Monday, September 29, 2014

Day 101: 10-12 Seizures This Month? Sign Me Up!

You may have noticed (but probably didn't because I unintentionally do this all the time) that I skipped a day.  That's because I've been working on a different post for a month now.  But, it's a really... I'm not finding a word to describe it.  It's just that it's not something I'm sure I want to share.  Not because it's awful or horrifying.  Mostly, just because it's not happy.  In an irreconcilable way.

On to this post.

And seizures!

Induced seizures!

There.  I just wanted you to read something enthusiastic on this blog for a change.

Here's the nitty gritty of it:

Medication isn't working for me.  I've been on a quite a few.  It's pretty much somewhat informed guesswork.  There are so many meds and every individual is so different and usually it's a combination of drugs that ends up working--it's just a matter of finding the right cocktail for me.  Since this is a relatively new ride for me to be on, I was assuming that I was traveling the normal path, headed the right direction, and there really wasn't an alternative, so we had to just keep adding, dropping, and switching doses around on my meds.

Don't get me wrong--this has been a lot of fun.  We found out (through, surprise, guesswork!) that two of my medications taken at certain levels caused my limbs and extremities to go numb and tingly.  So bad that one night I woke up to go to the bathroom and fell on the floor because my leg was gone completely.  After the blood panel and MRI turned up normal, we decided to adjust the meds.  And honestly, I'm grateful it was such a simple fix.

There have been a lot of other fun side effects.  But, I won't make you all jealous by going into detail here.

All the while, my actual bipolar symptoms seem to be getting worse.  We don't know how much is circumstantial and how much could be from meds, because this is all guesswork, in case you didn't know.

My last few appointments with my psychiatrist were interspersed with several pauses of him just looking at me for a while before saying, "I'm really worried about you."

Which pretty much just made me feel awkward.  And I always feel that most things said by psychiatrists and therapists (except my current therapist who is anything but typical), are kind of meant to make me think or feel something that they think will fix me.

I'm pretty sure I'm a really fun patient to treat.

Anyway, it turns out that he actually meant it, and he started to push for something called ECT.  I told my therapist and he thought it was too extreme and tried to kind of persuade me against it.

Fast forward, and apparently everyone agrees that I really need it.

ECT is basically induced seizures.  3 times a week for around 4 weeks.  Because someone somewhere noticed that people with epilepsy frequently experience an elevated mood after the worst of the aftermath is over.

Who knew, right?

I'll be under general anesthesia and given a muscle relaxant, so I'll be spared the worst of it.  But, I'll have really bad headaches and feel nauseated.  And I can't drive.  And I'm supposed to have round the clock care.  Even on my off days.

Oh, and I probably won't remember much of the month of October.  And other memories from my past might become hazy, as well.

A part of me is desperate for this and sad and scared that I have to wait until this weekend to begin.  Medication has about a 40% success rate, while ECT has a 70-90% success rate.  It won't cure me, but it will take the worst of it away and possibly make me more receptive to meds.  I can't imagine how great it would be to feel better than I do right now.  And to not have to fight so hard against dark things.

But, I'm also sort of totally terrified.  Not really of the seizures themselves.  But, what if it doesn't work?  What if I'm in that 10-30% who don't respond?  Where do we go after that?  There are a couple other procedures, but they sound freaky.  As in actually inserting stuff into your brain, freaky.

And I don't want to disappoint anyone else.  People are making some really big sacrifices to help us be able to make this happen.  I don't want it to be a waste.

And HH has had his hopes pinned all over this pretty much since he found out about it.  I don't know how I'll handle his disappointment if this doesn't help as much as he's hoping it will.