Friday, December 19, 2014

Another One Bites the Dust

The title of this post would be referring to yet another medication designed to help my relentless GI issues that I can no longer take...while I don't really want to take it anymore after the events of this past week, it is a bit disappointing and disconcerting that the one medication that was at least making a dent in my nausea is now not an option...

I apologize if I'm sounding like a broken record, but THANK YOU so much for praying for me and Nick and my family. As much of a challenge as it is to be in the hospital, it is reassuring to know that our needs are being interceded for us when we can't or don't know what to pray for ourselves. Hopefully most of you have received an update from either me or my parents at this point, but if not (or if you want more of the gory details =P) here's the short version of what happened.

Saturday evening after the Christmas concert at our church, I ended up being taken by ambulance to the ER for seizure-like tremors, being unresponsive, and having trouble communicating. I was sent home late that night (early Sunday morning),  but when I woke up on Sunday, was still having tremors, speech difficulties, and vision problems along with my more typical symptoms. After talking with my primary doctor's office, we returned to the hospital so I could be admitted for a neurological evaluation.

I do not remember anything about being in the ER Saturday night or anything from Sunday. Monday when I did become more aware of what was going on, I was still having tremors and speech difficulties. Unfortunately, even with my clear neurological symptoms, it was a battle with the doctor assigned to my case to get a neurology consult...because of my complex medical history, she wanted to attribute my symptoms to my known conditions and did not feel the need for further testing. We spent almost 2 days trying to convince her that the reason we were there was because these were NEW symptoms that I had not experienced before and my primary doctor had sent me there so I could get a neurology workup...it was extremely frustrating to have her not listen to our concerns, especially since I was already having trouble communicating...

We finally decided to contact my specialists in MN and WI and get their opinions. I had seen both of them within the past month, so we sent videos of my tremors and speech issues. Both doctors responded quickly and said I needed an EEG to rule out a seizure disorder. The doctor in the hospital finally relented when we showed her the email from these doctors.

Originally she had wanted to discharge me Tuesday, since she felt there was no need for a neurological assessment, but when we continued to push for it, she agreed and the EEG was scheduled for Tuesday evening. It was disappointing to know I'd be there another night, but we were glad to get the test scheduled. Little did we know how thankful we would be that I was still in the hospital later that night...

Around 9pm when neurology still had not come to do the EEG, we figured it wasn't going to happen until the next morning. Shortly after Nick left to head home, I started complaining of a severe headache and became unresponsive again. I don't remember anything that happened during this event, but my mom and Nick said it was a definitely a God-thing that we were still in the hospital because we probably would have ended up back there had we been sent home. I wouldn't (or couldn't) swallow any medication, so I did not take my evening meds Tuesday night. They gave me some IV medication to see if it would resolve the headache, and thankfully, it eased the headache, stopped the tremors, and knocked me out for the night.

When I woke up Wednesday morning, I was fine. No tremors, no headache, no speech problems...it was a complete 180. We started trying to connect the dots...and finally made the connection! Last week I had gone back to MN with my mom for a follow-up appointment. Unfortunately, I left one of my medications there so I had not taken it for 2.5 days prior to returning to Ohio. Saturday when I got back, I took a double dose of that med (per doctor's orders). I was on that medication the entire time I was in the hospital until Tuesday night when the headache prevented me from taking it. Wednesday I was fine.

We looked it up online and found that while it's a rare side effect, seizure-like tremors and speech difficulties can be a side effect for this medication. We called my doctor in PA who put me on the medication and explained the situation. He agreed that it is a very rare side effect, but he had seen one other patient who also had a seizure and speech problems after increasing the dose....scary to hear, but we were thankful to have an answer!

I did finally get the EEG Wednesday morning, and it was normal...which we expected since by then I had no symptoms...figures...oh well, we were thankful to have figured it out even if the doctor in the hospital still didn't completely agree. I have been home since mid-day Wednesday and have not had any neurological symptoms come back! Yay!

Unfortunately, all my GI issues are still present and seem to be even worse right now. Like I mentioned at the beginning of this post, this medication was the first one to make a dent in my nausea...we were increasing the dose because it still was not completely effective. Because I had such a severe reaction, I cannot take even the lower dose anymore...so we are back to square one in treating my stomach.

I am very thankful to be out of the hospital, and very thankful to have found the reason for those neurological symptoms. It was a scary week, but there were glimpses of God's hand on the situation even when it felt out of control. Again, thank you for your prayers and for walking through this difficult season with us. I wish I could tell everyone in person how grateful we are for the emails, texts, and prayers that really do make a huge difference when it feels like everything is going wrong.

Less than a week until Christmas, and I'm looking forward to celebrating with lots of family (yay for great parents and in-laws!) and NOT in the hospital! While I did spend the first night of Chanukah (Tuesday) in the hospital, I've been home since then and Nick is doing fabulously with his Hebrew while reciting the prayers each night when we light the menorah! Happy Chanukah and Merry Christmas!

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