my head: a user's guide

The intrusive medical implant experiment, part I

2012-01-24T18:37:00.000-08:00

Even after nearly eight years of dealing with this problem, there are still times -- usually when the pain is getting ready to show me who's boss -- that I find myself kind of surprised by it. Maybe surprised isn't exactly the right word. It's like I'm thinking, 'when did my life get like this?'

I suppose what I mean is that I don't understand. Migraine is such a game changer. What am I trying to say? God, I don't know. I took a hydrocodon a couple of hours ago and it's just starting to kick in. Maybe not the best time to try to blog. I was mindlessly watching TV and my cat came in and seemed to be trying to tell me something. I'd sort of been feeling like an impending migraine and strong narcotics were no excuse for sitting around like a vegetable, so I got up and came into my room. This seemed like about the most productive thing I could manage, so here I am.

Kitty has settled down, so I guess she agrees.

So what I've been thinking is about what I STILL haven't written about.

Let me start from the beginning.

About a year and a half ago, I was going through a fairly bad spell with frequent, intense and long lasting migraines disrupting my life on a fairly regular basis. The Maxalt seemed to be waning in effectiveness, and feeling desperate, I started researching narcotic pain killers.

The very first article I read was on a science website and it was about a study suggesting that the use of narcotic medication was correlated with chronic migraine. Well duh. But even still, it gave me pause. I've had trepidations about strong painkillers for a long time. Pain killers plus a chronic condition pretty much seem like a recipe for addiction -- and addiction scares me.

The trouble is, the pain scares me worse.

Anyway, on the very same page as this scary study was an ad for a company called Ascendant Neuro and it promised relief from debilitating migraine. So I clicked on it and started reading.

The treatment consisted of an implanted devise called a neuro-stimulator. There were testimonials and the site said the device had gone through medical trials and was found to be effective for about 90 percent of patients in relieving migraine. It also said the treatment was often covered by insurance -- a not inconsiderable inducement to look into it further. I figure if insurance covers it, it can't be too out there -- you know how health insurance companies are about anything "alternative."

Anyway, it said on the site that prospective patients had to attend a seminar and that there was one scheduled in Houston in about two months. So I signed up. What did I have to lose?

I went and a doctor, Dr. Jack Chapman, got up and explained the treatment and various details. He said a small battery powered device was implanted in the patient's buttock and wires went under the skin along the spine, branching out to four leads, two of which were connected to the occipital nerves (in the back of the head) and the other two to nerves at the front of the forehead -- maybe the supraorbital nerve? I don't remember exactly. He said there were no side effects to speak of and it had a high success rate. I remember one man who was there with his wife asking skeptical questions, and I knew he was right to do so -- but I also knew I wanted very, very badly to believe this could give me my life back.

There were videotaped testimonials as well, and these were persuasive.

I filled out a form with my medical history and all the treatments I'd tried for my migraines (it filled up a lot of the page!) and I went up and spoke with him afterward. He said I sounded like a good candidate. He seemed very warm and compassionate. I felt good about it.

I signed up.

It took several months to get all my medical records together, go through the evaluation and get approved by health insurance. And that was just for the first step -- a trial run. The trial run was a surgical procedure in which incisions were made in the scalp and the leads were inserted and attached with tape. I was given a hand held device that attached to the leads (which were very bulky and intrusive)with a number of different programs.

I had it for about a week. What am I saying? It was exactly a week. During that week, the results weren't exactly dramatic. I didn't have a bad migraine, and there were two occasions when I felt one might be coming on. But, I couldn't say conclusively whether the headache really would have developed. It seemed likely, as it was during the phase of my cycle when I was most prone to attack. On one of the occasions, the headache went away before getting really bad, and on the other, it got bad enough that I went to bed early (about 7 p.m.) and seemed like the type to set in and hang around for a couple, miserable days.

But when I woke in the morning, it had passed. I took this as a good sign, though hardly proof positive. So I was on the fence, a little. But I didn't have to decide right away. After the trial, they had to apply once again for insurance approval for the real deal, and that was expected to take at least a couple of weeks. They asked me if I wanted to talk to another patient who had the device and I said Hell yeah!

They gave me a number of a woman about my age in the Dallas area who had had hers about six months. I called and asked her questions and she told me about her experiences, which (of course) were good. I mean, it's not like they would hook me up with someone who had a bad experience, would they?

I think the thing I most wanted to know was whether the permanent device worked better than the trial had. She said yes, definitely.

I finally decided to go ahead with it.

