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.

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.

AWOL Doc

FML. No really. My neurologist's office called yesterday and said Dr. S will be out of the office August 27th and wanted to reschedule for the 18th of September but I have another appointment that day so instead, it's now scheduled for September 27th (sound familiar?) I didn't even fight it. I'm too irritated. She did say that since it's their fault they'll put me on the cancellation list. Joy. Get diagnosed with narcolepsy, can't treat it until my doctors figure out what is ok/safe for me, and one reschedules. It's ok, it's not like I need sleep. If my EP reschedules too I'm going to flip.

I'm hoping I can bypass it. I know she ordered the MSLT (my PCP ordered the PSG, and an affiliated NP ordered the drowsy/deprived sleep EEG - so it's not like she's the sole person responsible) that found the narcolepsy but I don't want to wait. The sleep center probably would've put me on something if it weren't for the IST and NCS (and any other letters I may have), at least that was what was implied. But my EP does sleep studies too. AND, he's the one treating my IST and NCS (etc). I'm HOPING he'll be willing to take it on (at least temporarily, if not full time) instead of having to wait a full month on her ideas then coordinating with my EP on if he thinks it's ok. Maybe he'll be like "do/take this" and then in a month I'll just bring her up to date. But that feels shady. Oh well, maybe my freaking doctors should QUIT messing around. I know they are human and "shit happens" but at the same time, it's not fair to me to have to wait an extra month (shorter if they get a cancellation, longer if "something else comes up). Am I wrong for being a bit ticked? Ughhh!!!

Migraines and Medicines

One week until my neurology appointment. I wish Big Daddy could go with me but I doubt he will get to. I'm not even sure he will be able to go the 31st. I don't want to go to either of them alone. Firstly, I hate driving half an hour (EP is 45 minutes) one way, second, I need a GPS, I don't know how to get either place. Big Daddy drove me to the EP and the neuro moved offices so even if I remembered exactly how to get there, I don't know now. That's on my "To Do" list. Worst case I'll get directions from Big Daddy and try to get someone to go with me. Logically he can't go to both, he doesn't get paid for not being there and one day cuts into the check enough without the added day.

I have no clue what to expect. They want to put me on a stimulant to wake me up during the day but it would raise my heart rate. If the dose of my beta blocker is increased would that negate the effect the stimulant has? Obviously I'm "thinking out loud" here, I plan to ask my doctors everything but I'm impatient and a week seems so very long when you're in the dark.

One of the potential drugs I'm thinking will be a complete no-go. I'm going to try not to come off offensively but this one threw me. It's called Xyrem (Sodium oxybate), also known as GHB. My ignorance was in assuming it didn't have a legitimate purpose but apparently, it was created SPECIFICALLY for people with Narcolepsy. I don't think I'd be a candidate since I have small children and Big Daddy sleeps like the dead but even if I were, it'd scare the crap out of me. I've watched entirely too much TV with that drug used in sexual assaults. That's not my concern, I'd be here when I took it, but JSmiley still wakes up, so do the big 2 on occasion. Or if an alarm went off... Big Daddy could sleep through a hurricane. It's just not a good idea.

And then there is the migraine that just. wont. QUIT! I can't remember exactly when it hit but I know it was the 15th, probably after I got home. It's been coming and going since then. And the one yesterday, the migraine meds didn't get rid of it. Nor did I sleep it off. It just dulled it (granted I went from nauseated, stabby feeling and over 75%blurred vision/blind - to just sharp (SHARP) but less intense throbbing). I haven't taken it often though. I was going to take it again but I'm not sure how much is ok. It says 2 every 8 hours as needed though by those standards I'd have been SOL since that would've put me close to midnight. A friend of mine is on a very higher dose so I'd have been ok (as in, an extra dose wouldn't kill me - my friend is/was on quadruple my dose). But it dulled it to tolerable. I can still feel it though. I'll be ok until my appointment. I'd be "ok" either way but if i have to have a recurrent migraine, I'd rather have dulled pain over full pain (though of course it goes without saying, I'd REALLY prefer NO pain). More later.