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.

• 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.  :)

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.

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!

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.

So, no driving again for me, which is a major inconvenience since I was planing on going to Nebraska this weekend to pick up some dairy equipment.  Not sure how that whole thing is going to pan out now.

Conversely, there was some good news – I asked the neurologist about the likelihood of my seizures becoming worse or changing to where I actually do lose consciousness, and he said he couldn’t really garuantee anything but that it wasn’t all that common for them to change drastically.  So silver lining on that one.  It’s good to be hopeful anyhow, and that’s one of those things that was really bothering me.

It’s funny – I had kind of adjusted to the idea of epilepsy, and then when my general practitioner said it was Tourette Syndrome I was SOOOOO relieved!  And now I find myself having to adjust to the notion of epilepsy all over again.  You would think I’d be able to say “oh, well” to myself and revert to my former mindset, but it’s just not happening that easy.

The medication I’m on has been increased…it wasn’t doing anything to help (which I thought was a good indicator that it was not epilepsy).  Turns out I was on a “baby dose” to quote the neurologist.  Basically I was on the minimal dose for somebody my size.  So he more than doubled it – from 750mg to 2000mg per day.  I’m still supposed to let him know if that’s not working in two or three weeks.  Hopefully it’ll have some effect.

I have a lot of thoughts whirring around in my head, but I can really think coherently about it, let alone write.  I suppose most of it boils down to being very upset on an emotional level, but on an intelectual level I’m trying to be thankful to God for this.  That may sound a little odd…being thankful to God for giving me epilepsy (or allowing me to get it if you prefer).  There’s plenty to be thankful for – “at least you can walk” as Mike’s Dad would say, which is a profound way of looking at it.  Dealing with this has brought a lot of important things into focus though, and that’s what I’m really thankful for.  I think it’s brought some things into focus for my family too, which is good.

Anyhow, I have a lot to dwell on.  I’ll have to let you know how the trip to Nebraska does or does not go later.  :)

So, if not epilepsy then what?  My doctor says Tourette Syndrome (here after TS).  I suppose technically, I can’t have TS, because part of a TS diagnosis requires that “you’ve had tics for over a year” and I haven’t.  I also don’t have any “phonic tics” (so, no…I’m not blurting out obscene words, or any words or sounds for that matter).  I guess saying TS is easier than saying “Transient or Chronic Tic Disorder”.

The really really really great part about all this is that I am cleared to drive again.  The really not so great part of it is that I’m still having these stupid episodes with the same frequency.   Don’t get me wrong…I will take TS over Epilepsy all day long.  “Muscular disorder” beats “brain disorder” for sure.

I am truly thankful for all the prayers and support.  The generosity of people (like Seth who drove me to and from work, and Kirk who volunteered to drive me and my kids to the state fair in Sedalia) is humbling to say the very least.

I’m still scheduled to see a neurologist on September first.  I don’t know what will happen after that.  Maybe he’ll change the diagnosis again.  Who knows?  I still feel aprehensive because of that possibility – that it’s not TS, that it’s something else, that it’s something worse.  So keep praying for me, and I’ll keep you posted. :)

So then came waiting on the MRI and waiting on the results, lots of down there.  Then the results – super up (not having a brain tumor definitely qualifies as up!!!).

Now I’m feeling pretty down again.  Not being able to drive is taking some getting used to.  I’ve been trying to find info about people with seizures like mine, and how they relate to driving in particular.  It doesn’t look good.  I’m still hopeful that I’ll be able to drive again, but I can’t help but contemplate what life is going to be like without being able to drive.  I keep telling myself “yeah but I haven’t had any gran-mal or absence seizures, surely I’m different”, and then the part of my brain that does not live in denial chimes in with comments like “that’s true, but how many times have you read that seizures change?”.

I feel very broken at this point.  Not in a psychological sense (’cause the Prozac is still doing it’s job), but in a litteral, physical sense.  I feel like I’m somehow deffective and need to be repaired, like I’ve got a part worn out.  That is not a good feeling at all.

I think this blog may get to be a little bit “diary like” for a while.  It’s somewhat theraputic/cathartic to just write down what’s going through my head.  Sorry for the down post.  I’ll try to be “up” next time.

Of course, the flip side to the good news is that I really don’t know what is causing the seizures.  I find that frustrating.  I hate the idea of “treatment” that just goes on indeffinitely.  “Cure” works much better for me – find the problem, fix the problem, get on with life.  However, if “treatment” is the best I can do, then “treatment” is what I’ll settle for.  And “treatment” beats the heck out of “tumor” :)

The next step is getting in to see a neurologist.  Hopefully that won’t take too long, but even if it does, there’s not the stress level in waiting for an appointment like that!

One thing I have to say about MRIs is that they are LOUD.  And not just the same kinds of loud – all different kinds of loud.  I’m really going to have to look up how they work to figure out why they make the wide variety of noises that they do.

MRIs are also very confining – if you suffer from claustrophobia, I recommend you keep your eyes shut and try to imagine wide open spaces.  In fact, even if you’re not claustrophobic, I recommend you keep your eyes shut, because the inside of the MRI machine is only a few inches from your nose and it’s pretty boring to look at.

In my case, I was getting my brain scanned, so my head was in this little cage like contraption (not really sure what that was for) and my shoulders were up against some padded rests to help me keep still.  I was lying on my back.  I was given a set of headphones to a) dampen the noise of the MRI and b) play music to help me relax and occupy my mind – and do drown out the noise of the MRI.  I mentioned that they’re loud, right?  BTW – whoever came up with the idea of having XM satelite radio available for the headphones had a great idea.  Any type of music you want to listen to, they’ve got it.

So, roughly 20 minutes (4 1/2 songs) of banging and clanging and beeping and chirping and racket, and they slide the table out of the machine and I end up opening my eyes looking straight up into a spot light.  Instant seizure.  They turned the light off, and then they injected a dye of some sort (a contrasting agent to help images show up better) into me, and slid me back in for another five minutes.

I asked one of the technicians (there were two) if he had a laymans diagnosis, but he demured.  One of the techs told me I’d get results in two to four days, but usually in two.  The other said that results would be really fast, and that if I didn’t hear from my doctor before 10:00am tomorrow, I should give him a call.  I’ll be hoping that the results are available to me bright and early tomorrow.

I’ll keep you posted.