Friday, December 14, 2012

Guess Who's Back?!

*Peek's head in*

Ok, don't shoot me. I had to step back for a little bit or I'd go crazy. I know this blog is supposed to be my outlet or whatever but I had to just not *focus* on it for a while. I don't know if that happens to others but I haven't researched, written, or visited my support groups this whole time.

I re-read my last entry (from September) and I can feel the tension. Everything kept piling up, I got denied disability based on lies (others, not my own) and was so irritated, I haven't even bothered to appeal. The claimed my meds work (lie number 1), they claimed my migraines weren't bad enough or often enough (sometimes they last days at a time - so lie number 2), they claimed my anxiety isn't a hindrance (I'm 23 and occasionally need my MOM or husband to make calls for me - so lie number 3), they said I can work fast food/cashier (HELLO, orthostatic intolerant anyone - so lie number 4). I mean seriously. There's probably more but I've forgotten. Then I'd read the groups and get overwhelmed. I wanted to ignore the fact that I'm sick, outwardly. I can never forget but I kind of pushed it to the corner.

On to neurology. My next appointment is in January. I had one (the neurologic sleep specialist) and he basically said since the MSLT was positive for narcolepsy that's his diagnosis until proven otherwise. The only other thing was where you act out dreams in your sleep (not sure what condition that is) but I don't do that. I have walked in sleep very few times, and you can talk to me after "waking" me, real conversations - not sleep weirdness - but I won't remember, but no dream acting. I was SUPPOSED to have my follow up with Dr. S 11/26 but all 3 kids caught the stomach flu and the next available was first week of January. I don't need to go back to the neuro-sleep specialist unless Dr. S thinks I need to, we treated it as a second opinion or something like that. He said narcolepsy and agreed I should go on meds. My insurance is being difficult and denied provigil and nuvigil until I try adderall and ritalin or one other (I believe I have to try two of three and it not work then try for the other two). I don't get why they deny meds made specifically for a condition. But, that has to wait for January.

I DID manage to get in to see my electrophysiologist. The actual doctor. SOOOOOOO much better. He discontinued the Midodrine (it made me 10x dizzier than off - but apparently that's one of the meds that was "working" - stupid incompetent FNP tried to increase it but I didn't take her doses) and changed my atenolol dosage. I started on 12.5 twice a day (I quit taking both of those during my hiatus, one because it made me worse and one because I didn't know how if react without the other). It didn't drastically lower it like the 25 mg 1x/day did, just took the edge off, so to speak. If I want/need to, I'm supposed to up it to a whole pill (25 mg) twice a day. Remember it would go back up after a few hours? I don't know. I'll try it next week. Right now I'm still doing half dose twice a day. I think I'm doing ok. It puts me in the 80's baseline sitting/standing (as opposed to HIGH 80's/90's laying while feeling good - much higher if I'm sick) but I think I'll definitely have to up it when treating the narcolepsy. My EP is in agreement there.

Anyway. There's a medical update. Maybe I'll post some real life (non-medical) drama later. The holidays are a blast.

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