Showing posts with label topamax. Show all posts
Showing posts with label topamax. Show all posts

Monday, November 19, 2012

Waking Up Again

a list of the things I have started doing again now that I'm no longer taking the Topamax:


  1. Waking up without feeling sick
  2. Growing Christmas cacti 
  3. Grading more papers without having to fight that enormous shut-down of my body every day
  4. Being able to remember things for longer than five minutes
  5. Crafting - including woodworking, crochet, painting, Cricut stuff, and plans for a stained glass window
  6. Cleaning
  7. Cooking
  8. Remembering people's names.  (Okay.  I'm still not 100% on this one, and I might never be. There is just something about names that gives me problems.  Characters, places, real people.   It's not nearly as embarrassing at it used to be, though.  Maybe whatever the Topamax did to me is undoing itself slowly.)
  9. Wanting to do things in my off time other than sleep.

It constantly scares me how much of my life disappeared into a hole while I was on that medicine.  I know I needed it, but I'm grateful now that I don't.  I hope I never do again.

Sunday, April 22, 2012

Coincidences and Roller Coaster Rides

I stepped down the Maxalt again last night.  100mg per night now for a month.  In one of the odd coincidences that fill my life, NPR emailed me this article about migraines and women last night, too.

I read it with great interest.  I learned several things I didn't know.  My headaches start in the visual center of the brain.  That explains why everything starts to look funny, why I see the halos, and once why I saw that thing that wasn't even there.  I am also not imagining that it destroys my ability to speak and deal with words.  That's documented.  It's so strong with me, though.  It screws with my language more than any other thing.  I still would like to know why that aspect is dominant with me, why I have less of the pain that puts some people in the hospital and become a blithering idiot instead.

The article calls it an electrical wave pulsing through the brain.  It seems, from the description, to be like a tidal wave crashing over every structure in its path, flowing over the landscape with deliberate purpose, causing symptom after symptom as it spreads.

The most disturbing thing from the article was that this study seemed to indicate that like a tidal wave the damage a migraine leaves behind is permanent.  Apparently, the more of them a person has, the more prone to having them a person is likely to be.  It's almost like that big wave wears a path through.  Maybe a fault in the wiring is the better metaphor after all?

The UCLA researcher's comments about needing to control how often they strike and how early to avoid changes in the structure of the brain disturbed me.  I have had a lot, and I do mean a LOT, of migraines, especially before they got me on the Topamax.  At one point, I was having as many as three a week.  What does that mean for the structure of my brain?  What has changed?  How would I know?  Does it matter?  I know that a thing I can't really do anything about is something I should lay aside, but I can't say it didn't give me pause, especially now that I'm coming off the Topamax, thinking about what an "acceptable" number of headaches might be.

Something that was no mystery at all is why they think more women have them than men:  hormones.  Well, duh.  I don't know why that was of scientific interest at all.  Didn't they already know this?  Or, if not, couldn't plain common sense have told them this?  I'm sorry, but how can a medically-trained person possibly not have understood the havoc that a woman's hormones wreak on her body every month?   The power of that chemistry running around inside us?  Maybe it's because so much of the medical science is being done by people who have never had to experience that.  They denigrate what they do not have to deal with.  It would be good if once, just once, all those male scientists could ride that roller coaster and understand it.

Wednesday, April 11, 2012

When Everybody Else Notices, Too....

Last night, I was at Mom and Dad's after a long day having dinner with them, and they asked me how I was doing.  I stopped and thought about it.  Usually after a day as long as I'd had, I'd be exhausted.  I'd be barely awake, dragging myself along trying to make it home so I could collapse.  

I wasn't, though.  I felt good.  I had energy.  I was (for me) chatty.  That is more or less what I relayed to them.    Their response was that they had noticed.  They seemed....relieved.  Apparently the changes in me lately are significant enough to be marked by others, and that made me pause.

I knew the 200 mg dosage of the Topamax had profoundly affected me internally.  I was constantly tired, always fighting to get through what I call the "glass wall" between me and the universe.  I had no energy and my couch was my friend.  What  I didn't realize was that I was doing so bad a job of winning.  I haven't been myself, not for awhile.  I only feel like I'm starting to come back to myself now.  I just thought more of it was internal than it was.

This also makes me wonder again what it will be like to be totally free of this stuff.  I long for the day when it's not in my life at all.  How deep are its roots into me?  What other changes has it made?  I have been on it so long now that I (quite literally with its help) no longer remember what I was like before.  That's more than a little scary, but sort of exciting, too.  I mean, I wasn't exactly an axe murderer before, right?  I hope the changes that continue to be revealed as I step down the dosage keep being good ones.

Monday, March 26, 2012

Back in the Whirlpool

I had forgotten, I guess, what it's like to tinker with the Topamax dosage in a significant way.  Joy indescribable.  There is a reason you have to wean your body from it.  I cannot even imagine what it would be like to stop suddenly, to go from 200mg to nothing.  I think I would probably and quite literally shut down.

I'm writing this because I literally can't focus on anything else right now.  I hate this stuff.  How can anything be such a dual-edged sword, at one moment cutting through the pain in my head and letting me function and at the next slashing my most basic ability to process the world around me with any sort of reason?