But the day of the surgery (no surprise here I guess) I had cold feet. I was afraid and I strongly felt like I shouldn't be doing this. But I had come this far and had waited so long. It had been six months since the seminar -- eight months since I had first seen the ad. Anyway, I told myself it was normal to be nervous and I steeled myself to go through with it.

I'm getting tired and feeling a little nauseated from the pain killer.

Consider this chapter one of this particular adventure in medical treatment. Suffice it to say, after five days in a row of taking prescription medication to avert a migraine, I'm not feeling incredibly great about the success of this device, which I've had now for seven months.

More to come... stay tuned, bat fans.

P.S.

2011-12-28T20:39:00.000-08:00

The only trouble with the wonderful giddiness of migraine recovery is I usually have difficulty falling asleep the first night. Not sure if it's some weird serotonin glitch leftover from the attack or just that I'm so high on life I can't come down...
Not that I'm complaining, mind you.
Just sayin'

ambiguous blessings

2011-12-28T19:24:00.000-08:00

Cold apple juice tastes like nectar at the end of a 48 hour attack.
The only emotion stronger than the absolute terror of the (inevitable) next attack is the utter joy of not being in pain. Of being free to walk around, talk to people, eat, go online, do the 1,001 things that add up to so little, but mean so much.
I haven't been here in a while.
Unfortunately, it isn't because I've found a cure, or maybe just gotten through this long, painful season of migraine.
I could speculate about why, but who really cares?
It was the taste of that apple juice last night, drunk standing in the light of the open refrigerator door, that inspired this. I've seldom tasted anything so perfect.
But does it make the hours of immobilizing pain, nausea and vomiting somehow worthwhile? Oh Hell No.
But -- I guess it's something.
Today when I got to work I was still in recovery mode. I think it's more the dehydration and the fact of not having eaten anything for a couple of days than any lingering effects of the tumult in my head -- but my head did feel slightly odd.
The best way I can describe it was it felt borrowed -- like an unfamiliar car I'm slightly nervous about driving.
I don't know what else to say.
In between the last time I posted here and now, I've read Andrew Levy's migraine memoir, "A Brain Wider Than the Sky."
I had every intention of reviewing it here, as none of the reviews on Amazon quite expressed my feelings about the book. Some liked it and identified it ("Oh my God I have migraines too and it was so great to find someone who understands!") some objected to the flowery language and others were disappointed because they didn't find any new remedies between its covers.
The flowery language didn't bother me (mostly) and a lot of the historical stuff was pretty interesting, but I found the book increasingly difficult to keep reading.
I felt challenged to, oh, I don't know, accept my migraines find some higher meaning or purpose to them, go out and write a heartbreaking work of staggering genius (sorry Dave Eggers) -- and it was hard.
As it to do much of anything when under siege of the big M.
I mostly just hate and fear them, it, whatever.
What I was thinking this time was how much it felt like being held hostage. Held hostage by something that hated me.
I remember, in a half asleep state, suddenly thinking that the problem was this body -- get rid of the body and I'd be fine! That seemed like a brilliant solution in my half dreaming daze. The idea has merit, as anyone who suffers migraines could attest.
I like the way Joan Didion puts it best: "That no one dies of migraine is, to someone in the midst of an attack, an ambiguous blessing." That might not be the exact wording, but I know it's close.
But then, also, given the way I twist and dodge to avoid them, with whatever arsenal of drugs and other devices (more about that later... oh soooo much more)its arrival felt like -- like some profound, implacable fact that I continue to avoid.
Levy said mysterious and cryptic things to the effect of migraine being somehow intentional, being a messenger of some sort -- of being purposeful.
Well, lets just say I took all that with a grain of salt. Having frequent, severe migraine can make you a little goofy. Toward the end of this last bout I remember thinking that I would lose my sanity if it went on another day. I also recall thinking that I was probably being dramatic, but seriously, the severity and duration of the pain... it's hard to imagine not being on some level fundamentally altered by it.
But -- as I was saying, I did start to wonder if there were some psychic source of this hideous malady. If I were indeed somehow bringing it on myself by my actions or lack thereof. If it did indeed have some agenda, something to teach me.
If so, couldn't it just send an email?

Weird new pains

2011-03-02T18:27:00.000-08:00

Well, sadly, the beneficial effects of the CoQ10 seem to be ebbing -- as everything else that ever helped seems to have done eventually. I got two-three good months out of it, so I guess that's something. Also, I'm not sure if it helped with my chronic low-grade depression or if that came about because of the relief from pain...

