Medical

[shadesong]

My words to the neurologist's secretary yesterday, the magic words that got me squeezed in today, were "I think I may have had another seizure, but I'm not sure."

Hearing voices like a radio on low, shadows acting weird, and a splash of vertigo. Just for a minute or two, but enough to freak me out for the rest of the night; this was Sunday night, and it was why I ended up crashing on the couch with the Oscars still on. Adam wasn't home, and the bedroom was too dark and quiet.

My neuro said it sounds like a simple partial seizure, rather than a complex partial seizure, because I didn't seem to lose consciousness; my complex partial seizures are very distinct. I slip into them. I feel myself slipping. That didn't happen. What happened was simply that the world got Weird.

This is a very important distinction, my neuro says, because you can still drive if you have simple partial seizures. You can't if you have complex partials. But this was a simple.

Ah! And you know how, when you go to the doctor, all of your symptoms/side effects are sort of on vacation and you feel all stupid about not being able to show them what's happening? Not this time, baby. I nearly fell over while walking heel-to-toe, and when told to hold my hands out, the tremor started in my left hand. And got worse. Mexican jumping bean, my left hand. So I got to show the nurse what's happening, which is Of The Good.

The nurse: "What are we gonna do with you?"
Me: "I don't know..." *laugh*

The doctor, upon arriving: "Well, uh, you've failed another med..."

This is taking a long time to write, because I just keep pausing.... I'm just so tired, and I don't just mean physically...

So now I'm going on Topamax. She says the effects I'm most likely to get are weight loss -

Oh yeah, my old friend weight loss. I've actually managed to keep further weight loss at bay these past few months - by eating like a leetle peeggy all the time, I'm maintaining at 91.2. But. Weight loss. *sigh* She says that's a loss-of-appetite thing, so hopefully I can get around that, because I've had no appetite for over a year now and have trained myself to eat anyway.

Anyway, side effects = weight loss, tingly extremities, possibility of kidney stones, possibility of glaucoma; I see a lot more info on this site, lots of cognitive upfuckery, which she did not tell me about. Hopefully that's because it's unlikely. If that shit happens, I quit this drug, man.

It seems to be prescribed more as an adjunct than as monotherapy, but that's been the case with some other things they've tried me on as well. They just have to walk a fine line with the drugs they give me, as I am petite and unpredictable.

Anyway. Yeah. Wish me luck...

Comments

[eyewrist.livejournal.com]

*hugs*

Can they give you anything to stimulate your appetite? Or would that interfear with your other meds?

[shadesong.livejournal.com]

Don't know...

Oh I do

[wlfspirit.livejournal.com]

I do wish you luck, I am so sorry for my original comments when You asked for help finding a scale hun, I should have made myself better informed before commenting, please do forgive my ignorance.....a lesson learned for me.

Re: Oh I do

[shadesong.livejournal.com]

No worries! You're not required to research a person before you make a comment. :) And a lot of people do pursue weight loss to an unhealthy degree. Me... not so much.

I'm just glad I'm managing to stay above 90. And I really most sincerely hope that the Topamax doesn't cause another precipitous drop...

[miintikwa.livejournal.com]

Ugh.

*big hugs*

I may be finding myself a neurologist. The headaches are worse, and accompanying them is some stuff that my doc said yesterday 'doesn't sound good.' Add to that the fact that I've had an attack of Bell's Palsy, and he says he wants a cat scan for me.

Fun.

You. Are. Not. Alone. *hugs* (And neither am I. Thank dog.)

love ya.

[shadesong.livejournal.com]

Eeee. Suck. Luck to you, honey.... *hug*

[brujah.livejournal.com]

I know two people on Topamax for migraines. Both had mild nausea and shakes for about two weeks. One of them has no side effects now and the other has mild dizziness from time to time. Neither said they'd any problem with cognitive/brain function/thought processes. Perhaps you'll be as lucky.

I sort of think your prescription will be higher in mgs, but I don't know.