Maybe I sound okay as I'm typing this to you, but you would not believe how much the little normal everyday words look wrong, how often I'm getting errors, and how frequently I'm having to stop to pull my eyes away from things in my classroom that suddenly just look....I don't know...miraculous?  Out of place?  Startling as if I'd never seen them before.  And this is when I can get my eyes to focus through the dim halo everything has, that lovely refraction that usually presages a migraine of epic proportions but today, just thanks to the damn Topamax, everything is graced with, a heavenly glow as if angels went around last night and rimed the whole world with rainbows just for me.

And then there are the long lost moments where I come to myself and I've simply been...away.  Someone walked by me this morning and asked me if staring at a particular spot on the hallway floor was a good way to make the day go by faster.  I don't know how long I'd been there in that pose.  Long enough to be noticeable.  I was not daydreaming.  I was just...not.  Perhaps my mind is in there somewhere, slamming bleeding hands against a thick glass wall and screaming, but all I'm hearing is echoes....

I suppose this is some sort of free psychedelic experience maybe, and I should be a good poet and enjoy it, but I don't.  I can't.  My mind is not in good order and not fully under my control.  Some portion of it seems to be out of focus like a lens that needs to be adjusted just slightly to get the picture clear again, but I can't find the right way to do it.  If you've never been in this situation, and really, I'm hoping for your sake you haven't, I don't know if I am getting the frustration of this across to you.  I need to be mentally sharp to do this job well, to feel myself.  My brain is not working, and I can't fix it.

The only consolation I have right now, my only mantra is, "Three More Months."  If I can make it three more months, and I can already tell they're going to be fantastic ones, if I can make it with a minimum of headaches (only 6 in a month!  I was having 2 per week...), then I don't have to have this crap in my life anymore.

Thursday, March 22, 2012

All Good Things....

“If you want a happy ending, that depends, of course, on where you stop your story.” ~ Orson Welles

I went to see my neurologist today, and since things are going well, he decided to start the process of taking me off the Topamax.  I couldn't be happier.  Topamax is a very mixed blessing for me, something that gives with one hand and takes with the other.  I have been on it so long now that I'm not sure what I'm like off it anymore.  It's been about five years (I think), and they've been long ones full of forgetfulness, language difficulties, weariness, and words that go missing at inopportune moments.  I cannot wait to get it out of my system if my poor stupid head will allow it.  If I can manage fewer than six headaches a month, I can stay off it.  We'll just have to see how it goes.

As of today, I have also decided not to fool with something else that I've found frustrating lately.  It's a more personal issue, but it has made me feel ridiculous and bad, and I decided a long time ago that I don't have to be stuck with situations of that type.  I'm not going to "talk it through."  I'm not going to "voice my concerns" because I don't think they matter, and so I won't waste the time doing it.  I'm just going to wash my hands and walk away.  The end.

It's odd to think of these endings coming.  I can only do what I can to follow the advice of Welles above.  I guess we'll just have to see if I stopped these stories at the right time to get happiness out of them after all.

Friday, January 20, 2012

Losing My Words

I wrote this because of something that happened to me this morning.  I suspect, based on the current state of my head, that I am pre-migraine.  It might just be the good old Topamax.  This happens to me a lot, though.  The names of things go wandering.  It is more frustrating than I can tell you as a person who lives in and loves language and words.  At times, it is highly embarrassing.  Imagine looking at someone you have known a long time and not being able, literally not being able, to call that person's name.  This is my world.  

Losing My Words

I am standing in the kitchen
with this bright red not-a-spatula in my hand
spreading the last of the Nutella
on the last of the wheat bread

My mind frantically digs and scrapes
like this nameless flexible rubber tool
trying to get into the edges
and find that which has been left behind

But the word I need, the name has gone
ducked into dark corners
like a child playing hide-and-seek
at an inopportune moment

It will reappear long after
my need for it is done
shout “Here I am!”
smile appealingly and try to crawl into my lap in apology

But for now, I’m left searching
muttering dark incantations
 to force meaning to object
“Does it start with an F?”

Meanwhile, my hands, undaunted and serene
continue their confident labor
having lost no part of their skill and function
because the thing they use is currently anonymous

Thursday, January 05, 2012

A List

What it says on the tin.

