 01-26-2017, 07:01 AM   #24
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Thanks, V. I'm really sure it will work out fine. My big fears were Parkinson's (my epileptic uncle has it) and a brain tumor (my father-in-law died from one--which I realize has no bearing on my genetics, but I think the universe has a sense of irony and it would be like a fucking Lifetime special for Mr. Clod to lose his father and his wife to brain cancer and be left raising two special needs kids alone.)

Anyway. I have been experimenting with CBD oil while I wait for my followup appointment. (We had some in the house because we tried it with Minifob once, but saw no change.) It's definitely making a difference for me. Twitching is down from a strong twitch every minute or two, to a tiny one maybe every few hours. My doctor's office is supportive of the treatment in general, but I suspect they'll still want to play with my meds unless I find a dose/brand of CBD that completely gets rid of all of them.

Also, my family is pissing me off. I've been talking for 15 years about my seizures, and my medicine, and my diagnosable EEGs performed by multiple neurologists, and how the symptoms will inevitably go muscular someday as I get older because that's just what happens, and now I've been talking for a month about my muscle twitches... and when I mentioned that I physically seized under the strobe lights, they got all emotional and acted like this was the first time they'd ever heard the word epilepsy. To me it's basically a giant admission that they never really believed any of it up until now. And this is why I avoid trying to explain sensory seizures to people. Because when you say "powerful deja vu, with a huge adrenaline dump and auditory hallucinations," people always decide you're imagining it and/or making it up for attention. Fuck all of them.
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Old 01-26-2017, 07:16 AM   #25
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Maybe they've heard so much about the kids and your relentless pursuit of treatments to try, they've become numb to anything that isn't a (to them) sudden calamity. It doesn't mean they don't care, it's just twitches don't connect to anything in their minds. OK, I'm talking out my ass, I've never even played a shrink on TV, but maybe?
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Old 01-26-2017, 09:05 AM   #26
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Yeah, I know they care. It's just the fact that they care now that's irritating. Maybe it's less that they didn't believe me, and more that they live in denial most of the time. They're "cross that bridge when we get to it" kind of people, and I'm an "I've drawn up a tactical map of every bridge in the state, just in case" kind of person. They've also always waved it off when I point out that both my kids have a 30% chance of seizures just from the autism, and an even greater chance when you consider me. They don't want to hear it.

(It's going to be Minifobette, incidentally. She's 8 and she already talks about having deja vu on a regular basis. I've asked her repeatedly about other symptoms, but she says no, for now it's just deja vu. Minifob claims he's never had that feeling.)
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Old 01-26-2017, 12:28 PM   #27
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You have to admit you're deeper into symptom/cause/effect than anybody on the block and likely most Doctors.
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Old 01-26-2017, 04:23 PM   #28
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<------I'm sorry. You can give me a new user title if it'll help.

Quote:
Originally Posted by Clodfobble View Post
... Because when you say "powerful deja vu, with a huge adrenaline dump and auditory hallucinations," people always decide you're imagining it and/or making it up for attention. Fuck all of them.
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Old 01-26-2017, 06:59 PM   #29
Clodfobble
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I should take the opportunity to make up something clever, but honestly, this is what I think of every time I see your username:

SEXO-bon-bon sexo-BON-bon
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Old 01-26-2017, 08:52 PM   #30
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