Anyway, today has been, well, not terrible, but just kind of trying.
I had a fun assignment out at a wildlife refuge for most of the morning, but the whole time had the nagging throb of a threatening headache that skimmed a bit of the fun off the surface.

By the time I got back to the office, the signs were unmistakable and it was time to take maxalt. I got it out of my purse and held the packet in my hand, sat there looking at it and thinking about how much I hated the way it made me feel and set it down on my desk. I thought, "well, maybe nothing much will come of it, and if it does, I'll just call in sick tomorrow if I have to. I still have one sick day left to get me through to April 1, when the clock starts again on sick time (yeah, I know, that's a strange timetable for sick time -- too complicated to explain).

But it kept intensifying and thinking about how much worse a full blown migraine feels than the unpleasant side effects of triptan drugs finally persuaded me to just take the damn thing. I did, but when it hadn't had much effect in an hour, I started to think maybe I'd waited too long and braced myself for the onslaught.

It never quite came. I went home and laid on my bed for a while and felt things shifting about inside my skull. Couldn't tell quite what direction things were headed. Now, a couple hours later, I'm feeling the sensations of the maxalt starting to work -- but there's something slightly worrisome: I'm feeling this weird pain at the back of my head, starting near the top and kind of branching down the sides. Not sure what that is and it's something new.

Anyway, it's disappointing about the coQ10 -- I really hoped that might be of some lasting benefit, but I'm back in one of those phases where I've been fighting a headache for about the past 10 days and I start getting worn out with it and worrying about how much worse things might get. I hate myself for all my worrying. It doesn't help anything, and in fact probably makes it worse.

As I said, I'm looking into another option, but I haven't had a chance to get around to making an entry about it here. I will, I promise. But in the meantime, here's a link to a news story about it:

http://www.mlive.com/living/kalamazoo/index.ssf/2009/10/nerve-stimulation_implants_eas.html

Anyway, it seems a little extreme, but I can't say as I really feel that great about taking triptans 10-15 times a month. The literature that comes with the prescriptions says something about an increased risk of stroke, which is something that concerns me.

Soooo... I will try to get to that post about neurostimulation soon, I promise, oh my vast audience of avid followers!

Coenzyme Q10

2011-01-07T18:35:00.000-08:00

I thought, for the sake of my fellow sufferers out there (none of whom seem to be reading me, but oh well) I'd talk a little about Coenzyme Q10, which has improved my quality of life lately. I superstitiously fear to say anything in case I somehow jinx myself -- but just in case it could help anyone else, I feel obliged to put in my two cents on the subject.

I have other things going on -- other treatments I'm looking into, but I'll try to get to that soon. Hopefully I will have good things to report -- but there are tedious complications to getting cleared through insurance etc. and I don't feel up to delving into all that in my currently scattered state of mind.

Anyway -- I don't remember where I read about CoQ10. But I read about a clinical trial that showed a good percentage of people who took the supplement for four months and reported a 50 percent reduction of headaches. Well -- 50 percent isn't anywhere close to where I'd like to get, but hey, I'll take what I can get.

I bought the stuff and took the first dose before leaving the parking lot of the health food store. I was feeling that familiar queasy, pre-headache pain that has become such a source of dread for me -- always wondering if it' going to stay a headache, or if it's going to segue into the horror of migraine. Anyway, it seemed to help right away. And I began taking it every day. I wasn't sure how much to take at first. I think in the study it said something about people taking between 100 and 300 mg -- or maybe I read that somewhere else. I started with 100, but that didn't seem quite enough, so I upped it to 200 after a few days.

Here's a weird thing -- in the research about using it for migraine, I read that it should be taken as a preventative, but wasn't effective to abort an attack, but one evening I was at work and felt a headache coming on and it was starting to ramp up and I didn't take medicine fast enough and I thought, "here we go." For some reason -- I don't remember really even thinking about why I was doing it -- I took another 100 mg of the CoQ10 -- and the headache faded away!

So -- pretty cool, right? I've used it a few times like that and it seems to work some of the time. BUT -- and of course there's a but -- there are some side effects and I've found I really shouldn't take more than 200 mg per day. Otherwise I get a fairly unpleasant stomach ache and it also aggravates my insomnia. But I feel that, at least for now, it has been helping me keep my medicine use in check. I'd been trying to alternate Exedrin with the Maxalt, but I guess I was using it too much because by the beginning of November it started really ripping up my stomach and I had to cut waaaaay back -- like I didn't take it for more than a month to make sure I gave my stomach lining time to recover. Since then, I've cautiously used it 2-3 times without too much distress, but I'm trying not to use it more than once or twice in any two week period.

