I'm not sure where the time has gone...3 months since my last post and a LOT has happened. It's December, and will be Christmas soon. I've been kind of a Scrooge or Grinch lately. I'm really hoping I can turn that around and get into the Christmas spirit. I've been listening to Christmas songs since before Thanksgiving, but just overall, I've been feeling really snappy.
A brief recap...October I started taking Tegretol for my seizures. I had been doing fairly well, but by the end of October my seizures were getting out of hand. I was given a new prescription for Ativan. I honestly didn't know this was available in pill format. I had always had it jammed into my arm via I.V. Ativan can only be used extremely sparingly so it doesn't stop working. The doctor prescribed it in case I was having a really hard day of back to back seizures clustering.
My mom went to Arkansas for 1 week to visit her granddaughter and family. This week was a especially hard one. Managing my moms foster son, getting dinner on the table for everyone, it was a stressful week. I had 2 seizures just a day apart. The 2nd one was at a Super Saturday craft day. It was a longer lasting seizure and I felt really lousy afterwards. (Kind of like when you hang upside down.) Then it turned into a migraine. I spent from 3-10pm in bed. Came out of something to eat, and went back to bed.
On a sidenote--Ruby has been doing FANTASTIC at alerting and responding to my seizures. The 1st alert was in Relief Society. She stood up and sat on me and pushed her body up against me to keep me from leaving my seat. I didn't listen to her and was pushing back to get out of the 2nd row. I ended up hitting the ground by the door where I seized. I was disappointed that I didn't make it out the door, since I didn't want to be spotlighted. Another lady made a good point though, the Primary is near the door, so it's probably a good idea I didn't make it out.
The 2nd time Ruby had 2 paws behind me and 2 in front guarding me. Apparently she wouldn't let anyone near me until she recognized someone she knew.
Aside from the stressful week of Mom being gone, we never figured out any connections or triggers. I was agitated, snappy, foggy and the list was long. I was scared to try the meds, but with much prayer I felt I should give it a try. I started at 200mg which is the initial adult starting dose. By day 3 I was lethargic, had hives and my face was swollen. So the doctor back off on the dose and I was taking 1/2 of a 1/2 child's dose. So a chewable table cut in 1/2 equalling 50 mg 1 time a day. I did this for several weeks. Then it became 75mg daily. Then up to 100 mg daily. I spent 2 weeks at that dose. Then moved up to 100 mg AM, and 50 mg PM. A slow process, but I noticed a HUGE difference in how I was feeling. I still had seizures, but I could push myself farther before having a seizure. I was starting to feel like this was the answer. I moved up to 100mg AM, and 100 mg PM. Since I had surpassed day 3 when I had experienced the problems the 1st try, I was feeling on top of the world so to speak. I currently feel down in the gutter. Last Thursday, so (Day 5), I got a rash on my face. I also got a cold, so I wasn't quick to blame the medicine. By Friday it was more like hives on my face, so I stopped taking the Tegretol and hunkered down for the cold I had. It is currently Monday, and those blasted hives are still there. I've been putting benadryl cream on my face daily. Hoping to feel better soon.
I got my letter for SSID a few days ago. They denied to me for SSID. They said I didn't have enough recent seizure workups within the last year paperwork wise. They said I didn't have medical records showing anti-seizure drugs not working. (This one ticked me off a bit...)When I was admitted to Madison Hospital, they had plenty of records there of medications not stopping the seizures, and making them happen more often. They switched me from Zonegran to Topamax to Depakote all within 1 week. Then sent me by ambulance to SLC with a nervous paramedic because the Ativan had stopped working while I was in-patient there. Ativan is a short-term drug. The more it is used, the less effective it is. (A bum deal, since I would want to take it daily because it works, and has no side effects.)
Now that I'm off the soapbox...
I will be going back to the University of Utah hospital sometime next year. Since we are flying out of town, I was leary to get the referral rolling in case they had an appt. while we were out of town. So when we come home in January, I'll get the referral going. I have mixed feelings about going. I feel from a blessing I had that I need to go back and have an open mind. But, it is hard to erase the bad experience I had being there, the frustration and the lack of answers they were able to give me. With that said, I'm trying to keep an open and positive outlook/perspective.
December 21-Jan. 3rd we are spending in California. My mother-in-law bought our tickets to fly out. We are taking Ruby. It will be her 1st time flying. Hopefully, she doesn't mind it. Thankfully we have a direct flight and no layovers just in case it isn't a pleasant experience.
This week I need to get her ID made, so that traveling is easier. Hopefully my doctor will get the letter/prescription for Ruby written soon. I have one, but it is a little outdated. I got it when Ruby was 6 weeks old.
It's late, so I'm going to call it a night.
