Archive for January, 2012
I wasn’t going to do crap on my computer today. However, something got me thinking (and worried!) so I just had to go online. Then I had to write this! It’s been a really big Epilepsy Discovery Day!
There’s “talk” in the media about Big Pharma phasing out some drugs that aren’t used so much, ones where there are alternatives, things are becoming more difficult to manufacture. They need to save money. Oh, dear god. My precious Clobazam/Frisium. I still need to increase the dose as I’m still seizing, still sick.
Nobody gets it though! For the Typical Absence Status Epilepticus (or at least my case) there are no alternatives! The only ones who understand are my medical team and pharmacists (and some Neurologists if they’re on the ball?) Clobazam is a benzo used specifically for epilepsy, and the best for catamenial problems! Catamenial is my problem!
Big Pharma isn’t saying diddly, of course. Saying diddly? Saying something that’s gotten me a little shaken up if the media (well, it’s the media) is correct? My pharmacy said I was the only customer who filled scripts for the med! A drug not used so much?
Well, I already knew my options were limited from the start. I’m already on two Anticonvulsants and there are a whackload more that are contraindicated. They exacerbate either Absence Seizures and/or TASE and/or even my IGE (idiopathic generalized epilepsy–no known cause, spreads to entire regions of brain, blah, blah…)
I already tried one before the Clobazam. The Evil Depakene. I don’t want to talk about that, as it has traumatized me for life. Well, alright. Seriously, though. It was UGLY! From the trauma, I can’t remember what I wrote exactly, but you can do a search if you’d like.
Two other Anticonvulsants are left. Ethosuximide/Zarontin is one. I would rather not touch one pill as the list of side effects is HUGE. It could turn out to be The Evil Zarontin!
The next is Levetiracetam/Keppra. As far as I’m concerned, Keppra is one of the most useless Anticonvulsants on the planet. Granted, I’ve never tried it.
First, it is one of the LEAST understood Anticonvulsants for mechanism of action. In fact, I will venture to say that it is not understood period. At least with others you might get a hypothetical, but with Keppra, “We have no clue. Take it if you want. Actually, here. Take these for free. Even we can’t tell if they’re the real thing or placebo.”
It also has quite the lovely list of side effects. Yeah. That’s a good choice. I think I’ll take a drug that won’t do squat, but will make me go insane.
So in reviewing things, at that point I was feeling pretty dejected. Would I manage to finally get all fixed up, just in time for Big Pharma to rob me blind again? Then I saw it. How did I miss it in the journal article? I guess I was too wrapped up in the above two and all of the other Anticonvulsants. I looked it up, and WHOA! Now, this is one FREAKADELIC drug!
It’s called Acetazolamide. If you don’t click on the link, it’s like, what is this thing? Some kind of “Superdrug?” How can it be used for:
- Dural Ectasia (a symptom associated with Marfan’s Syndrome)
- Central Sleep Apnea
- Acute Mountain Sickness
- Congestive Heart Failure
- Drug Induced Edema
- Decrease in CSF in Idiopathic Intracranial Hypertension
- Periodic Paralysis
Absence Seizures, Myoclonic Seizures and CATAMENIAL EPILEPSY!!!
There’s a bit about an “allergy” regarding the compound of the drug. I say I always have it in hospital, but it happened when I was about 18 or 19. Also, perhaps different. I won’t bother getting into that, though. Let’s not jump the gun.
I learned another new word today regarding my epilepsy and seizures, too. This is SO cool. I always thought it was a proprioception issue, but no. When I seize (and definitely if it’s more severe) I hold my left arm up against my side, and sort of across my chest and stomach. This is when I’m stumbling around with Wonder Cane or his brother. It’s called Supination. From a Neurological perspective, it totally makes sense.
I had a chance to talk to Server Boy and we managed to sort out the problem. At lest well enough, as things are now running. One outstanding issue, but I’ll see what he says. Still, it’s not impacting function as it was before.
So, if it’s working for me, it should be for you. The ftp LIED!!!
“Fallen Angel” by Alphaville
I AM SO PISSED OFF! I also think I’m allowed to scream right now. I must drag myself down to the shop where I got my Data Stick and my phone. The phone works just fine (so far…grrrr.) However, I will no longer put up with my shitty, fucking connection! I probably didn’t know it sucked the dribbling piss of rabid skunks after they’d already sprayed, since I haven’t been online for so long.
Yesterday, it took me a full day to do a few things that would only (should only) have taken a few hours. And speaking of hours, several days ago I was on the phone with their Customer Service Dept. I thought we’d made some progress as the damn thing wasn’t even set up properly on baby MacBook’s Network. Thank you ISP employees. Thank you product too, as you came with no instructions.
