Epilepsy Monitoring Unit – Home Now

It took me long enough to have a seizure, damnit, and WOW! I had 8 of them. They want me to come back for the memory study, but that will be done on an outpatient basis.

It’s good to be home. It’s good to be back with my family. But I’ll be happier when my back stops hurting.

I don’t remember my last few days in the hospital. The seizures must have hit close together.

The study showed that my seizures are, indeed, generalized. They aren’t localized to one area of the brain or the other. I’m not sure what happens next. I need to follow-up with my neurologist.  But I have a feeling that surgery to get rid of the epilepsy is out of the equation (and part of me is relieved). Still, we know more than we used to, and we’re still getting a memory study done. But it will be done on an outpatient basis.  I know every seizure can affect your memory, so I’m eager to get this done.

Epilepsy Monitoring Unit – Day 5

Still. No. Seizure.

So last night we did the sleep deprivation thing again (Wednesday, Day 4). I chose not to go to sleep at 3:00am, because I was still wide awake. Instead, I stayed up all night long. It’s now 4:15pm on Thursday. I’ve been awake for 31 hours 15 minutes, and I’m still going.

Last night/this morning, when it was dark outside, I watched strobe videos on YouTube. I re-watched Stranger Things Season 3 (for those who don’t watch, it has a photosensitive warning). The first time I’d seen season 3 I had to look away in all the “strobe” scenes. I felt like I missed half the season. Last night I got to see everything I missed.

As of this morning, I’m completely off my seizure control meds. Tonight I’ll have missed 2 doses. My husband came to see me this afternoon. He thinks I’m going to seize tonight. He says I’m showing some of the early warning signs that he’s learned to notice. Things like the look in my eyes or something about how my moods swing back and forth erratically. I hope he’s right, because I could have sworn I heard another person in my room while we were talking. Someone male, yawning very loudly. No one was there and he didn’t hear anything. This could be pre-seizure, or it could be some kind of hallucination because I’ve been up so long. I’m not sure how long you have to be awake for something like that to happen.

Epilepsy Monitoring Unit – Day 4

Still no seizure. You know, if I were at home doing all these things that normally trigger a seizure, I would have had one long before now.

The doctor says they’re seeing plenty of spike activity on the EEG, we’re just not getting a breakthrough seizure yet. Tonight we’re doing sleep deprivation again, and eliminating one of my seizure medications. The other one is still set to half dosage.

I’m starting to get cranky. This is the 4th day in the hospital. I want to be at home. I miss my family. I get visits but it isn’t the same. I miss hanging out with the dude at night, watching Daily Show and YouTube videos. I miss my husband, watching the ballgame with him, talking with him, cuddling with him…just being with him. I miss our cats and our dogs. I miss the feel of our house. I miss sitting in the den with the windows open, listening to it rain (it’s supposed to rain again this week).

Enough of that.

I’ve always done everything I could to avoid having a seizure, so this “trying” to have a seizure thing is strange to me. But I have this dark humor side that is getting used to it. It’s the part of me that says, “Well, if I have to do this, I may as well enjoy it.” So it’s time to watch all those movies, shows and videos that have seizure warnings. I told the neurologist this morning I’ll do anything I can to help. I really don’t want to be here this weekend.

I’ve never watched a strobe before. They’re actually kinda’ pretty. I wish I could enjoy them all the time.

Epilepsy Monitoring Unit – Day 3

I had 3 hours sleep last night because they wanted to try sleep deprivation to trigger a seizure. I couldn’t go to sleep until 3:00am and they woke me up at 6:00am. Horrifying. But, surprisingly enough, I was wide awake this morning, just wanting that morning cup of coffee. I’m only having the one cup today. I had way too much yesterday and my stomach is still telling me about it.

Despite skipping the sleeping pill and depriving me of sleep, I haven’t had a seizure. It’s now 4:15pm and I still haven’t had a nap. I’m running on 3 hours sleep and I’ve been awake just over 10 hours, and I’m still going. At this point, I’ve been awake for so long I don’t think I could fall asleep.

Today they’re still trying to induce a seizure. They did something I didn’t expect. My day shift nurse brought me a shot of Everclear!!! Yes, you read that correctly. Everclear; the 190 proof alcohol you can breathe fire with. The alcohol we all tried at least once when we hit legal drinking age, and swore off of after that hangover. They were going to ask me to just drink the shot, down the hatch. WTF??? I said, “No way. Bring me some juice to mix this with.” So, I’ve had a first. I had a mixed drink in the hospital at 11:00am. Day drinking!

You know, the least they could have done is let me drink decent scotch or whiskey instead.

They also gave me a couple of medications that will lower my seizure threshold. Probably something to do with mixing them with alcohol.

