Spines and More

I'm not sure if I should classify this as an "Ask and ye shall receive" or if Murphy is just fucking with me at this point. I think it might be a mixture of both. My neurology appointment was the 2nd of July when the CT was ordered and subsequently denied 2 weeks later. My neuro's answer was to just keep upping meds. Murphy said ok, I'll provide but it's going to hurt a little bit.

Yesterday Mom had off so I was over there and we were all doing things we had to do/errands and she was taking me to sign SDiva and DCourtly up for school (had to wait on DCourtly's kindergarten physical first). I was walking down her concrete sidewalk/steps/path holding JSmiley when the front of my left flip flop folded and tripped me. I tried to brace roll since I was holding JSmiley and hit my knee first but kind of tucked her to me and rolled. I hit my foot/toe, knee, hand, elbow and head (damnit Murphy). JSmiley has a pea sized abrasion on her left ankle. That's it.

I was diagnosed with a contusion and abrasions and they did xrays and two CT scans. One of my head and one of my C-Spine. They didn't find anything from the fall, and I don't know if anything has any bearing on the migraines but they found a cyst in my sinus (sinus cyst) and bone narrowing on my C7 vertebrae. Also known as a sclerotic lesion.

You know how discharge papers say follow up in 1-2 days blah blah. Mine say tomorrow (today) and you know how if you don't call they don't call you? Well, the PA I saw gave me muscle relaxers for my neck and I woke up feeling like I got hit by a bus so I took one and fell back asleep intending to call them when I woke back up, but my phone rang at like 8:13 AM. It was my PCP's scheduling department. The ER had connected them about it so THEY called me and now I have to have a bone scan on the 14th (6 days). How bad was it?

Guess I'll find out.

I called my neuro but it's a different hospital system so unless my PCP will send the file I have to go sign a release for them to see it. I don't think they've called back since 12 so I'm assuming they did get it. But I see my PCP tomorrow at 3 to follow up on the sinus cyst and head trauma then Wednesday I have to be at the hospital at 8:30 for a 9 AM appointment. I'm guessing for prep/paperwork.

Everyone is quick to ask me if one of my conditions caused me to fall and really, it wasn't the full thing. I was having a bad day, I was tachy with minimal effort, zero energy, face tingly, just felt like crud. But the biggest issue was I just tripped. Now, was my balance off because I'm sick? Who knows. I'd ask what next but I'm pretty sure I don't want to taunt Murphy.

Murphy? That You?

Some days I feel like if it isn't one thing it's another. My migraines aren't getting any better. My neuro originally increased my Topamax from 50 to 75 mg and that almost literally did nothing. 100 mg dulled it to somewhat tolerable for almost a week but I could still feel it in that one spot. Then it started getting worse but my neuro wanted me on it for 3 weeks before we did anything.

My insurance, denied my doctors request for a CT scan as not medically necessary. Not sure where to go from there. I fit criteria listed on their paper denying it but the nurse said there was no point appealing it.

I'm in pain daily. And now, to top it off, I need my wisdom teeth out. I'm not even bothering upping meds until that's over with. Just have to get in to have them pulled ASAP. The whole right side of my head is in constant pain between my jaw and my migraines. I can't take much more. It's driving me crazy. I've been in near constant pain since May.

My electrophysiologist increased my Atenolol to 50 mg in the morning and left it at 25 in the evening. He offered to switch to a different brand that had a better rate of crossing the blood brain barrier but the draw back to that is that one had a higher instance of making you sleepy and that I wanted to avoid with Narcolepsy.

So my order of business:
1. Get kids off to the new school year.
2. Get wisdom teeth pulled so the crowding stops putting pressure on skull.
3. See if that helps with headaches.
4. Adjust meds/beg for further help accordingly.
5. Seriously consider a new HMO that isn't a PITA.

There's probably more but there's a drill drilling into multiple areas of my cranium. I meant to update sooner (like after each event) but I've been so irritated by everything and the pain. I'm just fed up.

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?

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.

NOW FOR THE KICKER!!!!

"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.

