2.17.2010

So a month or so ago I went to the neurologist about the 30 Year Migraine.  And they gave me medicine.  And I was reluctant to take it, because that's the kind of girl I am.

But? I'm better.
Not 100%.  But close to 90.  I'd say 85-88%.  That's like a B+.  My life has changed so dramatically that tears come to my eyes a few times a week.  Well, they would if one of the side effects of the medication wasn't; patient may be reduced to a dried out sponge.

Turns out I have an Angry Brain Stem. 
It's full of tigers and horses wearing Evel Knievel onesies riding their motorcycles through rings of fire.
They've been reduced to kittens and ponies sliding down rainbows and landing on stormclouds.  That's not so bad.

Then I have these misfiring nerves in the back of my neck that shoot lightning bolts to the top of my head and then those fire laser beams to my eyeballs.  Quick fix is a needleful of some sort of ____caine and ____caine (I forget the prefixes) mix into the base of my skull and the back of my eyehole ridge under my brow.  Gross, but effective. 

I'm a whole new person.  So much more effective than the girl I was before.

There are some drawbacks.  This sounds so terrible, and I'm even embarrassed to admit it, but the weird visions and hallucinations and thoughts I'd have when I had a migraine?  I miss those.  They were so outlandish and bizarre and part of me.  I'm assuming that not too many of you got to experience those things and no, I will not tell you about them because they are not really fit for human consumption, but if you've ever been in really bad physical and/or mental pain, you know what I'm talking about.

There are side effects to the medication.  Some are actually enjoyable.  Tingling in the hands and feet.  This isn't so bad, because it numbs the arthritis.  It makes morning a bit more bearable.  Some are not.  I have the Jimmy Legs.  Restless Leg Syndrome.  This makes it worse.  I might accidentally kick you.

This medication is stealing my words.  I knew this might happen.  I knew it probably would happen.  You've probably noticed it has happened.  That's why you got two posts in a row linking to my other blog.

If  you know me in real life, you may notice I'm speaking much slower these days.  I have to.  It takes me a minute to find the right word.
It's not a stutter, exactly.  But sometimes I may stumble.  Bear with me.  This should pass.
It's like speaking to someone who is not quite elderly, but no longer young.

I'll remember your name, but not the name of that thing I need to write my number down for you.  That thing next to you.  Can you grab me the...  purple... next to the book? 
Thank you.

The wrong word comes.
Primal words come.
Oh boy.  This is the funny part.
Speaking and typing, it doesn't matter.  It's all the same.  I type as much as I speak these days, it seems to flow the same way.

It's been snowing a lot here.
Snow?  In my new vocabulary?  Is snot.
Fall?  Fart.
Despite the snotfart, I managed to get to work on time.
The what?  Do we need to speak like that around the water cooler?  I hope you are wearing a pad for easy cleanup.

Better?  Butt hair.
I've been feeling butt hair.

Normal?  Not male.
That new guy over there seems not male.

Book? Boob
Poor?  Poop
Shirt?  Shit
Fork?  Fuck
Spoon? Poons
Puppy?  Pussy
And on it goes.  And those, my friends, are the clean ones.
I'm a seventh grade boy.

I've warned my closest co-workers and my boss.  I had too.

Another side effect is visual disturbances.  Computer screens are killing me.  So, I'm reading books.  Because my words are gone, I've decided to let them go for awhile and enjoy the words of others. 

I'm reading (and re-reading) the complete works of John Irving, in chronological order.  I've always loved John.  I think I can call him John.  I've always thought, and as Ruth noticed too so I feel justified in saying this aloud, we are sort of made out of the same stuff and he makes me feel more normal.  Not to say we are equals in the field by any means, but I think that he might be loosely held together with twine and faux wood paneled station wagon doors and his holes might be plugged with broken bottles and the drafts might be kept out with rubber doormats and sealing wax too.

44 degrees {comments}:

Under the Influence said...

I totally understand what you mean about crying because you feel so much better. I do that myself.

thelocalsloveit said...

I love your ability to find the silver lining in everything.