The plan for tonight is to let me sleep, but they want me to stay up as late as I can. I’m kinda’ curious to see just how late that will be. I’m still wide awake. They’re also going to skip the sleeping pill again, and cut the seizure control medication dosage in half. If this doesn’t trigger a seizure, I don’t know what will.

Until tomorrow, everyone. 🙂

Epilepsy Monitoring Unit – Day 2

They have their baseline EEG from day one. Now the fun begins.

Today I’ve been drinking tons of coffee. I’ve had six cups of hospital coffee. Now, I gotta’ tell you, I’m drinking the coffee the nurses drink. They drink some strong coffee. OMG, I haven’t had this much coffee in so long.

I’m trying to stay awake tonight. They’re dong sleep deprivation on me. I have to stay up until 3:00am, and they’re going to wake me up at 6:00am. This is terrible!!! No naps tomorrow, either, until the doctor ok’s it, so I’m living on coffee again tomorrow. Of course, they’re also skipping the sleeping pill tonight.

Today I met the head of neurology. Evidently, she makes it a point to visit all the patients in the Epilepsy Monitoring Unit. I was impressed. She was very knowledgeable and answered my questions about my testing schedule for the rest of the week. Memory test should be tomorrow, providing their department is available. She also correctly set my expectations about my stay here… It may be longer than 5 days, “depending on how you perform,” (direct quote). In other words, if I don’t have a seizure, I stay until I do. Joy….

Fingers crossed. Maybe with the caffeine intake and sleep deprivation I’ll have one and get it over with tomorrow.

Epilepsy Monitoring Unit – Day 1

The Back Story

I know this blog is called Menopause Express, and my intentions when I started it were to stay on topic, but you know what they say about the best of intentions and that road.

I was diagnosed with epilepsy at the age of 10, so I’ve been used to the seizures for a long time. I’ve always been lucky, though. I was considered well controlled. After the hormonal changes of my teen years I’d go about 5 years between seizures. But as I got older, 5 became 3, then 2….then months… This year, since January, I’ve had about 5-6 tonic clonic seizures (full convulsion). This includes the times I’d have 2 in one day. I’ve also had 4 complex partial seizures, which can develop into tonic clonic seizures, but they didn’t. On top of these, I’ve had a couple of simple partial seizures, where you just appear to “space out” a minute. I realize it happened, note it in my diary, and move along. Twelve, total, according to my neurologist, when I saw him in late June/early July. Roughly in a 6 month period.

I’ve tried countless medications. They either stop working, don’t work, or I have horrible reactions to them.

He says I have medicinally resistant epilepsy, which sounds a bit frightening to me. But that’s why I’m here today.

Day 1

We drove in this morning to check-in at the gawdawful hour they wanted me to be here. We decided to leave early to allow ourselves time to get lost, as this was right in the middle of the “medical district” in Houston, where tons of hospitals are, and this particular hospital is HUGE!! While I’m not an early riser, I must say, sunrise over downtown was beautiful. Unfortunately, I was not awake enough to get a picture.

Check-in was…confusing. I’ve been here all day and no one has taken my co-pay yet. But, I seriously doubt I’ll get out of this for free.

On day 1, they do an MRI first. Being the claustrophobe I am, I took my Clonazepam and went with the nice gentleman. We got in there and he covered me with warm blankets, and did something new: he put a nice warm blanket around my head so I could cover part of my face and hide!!!! Oh, this helped so much!!! I went right to sleep and didn’t wake up until it was over.

Once back in my room, it was time to hook me up to all the wires. I feel like I could communicate with satellites now.

Yeah.. And this is how I’ll be for the next few days. Hopefully, I’ll be able to do daily updates. They actually *want* me to have a seizure in here, so, I don’t know how I’ll feel after that. Why, you ask? Why do they want me to have yet another one? Because they’re trying to pinpoint the area of the brain they come from. I don’t really like the idea of having yet another seizure, but if it helps in the long run, and if I don’t go into one of those seizures you can’t come out of, well, I’m in the right place.

Ok, fine. I’m terrified. But they’re good at explaining everything, right down to the why’s, and easing concerns as much as possible.

More tomorrow…

Firsts

I’ve spent over a year experiencing “firsts”. I’ve finally accepted the fact that the Universe is throwing lessons my way and if I keep closing my eyes and going “la-la-la-la-la”, this train ain’t gonna’ stop. I’m going through a period of growth and change in my life. Again.

Tomorrow I get to experience another “first” – one I’m really not looking forward to. One that terrifies me. I’ve debated blogging about this, though, because this particular experience is nothing new to a lot of people out there. I may come off sounding like a whiny little snit. If I do… :: shrugs :: I can’t help it. Try to see things from my perspective.

