March 5, 2017
It happened again, out of the blue, one day at work. They had no clue that this sometimes does happen to me, so it scared them pretty bad. They took me to the ER again…(wonder if you can get frequent flier miles 🙂 ), and they didn’t do a whole lot to me other than instruct me not to drive and to follow up with my neurologist, also prescribing an anti-seizure med. We left for a wedding that weekend, and I came back home and it happened again one evening while I fell asleep. This was quite depressing, as I had been doing so good with not having them, and then bang! 2 times in several days. I got in contact with my neuro office, and he told me he does not want me taking those meds prescribed, and an appt. was set up for Friday morning.
That week was just slightly miserable. Not knowing what to do, or what was going on, not being able to drive, depending on everyone to take you everywhere, did not make me a happy camper. Friday finally came, and basically, in short, the Dr. still said he believes it’s my heart rate that’s not regulated well enough (where I move too fast for my brain/heart to keep up, making my heart rate speed up, and the blood pressure drop, causing a so-called short to pass from my brain to my heart to my body, causing me to pass out, causing me to go into seizure activity) at least in the simplest way that I could understand and explain it. He also said he would recommend getting on a low dose of a beta-blocker to try to regulate my heart rate to a more consistent rate. He also cleared me for driving again, with a warning that if I feel it coming, that I need to pull over and get help. (This made me quite happy and I felt like I had some freedom back 🙂 ) He also said that he didn’t really know what other tests he would even try, and doesn’t want to put us through a bunch of rigga-ma-roll tests that won’t prove anything anyway.
So, yeah, life has been crazy this past week or so, and I’d appreciate your prayers as we continue to try to work with this all. It was very disappointing to me…I thought we had the problem figured out, but I guess something or other caused that to trigger again last week. I do know this…God is still faithful, God still cares, and He can still perform healing miracles!! Thank you for all your prayers, and please don’t stop!! 🙂
Jan. 10, 2017
Sooo, I haven’t been keeping this very up-to-date, I know. But, there really was not much news to explain. Today, I had the 6 month check-up with the neurologist. I highly recommend, if you ever need a good neurologist, go see Dr. Monome at Ohio Health. Friendly, Christian, family-man, answers questions in everyday language, cheerful, optimistic, I could go on, but seriously, I have been so blessed to have a Dr. like that!
Today, was just a consultation to see how I’ve been doing, etc. etc. etc. I suppose I’m an interesting case, as the the NP came in and said, “Dr. Monome always sends me in on the interesting ones.” 🙂 I told him it’s been since November that I have had an episode, while before it was once a month. He was pleased with the progress, and said, we will leave the Beta-blocker prescribed to me, just pretend it never happened. 🙂 He also prescribed a migraine pain-killer, as those have been more frequent, and I’ll be taking those as needed.
He said he’s glad for the good news, left the door open, and said if we ever need something down the road, where weird things start happening again, that I should just give him a call. Super happy with that. As far as driving, since I was never ‘officially’ diagnosed with seizure/epilepsy, they said, I should be ok to drive. (whew!) Beings that the EEG showed that my brain was completely normal, and I have been feeling better with the thyroid treatment I’m receiving, he was pretty willing to keep doing what we’re doing, and go from there!
Thank-you all for praying!! I am positive none of this would be happening without your constant prayers! Continue praying for complete healing, and also continued peace, trust, and rest through this all. It’s not easy, especially when you don’t have a specific treatment pinpointed that will *cure-all*. So anyway, prayers are amazing! Prayers work miracles, and I’m living proof of that! Thank-you!!! 🙂
Dec. 14, 2016
I’ve kinda been neglecting this page because I don’t have any news to put on it. I’ve been doing good..I have good days, and bad, but…who doesn’t?? We’re kind of at a crossroad as to what to do next. My scheduled appointment with the neurologist (just a routine 6 month check-up), is in Jan. I’ve considered cancelling it, since they’ve ruled out the nerves/brain as causing the issues. But then, there are questions I have, and it would be nice to get a Dr.’s perspective on it.
Through the month of Nov. and Dec., my body has been kinda stressing out. With the holidays upon us, I’m not near as careful of what I’m eating. Plus, tax season for the business, and losing my Grandma suddenly, viewings, funerals, emotional overload, trying to find a job that is suitable to me, it’s been a crazy couple of weeks. So far, though, the stress hasn’t been seeming to bother me too much. (One idea was that stress may be causing it) So, yeah, we still don’t have many more news or information. Keep praying for a miracle of healing for my heart (racing, skipping, low blood pressure, etc.). God is a miracle God, and I’m still amazed at the peace I’m feeling through all of it!! I’m positive it’s the many prayers that are being prayed! Thank-you, all!
Nov. 9, 2016
So, because it’s been several weeks, I feel like I should update this at least a little. I did go through the whole month of Oct. without a seizure. PTL!! This was the longest I had gone since July, so I was pretty tickled. 🙂 Then randomly, on a Sat. night, it happened again. 😦 This did kinda get me down because I was finally having hope that something we were doing might be working. I did notice a quicker ‘bounce-back’ recovery (able to do things the next day, that normally I wouldn’t have felt up to) and I did not get as sore right away (possibly a result of it not being quite so hard.)