Brandie said...

wow, that sucks having to deal with that, but i'm glad you found something that is helping!

Domestic Goddess said...

I have suffered from migraines my whole life, except mine are allergy related. I have those visions and hallucinations, too. I see pretty rainbows and color and sparkly things that aren't there.

My son has a problem with his brain stem. A chiari malformation. He gets headaches, too. Poor kid.

Glad the meds are helping!

Patrick said...

I get migraines. Not constantly, but frequently. For 29 years I didn't know they were migraines. They weren't debilitating, but they hurt. I would take over-the-counter headache stuff (which didn't work), keep the lights low, and try not to walk up stairs or do anything else that raised my blood pressure unless I absolutely had to. They would generally last a day, sometimes two.

And then, shortly before moving away from Philly, I did some statistical consulting for a migraine researcher at Hahnemann. I had a headache the day of our second meeting, and she caught me rubbing my temples as she was walking me out:

"What's wrong?"
"Eh...my head hurts."
"You get headaches a lot?"
"No. Once a week at the most."
"What do you take for them?"
"Sudafed, Aspirin, Tylenol, Coffee."
"Do they work?"
"No, actually."
"Is the pain more like [this] or [that]?"
"[this]."
"[Symptom A] or [Symptom B]?"
"[B]"
"Does [X] ever happen?"
"Sometimes.."
.
.
(more questioning)
.
.
"Damnit, Patrick! You have migraines!"
"I do?"
"C'mere!"

At which point she frog marched me across the street to her clinic and gave me these brilliant little things called Maxalt. They dissolve on my tongue, and then the pain simply vanishes inside of 30 mins or so. They apparently don't work for most people, but they're usually the first thing that doctors will try. Lucky for me, they do the trick.

I will be forever grateful to Dr. Petersen. Here's hoping whatever service I did her as a statistician was a fraction of the good she did me.

Leah Rubin said...

Great news that you're feeling so much better! Your side effects are good fodder for the blog, and the fact that they will abate is really wonderful! Hang in there-- your friends understand, and if anybody doesn't, who needs 'em?

Congrats on the big improvement!

Shelly Overlook said...

I'm so glad you're feeling better. & I don't care if you know my name. In fact, maybe you can come up with a better one for me.

Christina said...

Topamax, right? If not, disregard this....Those are the side effects most common with that med though..cognitive/vision problems. I posted on my blog about this medication, as I am taking it too. I have had awful migraines for 10 years and like you said, its been miraculous for me in terms of making me feel like a normal person (not waking up with tension headaches and building into a migraine by night)
I used to spend literally 75% of my energy focused on my pain. My hands were always on my neck rubbing, pressing....waiting for the headache to peak.
Anyhow, its been a miracle drug but the side effects are pretty harsh, too. Im trying to put it into perspective and realize that it still beats being in pain.
I wrote here (http://escalatinglights.blogspot.com/2010/01/return-of-panic-attack.html) on my blog about having some anxiety when I started getting to a higher dosage...so I backed off and stayed at a low dose.
Still, I feel considerably less articulate (not that I ever was that much so) and forgetful and loopy....probably what caused the anixety!
I too see "trails" in the morning but during the day im fine.

Hahaha its funny...if you dont have migraines you read this (sometimes it makes me see trails and forget words) and think "why the heck would someone take this medication?" but if you have lived with migraines you know just how much they can destroy your quality of life and how many hours a day you spend in pain

Is is topamax or something different? Ive tried a few different preventatives (as well as pain medications and abortive medications like imitrex) but topamax has been 100% different than the rest

Yeesh. Sorry, again for the extra long post!

Christina said...

oh and the tingling hands and feet.....thats trademark with topamax. I read its because it lowers your potassium. Ive been eating a banana each day (I also take a multi vitamin anyhow, though im not sure it has potassium in it) and i dont experience much. Maybe once every few days for a minute or two. That would drive me up the wall!

Haley said...

Im glad they figured out what was going on! I hated having to take my migraine meds because they made me feel zombie like...and I am already starting to lose words...It is payback for me making fun of my father for doing it...
Oh, I also enjoyed your layman's terms of how the pain is created in your head...love it!