So -- I would feel comfortable recommending CoQ10 to any migraine suffer. Possibly people with less medicine sensitivity than I would be able to use it without any side effects at all.

I'll get back to ya on the other stuff I mentioned.

long time no write

2011-01-05T18:59:00.000-08:00

Sorry about that.
Depriving you, all of you, my gazillion followers, of my amazing brilliance and insight.

But enough with the chit-chat.

I wish I could say the reason I haven't written is every thing's been just peachy and the migraines mysteriously went into remission or something like that.
But that isn't the case. A few times, mostly while lying in bed consumed with pain for hours on end, I've had fleeting ideas for posts that would shed light on this horrible affliction. It isn't that I've given up on finding a cure, or at the very least, a way to cope with this and not let it take over everything in my life -- but I've begun to feel that thinking I could somehow write my way out of it was a little naive, or maybe just misguided.

Still, there are many weird little things about living with migraine that seem worth exploring a bit. Like the way that the fear of an attack makes me lose my mind. For instance, even though I don't really believe that chocolate, nuts, pineapple, citrus, balsamic vinegar, or several other food items I can't think of at the moment cause me to have headaches, because I have read that they do for some people, I tend to avoid eating them. Once I threw out the last two pieces of some honey mustard chicken I'd made because I became convinced that the vinegar in the mustard was a trigger. In fact, I haven't made the recipe since, even though I have eaten ketchup and salsa, which probably have as much vinegar as mustard does if not even more.

Maybe that's not really that interesting, but I think it illustrates some kind of magical thinking that begins to creep up around my migraines -- like if I sacrifice chocolate to the migraine gods, they will be appeased and leave me alone. These elaborate rituals of fear spring up around the most everyday activities.

A bright side is that although several things I've tried haven't worked against the migraines, they've been helpful for other things. Like the neti pot, which is a little teapot like thing with which to do saltwater nasal washes. Since I've been using it daily, I haven't had a sinus infection. It's been a couple of years. Once I stopped using it for a couple of weeks and I came down with one. And vitamins -- since I've been taking daily multivitamins, I've hardly gotten sick at all (which is an especially good thing since I use up my sick days on migraines).

But -- I can't say I haven't found some things to help me cope.

The latest thing is Co enzyme Q 10, a kind of freaky supplement that has something to do with mitochondrial DNA (it's something that occurs naturally in cells, and it apparently abates with aging). I read about a study of people taking it daily cutting migraine attacks in half. So I started taking it. It seems to be helping, but I still get clusters of them a day or so before my period and for the first three to five days thereafter and then another little bunch for a week or so around when I'm ovulating. I've read about how those are the two times of the month that the hormone progesterone is at its lowest point. For a while it seemed like using progesterone cream was helping, but then it stopped working. As most things seem to, eventually.

Really, just writing about it is making my head hurt. Okay, I'm in about day three of my cycle, so I'm a little prone that way. But this isn't why I sat down to write. I haven't even gotten to that and I'm already fading out.

I wanted to write about my latest go round with the doctors. I had a kind of unpleasant experience with a doctor who seemed to hate me on first sight. Okay, I admit I had a bad first impression of her as well, but I was willing to give her a chance. She didn't seem interested in hearing what I had to say, and was sarcastic and rude with me. I hate to stop here without telling the whole story, because at the rate I'm going, I won't get back here for another year, but I really don't feel like staring at this screen is doing me much good at all.

So -- I'm going to stop and try -- really try -- revisiting the topic in the next few days. For whatever the hell good it would do. I know it might seem like I'm some kind of pariah here, friendless and bereft -- but I'm really not. I actually have quite a large circle of friends and friendly acquaintances, but I've been reluctant to put it out there and invite them in. Maybe it wouldn't matter. Maybe one or two people would take a gander once or twice and that would be the end of it. But maybe they would judge me, think I'm stupid or melodramatic or self pitying or something. It isn't that I don't tell anyone about them -- I occasionally bore a few of my closest friends and once or twice when I'm particularly distressed I'll spill to someone I really don't know well at all. But it seems like a weakness in a way that somehow this doesn't -- at least, as long as no one I know reads it.

So there you have it. My neurosis all served up on a bed of slaw.

The only other thing is, since I wrote last, I guess in January of last year, I've had four of the worst migraines I've ever had in my life. One in February, that lasted for about 36 hours and involved copious vomiting; another one in the beginning of September that was nearly as long and happened when I was traveling (I was staying at the Crown Plaza Hotel in Alexandria, Va for the worst of it -- by far the nicest place I've ever puked) Then I had TWO like it in October, two weeks apart, then another one that lasted slightly less long Thanksgiving weekend, so instead of making merry and eating too much with friends, I lay in bed, getting up only to vomit or let the cat out.
So that was actually five, I suppose, not four. I guess I could just go back and edit, but that seems like too much bother...