*kisses your brain owie better*

Wish there were something I could *DO* dammit.

[shadesong.livejournal.com]

One of them has no side effects now and the other has mild dizziness from time to time. Neither said they'd any problem with cognitive/brain function/thought processes.

That, I could *totally* deal with!

Wish there were something I could *DO* dammit.

Yeah, I know... me too!

*hug*

[avivasedai.livejournal.com]

Good luck, honey.

*another hug, then back to work*

Re: *hug*

[shadesong.livejournal.com]

Thanks. :) *hugback*

[rhiannonhero.livejournal.com]

'song, I'm sorry if you've answered this before. I'm curious about what would happen if you stopped taking the drugs? Could permanent damage occur? I read your description of a seizure (terrifying) and just wondered beyond the usual of falling and hurting yourself, or not being able to drive, etc, if there was a necessary reason, beyond hoping to achieve some kind of normalcy again, that you have to take the drugs? I'm sorry if this is an uneducated and callous question. I simply don't know. :)

[fiddledragon]

Yes, there is indication that seizure activity - even partial seizures can do permanent brain damage.

And honestly, even during a simple partial - that's not something I would want to drive though. I panicked not being able to read through a presumptive one. I could see the page, I could see black things that I knew were words, but I couldn't make heads nor tails out of them. I could not read, which scared the daylights out of me...didn't last long at all - maybe a couple of minutes, but then I was just too confused and tired to even try for the rest of the evening.

I've also played violin through a presumptive one.

(I say presumptive because while my primary doctor things I'm having them, and feels EEG results support his supposition, I haven't had it confirmed by a neurologist yet).

[wispfox.livejournal.com]

Oh, ick...

Much luck, hon!

[shadesong.livejournal.com]

Thanks... *hug*

[enderfem.livejournal.com]

Oh sweetie, I am so sorry you have to go to another med, but I hope this one works out for you. I am so glad you seem to have a doctor who listens.

*pets the hurt brain*

[shadesong.livejournal.com]

*nods* I got lucky with this doctor! My first doctor just... was not good.

[tinhuviel.livejournal.com]

Well, damn. That sucks rhino but, that does. I hope things level out for you soon.

Shall I light a candle for you?

[tinhuviel.livejournal.com]

that should read "rhino butt"

::smacks self::

[zarhooie.livejournal.com]

Mummy says watch your caloric intake on topomax. She recommends a nutritionist if you lose even 1 more pound because, even being wicked short, you are Too Thin.

[shadesong.livejournal.com]

Tell her I try to eat as much food as possible, due to the effect the other meds've had.... I ain't dieting. :)

My insurance won't cover a nutritionist. :(

[illman.livejournal.com]

Oh, Topamax is soo much fun. NOT. I've been on it since last April in combination with Lamictal. Most of the side effects have leveled out by now, except for the cognitive mess and the weight loss (it has slowed a bit and I eat loads to keep my weigth up)
As for the cognitive shit, I've read that it's only occurs in 5% of people on Topamax. No idea whether that's true.
Another side effect that I got early on during working up to the final dosage was that Topamax made me feel totally flat and disinterested in everything. That always faded once I had gotten used to the upped dosage.

Good luck with Topamax.

[shadesong.livejournal.com]

How much weight did you lose?

*crosses fingers*

And I'm sorry your experience is sucking so much ass...

[kenakari.livejournal.com]

::hugs::

Hope this medication works for you, with minimal side effects.

[shadesong.livejournal.com]

Thanks. :)

How are *you* doing? When are you due?

[boutell.livejournal.com]

AAAA!

Good luck.

[brujah.livejournal.com]

I forgot to mention that topamax shouldn't be kept in the bathroom or kitchen. Steam and moisture will cause the medicine to break down and become less effective.

kluvyameanitbye!

[shadesong.livejournal.com]

Interesting!

