Wednesday, June 6, 2012

Bad Day and Neurology

I'm exhausted. And I slept for 13 hours. Not straight mind you but still. Last night was sucky. Went to sleep at 2:30 and woke up at 3:30 heart racing, panicky, etc. My neighbor has this little floppy cloth doll thing that you lean against a corner and it looks like someone is counting for hide and seek. Freaks me out. I also have a pile of laundry (that I can't carry or bend over to pick up if I toss arm fulls down stairs) at the foot of my bed. Woke up with the tachy and panic and briefly thought that little doll was leaning on top of the pile (the doll is toddler sized). Finally calmed down and slept until 5 when my alarm went off and dozed until 5:45 then woke Big Daddy up, not that he got up, he called in but still. Went back to sleep and got woke up by Big D at 12 and again at 1 and not sure what woke me up at 3:30 but I was still exhausted, I had to make myself stay awake (as you can see I didn't just over sleep, I had MULTIPLE opportunities to get up, so it's not a case of "you're tired because you slept so long". Not hardly, I couldn't stay awake long).

I still feel like crap, it's JSmiley's first birthday today too but even laying with my head and shoulders propped (so I can breathe, it gets labored when I lay flat on my back) my bp is my upright normal as is my heart rate. Heart rate us going down slowly though, I guess today is just an off day. I can't believe my baby is 1 though!

As for yesterday. I'm not sure what I think. I didn't record it like I said I would. It wasn't bad but wasn't wholly great. She didn't not believe me though but only because of my positive tilt test and others. She said if it weren't for that she'd completely dismiss the seizures notion. As it stands I'm still big convinced. However SHE thinks it's just NCS. She said it's not uncommon especially in cases like mine with asystole to have hypoxic myoclonic jerks (or posthypoxic) that look like seizures and she said sometimes they do a combined tilt test with the plain tilt test and the strobe lights (which, having been through a tilt test and strobe lights to test for seizures, just sounds positively barbaric in my opinion) and some non-epileptics with NCS will have a (or what appears to be a) true epileptic discharge. And that it isn't treated with antiepileptics but the underlying issue (the NCS) with betablockers. So that much was a complete waste. But it WAS informative and I got somewhere so not a TOTAL waste.

I just don't get it. My sleep issues are not normal. Especially whatever it was that woke me up after only an hour and I didn't have my bp cuff in bed with me so idk what was going on. Her only advice was to offer me a MSLT (multiple sleep latency test) where I'm (once again) deprived of sleep or even not idk, it's a "nap" test. And they tell me to fall asleep, monitor what my brain does while trying to fall asleep, during sleep, wake me up and repeat. Not sure the duration but online it says every 2 hours for 5 times. Sorry but I hope it's not one of my deprived days. I'll wake up and not be able to go back to sleep dolts. I just wish I knew what was wrong with that. On top of the MSLT she told me that I was either stressed or my days/nights were mixed up and that bedrooms were ONLY for sleep and sex. Not to eat, read, watch tv or  anything else. What about days when I am too ill to get up? She told me to take 9mg of melatonin. I may try that. I wonder why that dose. She said some only need 3 mg but most people respond better to the 9mg. I'd have to take 3 3mg pills though. The bottles I saw at the pharmacy only had 3, 5 and 10mg. Is 10 too much? I don't know. She also said the EEG was normal and said the MSLT was pretty much the last sleep test they normally do.

I also asked her if everything else was NCS related, were my migraines too. She had no answer (since it's possible but could be unrelated). But she was kind of brushing that off too until she mentioned "Unless it's debilitating and interfering with caring for your kids blah blah blah" and I said "It does, I have to go to a cool, dark, quiet room and lay with a pillow over my head" and she asked what I took and I told her. She gave me a prescription that I filled but I doubt I'll take it even if I need it. She said it's the medicine they give pregnant and nursing mothers and they're bringing me back in August to switch me to something else (that they can't give nursing moms). However I'm the type that reads everything that comes with my prescriptions. I know some people ignore the print outs but I don't. Anyway it worried me because it has a second print out warning of severe side effects, psychosis and anaphylaxis amongst others and that's not including the regular possible side effects but I posted online in 2 of my mommy groups and it's a category c drug that passes through milk and my second board there's someone who works in a pharmacy and she pulled the info and said the manufacturer "strongly recommends alternate feeding arrangements in nursing mothers". Yea that sets off my red flags. Everyone keeps telling me to ask for Imitrex because it's safe and works. Why wasn't I given that since it's SAFE. The one I WAS given is a benefits outweigh risks drug.

Also, it's not specifically FOR migraines. I was given Gabapentin, (also known as Neurontin) which is an antiepileptic or anticonvulsant. The woman who works in the pharmacy said "Really? They're giving Gabapentin for migraines? :/" My sentiments exactly.

No comments:

Post a Comment