Tomorrow I will officially be uninsured. My COBRA insurance expires at midnight tonight. Because of my epilepsy, I can’t get healthcare coverage through any of the insurance providers. My COBRA coverage can’t transfer to an individual policy because they’re based out-of-state (something to do with insurance companies not being able to provide coverage across state lines, even though Blue Cross is Blue Cross in WA and in TX). The only insurance I can get right now is the State High Risk Pool, which is ungodly expensive. My other choice is to go 6 months without any kind of coverage and apply for the Federal High Risk Pool, which is affordable. But asking someone with epilepsy to go 6 months without healthcare coverage is asking a lot. Just like asking someone who has a heart condition, or asthma, or any other condition that required regular visits to a specialist and expensive medication.

I haven’t been without insurance coverage since 1987. Yeah, I know… last year I was saying I hadn’t been without full-time employment since 1987.

I don’t like being afraid, damnit. I feel like my last “safety net” is going away.

The Great King COBRA Rant

I can’t convert my COBRA insurance coverage because Premera BCBS is out of state. I have to apply for individual coverage here in TX. They can’t transfer my existing policy because it’s a group policy. I’m an automatic “deny” on my healthcare app with BCBS because they want you to be seizure-free for 5 years before they’ll touch you. They suggested the High Risk Pool.

On the Federal High Risk Pool, you have to go without any insurance coverage at all (note, COBRA counts as insurance coverage) before they’ll cover you. Texas has a State High Risk Pool but if you’re on COBRA and your plan has a conversion option (which, technically, mine does; I just can’t use it because they’re based up in the northwest part of the country and I’m “out of state”), you have to wait 6 months before they’ll cover you.

This. Is. So. Fucked. Up.

I thought “healthcare reform” was supposed to help people who can’t get insurance. WTF? Am I missing something?

My surprise this morning

Those of you who follow my blog have probably figured out by now I have epilepsy. In November of last year, my neurologist added the generic form of Keppra to my seizure control meds (Levetiracetam). He did so in order to better control the brief, 2-second, simple partial (or, Absence) seizures I would have. For those unfamiliar with these, a 2-second simple partial seizure appears to someone else as though the individual is momentarily distracted. The person having the seizure is aware, but it’s more like a “blip” on the radar. That’s the only way I can describe it. But I digress…

I should note, prior to adding this medication I was never photosensitive. That is, strobes did not easily trigger seizures for me. Laser tag was out, but I could safely go to a dance club. In February, that changed. I was out with the girls; we were dancing and having a great time. As the music changed, so did the strobes in the club. I could feel that “out of body” sensation. I just stopped dancing in the middle of the song, looked at my best friend and told her, “I need to get out of here.” We were all on a cruise ship that weekend. I made a B-line for the door and just sat on a bench in the hallway. Lyl came out with me. She was asking me the standard questions. I could answer her but I was slow to respond. Everything was slow. It was a simple-partial seizure, but it was longer than the 2-second blip I used to have. This was more of a “train” of simple partial seizures, coming in waves (and no, not the waves under the boat…<g>).

The same thing happened the next night at the dance club, but not as bad.

I told my neurologist about this, and he increased the dosage of the Levetiracetam. In March, I had a full blown generalized seizure. At this point, I can’t drive for 6 months.

My neurologist increased the dosage of the Levetiracetam again. Four weeks later, I had a full day of the simple-partial seizures, where they come in back-to-back trains.

He increased the dosage again. I had another train of simple-partial seizures 3 weeks later.

At my next appointment, he started to suggest increasing the dosage one more time. I told him I didn’t think that was working. I didn’t think the Levetiracetam was working, and pointed out my threshold seems to be lowering as we increase the dosage. This is what I like about my neurologist – he listens to his patients. He reviewed the overall pattern and agreed with me. We discussed weaning off the Levetiracetam, which is exactly what I’ve been doing over the past few weeks. I haven’t had any problems yet (:: knocks on wood ::).

My surprise this morning? Just out of curiosity, I was doing some research on Levetiracetam. I found out there’s a class action lawsuit on the medication. It seems the generic for Keppra isn’t quite as effective as the brand name. Patients who were switched from Keppra to Levetiracetam experienced an increase in their seizures, causing them to lose driving privileges. It is being stated that persons taking the generic “could lose driving privileges due to the fact it can onset more seizures, it will also impair them from employment or school with time lost.” There have been cases indicated of injuries from the drug. It was noted that at least 59% of patients on this medication had more recurring seizures.

Now, that statistic is from an article written in 2010. However, I found other sites indicating the class action is still being pursued. It’s possible my neurologist is unaware of this (and I do plan on asking him on my next visit). Regardless, why is this drug on the market?

I’m floored.