Since then, I have gotten a call from my Dr.’s office, had a check-up by the nutritionist, had blood work done to check thyroid levels, and have gotten some other clues as to what might be going on in my body. A friend of ours told us that some of my symptoms sound like what she had when they had mold in their house. Dad immediately began doing research on it, and he got convinced quite quickly! Me, on the other hand, not so much! Until I began thinking it through a little, and doing a little research of my own. Most of these symptoms have ALWAYS happened in my bedroom, (seizures, passing out, the severest of my brain fog, etc.). My room is beside an unfinished attic that gets very hot and humid during the summer, perfect for growing mold spores. Also, I sleep with a window A.C. during summer (to keep it cool) and a humidifier during winter (for dry skin)–also ideal for those delightful spores. My one window is right by a roof that is so moist it is mossy because the sun can’t reach it through all the trees. Still no one had ever heard of it causing seizures..until I read this article.
Things kinda began making some sense to us, and so we’re not sure if taking the medication (that is ready for pickup now), is truly the best thing. One of the side effects of the beta blocker is mood swings. (ummm, I’m moody enough, don’t need no drugs helping me out on that! 😀 ) Also, thyroid results came back under-active and apparently the thyroid controls alot of things in your body, some of which is heartrate and pulse…Hmmm, underactive thyroid, too rapid heartbeat, cause fainting, cause seizures..Maybe this could be something. (these are all things we’re been told by Dr.’s, I’m just taking their word for it!) So yeah, we’re kinda at a crossroads right now, not sure which way to go. Prayers for wisdom would be appreciated! If we can, we’d like to treat the underlying cause, not just the symptoms, which is kinda why we are holding off on the meds now. I personally feel that what is causing these symptoms is not just one singular thing, but rather a combination of things that are working against my body, causing it to do weird things. (One Dr. said he wouldn’t think the thyroid would cause the symptoms I’m having….My thinking is there’s always a first time for everything, and knowing my track record, I’d be the one to make history with it!)
I decided to update my health updates through this now. That way, you choose to read it, and I’m not posting it in an ‘in your face’ kind of way. I’m not planning to announce every time I update so just, if you’re curious and haven’t heard anything for awhile, this would be a good place to check. As most of you probably have heard by now, the last news I had was the tilt table test/EEG. This test was the beginning of Oct. sometime, the dates are kinda running together. I was told the reports would be sent over to my neurologist and he would get in contact with me. I waited, and waited, and waited. I was encouraged by some people to keep after the Dr.’s office, and push them, but being that I HATE calling people (Dr. offices, specifically) I kept putting it off. I had determined that tomorrow, after I got off work early, I would call. But then, at work, I got a call. Miraculously, I heard it ring, (I almost never do at work!), saw it was a 614 number, and we weren’t busy at the time. Basically, she told me things I kinda already knew….I passed out, (yeah) I had no seizure activity (amen, please go on), the Dr. had read the EEG and the brain activity was normal (PTL, I finally have proof of that! 😉 ). He also had talked to the cardiologist on staff at the time of my test, and he said he would think it has more to do with my heart racing too fast that is causing me to pass out, rather than brain activity. He recommended before using anti-seizure meds, to try a Beta-blocker, which I guess is just to slow my heart down?? She asked me if that’s something I want to do, and I told her, that sure, I’ll try it, cause I just want this to stop! 🙂 She said that the neurologist will have to probably get with the cardiologist to get me an appt. with him….because we don’t think it has anything to do with the brain, the prescription will probably have to come from a heart specialist, not a brain specialist. Sooooo, we wait some more! This month has been great! I have 4 more days, and I’ll have made it a complete month without an episode. I’ve started to, at night, if I feel my heart seems to be racing, I’ll try to wake up completely, and slowly get up, walk around a bit, and just try to calm down a little. I’ve also been watching what I’m eating right before bed, knowing that some certain foods, or additives in foods, can cause your body to do funny things. The words ‘miracle’, ‘faith’, and just tiny phrases I’ve heard all my life keep coming back to me, as I keep thinking of all God has brought me through already, and what he’s taught me in all of this. (blog post for later, maybe 😉 )
Prayer request for you prayer warriors, and I know you are…I can feel them!! The peace I’ve felt through all of this is tremendous! I’m someone who can normally be read like a book. Most people can tell what my feelings are on something, even when I don’t say a word. I get stressed out very easily, and am a very impatient person. Soooo, you could say that this has been teaching me great lessons. Anyway, I’ve been hoping and praying for a miracle. Right now, a miracle would be making it through the whole month of Oct. without an episode (and then the rest of my life!) Pray for a miracle of healing on my body/heart, and for peaceful nights of sleep. Since, lately, they’ve been happening at night, that’s where my thoughts are often drawn to, when trying to sleep. Also, pray for patience as we wait for that appt. (or for speediness on the Dr.’s side 🙂 ) Thank-you all!! Your prayers are working wonders…YOU HAVE NO IDEA!! (Wow, this turned out to be wayyyy longer than I planned!)