Jmarls80 said...

I love John Irving too. 'Hotel New Hampshire' is byFAR my favorite. I think his words are a good choice while you wait for yours to come back!

red-handed said...

My own headache is relatively new -- just a few months -- but it's a gold-medal winner in the 100-metre Stupids. I literally give up in the middle of emails sometimes, and writing posts is just

Theresa Milstein said...

It's amazing the trials and tribulations we seemingly normal people (on the outside, anyway) go through. You've taken your new challenges with a good attitude and seem to be adapting well. I hope the side effects lessen soon.

M.J. said...

I'm glad your new medicine is working. You know, there are other ways to achieve hallucinations without having a migraine...;)

So, the speech problems are supposed to go away right? Let's be fair here, you always replaced puppy with pussy as far back as I can remember. That's not new.

Deb said...

-->Are you eating again on this new medication?

I'm glad the migraines are better.
~deb

Maureen@IslandRoar said...

What med is this? I only ask because I have the 40 year migraine and think I've tried everything. The only thing that helps at all has been imitrex, po and injectable.
Maybe after a while on this med, your side effects will be less noticeable???

Pamela said...

it's just the lido- and coc- talking.
so glad to hear you're feeling better.

Amanda said...

I always blamed the fibro for the word issues. I swear since starting my migraine meds that I now see stuff out of the corner of my eye every now and then. Like people moving that aren't there kinda stuff.

Holli said...

I'm glad the med is working and when my blood sugars are all over the place I do the word thing too. And I can't remember shit I did this morning but I can remember my kindergarten teacher's name now? WTF?

RuthWells said...

SO glad you're feeling better.

And, my husband has the Jimmy Legs also. People look at him funny when he tells them that. Which is why he does, I think.

Call Me Cate said...

The word screwage is common for me as a symptom of my migraines. My specialty is opposites. The stove is cold, I called her tomorrow, my dog just meowed.

Hang in there. I'm cheering you on.

slommler said...

I found drugs for my migraines too! It seems strange not to be suffering right now! It has all become bearable. And I am glad it is working for you. The words come back! So don't fret too much! And sometimes, even with the drugs, the headaches come back to visit. Like an long lost friend. NOT!!!!! But they pass too! Back into the fog so to speak.
Enjoy
Hugs
SueAnn

Amanda said...

I am so, so glad you are feeling better (despite the crazy side effects).

Magaly Guerrero said...

Oh sweet angel I know exactly what you mean. Okay, not exactly but I can relate. I remember when I had my first accident (injured my hip on a 4-wheeler accident) everything change for me. It was hard getting used to and letting others know that I wasn't going to be the same.

In fact, the hardest part was embracing the new me and thanking the Gods for keeping me alive after the damned vehicle ran me over. I'm a runner, and one of the side-effects of not being able to walk for months is that you can't run either--you see, I can joke about it, so I must be better.

I pray you can find a permanent solution to your head-cracking-issues, one without so many side effects.

HUGE healing hugs!

Jay Ferris said...

This what you get for trying to use more than the 7% of your brain God intended for us to use at one time.

JMH said...

The day after I've had too much beer, I sometimes I fall and this brown snow stains my underwear and my better. And my poor is not not male -- egg-smelling liquid shirt. I get to feeling down until I see my buddy's new pussy. She sure is cute.

Heather said...

Hey you! I understand a lot of what you are writing, but, from different means and purposes. I also love John Irving.

As for the things that you miss> I, myself, am so, so glad not to have the low blues, but I miss the bright yellow highs.

JenK said...

Being pain free is a wonderful thing. Congratulations on finding help.

I've always had trouble finding the right words. If only I had an excuse for the problem. I am constantly getting mocked by the husband for my verbal mess.

Amy said...

Holy Meds Batman.
I had no idea.
A migraine is a nasty thing. I've gone to the hospital for them many years ago. I can still remember the awful pain from that almost very distant memory.
I hope you get back to good working order.

Lizzi said...

So glad you are feeling better!

