"unusual thoughts" a side effect? then what will happen to someone like me who's never had a usual thought?

...especially when you get several of them within a few days of beginning the medicine!!!

Below I've copied a list of side effects for my newest drug, Zonegran. It's an anticonvulsant created to treat epileptic seizures, but it's also used for Migraine patients. Keep your fingers crossed. I, meanwhile, will be suffering from nausea. Ick.
(I've put in bold the side effects I'm feeling, having completed week 1 of treatment.)
"The most common side effects of Zonegran are drowsiness, loss of appetite, dizziness, headache, nausea, and agitation/irritability. These side effects usually occur within the first 4 weeks of therapy."

Luckily, I've not had any of the severe side effects listed below, but the ones in bold crack me up (and frighten me at the same time, of course).

Special Warning(s) with Zonegran:

Some people taking ZONEGRAN can get serious reactions including:

• Skin rash (may be a sign of a dangerous condition)
• Fever, sore throat, sores in your mouth, or bruising easily (may be signs of a blood problem)
• Sudden back pain, abdominal (stomach area) pain, pain when urinating, bloody or dark urine (may be signs of a kidney stone)
• Decreased sweating or a rise in body temperature (especially in patients under 17 years old)
• Depression
• Unusual thoughts
• Speech or language problems
• Drowsiness
• Difficulty concentrating
• Coordination problems

and after all that, I awoke with a Migraine...

The alarm went off at 8:05 even though my first official commitment of the day doesn't start until 7:30 PM. I snoozed a bit more than I intended to, but I felt as if that was forgivable since I hadn't fallen asleep until 2 AM or so.

I woke up, rolled out of bed, and a few minutes later finally acknowledged that the pain wasn't just morning grogginess, as I had naively hoped. No, kids, 'twas this: a morning Migraine. Dammit.

a walk to ... forget.

In an effort to control the five trillion things that trigger my Migraine, I've made an attempt to wake up at a consistent hour for the last few weeks. The mornings have been refreshingly, surprisingly lovely. It's spring now, though it feels more like summer, and the morning hours are the perfect time to stroll downtown for coffee or open all the windows and listen to music before the heat sets in.

There was a short period of my life (last year or so) when I awoke with terrible head pain almost every day. Of course there'd be those few moments when I'd open my eyes, stretch, and feel that hope that accompanies a bright morning: "Is it true? Could I actually feel well today?" In a flash of eagerness, I'd swing my legs out of bed and feel a rush of blood and pain in my head before my feet even had time to hit the floor. Morning Migraine. At this stage in my ever-shifting life, the mornings are good for me and the Migraine sets in during the afternoon or evening, mimicking the pattern that has dominated my illness since I started getting severe headaches as an eighth grader 12 or so years ago.

The question is, what should do with these rare hours of sickness-free time? If I start on work (which is unlikely, since I'm the most infamous procrastinator of all), I end up with a stress-triggered headache very quickly. I want to have times where I can enjoy walks, cups of coffee, time with friends, and hours with books before the pain sets in. This is how I chose to indulge myself this morning. Woke up around 8, eventually walked to a bakery to meet a friend for breakfast, b.s.ed with some buddies who happened to stroll by, nearly finished the novel I'm reading this week, made some phone calls, and enjoyed the morning.

"Time to start the work for the day," I thought to myself as I pressed play on my little iPod and started to walk the mile back to my house. As I walked up the slight incline of my street, I could feel pressure behind my left eye and felt a dull pain rear up in my sinuses. "Ignoreitignoreitignoreit' was a chant going off in my head, so subtle and well-rehearsed that I barely would have noticed it if the pain didn't suddenly increase as I got closer to home, closer to work and closer to the hour when the daily headache usually sets in.

But, as I explained in previous entries, I don't feel free to take Relpax and Naproxen the moment a headache kicks in, as indicated by the label. When you have CDH (or even Migraines that are more frequent than a couple times a month), you're warned against abusing the drug for fear of dependence, rebound headache, and the eventual tolerance you'll build against the drug's effectiveness. The pain and discomfort, as usual, wax and wane depending on my activity level and approximately 4,231 other factors. Right now I am sitting with my back against the headboard, typing as I sit/lie in bed and hear birds chirp excitedly outside. The left side of my neck has a rope of pain that throbs at its own unpredictable schedule.

For now, I feel okay...

my head hurts if I don't sit still/it's an itch that I'll never stop scratching

Once in awhile, I hope to post excerpts from books, songs, poems, movies, etc. that speak to Migraineurs in some way or another.

