Beau Jackson

Today was MRI day.  I really don’t think I had many expectations about MRIs, except that they lay you on a table and slide you into a fairly confined space.  Which is exactly what happened.

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.

As I wait for tomorrow to bring the MRI (I hate waiting!), I thought I would explain what getting an EEG is like, and particularly what it was like for me (’cause hey, mine is the only EEG I have much experience with!)

EEG stands for Electroencephalography – you can see why it’s abreviated!  The gist of the test is that they glue little electrical sensors all over your scalp, and these sensors can detect the electrical activity in your brain.  Since a seizure is the result of electrical activity, an EEG test can detect a seizure and even the after-effects of a seizure if it hasn’t been too long since you had one.  EEG tests are not fool-proof of course.  One description of an EEG that I particularly like is that it’s like listening to a whisper through a brick wall.  The EEG is very sensitive, but it’s listening for a very tiny signal.  Consequently, not all seizures are detected – if the seizure is deeper in your brain, the EEG will not pick it up.

So, my EEG was a nerve-wracking experience, but not because the EEG itself was any big deal.  The nerve-wracking part was in waiting for the test, and then waiting for the results.  I was really worried that I would not have a seizure during the EEG and that the doctor would tell me there was nothing going on.  It turns out I didn’t need to worry about that – I had half a dozen seizures during the test.

The test itself was easy enough.  I went into an exam room with a technician who asked me a bunch of questions.  Like if I’d had any previous history of seizures, or if I’d had any head injuries, or if I had a family history of seizures…stuff like that.  The tech then spent about 15 minutes glueing sensors to my head.  I believe there were 26 – she told me, but I’ve forgotten (doh!).  I will say this – short hair is a good thing if you are having stuff glued to your scalp.  The glue washes out fairly easily, but short hair probably makes the tech’s life easier anyway.

So, once all the sensors are in place, the tech turned the lights down and I reclined back in the chair and put my feet up on a stool.  I was told to close my eyes and just try to relax.  After a minute or two, I was asked to wiggle my left thumb, and then my right thumb, and then both of them.  As I did these things, I could hear the tech typing notes.  She also typed in notes any time I crossed or un-crossed my legs, or scratched my face or moved in any way.  I thought that was kind of humorous…I imagine the test print out is littered with little notes – “patient scratched arm, patient crossed legs”.  After the thumb wiggling I relaxed for another minute or two, and then I was told that a strobe light would be coming on.

At first the strobe was blinking fairly slowly, and was not bothersome.  Then the frequency was increased and WOW!  I could not believe the reaction it triggered in me.  I had several seizures – the strongest I had ever had.  The tech actually turned the strobe off before finishing that part of the test (I guess she saw what she needed!).  It was really a very strange sensation – the way I describe it to people is that it felt like my spine was a guitar string and that everytime the strobe flashed it was like somebody was flicking the string really hard.  PULSE PULSE PULSE.  If I sit and think about the feeling too much it will actually cause me to have a seizure – just from thinking about it!

After the strobe test, I relaxed a few minutes and then was asked to start breathing quickly.  Very mild hyperventilation (this apparently causes distinct electrical patterns in your brain).  This lasted for three minutes and had no discernable effect on me.

After the fast breathing it was just relax-and-try-to-take-a-nap time for about 15 minutes.  I don’t think I dozed off, but I was told that if I did/could that was actually desireable.  Despite being tired I was awfully keyed up.

As the test came to an end, the tech flashed the strobe one last time without warning me and KABOOM!  Another cluster of 3 or 4 seizures, really strong ones again.  I believe I will avoid dance clubs for the rest of my life!

So that was it for the test.  The tech un-stuck all the sensors and I went on home with glue in my hair.  And then I waited for 48 hours or so for the results.  Which sucked.  I hate waiting…I’ve always hated waiting.  Christmas, birthdays, summer vacation, you name it…I can’t hardly stand to wait.  I’m all about immediate gratification.  So waiting for the test results just about drove me nuts.  Anyhow, as mentioned in the last post, the diaganosis was epilepsy and simple partial seizures.  I had already made that diagnosis myself (the amount of information online is stagering).

Tomorrow, I’ll fill you in on “Having an MRI”

Prologue:  About four years ago I was diagnosed as being bi-polar.  Now, I have struggled off and on with depression, but never really had much “mania”, but who was I to argue with a psychiatrist?  After being on a couple of different medications for a year and a half (with great success I might add), my insurance changed and so did the cost of the medications.  I didn’t have $120 per month for meds, so I asked if there were other medications I could try that wouldn’t cost so much.  I switched anti-depressants from the Lexapro I was taking to Celexa (which was lots cheaper).  After a few weeks on Celexa I started having what could I was thinking of as seizures.  They weren’t grand mal (tonic/clonic) seizures – the kind where you fall over and your whole body goes into spasms.  They were more like really severe chills, where your shoulders clench up and you shiver uncontrollably.  I mentioned them to the psychiatrist.  He was dismissive of them – the other drug I was on was actually an anti-convulsant designed to treat epilepsy (which also works well for bi-polar), so he didn’t see how I could be having seizures.  To make a long story short, I got ticked with the whole situation, stopped seeing the shrink, and stopped taking all the medications…and the seizures stopped.  I assumed they had just been a side-effect of the seizures.  I was on the Celexa for three months, I had the seizures for three months.  I stopped taking Celexa, they went away.  Pretty open and shut case if you ask me.

