It's called an ambulatory EEG, bitches
 

Doesn't this look like fun? It's just like a regular EEG, except instead of hooking me up to a machine and making me lay there for an hour, hoping to catch one of my myoclonic spasms in person, they hook the machine up to me, and send me off to live my life for 48 hours. Or at least as much of it as I can manage while looking like I escaped from a hospital.

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.

Cool. Will they give you the data? I'd want a copy if they did that to me.

Very stylish.

Love your do-rag.

Not the raw data, I bet. It's probably some proprietary kind of file that goes along with the portable machine. But they might do a jpeg screen capture or something if I ask really nicely. The last time I had one there was nothing to show, so they didn't show me, and the one before that was old-school paper style, and they showed me that but I didn't get to keep it because it was an original and had to stay in my medical file.

Clodpunzel, Clodpunzel, let down your long techno-umbilicus.

Thats nothing. My exGf had to have a heart monitor thingy for 3 weeks!
Oh, and Dayum ... even all hooked up to that crap you're still hot as hell.
(Beat you to it Grav)

You're still a super cute, dishy broad. ;)

I see you're color coordinating with the wiring harness so it doesn't stand out so much. Good idea. All you need to complete the outfit is a black Stetson and you'll be my favorite outlaw.

Ha! No, the sad thing is, I only own 3 button-up shirts, and the other two are long-sleeved. It's warm here today. So much so, in fact, that I already sweat through that shirt, and I'm now wearing one of Mr. Clod's.

I had one of those , but I live so far out in the sticks that I only wore it when I went to town.

tarheel

Be careful those pesky Russkies don't hack the results! :lol:

I think you're just trying to suck non-existant fat from your hips and implant it in your noggin to make your brain look even bigger

Science gear!

That is the cutest picture ever. You look adorable.

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.

Tank top. January.

Little bit jealous.

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.

Well you got to be an Ood for a couple of days anyway.

Now you can write a book about it!

Nah. I'm busy writing someone else's memoir.

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.

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.

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.

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.

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?

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.)

You have to admit you're deeper into symptom/cause/effect than anybody on the block and likely most Doctors. :haha:

<------I'm sorry. :sniff: You can give me a new user title if it'll help.

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

;)

/resume hijack

SonofV had another seizure this morning.

I got a call from his phone by a fellow from the Seattle Fire Dept. Face messed up, glasses missing a lens, calling from the bus where it happened.

I'm on my way to the emergency room. He's being wheeled into xray now.

Good news: when your phone lights up with your kid's number.

Bad news: when the voice on the call introduces themselves as Joe from the fire department.

Fuck.

Damn, dude, hope everything turns out as good as possible.

Prayers and good vibes.

:fingerx:

Damn, sorry man. How old is SonofV now?

Super fucked. Sorry to hear thta V. I hope the SOV feels better soon.

Update please ... very worried - text me if needed.

God, V. Hope it gets better.

Hey everybody.

SonofV is with me. We're gonna be OK. God, what a day. Got on the bus, next thing he remembers is the paramedics talking to him. In the meantime, he had face planted somewhere. Glasses broken, lens popped out, blood everywhere, broken nose, a mess.

Xray shows a closed nasal fracture and he got ten hydrocodone for his trouble. We spent the day getting his insurance sorted out, etc.

We also visited the corner pot shop checking out the CBD options. Just starting my learning process.

Sigh.... Anyhow we're on the ferry now, I invited him over, I just am indulging my inner mother her, clucking over him.. Clodfobble, he's almost 22. I'm pretty tired. Gonna rest for the balance of the crossing. Talk to you guys tomorrow.

Glad he will be ok. That's really scary.

Broke his nose. Damn.

Get that boy some bud. Or a Bud.

And a lap dance.

Major neurological and psychiatric problems can be absolutely terrifying for everyone involved. Once, while in the middle of an emergency move, I found my then-35-ish sweetie curled up in a ball on the kitchen floor of the new place shrieking about spiders climbing up his back under his shirt. I checked to make sure there weren't any (smart choice, since we later found out the place had brown recluses AND black widows), called his case manager, then called 911, who sent us the paramedics from the volunteer fire department. None of them could get near him, and every time they tried to touch him he'd start screaming again--by then, while pretty much wrapped around my left leg like a panicking python. Turned out to be a stress-triggered disassociative event related to the brain damage Effexor left him with. We were halfway to the good hospital (35 miles away) by the time he even recognized me.

My father (in paperwork and name, tho not my male parental bio-donor) is a smart, quiet, educated, soft-spoken guitarist. He has Asperger's AND Major Depressive Disorder. MDD is often misdiagnosed as PTSD. He also seizes in his sleep, but that is believed to be related to some unwise dietary choices.

My mother (actual genetic mother) is a train wreck. From stories she's told, I'm pretty sure that both she and her mother suffer (past tense for horrible, awful grandmother) from Social Anxiety Disorder. I am 100% sure I have seen my mom have panic attacks, and I almost had one the first time I saw my dad's hands tremoring like he had Parkinson's. Her anxiety will remain untreated until a doctor or psychiatrist she trusts issues a definitive diagnosis.

Clod, that cap-and-wire setup looks like it would, indeed be incredibly not fun to haul around for any length of time. I'd still rather that than another electromyelogram! I've had 3 now and the bruises from a couple of nicked blood vessels during last week's are finally fading. For those who've never had an EMG, well, let's just say that unless you really really like electricity and needles it's a bad choice of hobbies.

I hope they get you sorted out safe, and you're welcome to imagine me responding to your family's implied disbelief with a line from a conversation several years ago when I was in Oregon and too close to some places with very bad memories: "I'd flip you off with my feet if I could!"

BigV, glad to hear yours worked out safely and I hope you never have to endure the like again!