Waiting for insomnia (often a side effect of Migraine) to pass is like waiting for the headache to kick in, waiting for it to get out, or waiting for it to just remain stagnant for a bit so that you know if you'll be able to move again or not.

Here's an awesome one my friend L. sent me. You can download the song at http://www.3hive.com/2006/01/electric_president.php.

"Insomnia" by Electric President

There's a lightbulb dangling from string
It's slowly swaying over my head now
As I jot down the words that will never be solved
And wait for my headache to numb

And the wind sounds as if the world's sighing
And the moon's just a torn fingernail
As the TV flickers and hums by the wall
And I wait for my eyesight to fade

So, so, so, it's so damn slow
So, so, so, it's so damn slow

Not pride, I choke on ambition
And the old folks circle their graves
And the young ones are busy destroying their heirs (?)
And the heirs are still just wasting away (?)

I sit and watch this screen for a message
Some kind of sign that says we're okay
But the screen stays blank till I turn the thing on
And wait for my conscience to break

So...
So, so, so, it's so damn slow
So, so, so, it's so damn slow

I hope you are learning to listen
And I hope you are learning to stay
And I hope you find what you are missing
And I hope they’re making your way

And I'm a headcase if I don't keep moving
And my head hurts if I don't sit still
It's an itch that I never stop scratching
It's a hole that I’ll never quite fill

So...

the migration of pain

In the last few weeks, I've felt better than usual on my good days but worse than usual on my bad days. That is to say, the pains are more painful and the comfortable days aren't marked by as much pain.

Yesterday I had a particularly stressful day full of assignments and work. The stress was only compounded by the fact that I seem to have misplaced my motivation and gusto for anything other than reading books and writing on my own. I blame part of my distractability on my withdrawal from Effexor XR, which brings up strange little side effects. The rest? My fault. My laziness.

In any case, I met some friends out but didn't last long. I started to get a slight "ponytail headache," the kind where your hair follicles actually start to ache from the pain of holding all your hair up in a small rubber band. Only thing was, I had no rubber band in. At least it wasn't a Migraine, right? 'Cause my Migraines almost always start behind my left eye with dash of right eyeball attention. My town no longer allows smoking indoors, but my hypersensitive nostrils still caught plenty of sharp whiffs of the cigarettes people were puffing on directly outside the open door. The pain behind my nose and cheeks intensified; the throbbing in the very center of my head staked its claim on my skull and encouraged me to call it a night.

Because I am fearful of taking Relpax + naprosyn every time I feel a headache coming on (more coming on that fear in a later entry), I avoided the drugs by going to bed. Woke up about 3 hours earlier than usual with throbbing pain that wouldn't leave me alone. Gave in and took the meds and am already worried about tomorrow's rebound headache that will most likely manifest itself as soon as my intensive 10-hour work day begins.

In the meantime, I tilt the computer screen back so it barely sends its glow to me, and I squint my eyes in pain as I scroll through the menus on my cell phone, trying to call the pharmacy for even more prescription refills my insurance no longer covers...

Pity party is now declared...over!

a kindred spirit...

http://www.thedailyheadache.com/

getting off the drugs

Last week I was in my cruise ship stateroom, unpacking my toiletries on the first night of vacation, when I realized I had left my Effexor XR bottle at home. My loving friend kept me calm when I wanted to throw a tantrum, a tantrum that would surely lead to (yep!) a Migraine attack. I contemplated not telling my parents about the forgotten medicine, the medicine that's marked with warning after warning about how it's dangerous to miss doses and (god forbid!) stop cold turkey.

I splurged and called my neurologist, wanting to leave a message for the doctor about needing a new prescription faxed in. Unfortunately, you can't leave a message unless you're having an emergency. Great. The next day I talked with a nurse, who scolded me and half-yelled into my pained and Migrainous ear that I was late with my appointment and shouldn't be skipping doses of meds and blah blah blah. I refrained from becoming overly defensive and politely relayed the faxing information and fax machine number on the ship. This was Monday; the fax was to come in that afternoon and I could take the paperwork to a pharmacy the next time we were on land on Wednesday.

The fax never came.
The only time I could have called the neurologist again was when I'd get the answering machine that doesn't accept incoming messages.

I have been off Effexor for 8 days. The withdrawal wasn't too odd at first, but in the last couple of days I've had a pounding heart (ha--thank god for that! what I mean was, my heart is pounding a little more dramatically than usual) and a not-quite-with-it way of walking, talking, and attempting to focus.