MOOOORE Migraines

So for the second time in a month I wound up back at the ER for migraines. This time I went in when it had only been 24 hours. I usually only go as an absolute LAST resort, I don't want to be THAT person but I can't do it. The whole right side of my head felt like it was being squeezed in a vice. I'd barely drank, barely ate. Ibuprofen was barely dulling it. None of that "It goes away for a few hours then comes back" bull. I was dehydrated and dizzy. I needed fluid too. I figured it'd turn into another recurrent migraine that'd be blamed on me (rebound) so I went after 24 hours. Plus this time I've been on my migraine rx the WHOLE time. Last time I thought it was triggered because I use one of those day/week planners and forgot to call in the refill and went a few days without. I've been on it since then and I'm still getting them.
The doctor (was an actual doctor, not a NP) and asked what they'd done in the past. I told him the only two times I'd been they'd given me Stadol and Phenergan. He asked if I'd ever tried Reglan, Benadryl and Toradol. I've never tried the combo but I guess he was asking if I'd ever had the meds in general. I've had Reglan before to ill effect. I went to L&D once for severe GERD symptoms and a resident refused to listen to me and gave it to me. With GERD you need a PPI (or Proton Pump Inhibitor) or it does the opposite. It felt like my throat was burning. The nurse came in expecting me to be "Yup, all better" and ran back out of the room when I said "No! My throat is burning now!" (When she asked if I was feeling better) "What do you mean burning?" "I TOLD him I have GERD and couldn't have that." Anyway, back to the present. I thought maybe he'd replace the Reglan with a PPI like Protonix (what the nurse in L&D had to give me in the other instance) but he substituted it for a low dose of Phenergan. I thought between the low dose of Benadryl and Phenergan I'd be knocked out but surprisingly I wasn't. I was super tired though. I got to the ER at 9:30P, into a room at 11:30, seen by doctor at 12:30A and home around 2:30A. With Narcolepsy, even without those meds I'd be tired.
I'm glad I didn't sleep half a week like the other med combo BUT, I guess I was hoping for a headache reset button and both times I got headaches again quick. Although I guess the second was better for less severe, less longevity (since I didn't need the sleep to recuperate/let my head heal). I know it was stupid to expect a reset button by going to the ER. I know I have CHRONIC migraines. I guess when I'm in pain I don't think straight then when I get another I'm disappointed the pain relief didn't last. Can you blame be though? Very little physical pain can move me to tears. Labor before an epidural got some tears and childbirth after a failed epidural hurt pretty bad too. I have several tattoos, I refer to them as cathartic and even tell people a few nearly put me to sleep (though some I'd rather never repeat, ow). But seriously. Big Daddy had to exert some serious counter pressure just to allow me a modicum of piece and describing my pain to mom, "It felt like I wanted to cave my skull in." I can take pain in general. I can't take pain from the time I wake up until I fitfully fall asleep, all day every day for who knows how long or when dehydrated beyond what I normally am.
The nurse tried to put an IV in just below the crook of my arm but "it didn't take". Possibly from dehydration? I'm not sure how that works but it's bruised in a streak and the darkest part is furthest from the puncture. So then she moved to my inner wrist and diagonal. That was the most awkward area I've ever had an IV to date and I'm pretty sure the bottom of my thumb has played IV host before (though that was pretty awkward, it had a purpose). It's bruised too but not as bad, I'm guessing since it actually "took"? My arm looked MUCH worse all week (the two bruises were almost connected for sine reason!) but I was embarrassed by how BAD it looked so I didn't take any pictures until today when I decided to blog except the ones I took in the ER. I'd have taken more once the IV got set up, she put the green bandage stuff on me etc but she turned the light back off for me and my phone was dying and the whole photophobia thing. Ok, I think I got some pictures, with flash where you can kind of see how large the bruise was. It's faded a whole lot now but still noticeable. It was 10x worse before now. I'm getting a slight headache and it's a minute until midnight so I'm going to try to post and sleep. Hopefully it loads. Fingers crossed since I'm trying to add 2 pictures.
And now I'm having to edit for pic errors. >.>

Food Intolerance

Food Intolerance. I don't remember if I've mentioned before but certain foods make me feel bad. I need to ask one of my doctors. I asked some online friends and one thing that stood out is MSG Intolerance. Two of the foods I know I react to are Chinese food and Campbell's Chicken Noodle. According to fooducate, the soup has MSG and according to google MSG intolerance is often referred to as "Chinese Restaurant Syndrome,” referring to that fact that MSG is commonly found in Asian-style foods. 

I'm not sure if that's what it is but it's EVERY time I eat those certain foods, the two mentioned and more. Every time. So logistics says it HAS to be me reacting to the food. Or rather, some part of it. I've started a food diary of sorts. I'm going to try to get a list of foods in the next month that make me react that way specifically.

Another friend said studies have pretty much proven MSG symptoms are psychosomatic or coincidence but I didn't link it to that until someone mentioned it nor did I consciously link it at first that "Hey, every time I eat x, y and z, I get weak/dizzy and have to lay down." And how would that be coincidental. Every single time. Even if it isn't MSG, SOMETHING in the food is causing me to react. Plus some people say other things are psychosomatic whereas others say it's real and it's treated. Who knows.