Today involved:
  • Waking up from a night of truly horrible dreams, in one of which, in fact, I died.  (And yes, I know you're not supposed to do that in your dreams, but there you have it.)  It may be one of the worst and most profoundly disturbing dreams I have ever, ever had.  That's how I started the day, folks.....
  • Another delay in the car repair.  It *might* be ready tomorrow.....
  • Another big migraine and pill to repel it.  I managed to hide in my room for lunch and clutch my head in the privacy of that 20 minutes.  I was probably written up for that, too, by my new administrator.
  • A big sort of dead numbness inside where my emotions ought to be.  I do not know if this is the Maxalt (I'm hoping) or if I'm just finally gone.  And if I am finally just gone, I do not know of one single thing I can do about it.
  • Driving my Dad's vehicle which actually has a V6 and tops out at 160.  No, I didn't quite get it up to that.  That would be highly illegal.
  • Wearing Gatsby hidden under my plain black jacket again.  He didn't stop the headache, but he was a hint of blue, and he made me smile.  I was hoping against hope that my new The Sun Also Rises shirt would be here for tomorrow, but no dice.  I might wear 1984 instead.  The red will be nice, and that is the January required reading for AP.
  • One of my students asking me about a Murakami novel.  God love him, he sort of made my afternoon.  He may be the first AP student I have ever taught who knows who that is.  I think I might adopt him, put him through school, just on the basis of this alone.
  • Assorted piles of sleeping doggishness on my floor.  Which, with the greatest of reluctance, I must disrupt to walk and crate for the night so I don't find all things in the living room destroyed in the morning.
I tried very hard to put in good things here because I know I put in bad.  I don't want to be bad all the time.  Maybe I balanced it some.  I'm trying.  I need good dreams tonight.  I need my car back tomorrow.  I need....I don't even know what else to ask for.  At least it will be Friday.  That's something.

Sunday, November 13, 2011

Wide-Eyed Blind

The prelude was fine.  I played "In the Garden" fine.  I felt a little flutter when the music director wasn't out on time, but that's nothing new, really.  He's usually in the back working on one last run through on something, and so I take it around one more time, glance at the little clock I keep on the organ console to see if I need to stretch the piece I'm playing or if I have enough time to shift to a different one.  Nothing prepared me for the sheer nightmare that was coming.

It happened during the first congregational hymn which was always going to be tricky anyway since it was one we hadn't done in a long, long time.  The music just...went away.  The notes were there on the page, but they were practically meaningless, especially those for my right hand.  I could only stare in them in panic, reach for bass chords.  I felt my face flush, my fair complexion betraying my distress.

"It's just this song," I kept telling myself.  "Pull it together.  Chord it.  Get through, and the next one will be better."  I hit the ending notes, sometimes the only ones that matter because if you can at least end on the right notes at least it doesn't sound horrible at the end, and I took a deep breath during the prayer.  It had to be better during the next song.  I knew that one.

But it wasn't.  It really wasn't.

The third, the offertory, was an old favorite, and by that point I was actually shaking.  Fortunately, my musical ear and my brain just bypassed my dead eyes at that point and took over.  I played it with minimal error, and it sounded like I knew what I was doing.  But I can guarantee you whatever I was doing and however it was being done, whatever mechanism was active, ghostly possession by Ms. Sarah, my music teacher who passed away while I was in college; innate rote repetition of that song; divine mercy; whatever, it wasn't sight reading.

I was up for the offertory solo tonight, my pianist friend and I rotating that duty week-to-week.  I wanted to laugh, cry, or run away during the prayer beforehand, but I stayed on the bench, set the stops on the organ, slid the music onto the stand, and tried to remember what chords those stupid little blotches represented.  I have been playing the piano since I was seven, the organ since I was ten.  The piece I was playing was not an elaborate variation.  It was an old hymn in the key of C major.  It was like I was suddenly made so illiterate that I could not read a child's storybook.  I honestly had a moment where I thought I would not be able to play it at all, and then that automatic something went click and my hands moved for me and music came out...more or less.

After the sermon came the invitational, a song I've played probably a million times.  It went better, but I could feel the first twinges of a migraine beginning.  It's still rumbling like distant thunder on the horizon.  I am trying to get all my work done so if it does come down like I think it is planning to, I can take a phenergan and make myself unconscious.

This....this scares me.  When it does things like this to me, I don't know if it is the Topamax, the migraines, or something else.  Why am I like this?  It doesn't make any sense.  And why does it take the music?  It takes my spoken words, too, sometimes, but as I look at this page, I can read every single line.  Will it one day take this from me, too?  It's a terrible thing to be afraid of your own mind.  I wish I understood what was happening to me better.  It makes me feel like I'm trapped in a room with Boo Radley.  I never know from day to day if he's going to save me or stab me in the leg with that damn pair of scissors.

Thursday, November 10, 2011

Holding On

Less than four hours of sleep, and I'm clinging to functionality by sheer stubbornness.  I'm shaking like a leaf inside.  I feel like there's an electric current running under my skin.  It's horrible.  If everybody wouldn't think I was a basketcase (which, basically, I guess I am, but in my foolish pride I don't want them to think it), I would sit in the floor and cry.  My heart feels like it is about to pound right out of my chest, and I'm so cold, like I won't ever be warm again.

This is the side of Topamax that they don't tell you about when you go in to take it for the first time:  it's a demanding taskmaster.  If you don't manage the dose and your sleep schedule exactly right, it will beat you into a whimpering and useless mass.  I knew today would be like this when I looked at the clock last night and it was past 12:30 when I was going to bed.  I should have called in for a sub today.  The only way I've been able to manage is to stay constantly moving.  This and the fact that the students are taking tests, meaning that I don't have to be mentally on top of my game, are the only things that are letting me get through.  If I can just get to the end of the day...  If... If...

I am sure this period in my life is serving a purpose other than just pointless misery.  I just wish I knew what the hell it is.