Saturday, June 30, 2012

Lazy Month and Rant

June has been both a lazy and exponentially busy month. I've been a slacker blogger. Big D had a lot of baseball stuff going on on top of regular life.

My heart rate is still a little wonky at times. I got really mad a few days ago. Someone in a facebook "support" group gave me a hard time the other day about weaning. She actually called it "silly" to wean to go on beta blockers and said "it's sad if you wean for that" and "I have over 70 months of nursing on beta blockers" and that she takes atenolol while nursing (that's what I think I'll be starting but I didn't say that). And kept going on and on and ON about how I shouldn't believe my doctors (multiple told me NOT to nurse on beta blockers because it was harmful to babies) and should have done research myself and that it is absolutely possible to nurse while on meds. A friend of mine is currently on atenolol too, in a totally different state and HER doctors told her to not breastfeed or become pregnant and if she did to come to them to get off of it, so not just MY doctors.

I'm fairly proud of my self. I was PISSED but I held my tongue. The worst I said was not to ASSume she new anything about me and that I am the LAST person to wean because of convenience to ME and that I'd agonized over having to wean blah blah blah (I've been over it before). I've looked up drug info and they say basically do not take while pregnant or nursing. But I decided to go a step further and try to either find info that will either allow me to continue nursing or reassure me that weaning is the right thing to do. And guess what, I will be SADLY weaning.

It still breaks my heart having to wean but I am not risking her health. I'd rather sacrifice mine than risk hers. The AAP (American Academy of Pediatrics) say it IS possible to breastfeed while on beta blockers especially mature milk (as in, not the first little bit), HOWEVER atenolol, there are risks to the baby. Sorry, I'd like to nurse another year but I can not go another year bed ridden. My kids and my husband need me at least somewhat functional (more than now though I've been spending a little time up sitting outside in the shade or as the sun is low in addition to my normal activity (which isn't too much but still)).

Here is what the AAP say in regards to nursing and taking beta blockers:
Diuretics and beta blockers, commonly preferred antihypertensives, are safe for use in lactating women, with some precautions. In general, it is preferable to avoid high dosages of any one medication by either changing medications or adding an additional agent.

Low dosages of thiazide diuretics (e.g., 25 mg per day or less of hydrochlorothiazide [Esidrix]) are excreted in small amounts into the breast milk but do not suppress lactation and, consequently, are compatible with nursing. Beta blockers vary widely in the amount excreted into breast milk. Propranolol (Inderal), metoprolol (Lopressor) and labetalol (Normodyne) are excreted in small quantities and are compatible with breastfeeding even in compromised infants.

HOWEVER (this is where the NO comes in):
Atenolol (Tenormin), nadolol (Corgard) and sotalol (Betapace) are excreted in higher amounts, which can lead to hypotension, bradycardia and tachypnea in the infant.

Atenolol is on the "use with caution" list. Sorry, I'm a die hard breastfeeding fanatic. I'm one of those crazies (in some peoples opinions) who breastfeeds toddlers, during pregnancy, 2 at once, in public, on demand etc. But I am NOT comfortable with even a small chance or causing my daughter health problems. In the end, as much as it pains me, it is absolutely the RIGHT decision to wean. She already has issues getting over illnesses and has been sick a lot this year. So no, I will not contribute to that. She eats regular food and baby food and drinks regular drinks. I've nursed far longer than most Americans (and would longer). That woman can pound sand.

I am still sad that my nursing time is coming to an end, I'll miss it, and I am sad that it is less than the amount of time I nursed the older two but I feel as if it is the best choice for EVERYONE. I'm very sad about it, but ultimately, it's what is best.

Friday, June 22, 2012

Weird Few Days

Long time no blog. Not sure what is up today. My heart rate is low today, in the mid to high 60s. It's never that low even when I'm sleeping! I think it's messing with my circulation, my limbs feel funny. Kind of tingly but not quite to the point of being asleep. I don't know what to think. My heart rate just doesn't get this low unless I'm feeling 100% and not on any caffeine (both). When I had my tilt table test it was low but I'd had a stomach virus the week before and was on a sprite/gatorade diet with 1 serving of food per day and actually managed to stand a while. I wonder how it would go if you didn't have to forgo stuff to take it. I know I felt awesome that day (pre-test). Wonder how much different it would be if I went in tachy (or close) and feeling like crap.

