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.

an enlightening chat

Last night I had a chat with a good friend, and for the first time I think I was able to better articulate why I want this blog to be anonymous, and why I don't want to tell my friends & family just how severe my Migraines are.

It's not beautifully written, but the conversation is as follows:


friend: how is school and your migraines?

12:27 AM me: school is okay, migraines have been pretty awful lately

12:28 AM friend:what's wrong with you??? have you always had these headaches?

me:

12:30 AM It's a disease... & I'm trying to be more okay with it, talk about it more, etc. It's always been bad but I didn't "come out" about it full-force until recently, just mentioned it once in awhile to certain people.

Had it since I was 13 or so

12:31 AM friend: do you have them more when you have your period?

my friend M. gets them debilitatingly bad, but only then

12:32 AM me: usually. I was on the pill to help that for awhile, but the pill can also increase migraines in general and it wasn't helping me, so I just went off it

I have chronic daily headache (CDH) and migraine disease, which means for me that I have 1/3 of a migraine 5 or 6 days a week and it gets terrible 2-3 of those days

12:33 AM if you don't tell anyone, I can tell you about my new top-secret blog that might help you understand more!

http://themigrainegirl.blogspot.com

I don't want people to know it's me b/c I am still afraid of coming across as complaining.

friend: WOW!!!!

12:34 AM you're like a super undercover medical....i lost my train of thought on that one, but I think it's grat that you're blogging it. It's helpful for others AND

me: AND?!

hee hee

12:35 AM friend: it really good for you to "complain" (although that's silly to say that) and get it off your chest, ya know, ventilate.

I look forward to reading it and won't let on about your secret identity

me: it's true. I'm trying to realize that more.

thank you.

12:36 AM I have to figure out more how to make it all top secret. must make up a fake email address

friend: but why?

12:37 AM me: I don't want people to know it's me

I don't know why

friend: are you embarrassed?

me: sort of to make it that it's common, not an "everyman" kind of thing

but just that the more specific I make it to ME (with a name, location, etc.) it's as if it's my story in particular, when really my life mirrors MILLIONS of others.

Hard to explain. Maybe I'll change my mind eventually.

I'm not embarrassed

12:38 AM but since I've come out about it and talk about it a lot more, I am a bit wary of talking about it too much. My friends are totally supportive, but still.

friend: I understand that..

me: I also know it hurts my friends to know I'm so sick, and it kills my family. And letting them know about the blog would be like letting them know it's far worse than they think it is

12:39 AM friend: okay, i get it. I did the same thing...down play something that's really really wrong for the benefit of others...

12:40 AM

friend: But is this going to be fatal...i mean are there links to that?

me: no, no links for me.

it's not terminal, just chronic

the correlation for stroke is higher for people with migraine with aura, but it's not dangerous

12:41 AM

friend: Is that why you can't have fake sugar?

me: yep

or fluorescent lightss

or be around strong perfumes and cigs

or stress out

or have stress relieved

or have red wine sometimes, but I never know when it'll affect me

's a mess with all the triggers

12:43 AM friend: what about loud music!!

me: that too

sometimes

it's hard to explain--the neurological disease is always there, and those things we mentioned are triggers, not causes

12:44 AM so the disease is always there, and my threshold for the triggers changes. sometimes I can go to a loud rock show and be fine--that's almost always the case. But other times it will kill me

so I have to always be in tune

and sort of save my energies and decide how I want to spend my time, etc, know ing I'll be sick sometime but having to decide what's worth it and what's not

12:47 AM friend: I'm very glad that you told me. i know it can be annoying to be "the sick girl" or have people always worried about you, but it's also a very very lonely world to keep the big things to yourself.

12:49 AM me: sorry

got kicked off for a sec

thanks for listening, though

and feel free to check out ye olde blog

12:50 AM friend: i am right now you little ghost writer :)!

friend: okay...sweet dreams