What is really comforting is knowing that my doctor will scold me and think me foolish for going off this seriously strong medication.

Okay, I'm being negative and sarcastic.
What IS really comforting (and I don't kid) is knowing that I have garnered the courage to tell the doctor that I want to wean myself off some of the meds and see what can be done with fewer drugs (and fewer dollars). Wish me luck.

a little human touch...

So maybe having someone hug me, hold me, talk to me, or stroke my hair is particularly soothing during a Migraine attack mainly because I am an extraordinarily affectionate person to begin with. But I just wanted to say how incredible it is to have others' support while I'm feeling awful.

I've mentioned before that I don't always tell people what's going on with me, health-wise: "Oh, I'm just tired." "Oh, I have a lot of work to do." "Oh, something came up--I'm just not going to be able to make it." In recent months, I've really tried to tell friends the truth as to what's going on in my brain: chaotic, throbbing pain.

To my relief and joy, people have been supportive. Here are just a few snippets of what some exceptional people have contributed to my life lately, causing me to smile and helping the pain be just a little less sharp.

1. My friend R. learned about my Migraine disease several weeks ago during a chat over beers. He has turned out to be incredibly supportive of my search for new methods to help my pain. Some things he's done? Well, he told me he would give me his head if he could. (Silly, but the sentiment was genuine!) He also has done research on Migraine and has forwarded me some enlightening articles.

2. I've said before that I've been getting "weekend headache" during the last several months. A couple of nights ago, I had to go home early due to the pain. Wanting to be supportive of my friends tipsy hunger, I told L. I would try to eat with her downtown. Unfortunately, the restaurant's lighting was entirely too bright and I couldn't stand it. She made her order a take-out one and stood outside with me, making me change benches so that the seemingly glaringly bright street lights wouldn't blind me--she stroked my head as she stood strategically in between my throbbing eyeballs and the street lamps.

3. That same night, I got home and took my medication. Checked my email for the hell of it and one of the boys I'm not-dating-but-not-not-dating was online. As one who's especially vulnerable when trying to endure a Migraine attack, I told him what was going on with me. He stayed online with me as I typed to him how I was feeling. Though he lives really far away, he let me know how he would hug me and hold me if he could. As cheesy as it sounds, that support was so very comforting.

4. Final vignette, and then I'm off to bed.

My insurance plan allows me to spend $1000 on prescription drugs before I have to start paying for the medications myself. Surprise, surprise: with the cost of Migraine medication, my allotment was out after only 3 months of being on my 12-month insurance plan. Recently I got my refill on Relpax & Effexor XR (for Migraine treatment and not for depression, as it's commonly prescribed). The pharmacist was kind but impersonal as she had me sigh the check. "So, you don't have insurance?"
"Oh, I do, but the prescription allotment ran out."
(No comment from pharmacist.)
The grand total for one month of Effexor plus 12 Relpax pills was well over $300. I tried to beam like a champion as I signed away what little money I have in my account. I wanted the pharmacist to smile or do something to acknowledge my situation. Nothing.

Then, as I handed her my signed copy of the receipt, she looked at me and said, "God bless you, ____." I'm not religious, and I must note that her tone was more of one used by a lovely girl raised in the South who uses the phrase frequently rather than one who is extremely Christian.

Just those words, along with her look of genuine empathy, were enough to drive me to tears. I said a quick thanks and made my way out of the building as my eyes filled with water.

Just these little moments make things feel so much better. Just having someone make the effort to connect with me and say that he/or she understands a bit of my struggle means the world...

that's not doing the trick, either....

sleep nor medications nor the warm eye patch nor relaxing nor fresh air nor food nor water nor tea nor trying to get comfort from others.

nothing's doing the trick, and i'm sleepy and migrainey and tired and incurable.

love,
sad migrainegirl

goodnight again...

Lately I've been getting a whole lot of sleep, and I've certainly been keeping hours that are at odds with the normal person's schedule. Staying up until at least 3 AM each night guarantees that I'll wake up after noon the next day--without an alarm clock set, my body won't rouse itself until part of the afternoon has already passed, filled with lucid dreams that feel the way drug-induced sleepiness must feel.

Good news? The Migraines have been at a minimum, and the daily headaches have been almost nonexistent!

Bad news? I've become even more lazy than before, not getting much done at all and letting it all pile up.