Beau Jackson

So I have a diagnosis, or perhaps I should stay I still have a diagnosis.  And that diagnosis is still epilepsy.  And it still leaves me with that vague, unsatisfied feeling, because I still don’t understand what the basis of this diagnosis is (e.g. why is this epilepsy and not Tourette syndrome).

The neurologist will be presenting my case to all the other doctors in his practice (there’s 8 or 9 of them), and they’ll be discussing my case together for treatment and further diagnosis, so that’s something.  Kind of like getting a bunch of opinions all at once.  I won’t know the results of that discussion until the week of Christmas though.

Meanwhile he put me on a new drug called Keppra, along with the Depakote I’ve been on.  I’m not crazy about that since some of the more common side effects are things like drowsiness and irritability.  Since I’ve been drowsy due to apnea and irritable due to that and general depression as well, the thought of being drowsier and irritable is making me…well, irritable.  Maybe I need a nap? :)

I’m trying to stay positive though.  I had a couple of hours of “poor me” yesterday afternoon after I got the diagnosis, but I think by the time Allena and I started cooking dinner I was over it.

I have slept with a CPAP machine for seven nights now, and I’ve made a few observations.  While I have felt more rested in the mornings,  I’m still awake a lot in the night.  There are a few sleep issues that CPAP can not resolve.  In no particular order:

• Staying up too late
• Not taking the medication to help you go to sleep (so you sit and breathe through the CPAP and stare at the ceiling for an hour or more)
• Seizures/episodes/whatever – I’m still not sure what these dumb things are
• Crying children that have decided to be awake at 3:00am
• Having to use the bathroom
• Dogs barking (and sounding like they’re in your yard, even when they’re not)

So, as far as I’m concerned the jury is still out on the CPAP machine.  I think if I ever get to sleep all the way through the night, it’ll be a big help.  :)

I got to the hospital this morning a little after 9:30 for yet another EEG.  This one is for 24 hours (at least, let’s hope the dr. doesn’t extend it), with a video camera rolling the whole time.  The one upshot to this EEG is that the monitor has been sitting in front of me, so I’ve been able to watch my brain waves on screen all day.  I’ve also been able to watch the video – it’s kind of screen in screen – so as I’m having seizures/episodes/whatever, I can see it on the monitor too.  Allena is right – I do look like I smell something bad.  :)

Watching little wavy lines on a monitor gets pretty tedious after a while though.  I managed to put in about a half day’s worth of work from the hospital bed.  BTW…anybody out there know about XSD schemas?  I’m trying to get a schema generation tool working and I don’t even know all the rules for the schemas.  Work came to a halt with what I call “the afternoon queasies”.  This is basically when I start feeling nauseous and need to have a snack of some sort (thank you depakote).  Mostly it’s been a pretty dull day.

I’d been a little apprehensive that I’d have this EEG and wouldn’t have any episodes.  I shouldn’t have worried – there’s nothing like apprehension to trigger them.  It’s been a fairly “hard” day in terms of number of episodes and strength.

I want to ask a question of my usual readers (all four of you!), but really it’s an open question to anybody that sees it.  After this EEG is done, I think I am done too.  With EEGs that is.  Allena has been skeptical that this procedure will reveal anything useful.  I wanted to have it as sort of a last try to see if any kind of more solid diagnosis could be made.  So if the neurologist recommends more tests, should I have them or not?

My inclination is “not”.  At least it is at the moment.  I had thought about driving up to KC to got to the epilepsy center at St. Luke’s (a research facility), thinking they might get me the answers I want.  But now, I just feel discouraged.  I feel like I should just quit looking for answers, keep taking the medicine and praying this all goes away – when I’m rational.  When I’m irrational I think “heck with it, I’ll just quit seeing doctors and taking meds altogether”.  That irrational part really kicks in when I feel like I’m a burden on somebody.  Even here in the hospital when the nurse comes in and asks if I need anything…which is stupid.  It’s her job to ask after all, and I’m wired to a monitor, and even if I do need/want something it’s not like I know where they keep it, so I couldn’t get it for myself anyway.

I think I’m depressing myself.  No more blogging tonight.

Friday was a pretty rough day.  I got one piece of upsetting news from the neurologist – during my sleep study EEG, there were “several events” that he wants to cross correlated with *another* EEG – this one a 24 hour EEG.  That produced a lot of intense frustration for me.  On the one hand “several events” is pretty darn vague.  Is several 5?  How about 10?  Maybe 20? And what the heck is an “event”?  Is it something that would make him think that my condition is better than he thought or worse than he thought?  Too many unanswered questions, and of course by the time I got back on the phone with his nurse, he had left for the weekend so I won’t hear anything until Monday.

Another bit of upsetting news from Friday – I had a biopsy done on a rather ugly mole, and it turns out it’s cancerous.  It’s a basal cell carcinoma (which I think is Latin for “big ugly mole”) and is technically malignant, although they almost never spread to other parts of the body.  Normally I would not have found it that upsetting, since my goal was to get it removed anyway and this just confirms that it was a good goal.  But put on top of the other news about more EEG tests…well it just kind of sunk me into a pit.

I’m feeling better today though.  The day started pretty early – our neighbor shot a doe and called to ask if we wanted it.  We all like venison, so the day started pretty early with skinning/gutting a dear, but it was a good time all the same.  We also had some folks over that are buying a couple of sheep from us, and they were really nice.

Tomorrow I get to do another sleep study.  It turns out I have sleep apnea after all, so tomorrow they will be putting me on a CPAP machine and getting it adjusted to me.  I’m really, REALLY looking forward to this.  I’m extremely hopeful that I will actually start SLEEPING through the night again – something that hasn’t happened since the seizures started.

Trying to stay positive!

…the medication is beginning to work.  The last three days have been very “light” days in terms of seizure activity.  Just what I call “shivers”.  None of the face-scrunching, shoulder-clenching stuff.  Today went really well – nothing at all until 2:00pm or so, then some very mild shivers.  I did have several “hard” seizures around 8:00pm which I assume is because I’m getting tired (being tired really triggers the seizures).

I feel like calling the neurologist and saying “crank up the dosage another 1000mg and lets get these suckers knocked out!”.  :)  That’s probably not a good idea, but I feel pretty optimistic all-in-all.