They didn’t listen to me regarding the the further Network problem (as they couldn’t get any further than what we did as far as Macs.) I kept telling them what I think is the problem. If it exists on my end at all. I’ve done everthing. Even REDONE everything on their end! I even repaired my HD (good anyway as I thought I was going to lose it.) All repaired.
But the weirdness is this. Somehow, in trying to secure a connection with my Airport over a year ago, one has “stuck.” The data stick connects to it. I never could do it with my Airport (which of course I’m not using now!)
I’ve tried to make it inactive, delete it, secured the changes, done. Delete, gone from baby MacBook. And so, restart everything, even to the point of the stick’s software, pulling out the SIM so it “knows” the change. Then, unbelievable!
The Data Stick is shown on my Network. It always has been. But when I’m given the prompt for my password to connect to it (since I locked up the delete) the Stick brings it back!
And what’s even more bizarre is that it says I’m connected to that Network via an Ethernet Cable. O_o
I am using a USB Hub because the ports are too close on baby MacBook, but that is NOT an Ethernet Cable to a Network! And it’s a goddamn Data Stick!
Finally, it MUST be their problem somehow. The Stick or the SIM is defective? If I try to connect to it via my own Network Settings on baby MacBook, I get an error regarding them?
I need to do this today. Otherwise, I may not be able to for a while. I’m heading straight into the vortex of my Typical Absence Status Epilepticus right now! I guess the increase to 80mg isn’t really doing the job? Well, maybe a bit better? Just have to see as this is the first day of the insanity.
I should take a bath. Where’s the tub? Have to write up my long list of notes for these fucktards so they can get what’s really going on, too.
Yep. The old bastard did it to me again. No matter how much I try and clean myself, water near the boiling point and a full bar of soap every day, I still can’t get his filthy snot off me. Well, maybe some chunks of it are starting to crack and drop into the tub.
Ah, the joyful holidaze. Such sweet, blissful memories. Ahem.
Christmas can be odd for me. That also includes the point leading up to it. I can’t always tell what to predict, yet sometimes it’s like I have a crystal ball disguised as a snow globe. What I feel could be either neutral or downright hellish. This year, my prediction was: Downright Hellish. Was I correct? I’ll let you know.
The memories. It’s not always about the childhood trauma anymore. Nope! I’m a big girl now! Other years have passed, where arguably, those experiences outweigh the things I recall as a kid. At least those that the Dissociative Amnesia still doesn’t hold so tightly in its grasp. I do remember some things.
I have an older sister, and of course as all children do, we’d wake up at ghastly hours filled with excitement about our pressies. Our stockings were always placed full at the bottom of our beds. Was that some kind of “ruse” to keep us so busy, we wouldn’t bust out of our bedrooms like total maniacs? If so, not a very successful one.
We were happy to wait. Neither of us were stupid. We knew it was around 0500hrs or something! Not to mention, “Santa” had arrived, and we were already on such high amounts of adrenaline, we’d only had a few more hours to sleep than…yeah, those adult people who were supposed to raise us.
Nonetheless, Male Adult really required no sleep, so he came down shortly after we did. But that didn’t matter. We’d have to wait hours for Female Adult. Okay, non-bio dad and mom. Nobody could get her out of bed because she was so depressed. So, maybe we’d get around to opening our pressies close to lunch? Then she’d go back to bed.
Pressies. I never got what I wanted. I could never understand why. Even at about six-years-old, wee Aspie PA would write out her Christmas list in this manner. I would compare the prices to keep the items evenly distributed financially. I also kept the prices reasonable. I knew the household budget, so I never asked for anything that was astronomical in cost.
Yes. At that age. It is called (beyond me being an Aspie) growing up in a very traumatic and abusive household. Where you must parent your parents and try to maintain (if lucky enough to create!) order out of complete chaos. Because that is your job. No, more than a job. For me, it was my destiny. I was deified by my mother, due to her religious delusions. But that’s another post entirely.
We were always late for every family get together. Even if it wasn’t Christmas. We could not get my mother out of the house! This was no doubt the (hypo)manic stage hitting, plus toss in some OCD? She’d constantly check if ovens, irons etc. were turned off.
And by late? I mean about 2-3 hours! Sometimes, dinners got cold while everyone was waiting for us, the other children in the extended family got so cross and upset. I know damn well all of the adults became MORE than cross!
The shame. The embarrassment. Plain and simple, our family sucked and my mother was a total lunatic.
Oh, but let’s quickly put those skeletons back in the closet! I see them parking the car! They’re here! Well, those people are out of my life now anyway.
So, back to my “prediction.” It was 50/50. More or less. 60/40? Basically, things weren’t so bad during the day. However, when the night came and it was dark? Things got ugly. Let’s not forget that this also continues for at least another week. So, whatever form of torture being endured, ensues until New Year’s. Maybe even long past that?
Ah! One more thing. Whoville didn’t have a happy ending either. The Grinch is still sticking pine needles up through my mattress and pillows while I’m sleeping.