Fast forward to July 4, 2009:  After a three-day-business-trip-from-hell to a customer in crisis mode (don’t even get me started on THAT story), I’m home for the first full day, and out of the blue I start having these stupid seizures again – only this time on not on any medications.  This time there are also more of them, and as a bonus, I feel really frustrated and angry every time I have one.  Oh, and feeling frustrated and angry makes me the seizures worse, so can you say “viscious cycle”?

After a couple of weeks of this, my loving wife says “enough is enough” and makes an appointment for me to see the doctor (thank you dear – yes, I know I’m stupid that way).  Unlike the shrink from four years ago, this doctor takes my description more seriously.  I get a prescription for prozac and an appointment for an EEG.  I have the EEG last Monday (8/3).  I had probably half a dozen seizures during the EEG.  So, results come in last Thursday and sure enough, the diagnosis is epilepsy.

Now, like I said before, my seizures are not the lose-consciousness-fall-on-the-ground-and-thrash-around kind of seizures.  What I have are called simple partial seizures (wikipedia has an excellent article on them), which means the seizure is localized to a specific/small part of my brain as opposed to the entire brain.  I never lose consciousness.  I’m completely aware of what’s going on around me the whole time.  If I had one of these a week, or even one a day, I probably wouldn’t even think much of them.  However, at this point I’m having 30 to 60 of these every day, so they’re kind of hard to ignore.

There is a part of me that wants to pause at this point and rant for a while about the unfairness of life and the suckiness of this situation in general.  And in truth, it’s really, really hard to NOT fall into the “poor me” trap and just sit around feeling sorry for myself.  When I think about things calmly, I know that this could be a LOT worse than it is.

The next step on this new journey of mine is an MRI scheduled for 8/12 (I’ll have to post and let everyone know how that goes).  I have read and been told that a very small percentage of people with epilepsy (1-2%) have a brain tumor as the cause of their seizures.  Conversly, I have read that a rather significant percentage of people with brain tumors (30%) have seizures.  So, no sense in not ruling that possibility out.  I am also being referred to a neurologist who should be able to manage this for me better than my general practitioner.  On the other hand, I would have thought the psychiatrist would have taken it seriously too, and we saw how that worked out.  Hopefully the neurologist is better, but if he’s not, I will not be shy about switching doctors this time around.

One little consequence of all this is that I’m not supposed to drive.  Missouri law loosely states that you must be seizure free for six months before you can drive.  There are some loopholes there that I hope I can exploit, but only time will tell on that.  It’s funny, because the initial knee-jerk reaction to not being able to drive is “oh, no!  how will I get to work!”  But that’s not really all that big of a deal.  I started riding to work with a guy that lives five miles from me and is happy to give me a lift.  No, the really crappy part about not being able to drive is the little inconveniences of it.  Like Allena can’t call me at work and say “hey, why don’t you stop and pick up some pizza for dinner”.  Dominic and Elizabeth are supposed to show some goats at the state fair and we’re not sure how we’re going to get there.  And then there’s the bigger, one-time major inconveniences like “hey, how are we going to get to the hospital when it’s time to have the baby?” (in case you’re not counting…that’s in five months).

So, anyway…I’ve been praying a lot.  Mostly I pray that God will grant me the grace to carry this cross willingly (I haven’t gotten to “cheerfully” yet…still working on acceptance).  I try NOT to pray for healing or for it all to go away.  I figure that God has his reasons, and if it is his will that I be cured, or that the seizures are controlled with medicine, or if I just keep having the stupid things, then that’s his business.  But I can try to accept what he sends me.  If you’re inclined to pray for me, that’s what I’d ask for – just the grace to deal with this without letting it tear my life appart, and the same for my family.

I’m not sure much of anyone still reads this blog besides Allena (ok, Mike still reads it – thanks Mike!), because I don’t exactly post a whole lot.  But at least I’ve got this “out in the open” so to speak and it helps to write things down.  I’ve added a new “Epilepsy” category…haha…it’s my new found obsession in life, so I’ll probably be posting about it more.  Over the next few days, I’ll be posting a few things to help me wrap my mind around this situation (like “What happens during an EEG/MRI?”) that might also be interesting to other people.  More on that later.  Feel free to post questions or email me if you want specifics about something.  I don’t mind, and it helps to talk about it ;)