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Scheherazade in Blue Jeans
freelance alchemist
Seizure Lass Rides Again 
17th-Oct-2014 10:35 am
Just a brief catchup before I dive back into the novel (assume all silence these days is due to the novel, btw).

The story so far: Diagnosed with epilepsy in 2003. Years of hell meds that pulverized my brain and body in various ways. Declared independence from anti-seizure meds in 2012. Seizures well-controlled through lifestyle choices (sleep dep and stress are my biggest triggers); I occasionally get a simple partial, but that's infrequent.

Couple weeks ago, I got something new: full-body violent shaking. Huh.

So I went to my doctor, who sent me to a new neurologist (I quit the last one because she was unresponsive when I was having life-threatening side effects on my last seizure med).

Me: *tries to give nutshell story-so-far*
Neuro: *keeps interrupting and asking questions that make it clear she's not listening*


Neuro: "Who diagnosed you?"
Me: "Oh, it was back in Atlanta - [HELL DOCTOR] at [HELL UNIVERSITY]."
Neuro, visibly brightening: "Oh! I studied under her! She's up here now, at [other medical group]!"
Me: *attempts to keep from visibly recoiling*

So, y'know, that set the tone.

*rubs temples*

So. There was a long appointment of her talking over me and not listening to me.

Neuro: "So what happened a few months ago?"
Me: "Weeks."
Neuro: "But before that, a few months ago?"
Me: "Nothing happened a few months ago. This happened two weeks ago."

Neuro: "So describe your seizures in 2003 - convulsions and....?"
Me: "No. No convulsions. Complex partial seizures."

Which I had already told her.

And the thing about neuros is that neuros like drugs.

Now, I am not opposed to taking medications that are actually necessary. I take Toprol for my supraventricular tachycardia. The Toprol controls the SVT well, and I don't get noticeable side effects from it. I take Lunesta because sleep dep causes seizures and I literally cannot fall asleep without Lunesta. I use my inhaler when I need it.

But every single anti-seizure med I've been on has given me massive unliveable side effects. And none of them reduced my overall number or severity of seizures more than my lifestyle changes have. So. I will not take them. They do not help. They always harm.

Try telling that to a neurologist.

Neuro: "But every seizure is potentially life-threatening, and there's the risk of sudden death, and..."
Me: "And some of these side effects are life-threatening, and SUDEP happens to people who are on medication too, and every single drug on your list has the warning "may cause increased seizures" on it."
Neuro: "...there's Vimpat? That's new?"
Me: "Heart-related side effects. I have SVT that's perfectly controlled right now and I am not messing with that."

So nobody came out of that happy.


So the plan is to keep going as I have been and hope I don't have another of those Mystery Events. If I do, I'll be talking to my regular doctor - and next time I see him, I'll be talking to him about this appointment and advising him not to send people to this neuro on the grounds that she Does Not Listen.


On the plus side medically, my genome has been fully sequenced! Next doctor appointment, we'll hopefully know what kind of mutant I am.
17th-Oct-2014 03:00 pm (UTC)
Ugh. Doctors who don't listen are the worst. Not like you need me to tell you that, though.

Keep us posted on your impending mutant superpowers. I suspect yours have something to do with snuggling.
17th-Oct-2014 03:00 pm (UTC)
Among other things. :)
17th-Oct-2014 03:19 pm (UTC)
This is pretty much the opposite of what I'd hoped would happen.
17th-Oct-2014 03:25 pm (UTC)
Yep. Me too. :( A friend gave me a recommendation for a neuro who's a bit of trouble to get to, but travel's worth it if the fit is good, so I'll be investigating that next.

(The bonus fun, of course: Since I can't drive due to the very condition I'm seeking care for, finding that care is much more difficult...)
17th-Oct-2014 03:29 pm (UTC)
Would your health insurance cover a driver? I know people for whom this is true, but I don't know if they have the same insurance as you. They can only drive you to/from appointments, no where else.
17th-Oct-2014 03:45 pm (UTC)
Probably not, but can look into it.
17th-Oct-2014 06:19 pm (UTC) - Can you find another "guardian"?
I seem to remember that Aries helped you with this problem once by going with you and just looking big and menacing... (or something to that effect--he had a way of looking like a Mob guy with the right pair of dark shades)

Is there someone else who could fill that role?
17th-Oct-2014 06:21 pm (UTC) - Re: Can you find another "guardian"?
*hugs* I got a little teary partway through the appointment yesterday thinking about exactly that; didn't put it in this post because I didn't want to ambush you with his name on your friendspage if you were having a rough day. But yeah, I missed him hard yesterday.

I need to see about that.
17th-Oct-2014 07:17 pm (UTC) - Re: Can you find another "guardian"?
Fwiw, my dude is, um, easily overwhelmed by doctor's offices, and not very intimidating, or I'd suggest him. and I'm OK at it for myself, but doubt anyone else would take me more seriously than you.

Maybe lbitw? I think of him as useful and possibly intimidating...

I'm trying to think if my dad knows any people but I think he's in the wrong kind of neuro-stuff.

17th-Oct-2014 08:15 pm (UTC) - Re: Can you find another "guardian"?
Yeah, I got a little teary reading it for the same reason.

*HUGS* S'ok. There is always something that reminds me.
19th-Oct-2014 07:56 am (UTC) - Re: Can you find another "guardian"?
I am lucky. While I am certainly not a huge mob hitman, I *am* big. And I can do threatening and rumbling loud, and long ago, I mastered the


It works on almost everyone but ER doctors (it works on ER residents, and nurses mind. just not attendings, who are often super full of themselves. But Neurologists, no problem).

This week is not great for me. And obvs, I can't drive you. But if you need an advocate to go with you to back you up in November, take me.
18th-Oct-2014 12:28 am (UTC)
Wishing really really hard that you lived in Chicago or somewhere where traveling to Chicago wasn't unreasonable; I had an Unresponsive Neuro, and she sucked, but now I have The Best Neuro Ever, and I wish you could see him.

*major hugs* There IS a light at the end of the tunnel, no matter how long the tunnel happens to be.
18th-Oct-2014 06:06 am (UTC)
Damn. For some reason I had thought that Awesome Doctor was your neuro (...or, was, like, also a neuro? Or, who knows, I'm an idiot as that is clearly not the case is the point), so that is... extra shitty icing on the crap sundae. :(
18th-Oct-2014 01:47 pm (UTC)
Nope, he's primary care + geneticist. So at least I have an awesome PCP!
19th-Oct-2014 01:11 am (UTC)
I'm so sorry you had such a bad experience with that neuro. I've had good results with a neuro at Mt Auburn--he listens, and he's concerned about minimizing side effects. He's even willing to work with my priorities. (I'm willing to accept occasional partial seizures, in order to keep side effects down.) But I do take some anti-seizure meds, and it might not be worth your while to consult him if you're ruling them all out.
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