u/epicenter69

Personally, I don’t handle crowds well. I know. Great idea to live in one of the biggest tourist destinations in the world, right?

For that reason, I think I’m just going to sit atop the hill near home and watch about 3-4 different fireworks displays from there. I can see Disney’s from there, along with Clermont’s. From afar is just fine with me.

Just curious what’s going on in the area for those brave enough to tackle the crowds.

Happy 250th America!🇺🇸

Sorry I missed my update last night, but after sleep deprivation, 2-3 seizures and being re-medicated, I was slightly out of it. Y’all were right. The sleep deprivation was no joke. It forced some seizures out. The data was so good, my doctor reinstated my meds after the second one. I slept pretty much the rest of yesterday, into this morning.

Tomorrow is discharge, then I follow up with my epileptologist in a few weeks, after she reviews the EEG herself.

Overall, everyone was great. Having trained staff around to take care of me while having the seizures was pretty convenient. 0/10 for the experience. Hopefully, won’t need another in the very near future.

That said, if your doctor recommends it, DO IT! Get your head activity on screen!

I don’t remember if this game was free, or super cheap, but for a marketing item, it rocked!

(Not my video)

I’m retired military with a VA rating. For months, I’ve been trying to get my non formulary Epilepsy drugs filled through the VA, instead of my military insurance. Yeah, they’re different coverages with different formularies, believe it or not.

After many calls back and forth between my neurologist and the VA pharmacy, I was spinning my wheels and going nowhere. I finally got fed up. I found the VA’s patient advocate electronic messaging address in the VA medical app. I sent them a note. Only three days later, they contacted me back, saying they’re going to start filling those non-formulary prescriptions for me! That’s $88+ saved monthly!

Fellow veterans with a VA rating… if you’re having challenges with your care, use your patient advocate!

At the end of day 3, I finally had a seizure. Not a bad thing. It was caught on camera and I’m sure they got some interesting data from the EEG. The team was at my bedside when I came out of it.

Normally, I would be sleeping, but tonight is my sleep deprivation phase. They’re insisting I stay awake overnight. Zzzzzzzzz

I hope they get more data. I really want this epileptologist to be able to pinpoint a treatment plan.

Until tomorrow…

Today was day 2. I have stopped taking Lamotrigine and Xcopri for a full day now, and there hasn’t been any recorded seizure activity… yet.

Frustrating to sit here waiting for something that may or may not happen. Tomorrow is supposed to be a sleep deprivation check, so they’ll be keeping me awake tomorrow night, I assume.

We shall see…

Today was pretty chill. No changes to meds so far. Just getting a baseline. I will not be taking 2 out of 3 of my meds tonight. I’m staying on Fycompa because it has such a long half-life, that it will likely not be out of my system until I’m discharged. Regardless, I’m nervously excited. I hope they can get some quality data.

I’ll try my best to update daily. My goal is to give those who haven’t experienced this some insight of the process.

I imagine the answer will probably be SC, but I’ve read some interesting stories about diplomats and their families.

Wake up at zero-dark-thirty in the morning. Silence in the house. Nothing happening. A burglar could probably walk in and trip over a dog, and they wouldn’t notice.

But… as soon as that coffee pot comes on, there are two dogs and at least one of the two cats at my feet. They know they get their treats at coffee time. Just one, but that’s engrained into their minds.

Do your animal(s) have a ritual for the morning routine?

Just reminiscing here. I thought you might appreciate this.

40ish years ago, we had a tradition of traveling in a convoy of 2-3 cars full of extended family. We stopped to eat at a restaurant. Once we were done eating, the waitress came back.

Waitress: Would y’all like a cup of coffee? It’s on the house.

My uncle: Does it come with a ladder?

As the title states, I have 2 EEGs scheduled this month. First is my 1 hour. That’s not bothering me too much.

During the last week of the month, my 5 day EEG is scheduled. It will be unmedicated. My Epileptologist has started tapering my Xcopri down, 50mg weekly, until I stop taking it the day the long term starts. I will also stop taking my Fycompa and Lamotrigine that day also.

Last time I stopped my meds for this procedure, I experienced about 20 seizures over a period of 3 days. It was at home, and I learned very soon after that, that my neurologist at the time was an idiot for having the procedure at home.

I don’t fear the seizures so much. I will be in a facility this time. My genuine concern is the post-seizure symptoms that I experienced after the last procedure. Loss of taste, feelings of doom, Déjà vu, extreme depression, and an overall feeling that I was in my last minutes of death.

Last night, my heart was racing and I was in pure panic mode. I’ve calmed down today, but the fear is still lingering. Any advice?

I have a seasoning packet with instructions to make pork chops and apples with potatoes. Easy recipe. I was peeling potatoes and got that dizzy feeling. JUST PEELING POTATOES!

FFS! I hate this. I’m rested now and just have to dice them and cut some apples. Wish me luck.

A victory for him. Not me. I had a brain MRI yesterday, and we were doing the questionnaire beforehand. He got to the medical part, and I disclosed my Epilepsy. He mentioned he also had Epilepsy, but it’s been under control since he was 15ish.

Don’t give up. It’s treatable!