A ray of hope

2010-01-26T19:33:00.000-08:00

Sorry, I've been away for a while -- a bit longer than two months, to be precise.

So where were we?

I'd just had a bad headache and as usual, I had put off using medicine I knew would work because I dreaded the side effects so much.

I've been a bit more pragmatic since then. December was not a great month in my head, but I dealt with it more effectively -- I took medicine when I needed to and while I didn't avoid all pain, I didn't spend any days in bed moaning in agony.

I also gave Excedrin Migraine a try. It works, but the side effects, while different than Maxalt, are still unpleasant. For one thing, there's a shit load of caffiene in that stuff. I try not to take it after 4 or 5 p.m., because I can't fall asleep. Also it upsets my tummy and generally makes me feel a little cruddy (I've never dealt well with caffiene -- it's what's kept me from getting addicted to coffee or Coca-cola) But I did use it a few days when I was at work and needed to be alert.

I'd been trying an herb called butterbur, which I thought maybe was helping, but since I still ended up using harsh medicines about nine times, in retrospect, perhaps it wasn't working that well after all.

But toward the end of the month I got an email from someone who claimed to be a doctor and offered to send me a free trial of a medication he had developed. Dr. Steve Roberts is his name. I wasn't sure what to think. I checked out his Web site and did a little searching around on the Internet about him, and there was indeed a Dr. Steve Roberts who appeared to be a reputable migraine expert and this seemed to be one and the same as the one who contacted me. I figured he either found this blog or found me on one of a number of migraine forums where I have posted questions.

I figured chances were slight that he was a psycho out there looking to poison people, and since the ingredient listed in his concotion didn't appear to be anything that could harm me, I thought, 'what have I got to lose?'

So I said, 'Sure. Send me the stuff.'

It's called Banjo. Here's the link with more information:

http://drstevesbanjo.com

When I got it, I was still a bit nervous about it, so it took me a couple of days to start with it, but then by the third day I was feeling a bit headachy, so I jumped in. I did not end up getting having a migraine or even a headache that day.

I had a pretty decent January, all in all. I had two times when I succumbed to Maxalt. Dr. Steve (who has been very accessible and responsive) asked me if I took two of the lozenges when I began to have the headache and I don't believe I did. In any case, going from nine to two in a month is a good sign (although I have had good months before). So, I'm cautiously optimistic.

I am going to keep using Banjo and see what happens. I would really like to have my life back from the migraine monster.

Migraine is the Devil

2009-11-24T03:07:00.000-08:00

But then, we already knew that...
Well, I had my second two-day knock-down drag-out headache in two weeks. I took my last sick day last time, so this time I guess I'm out on a "personal day" (this year they took away one sick day and gave us an extra personal day, whatever that is)
This headache was fairly run of the mill, except of course that it's dragged on FOREVER and that gets very old.
But as usual, the worst of it is the fear. Where is this going? Is it going to get worse? Am I going to lose more and more days to this monster?
This time, laying there in pain with nothing much to occupy my mind, I considered writing a sonnet about the monster/devil that is migraine.
I came up with a partial first line, but now I've already forgotten it. Something about a monster that eats days...

Anyway, this one was my fault for experimenting, I suppose.
On Saturday I was getting a headache and I tried hitting it with BC powder, which sometimes works. It seemed to dull it for an hour or so, but then it started coming back. The Maxalt has been hitting me pretty hard, so I thought I'd try half of one to see what happened -- and it worked pretty well. Okay, it was slightly more than a half because I broke it in two when I was standing in a long line at Ross trying not to lose my mind while one lady's transaction seemed to take about 20 minutes or so... but I digress. Anyway, I took the bigger "half" of the broken tablet, and, as I said, it worked pretty well. Headache went away and I was only slightly tired -- not overpoweringly sleepy.

So, on Sunday when my head began to hurt again, I took the other, smaller half. Didn't seem to have any effect at all, so in another couple hours I tried a BC. Which, again, had no impact whatsoever.
So by dark, I was in bed, and the fire had started.

Missing work was more of a problem than usual because this is Thanksgiving week and they always need extra stories to get through the days when people are out. Holidays in the newspaper business are really hardly worth the trouble. All the days off mean is you get to do the same amount of work in less time. I know, poor me. Poooooor, poooooor meeeee.

