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.

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.