Wednesday, June 11, 2014

a health update.

hey everyone.  i have really been struggling with my health for the past few weeks, which is why i haven't been posting very much and commenting on blogs, or been active much online at all.  unfortunately it has been mostly centered around my migraine headaches/problems that i have been having with my eyes, which tends to get worse with using electronics a lot!  a lot of times when i am sick, i just relax on the couch and watch movies or tv, or play games on my phone.  when i am having pain in my eyes (as a lot of you are familiar with), that's the last thing you want to do or even can do, because it makes it a lot worse.  so that's why i haven't been around much.

i have never had "typical" migraine headaches, where you just get bad pain and take some aspirin or whatever and they go away.  ever since i was a teenager, my version of a migraine was where my entire left side of my body went tingly and then numb (leg, arm, face, tongue, etc.), i couldn't see out of my left eye at all, couldn't speak properly, could not think of correct words, vomited excessively -- basically like a stroke.  nothing helped them except for large amounts of sleep, around 12-18 hours, and even after i woke up, i would be in a confused fog for a day or two with severe head and eye pain before i was back to normal.  i didn't know that these wasn't a regular migraine until i started surgical tech school and found out that a "normal" migraine was more of what i considered a regular headache.  at that point, i was only getting them about once every 1-2 years, so i didn't bother going to a doctor because they weren't regularly occurring.

starting about a year ago, i began getting them again.  at first, it was just one, but it was the old kind, where it was stroke-like with all the same symptoms.  i had another one a month later, and then again three weeks later.  i started seeing a neurologist who put me on topamax, but it hasn't been doing much good.  over the course of about six months, i have been increased to taking 75mg both at night and in the morning, and i have a prescription for imitrex to take when i feel a headache coming on, but the imitrex hasn't helped at all, no matter what combination i take it (one now, then another two hours later, two now, then one later, two now then two later, etc).

beginning in march, i started getting just visual auras without a headache.  these are frequently referred to as ocular migraines, and since i have these other migraines (basilar migraines), i am more prone to ocular migraines as well.  my neurologist figured that is what they were, and because i wasn't experiencing pain with them, that was my diagnosis.  at first, they were just pops of color/light and occasionally some flashing lights, with a shimmering cloud.  i had a brain MRI, which came back clean with no brain lesions (which is somewhat unusual for someone who has had the severity of migraines i have from a young age, but i'm not complaining!).

however, in the past 2-3 months, my visual symptoms have increased to a very bothersome level.  

my neurologist has no idea what is causing them, because my MRI was clear, my topamax is not helping manage my symptoms, my imitrex is not helping, and the auras don't seem to be following any sort of pattern.  we are concerned that it is not a neurological or ocular (eye) problem, but a problem with the blood flow to my eyes.  many people who have the problem with their heart that i do (a hole in my heart that causes unoxygenated blood to flow to parts of your body and restricts oxygenated blood to get to parts of the body that need it) have a significantly increased percentage for migraines, especially for severe ones, and it can affect all different parts of your body.  so, we are concerned that my eyes aren't getting enough blood flow and because of that, the blood vessels that supply my eye are in a sense seizing, which is causing the auras.  obviously this isn't a good thing, and it's very scary.  i am scheduling an appointment with my cardiologist for some new heart tests to see what size my hole is and what my options are to fix it and how soon it can be done, in hopes that it will help manage my eye problem.

in the meantime, living with the auras has been a really hard struggle.  on a daily basis, i see:

-  yellow spots covering my vision.  this usually happens when i open my eyes in the morning; i have yellow spots that look like the picture above completely covering my vision.  it still freaks me out, even after all these months, if i have the spots and i look at the dog -- i think something is wrong with them and my heart races for a few seconds before i remember it's just my messed up vision.

-  squiggly black lines.  i see these when i look at a surface, no matter what color it is.  this is usually also when i wake up in the morning, and it looks like little worms.

-  large, blurry, out-of-focus lines just out of my vision.  i see these frequently during the day, just off to the side of my vision when i am looking at something.  they shake, like at the eye doctors when you are taking the exam to test your peripheral vision.

-  a bright whitish-yellow line of light that moves up my vision in a line.  this has only happened twice, both when i have been reading before bed.  it moves up the side of the page and then disappears.

-  bright, colored flashes of light.  i see these all day long throughout my day.  they are always colored and usually blue, purple/pink, green, or yellow.  they're just a quick burst of light, poof, and then they're gone.  they range in size from a pin head to a pencil eraser head size and are anywhere in my vision.

-  shimmering black cloud.  i usually see this when i am very stressed or tired.  it's out of the right corner of my eye, and it looks like a cloud of gnats in the summer, when you can just see them hovering next to you, except for my cloud looks like its kind of shimmering too, or like the black dots are flashing.

i have also had a few times where i wake up in the morning and for about 10-15 seconds, everything in my vision is a bright green before it slowly fades back to the real colors they are supposed to be;  i have been having extra movements behind things, like when you are under a strobe light and you move your arm and you can see like 20 shadows of your arm moving behind it; and sometimes my eyes move really fast.

this past week, i had a VER eye test to check for any problems with my optic nerve.  my test results came back clean, but the test messed with my vision so much that i was stuck in bed for four days.  i had such bad auras triggered by the test that for four days and three nights, i was either in bed sleeping, or awake in my house with blankets covering all the windows, plus my sunglasses on, and just sitting on the couch because any motion made me too dizzy and any light was too much.  my eyes hurt so bad and it was just excruciating.  i hope they find out what is wrong soon because this is just miserable.  =(

i have also had to decrease my heart medicine (metoprolol) dose drastically, because my toes and fingers have started going tingly and numb due to the hole in my heart.  when my rate goes below 90, my fingers start and when it goes below 80, my toes start.  it's not safe for my heart rate to be very high without my medicine, but it's also not safe for my extremities to be tingly and numb, so it's kind of a balancing act right now.

fortunately, my bladder has been pretty cooperative, as has my digestive system!  i am hoping to get all of my eye stuff back on track so i can get back to blogging.  i like being able to talk about whats going on and connect with people, and it's so tough when i can't use my laptop at all.  here's hoping that my eyes cooperate for at least a few more days, right?!  :)  later this week i will be posting some pictures of the few hiking adventures i was able to take when my eyes were okay, and my julep reviews, so stay tuned for that.  as always, i would love to hear from you, so leave a comment with your migraine story or anything you would like to share!

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