Anyway -- in denial, I got up and my head seemed slightly better, so I decided the migraine was on its way out. But it was getting late so I called in and said I'd be late -- about an hour. About an hour and a half later, with the head throbbing again, I called back and said, uh, sorry -- I was lying. Head's worse again and I don't know when I'll be in.

Oh -- here's one new thing about this one. When it started being a migraine it was on the left side of my head, but by last night, it had moved over to the right side. I don't recall it ever doing that before. Again with the fear... how much worse is it going to get? What if I can't work? What's going to happen to me?

This migraine is not just doing its job; it hates you and everything you stand for with a fiery passion

2009-10-17T10:26:00.000-07:00

Yesterday I had a migraine that I think might have redefined my whole concept of pain. I don't know. Maybe I just haven't had one that bad in a while and I'd forgotten. I think forgetting how bad it can be is a coping strategy.

It started making its presence felt shortly after noon; I dithered a bit on taking prescription meds because I'd taken Relpax the day before. Ever since my rebound nightmare I try, if at all possible, to avoid taking the stuff back to back.

I thought, oh well -- maybe nothing much will come of it.

It was disappointing to think of spending the day in bed because I've been sick most of the week and was finally starting to feel better and wanted to get out and do something.

The migraine hit hard and fast and by 2 p.m. I was unable to do anything but lie as still as possible on my back. The pain was intense. I was painting surrealistic pictures in my mind of people walking around with their heads engulfed in flames -- kind of like human candles.

Fortunately for me, I have the ability to sleep through pain and I dozed most of the afternoon and evening. During my waking moments, I lay there trying to compose some sort of Facebook status update about the attack. This was the best I came up with: "This migraine isn't just doing its job; it hates me and everything I stand for with a fiery passion." I never posted it because it wasn't like I was capable of going online at that point. And afterwards... I don't know. I guess I sort of hate to trivialize the experience that way. Pain is profound, in its way.

Or maybe it just feels that way because it is so... oh, what am I trying to say?

Anyway, as I said, there was something decidedly malevolent about the pain. It's hard for me to describe what it was about this particular migraine that really stood out.

I'm afraid it will come back -- though if it does, I'm planning to hit it with Maxalt (which I've switched to from Relpax -- it's pretty much the same thing, but I think the dissolving tabs probably work faster...) as soon as it starts to rear its ugly head. I'm taking antibiotics and I have this irrational fear that they are causing me to have these headaches... but it also could be because I stopped taking the antidepressant a doctor prescribed for me... there was a whole chapter this past month that by rights I should have recounted here, but lets face it, since I'm pretty sure no one reads this or cares, my motivation is a little less than all that.

I read the literature that came with the antibiotics and headache was not mentioned as a possible side effect, so it seems unlikely...

I had to get up to vomit twice, both times hoping against hope that that would break the pain somewhat. It didn't. But I was able to sleep most of the night. By around 3:30 I woke up and the pain was still there -- but considerably dulled. I was wide awake at that point -- probably because I'd been sleeping most of the time since 2 p.m. the day before -- so I got up and made a cup of sweet chai, figuring I needed to rehydrate. I was up another few hours. If the headache hadn't still been hanging on i just would have gotten up and started doing things -- washing the dishes that have been piling up the past few days I was sick, that sort of thing -- but even though it was at a far more bearable level, I didn't feel like taking the chance of aggravating it until I was sure it was on its way out.

Here's the oddest thing to me about the whole experience. When I was sleeping on this hellish pain, I had kind of a beautiful dream. I dreamt I saw hundreds of white butterflies bursting out of beautiful white cocoons on a curved bough. Then after they flew away, tiny white caterpillars were making their way into new cocoons to start the cycle all over. I don't know what it meant, but it has to be good, right?

A postscript: My head is starting to hurt again, so I decided to Google Azithromycin (the antibiotic I'm taking) and headache -- it seems the literature that came with the prescription is not a complete listing of side effects -- headache IS one of the potential side effects... I'm supposed to take this stuff four more days. Damn.

Still bad

2009-07-07T16:08:00.000-07:00

I'm just tired of being in pain or worrying about being in pain all the time.

In fact, I'm starting to think about going back to the doctors and trying the next drug on the list. It's an antidepressant -- I forget which one -- and it's supposed to prevent headaches. Hell, I'm depressed enough about the headaches that I might qualify for it on those grounds as well. Okay -- I probably qualified for it before, but that's another story for another blog.

I suppose I don't need to say that the last few days have been fairly not great in my head.

