Surgery 16 update, ER trip, seizures & such

I made it through my 16th surgery about 6 weeks ago. I had a post-op check today; it was originally 2 weeks ago but they said I hadn't made enough progress and made me come again this time. Thankfully two weeks made the difference though! My incision is behaving well, contrary to what Ehlers-Danlos would like for it to do.

My seizures over the last year have done nothing but worsen despite getting up to 600mg on Topamax. After things seemed to even out with the surgery, I had Keppra added on to my medication routine a couple weeks ago. I quickly noticed my headaches were increasing, and badly. I developed a low-grade fever and had bruises all over, more than normal anyway.

They hit a peak earlier this week on Monday morning. When I woke up, I immediately noticed the noise in my ears was bad enough I couldn't really understand what my husband and children were saying. I couldn't eat, was dragging, and in tears all day. My husband that night tried to get me to go to the ER and I would have agreed but for the 7:30 a.m. dental appointment both of our children had the next morning; we are losing our insurance this month and this appointment was to lead to dental work, so it couldn't be delayed. He knew though when I didn't fight going in after they were done, it must be bad. I usually save hospitals for surgeries and cut arteries. Our plan was for me to accompany them to the dentist, find somewhere to take the kids right afterward, and take me in.

By morning, the vomiting hit. There was no way I could go along. My friend came over and took me to the hospital while my husband and children were still gone, and stayed at the hospital with me the entire time. I didn't even have to sit down in the lobby, when I told the girl through the window that I'd had multiple brain surgeries and it felt like my ICP (intracranial pressure) was up, that I'd had 24 hours of hearing loss and vomiting, they instantly brought me in to triage where it showed my heart rate was wonky, then straight to the windowed room in front of the nurse's station.

I got the usual lines for fluid, pain control, and nausea control. I went for a CT, had the usual blood and urine tests. In a nutshell, I don't agree with the Keppra and stopped taking it. I also have a urinary tract infection, which of course didn't cause this whole thing, but they said it's severe enough that they wouldn't be surprised if it was adding to the pain. So I'm on 1500mg of Keflex for the UTI as well.

As for the seizures, the thought has always been that they are due to the fact the right half of my brain is tangled up in scar tissue from my 9 month bout of meningitis from the fiasco of a brain surgery at THAT place in Phoenix.

Now though, after a year of not only no response to anti-seizure medications, but continuous worsening of the seizures has my neuros now believing they are originating not from my tangled up right half of a brain, but instead from my equally scarred up brain stem. It does make sense, but it is not really news we want to hear.

That's pretty much all I wanted to update on today. It's been a long week and I'm tired, still dragging from the events of two days ago (my children actually ended up having three teeth extracted between the two of them at that appointment when I was at the hospital, it was bad enough the dentist wanted to deal with it right then and there) so I'm going to sign off for now. There is a whole lot more going on than this, boy is that the understatement of the year, but I'll leave it at that for now. Prayers or thoughts would be tremendously appreciated for our household.

The "big one"

After scaring the daylights out of my husband last night by going into full-on forceful convulsions and beating my keyboard with my fists during so, I talked to a good friend who is diagnosed epileptic. She advised to take notice of any patterns that may indicate precursors to the seizures.

It was then I realized a couple hour before the "big one" (what am I, an earthquake??) I'd told DH I was getting hit with dizziness and nausea again. I also experienced another sudden onset of what I've been calling "the sweats." I will suddenly break out in sweat all over, though I am freezing cold. Yet it feels like my insides are roasting and just dying to break out. Even when I was a competitive dancer, I didn't sweat. But with this I suddenly just soak through my clothes and not a thing helps relieve the insane discomfort.

I've been having the nausea, the sweats, and the vertigo since shortly before Easter. I am beginning to believe these are my precursors for an oncoming seizure.

Today I braved up and texted my DH, asking him how often my regular seizures are, where I am found staring into nothing and being completely unresponsive for a couple minutes. His answer? 3-4 times an hour.

Wait. Did he just say per HOUR? You've got to be freaking kidding.

And I asked how long the "big one" lasted, which turned out to be a minute of him trying to get me to respond while I was thankfully in my recliner while I beat into it forward and backward but with no response still.

To me, I'd just been typing someone's response for the ASAP board, so why is my husband suddenly yelling at me and holding my arm?

I can't handle all of this right now. My only local doc is my pain man, he can't manage this, I need a NL. That's another story where I live, where if you're a young woman all the neuros seem to think you just need to be good to yourself and all your problems will magically disappear!

I can be good to myself till the cows come home and it won't change the fact I'm having seizures...more than I can even count.

I need a break. I don't think I can handle anything right now. Nothing. I still can't get sleep. My friend's heads up was right, post-seizure I do feel tired, and I also feel queasy. So why is it I still can't sleep worth squat?

My greatest apologies are to DH. He is scared to death, afraid to go to bed at night and leave me in the living room, afraid I'm going to stop breathing.

I've had several calls today and my emotions are on such overload I just can't take it. I wish I could crawl into bed and sleep for days. WHY can't I:

Unexpected news. Feelings of defeat.

Today, I met defeat face to face. It never had a name before. Yet on this day it intruded into our home, into our lives.

I've had some troubles the last couple months. Long story short, all of this has been due to temporal lobe seizures. Today I was diagnosed with epilepsy.

Suddenly everything makes sense. Sterling only today reported spotting me several months over the last month staring off into space not moving, asking me multiple times if I'm ok but me taking a couple minutes to answer, confusion, then angry.

I don't remember any of that. What I have noticed though, as have online friends, is that when we're "talking" that without warning I break a sentence and without missing a beat saying something completely unrelated, often nonsensical (sometimes in English, sometimes German, etc.)

Come to find out that my near-daily fight with nausea and vertigo, the passing out, all are signs of this kind of seizure, or pending onset.

Enter defeat. I don't know what to do with this.