Molly Pants said...

I am also reading all of John Irving's books- though NOT in chronological order. So far my favorite is Widow for One Year. Least favorite is maybe Water Method Man. But even "least favorite" is better than any other author.

My name is PJ. said...

First of all, I'm literally horrified by your description of the treatment! And no, I'm not kidding.

I'm sooooooo glad that the treatment is working, but I've noticed (didn't want to mention it) that your typing has been slower lately. ;)

I love that you have a positive attitude and that you're blogging about the whole thing because so many people have migraines and can relate, so many others (me) want to understand them more.

The seventh grade boy is always fun if he isn't yours....even more fun if he is. I had one. You'll have one. Take some notes now for future use. ;)

I also learned today that you have another blog. I've been there and I'm headed back that way.

Feel better. Feel more. Feel further. You do a great job!!

Heidi said...

I don't have the meegrams, thank God, because I know other people who do and clearly they suck. I do have the can't-remember-what-I'm-trying-to-say word thing, though. It totally happened after I got pregnant. It's vastly frustrating to perpetually have a word at the tip of your tongue, especially when it's a common one. I wind up standing there, doing a lot of pointing and waving, and then I eventually break down and start playing a synonym game in which I can remember lots of *other* words that are very much like the one I want, except they aren't it, until the other person either guesses the right word or we both give up.

Jen said...

Don't feel bad, I stumble over my words all of the time!

I'm so glad that your Migraines have been significantly reduced. I can't imagine living with pain like that.

I love throwing myself into piles of books. After a couple of months I reconnect with the real world, but it feels good to disappear for awhile into someone else's world.

Miss Grace said...

I recognize that it's not the point but a brain stem full of tigers actually sounds pretty kickass.

Gwen said...

Ooooh I wanna hear all the details of your hallucinations! I am a glutton, I know. haha

good to know you are doing better. I am not a medication kinda girl either, but if it works, I say go with it.

A Free Man said...

I've got the jimmy legs without any medication, so yeah, could be worse.

dragyonfly said...

ABS (also known by you as Angry Brain Stem) can be a painful medical conditon. It's outstanding symptom is giving the sufferer a severe case of Slumpucker which is characterized by the shoulders inching up over your head and your backbone dragging behind your ass.

dragyonfly said...

Pee Ess...Im glad you are feeling better.......Headaches sucketh.

SM said...

I used to get migraines pretty much daily. I took medicine and they helped but then a year or so after being diagnosed, I stopped getting them regularly. Still not sure why. I do get them monthly, though. About a day before my period starts, I can't move or talk or listen or anything - I just want to lay in a hot shower with my eyes closed and have the whole world be quiet. The next morning I wake up and my period starts and it all makes sense as to why I had the migraine. For some reason, while I'm suffering, I never associate it with it being time for the monthly visitor.

But enough about me - I'm sorry your medicine is stealing your words! Bastards! But getting back to reading? Awesome!

Lorie Shewbridge said...

I'm also a migranure - for 30 years and have tried all kinds of meds. But I also have other medical problems and am now on several meds including Topamax and Effexor XR which seem to help wonderfully. I get tingly fingers and have word loss, but that could be from my PTSD or my nerve damage from my spine, so who knows.
I'm glad you are starting to feel better, take it one day at a time!
{{{Hugs}}}

sammy said...

my wife gets 'mind-graines' alot and has also been prescribed medicine for them.

ive unfortunately dealt with head issues as well and can actually relate to the outlandish things brewing in my mind as well. what makes it worse(better) is alcohol.

i get headaches often but not as severe as yours. i do have trouble getting the right words out as well, but mine just flat out wont come out. so instead of 'snort fart', nothing comes out until my brain fires again and the word 'snowfall' finally reaches my lips. its different each day though and i never know when another misfire will show itself.

punkymama said...

WOW those are some side effects. If the meds could turn you into a real 13 year old boy now that would be insane.

Seriously, glad to hear you are feeling better. Lets hope the word stumbling passes quickly

Kassie said...

I LOVE, love, LOVE John irving too.