Thursday, July 11, 2013

Syncope or Not

Pretty sure I passed out last night. Kind of? I'm not sure exactly what happened (like usual) but like usual lately I had a migraine all day. Took my meds as normal but it wasn't cutting it so I broke down and took some Gabapentin. It didn't over power me like it usually did (or completely take the headache away) but it helped some. Around 1:15AM I took some more. Big Daddy and JSmiley were sleeping, the other girls stayed the night with Big Daddy's twin sister. Anyway, I crawled over to Big Daddy and kind of straddled him and pressed my head against his back for counter pressure.

The next thing I know, my eyes pop open and I'm looking around in confusion/disorientation trying to figure out where I'm at, why I'm there and I roll off/over and everything is "asleep". My knees and elbows are on fire. I reach over and grab my phone and light it up. It's 2:21.

I'm laying there freaking out thinking how the hell did that happen. What just happened. Was it the NCS? But I've never lost awareness for that long. Was it a combination, passing out from NCS and the Gabapentin making me sleepy? Narcolepsy has never made me lose consciousness like that. Big Daddy sleeps through hurricanes and kind of mumbled through me trying to tell him so I gave up and just went to sleep (after my limbs woke up). But seriously. An hour? What the hell?

Tuesday, July 2, 2013

Your Claim Is Denied

A little wind out of my sails tonight but I'm getting right back in the game tomorrow. SSDI denied my claim, again, despite my extensive list of disorders. Last year when they denied it they claimed I could work fast food, this year (in FEBRUARY) I made sure to let them know I can't even SIT upright for 8 hours, much less stand, thanks to my NCS. They are claiming I can do other work, that it isn't severe enough. Which first, my NCS is severe. My heart stops. It isn't often because I take preventative measures SUCH AS STAYING OFF MY FEET!!! *sigh*

"While you do have Neurocardiogenic Syncope, Narcolepsy, and migraines your episodes are neither so frequent nor so severe that they limit your ability to work."

Let's stop right there. The month of May I had a migraine nearly 21 out of 31 of those days. Not frequent my ass. The month of June I had one almost daily to some degree. I was in the ER TWICE in June and got a shot today for migraines ON TOP OF WHAT I TAKE OTC AND BY PRESCRIPTION. But y'all, that wouldn't effect my work. Nope. I can work from the ER or cowering under my pillow. My NCS and IST, what job will allow me to LAY down when I need to? Not to mention, I get dizzy EVEN WHILE LAYING. Expanding on that, I get dizzy in the heat and if I'm not hydrated. WHO WILL WORK WITH THOSE LIMITATIONS? AND expanding on that, I'm FAIRLY positive the only reason I've managed to go so long without fainting is because I'm not doing anything. Narcolepsy. Just fuck you guys. Maybe my boss will understand Zombie Sierra. Or the brain fog. Or maybe that 3 hour nap I need to take if I don't get a good nights sleep. Heaven forbid I find a job around here that involves NO strenuous activity where I can recline that I also DON'T need to talk to strangers.

"Your drop in blood pressure has not resulted in severe complications."

Yet. But if I push it could. And did I mention my heart STOPS?

"Your mental health conditions have not affected your ability to understand, remember, cooperate with others, or perform your normal daily activities."

Wrong on the last one. I'm 24 and occasionally have to have my mom or husband make phone calls for me. I get this claustrophobic feeling in public too and need to get away if I feel boxed in.

"Your fast heart rate does not prevent you from working. The evidence shows no other condition which significantly limits your ability to work."

Except I need a rest after WALKING up my stairs. Much less after actual WORK.


"Your condition results in SOME LIMITATIONS in your ability to perform work related activities. We have determined that your condition is not severe enough to keep you from working. We considered the medical and other information, your age and education in determining how your condition affects your ability to work. WE DO NOT HAVE SUFFICIENT VOCATIONAL INFORMATION TO DETERMINE WHETHER YOU CAN PERFORM ANY OF YOUR PAST RELEVANT WORK. However, based on the evidence in file, we have determined that you can adjust to other work."

My take on that is: "You're sick, we admit it. You have limitations, we don't know what you can do but we're pretty sure there's SOME job out there you can do. We just don't know what. If there was one, I'd do it. If I had a job I could do that would work with my health, I'd do it. I don't have just ONE health condition, I have several. I'm sick of the run around. This is bs.

Neurology and Migraines

It's been two weeks (on the 4th) and I still have a bruise. So 12 days and it's still clearly visible. The one the IV stayed in is nearly 100% gone. If not completely. I don't know what in the world happened but that is ridiculous. I don't think I have EVER bruised that bad for this long!
In other news. My neurology appointment was today. She increased my topamax to 75 mg twice a day, which both boo and yay. Hopefully it helps but boo because now I'll be taking 6 25 mg pills a day. (I'm guessing it only comes in 25 and 50, could be wrong but the nurse said that's what she was calling in.) 3 per dose. I had a headache in office so the nurse (per doctors order) gave me a shot of 60 mg Toradol in the hip. I barely felt it as opposed to the IV. It also didn't 100% cure the headache (85-90%) and it's already coming back less than 3 hours later. I'll take a nap when I'm done writing. See if that helps.
She gave me a booklet on Xyrem and wants me to think about it. I told her I would but I don't think I could with the kids. JSmiley stayed up until 2 last night and I had to get up with Big Daddy at 5 (wake him up for work) then actually get up at 5:40. Big Daddy could sleep through an earth quake so even though I'm the one dx with Narcolepsy, I'm the one who has to be responsible for everyone. Even my neuro said that isn't fair, and it isn't, but I have to do it.
I also convinced her to order a test. She didn't want to because apparently she was under the impression I had frequent flier ER miles (when I've only been 3 times for migraines). And also under the impression that my ER actually did any tests. Nope, I knew what was going on (though not why) and my ER just treats and streets so after a little discussion she agreed to check my chart to see if I'd ever had a CT and order one if not (even though I said I rarely go, I suffer in silence and the only testing I'd had was when I'd fallen, at 4). But I guess she checked because after I got my shot and was checking out the receptionist said it was ordered they just had to get a prior authorization from my insurance to schedule it and they'd be in touch. The only sucky part is, it's without contrast and my medical friend said that's their quick emergent go to, to check for head bleeds. I guess something is better than nothing but if the CT w/o contrast shows nothing will she pat my hand and go "See, it was normal." To placate me. Like all my cardiologists did, or order further tests, just to be sure. I mean she was SURE I couldn't POSSIBLY also have Narcolepsy on top of every thing else. I'm not inviting trouble but we all know every time the doctors stop at basic tests "I'm fine" but once they do the "There's one last test we can do." My dx list gets a little bit longer. We shall see.