I had a knock-down drag-out over the holiday weekend. In all, two days of pain, bad enough at its peak that I seriously considered calling an ambulance to take me to the emergency room. I have a pretty high pain tolerance, but it was really starting to get to me. As usual, what stopped me was the thought of having to talk to people and fill out forms and things like that -- it didn't seem worth whatever relief they might have to offer.

But where was I?

I have a really fairly mild headache right now. It started around mid morning and kicked in a bit more solidly by mid afternoon. I just tried to get my story done well and quickly so I could get the hell out of there in case it really started to roll. Despite my best efforts, my editor wanted to change things in my story and I snapped at him. Felt really stupid.

Although the pain was not anywhere near excruciating, I left work depressed and thinking seriously about quitting and moving in with my mother. Maybe that doesn't sound like that big of a deal, but trust me, only the very sheerest desperation could persuade me to move back in with her or I'd have done it long ago.

I'm not sure where I'm going with this.

Even without the headaches, my life often seems difficult and unpleasant -- but with them? When my head hurts, it just seems like my life would be easy-peesey without the pain. People who are healthy should get down on their knees and thank God, Allah, Buddha or the Flying Spaghetti Monster morning, noon and night.

As you can see, all of my millions of readers (hah!), I'm not coping too well at the moment.
I'm sorry. I'll try to do better.

Losing my cool

2009-06-22T17:34:00.000-07:00

And this week -- not starting off great.
I thought maybe we (by which I mean I) could be done with the headaches for a while already.
But by about 4 p.m. or so, one was definitely setting in.
But I thought I could finish my work and get out before things got hairy -- maybe get on my bike and ride it off before it could really get out of control.
But I was working on two stories (fortunately one got held, or I'd have lost my mind completely) and one of them (the one that ran) was controversial, which always seems to take a bit more effort.
Anyway -- I finished my story and turned it in.
Then it turned out I hadn't saved the final changes and the stupid program let me close it without asking if I wanted to save, as it randomly does from time to time. So I had to go in and redo those parts.
Then my editor started reading it and although I had thought the story was reasonably clean and clear, he had a million questions and wanted to change a lot of things around.
So of course by now my head is pounding and it's getting to that point past which I cannot cope.
I'm afraid I was rather snippy.
I REALLY, REALLY didn't mean to be.
It's just that it started to seem like it would never stop -- his questions, the pain, the pain, the pain.
He was on the last paragraph and I guess I should have tried to pull myself together -- but I lost it and said, "I'm sorry, but I really have to leave."
And flounced out rather petulantly.
I don't understand why this is happening to me. Why it has to be this way. I try so hard to be And yes, I know I'm being a big whiny baby poor me wah.
As always, the fear of losing my job, not being able to do my job, because of the headaches.
Am I being melodramatic?
Possibly.
The pain is not the worst I've ever felt. Not even close. It just feels like a brush fire behind my eyes.
I'm sorry. This whole blog idea seems to be bogging down in self pity.
I didn't mean for it to be that way.
Maybe I should go back to the doctor and see what the pharmaceutical industry has to offer these days.
That back bedroom with the drawn shades and the laudanum is looking pretty sweet right about now.

A possibly tedious recounting of my four-headache week...