[juliansinger.livejournal.com]

I know someone on Topamax (for migraines). She's got the cognitive upfuckery, though subtly -- it mostly interferes with concentration, for her.

Bleh.

Certainly good luck.

[malver.livejournal.com]

On Topamax myself and have been for at least the last two years (may have been ever since my doctor noticed that one of my meds was actively increasing my appetite, and I was overweight at that point by about 100lb+. Different situation, yes.) I've been having some problems with my limbs though I don't know if they're related, more jerky than tingly. (A bit of that sleepy-foot too, if that's what they mean.) So can confirm at least some of that, no clue what the cognitive etc is even supposed to mean in practice...

Re: Certainly good luck.

[shadesong.livejournal.com]

She just said "tingling", but the website said pins & needles, so I guess sleepy-foot, yes....

*hug*

[domanblue.livejournal.com]

All of us trileptites will miss you at the meetings. But ya gotta do what ya gotta do…

How in this world did you get your brain pics? I have tried everything to get a copy of my MRI’s and nothing! I even had the image place send a copy to a doctor friend and she says she never received them. My father had a heart attack about a month ago and when he left the hospital, they gave him a photo album of his heart. It's not fair.

I’m not surprised though. Neurology is an underworld practice. Everything is hush hush. Just try getting neurological research info from NIH. “You ain’t a doctor, you ain’t see’in nothin”.

[shadesong.livejournal.com]

All of us trileptites will miss you at the meetings.

Heh. :) You'll see me for another six weeks as I do the medshift; I'll bring cupcakes on my last day... :)

How in this world did you get your brain pics? I have tried everything to get a copy of my MRI’s and nothing!

I tried in vain for a while myself! I ended up poking around on the web and finding the people in charge of radiology's medical records. E-mailed them, provided my birthday and MRI date, and they said "Okay, you can come pick them up tomorrow." No charge.

Mine was in a hospital, though, so maybe - seeing the contrast between your father's case and yours - hospitals are just different...

[kyburg.livejournal.com]

Crap. Both you and being_homeless are now on the same meds again - after you both were on the same meds and having the same trouble before.

Medicine is called practice for a reason. Good grief.

[shadesong.livejournal.com]

Oy gevalt!

[mister-wolf.livejournal.com]

*hug*

[fmi-agent.livejournal.com]

oh geez. good luck hun.

when i hear stories like this, i get this fantasy that the doctor really has a very powerful cure-all prescription waiting, one whose only side effects are feelings of strength and bliss ... but, due to some secret-society oath or obscure Biblical passage or something, they can't give you that good one until you've tried all the other, sucky prescriptions.

it's good that you're so self-aware while trying all these meds. keep us posted.

[shadesong.livejournal.com]

Heh. It would be good to know I'm working toward something, right?

Also, I got your birthday postcard; thanks! :)

[pbristow.livejournal.com]

Oh, 'Song... [HUG]

"The doctor, upon arriving: "Well, uh, you've failed another med...""

BZZZZZZZTTT!!! Take that man out and spank him. And not in a good way.

Another med has failed *you*!
(Sometimes, these distinctions are not just a matter of being PC! =}:o{ )

[shadesong.livejournal.com]

Hee! No, I knew what she meant.

[stripedsocks.livejournal.com]

Good luck lady. I was thinking about you last night while I was at work watching my epileptic (dog) patient pace the room.

I sincerely hope this one works better for you.

[manifestress.livejournal.com]

I've been on Topomax for about 2 years and it's been my friend.

[shadesong.livejournal.com]

Seriously? That's really good to hear!

[call-me-harmony.livejournal.com]

I'm sorry to hear this song {{{hugs}}}}. Here's hoping you don't get the side effects from the new meds.

[vitki.livejournal.com]

http://www.bbc.co.uk/science/horizon/2003/godonbrain.shtml
http://www.bytrent.demon.co.uk/neurotheology01.html

[shadesong.livejournal.com]

Thanks for the links! This is something I've become interested in...