My heart rate is bothering me, awake and laying it should be in the 80s normally. It was 20 points below my normal. Last time it was off (10 points higher) I had those hypoglycemia attacks. It's up to the 70s now but that's still my sleeping heart rate and as you can tell by me typing this, I'm not asleep. Ok, scratch that, laying on left side and it's back in the 60s.

Ok (taking multiple breaks in writing) I got up and ate and it got up to 103 sitting and is back down to 84 laying. I'm still watching it and still have the semi-numb limbs and pain.

In other news, I've been taking melatonin (only 3 days so far). It works but it also annoys me. 3 mg does virtually nothing but 6 mg or more leaves me tired if I don't get enough sleep. I also need to get some prilosec.

This blog has taken a while to write. I started writing on 6/20/12, it's the 22nd (at 2 AM) now. My heart rate is currently in the 60s. This morning when I woke up it was in the 50s. If it continues next time I wake up I'm calling one of my doctors. I'm having more (minor) chest pains and numbness etc. I don't understand. The only thing I've done different is take melatonin, and it's just not fitting. I'm kind of worried. Hopefully I'll be better when I wake up )haven't taken any more melatonin in 24 hours but my hr is still in the 60s (and I'm sitting up!) I don't know. :/

Sunday, June 10, 2012

Hypoglycemia and NCS

Today was fun. Not. Slept until almost 12, Big Daddy brought me some pancakes and syrup, and I needed a nap at 2. Woke up at 4 and just felt off. JSmiley had taken a nap with me. Mom took SDiva and DCourtly to church, they stayed the night with her last night but she brought them back as I was laying down. Anyway, I felt off as I was laying down, kind of like sleep disturbances while partially awake, sounds, sensations etc. I believe it was possibly Hypnagogic Hallucinations. I've had those rarely as well as Myoclonic Jerks. I usually only have them when I'm super tired etc.

Anyway, I woke up and my limbs felt weak. Kind of like how they feel when they're falling asleep before the tingling starts. Called Big Daddy who was outside with the big 2 and he came and got the baby. Checked my blood pressure and heart rate, normal. Went downstairs for food, had an idea, came UPSTAIRS, checked my sugar (with my last strip, it's been a while). 67. That explains that. Food, plus caffeine and chocolate pudding and I still felt off. It's getting better (I'm laying down) though.

This isn't the first time it's been that low. When I was pregnant with JSmiley my OB (Dr. Mc - not to be confused with my EP Dr. M) decided my fainting and dizziness was just hypoglycemia so I bought my glucose meter and supplies. A couple of times my reading was super high or low. Yea it fluctuates just like the rest of me. That was before I was referred to Dr. T.

I quit using it as much once we focused back on my heart. I think I may need to stock back up on supplies. I'm also going to ask about the link between NCS and hypoglycemia and what I should do about that. It's not very often as far as I know but it's always in the 60's. Insulin shock is 50 and below. What happens of I'm alone and too weak to safely go downstairs to get it up. I was weak and wobbly today. Will it drop further of I can't? What then?

I think it needs to be August quick (again, as sad as that makes me) I don't know if this is just a bad week but my hr values at rest (laying but awake, like right now) and upon waking are 10+ bpm higher than before, consistently. My laying is high 90s (last month it was high 80s laying), just waking up, high 80s (was high 70s). My active heart rate hasn't changed, still tachycardic. I can see and feel it more often than not. Like laying and nursing, I can see it pulsate and feel it. I think it's a good idea I'm getting on meds soon.

I'm slightly afraid about passing out. I haven't since November but I'm watching for it. Next week for 3 days I'll be completely by myself (my neighbor is usually next door to call if I need help). She'll be several hours away at her daughters graduation, Big Daddy will be at work and may or may not be able to answer/hear it, and Mom can't have her phone except on break. Reminder to self, get some backup/emergency numbers. I may not need help but knowing how hard it'll be to get help should I need it is daunting. If it were just me I could call for an ambulance (can't drive symptomatic) but I'll have the girls. Which also scares me, they've never seen me pass out (knock on wood). I'm probably panicking for nothing so I'm going to quit for now and relax for a bit.

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.

