Wednesday, September 26, 2012


Still no news on test results, I think I'm going to call today and switch the prescription (reflux) because it isn't working and see if any have come back. I'll wait until after lunch though since I have to call one of my doctors too and I'm giving them until end of lunch (I called them yesterday and never got a call back, that really irritates me).

I had my neurology appointment yesterday. It was supposed to be tomorrow but the receptionist called Monday and asked if I could come in earlier. And now I'm left in the dark again because she isn't 100% convinced I have narcolepsy, she said it could be or a REM abnormality or hypersomnia or something and while she treats all of those, she isn't a sleep specialist. She also said the sleep specialist that diagnosed me with narcolepsy was a pulmonology sleep specialist and I need a neurologic sleep specialist so I got a referral for that.

(Let's review, I see a NP since my GP/PCP is on extended leave, an OB/GYN for normal stuff, a therapist, and a Cardiologist (though that's only on an as needed basis since I see an EP too) all in my city, I see a Neurologist in a city 30 minutes away in MY state (joys of living on a state line), an Electrophysiologist 45 minutes away in the state I live near and my Neuro thinks the closest Neuro-Sleep specialist is 30 minutes away in neighboring state. I think my city is in the middle of all of them so it's not THAT difficult for ME. Though if SHE needed to see the sleep specialist or EP it'd be an hour to an hour and 15 minutes one way (just to get there, never mind the wait time, appointment, and drive back) so I can see why she was hesitant and asking if it were ok. Her nurse is working on the referral so hopefully I'll hear something soon. The receptionist said sometimes they (sleep specialist) want to review your records first so I'm going to put it out of my mind for a week or so then maybe I'll call since I'm waiting on something else.

We talked a little about treatments and she said she wasn't sure she wanted to give me a stimulant because it would really clash with what my EP is doing but she'd request the records and go ahead and submit it to insurance (she said both drugs are usually fought by insurance whether it be state or the best private insurance, the all usually deny it so it'd be a week or so for that - which is why I said I'd put the other matters out of my mind until next week at the earliest unless they call me).

Then we talked migraines, she asked how the Gabapentin was doing and I told her that it helps but doesn't completely get rid of it and she asked if I had tried to up the dose and I told her about the one where I took 3 plus 2 ibuprofen. She asked if I'd ever tried a prophylactic drug (a drug that prevents them from occurring instead of gets rid of them when they're there) but then started talking about "abortive" drugs, or drugs you take when you get a migraine (our anything else) to get it to go away. We talked about several and there were a few that weren't good matches, one (I think the usual go to "abortive" drug) makes you drowsy. Denied. Some raise/lower blood pressure and stuff and eventually we settled on Topamax (a prophylactic) which I have to take once a day for 7 days then up it to twice a day thereafter. She said it could lower my bp so to keep an eye on it and let her know if it's lowering or anything and that usually with Topamax they increase fairly rapidly but she wasn't going to do that as fast because of my other conditions/treatments. Which is smart. I don't want to start a bunch at once or increase rapidly in case I react to it. Truth be told, as my medication list grows I'm getting kind of frustrated.

I don't know. I'm frustrated by all of it. I know some people have it worse but I'm frustrated. More later when my frustration levels are under control.

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