Monday, June 4, 2012

Medical Professional Weirdness

Well that was an interesting conversation to say the least. My neurology office has my name listed as my maiden name. I'm clueless. It's a new doctor (as in I've never seen her or anyone else there) so it's not a case of I got married and need to change my info. All my records do and have said my married name since 2006 when I changed it including medical, social security, drivers license etcetera, so it's not a case of didn't change it somewhere. My referral (since all current doctors are up to date) says my married name and as such, my info was electronically sent with the correct name written. Even verbally to set up the appointment none of my current doctors would use my maiden name. The ONLY logical explanation is because my maiden name is still IN my name, but not in last name capacity. It's first name, middle and maiden (so I now have 2 middle names), and last. But that doesn't cover all of it, and even IF it said Maiden+MarriedName why is it ONLY listed as maiden name? Usually they only ask for middle initial and maiden name so my full name is only on my insurance and license (that all offices photo copy) but in none of the paper work does it list my maiden name as my last. I don't get it. Yes I know it's weird to fixate on a minor detail, it's fixable and it IS one of my names. I'm just stumped at how they got that conclusion.

This isn't the first medical oops either. When I had my last echo or my stress test they had my emergency contact listed as my long deceased grandmother. The one who died January 1, 1998 (1 echo done in 2007-2008, 2 echos and a stress test all done in 2011, plus numerous EKG over that past several years at that hospital/location). ALL since I've been married. The place is hospital affiliated, IN the hospital and on it's system. Since I got married in 2006, my husband has been my emergency contact. How did THAT glitch happen? My grandmother might have been my emergency contact years ago but she never had a car so that'd have been counter productive. My aunt was my emergency contact at school. Mind boggling I tell you. This is the conversation (edited of course) we had.

Receptionist (R): "May I speak with Sierra MaidenName please?"
Me, shocked: "This is Sierra MarriedName."
R: "Yes this is Kim with Dr. S Neurology calling to confirm your appointment tomorrow if that still works for you."
Me: "Yes it does."
R: "Ok you'll need to show up at 10:15 for the new patient paperwork."
Me: "OK, um, is my name listed as MaidenName or MarriedName because I haven't been a MaidenName since 2006."
R: "It's MaidenName. I can change it tomorrow when you come in but I can't change it over the phone."
Me: "I completely understand, I was just wondering why it's listed under MaidenName since all my other records correctly say MarriedName."
R: "Perhaps they're on a different system than us, but I'll be happy to change it tomorrow when you come in."
Me: "Ok, thank you."
Both: "Bye."

See, weird. It's bugging me. I'm really nervous about this appointment. I'm tired of getting the run around, granted that hasn't happened since last year but I still get really nervous that it will. Less than 1 year of being taken seriously is hard to process after 13 years of not. I'm always expecting disappointment. I hope it goes well. I think I'll have a fit if it doesn't. Seriously. I have no clue how to get there (my letter came with directions though) or what to expect AND I'm going alone. Mon gets points deducted for missing work (lame) and Big Daddy gets in trouble for missing. Anyone want to wish for rain for me or that he gets off? It's a 30 minute drive on the interstate and I don't like driving on them. Oh well, I'll update again later/tomorrow. JSmiley is napping and I'm stressing. Time to chill out.

Friday, June 1, 2012

Random Rambles

Well the earlier appointment was a no-go. I called back at 9 AM and was told they left at 5:45. She made me feel as if I'd asked her to squeeze me in anyway. Which I didn't by the way. But she asked if I had another number in case they get another cancellation. Guess I'll just turn my phone up so I don't miss anything anymore. At least during business hours. I just hope I'm not constantly startled.

Stupid noise sensitivities. I've always had sensitive hearing. Big Daddy and friends refer to it as my bionic ears. Have for years. They can stand across a room and whisper or in a next room and as long as there isn't something distracting me (like a loud tv), I can hear it. I didn't realize how it would effect me. I've never had a problem before. Well except when people don't want me hearing stuff. Like people in high school talking about me assuming I couldn't hear them. Totally could. Watching their eyes widen when I called them on it was pretty fun.

My birthday was pretty much the same as any other day. I got a bunch of birthday wishes. Woke up to a voicemail of my mom singing me happy birthday. Big Daddy and the kids sang to me too. The kids and I are spending the night with mom, it was supposed to just be SDiva and DCourtly but JSmiley and I came over to hang out and Big Daddy fell asleep.

I've been writing this post for a week. I've also been at Moms for almost a week. It's been relaxing. I've stayed cool, haven't been stressed and there's no steps here. But I miss home. Anyway, apparently June is Migraine Awareness Month. There's blog prompts. I'll do a few, but I'm not interested in doing all of them. Later.