2009-06-21T09:45:00.001-07:00

Last week was not a great week in my head.
The headache I woke up with Monday faded away before noon, which was a great relief.
Tuesday was okay.
Wednesday started out fine, but by lunchtime the noise was starting up in my head and it became that question of whether to take Relpax or risk the consequences -- a question I had to answer before eating lunch.
If I time it just right, often I can take it just in time so that it's bad enough so I am certain it was necessary but not so far gone that it won't do any good. I've gotten pretty good at gauging that, generally. On Wednesday I decided to take it, and I think it was justified.
It made me feel really, really sleepy as it sometimes does, but I managed to get through the day.
Just as it was taking effect I was interviewing two geology professors at Lamar University. When it hits me hard like that I often wonder if other people notice something odd about me -- like maybe they wonder if I'm on drugs, which I am, but not maybe the way they think.
Anyway, I got through the day and did most of what I meant to do.
Thursday, by late afternoon, my head began to ache.
Generally, I try to avoid taking Relpax two days in a row, as I think that's too often. And so far, it hasn't often been necessary (that is, since I got off the cycle of rebound headaches, which is the reason I limit my use of Relpax in the first place).
Anyway, out of sheer desperation, I took a whooooole bunch of ibuprofen -- about six 200 milligram tablets. It made me feel a little weird, but miraculously, it seemed to do the trick.
Who knows -- maybe the headache would have faded away on its own.
Friday was okay.
But Saturday, I woke up with a headache -- and I had to work.
I thought about trying the ibuprofen again, but I didn't have any at home. My assignment was to cover a historic gun exhibition in Orange (about 20 miles from Beaumont, where I live) so I got ready for work and drove over there, stopping at a convenience store for ibuprofen. I took five, and I think it might have blunted the progress for a little while. Hard to say.
But two hours later, it seemed to be building again.
I left the museum where the exhibit was being held and went back out into the heat and got in my un-air conditioned car.
I felt afraid to take the drug (because of the side effects) and afraid not to (for obvious reasons).
I looked around me, trying to read the landscape -- maybe it seems stupid to believe in signs -- it's not exactly that I think mystical messages are planted for my edification, it's more that I think my subconscious will use the objects and activities going on around me to help me navigate. Either way, maybe it sounds goofy.
Anyway, I saw nothing much that stood out to me one way or the other and drove on apathetically.
It occurred to me that the consequences of doing nothing could be extremely painful and at the same time, I realized that I WANTED to take Relpax.
So I did.
And again, I think it was the choice that most helped me get through the day I had planned.
Part of my day Saturday was training a new reporter on the duties of the Saturday shift, and I'm pretty sure that would not have gone well with a raging headache -- much less a full-blown migraine.
And this very green rookie reporter would not have been able to cope on her own with the Saturday routine.
So, all well and good.
But I woke this morning with a faint pain in my head.
Nothing major, but waking with pain is usually a poor start to a day.
I have an obligation later today -- but I don't think it would be appropriate for me to take Relpax again.
I was doing so well there for a while.
Granted, this week my period started, which makes it more likely for me to have headaches, but I don't always have FOUR the week of my period.
It seems to go in cycles that way -- but when I get into a bad patch like this, I'm always afraid it's never going to end -- that this is just going to be my life from now on.
It's especially worrisome because, from what I've read, migraine is not considered a disability. Which seems odd to me.
True, for many people, they are not a daily or even weekly occurrence. But when they are, they make it very difficult to work and be productive.
I'm not really sure how this fits in with my ambitious mission statement of finding solutions and cures and all that.

Getting old

2009-06-15T05:43:00.000-07:00

That's a little play on words -- the title of this entry, I mean.
It's just my little way of being funny about having a headache that's creeping into its third day and how it's making me worry about aging.
Anyway, it started Saturday and it's now Monday morning.
At no point has it been totally debilitating -- it's just kept me from doing some things I wanted to do and made things I did do less enjoyable.
I guess I should be grateful it isn't any worse.
But wretch that I am, I'm not grateful. I just want it to stop already.
I've been assuming that this is a hormonal thing, that I'm sliding into menopause (kicking and screaming) and that there's no telling where it will end.
The fact that I woke up early this morning (4 a.m.-ish), too hot and had to turn the a/c temperature down a couple degrees does nothing to dispell this illusion.
But who knows? Maybe it's something else.
A sinus thing?
I should be getting ready for work now -- though going to work sounds about as thrilling as a root canal just about now.
I'm working Saturday and this should be my day off to compensate, but my editor asked me to wait and take off next Friday because a lot of people are on vacation
I guess if it starts getting bad I'll go home.
IMHO it should start going away soon. I was waiting for that to happen yesterday afternoon and evening, but...

What to do...

2009-06-13T17:46:00.000-07:00

Headache today.
Trying not to take Relpax and I might have waited too long for it to be any use anyway.
I had a big day of Getting Things Done planned.
I've been busy with one project and another on the weekends the past few months and my apartment shows it. It's been bugging me, so I made an ambitious to-do list this morning.
I got a few things checked off, and was on my way to drop off recycling and Goodwill donations and pick up cedar sachets so I could put away my winter clothes. But my head was starting to hurt.
As usual, deciding what to do was not easy.
My first impulse was to continue what I had planned, and take Relpax if it seemed like things were getting out of hand. After all, I had some good Getting Things Done momentum going on.
But then I thought maybe I should go pick up the cedar sachets on my bike. Exercise sometimes helps and even if it doesn't, it's always good to get in a work out... right?
So I went and it was good to be on my bike, even though the pain didn't abate much if at all.
On my way home, the dilemma intensified.
I knew if I was going to take it, I would have to take it soon.
But sometimes the exercise cure takes a little time to work.
So I got home and poured a glass of water and sat on the back steps pondering the question.
Maybe it doesn't seem like much of a dilemma to anyone else, but I really don't like taking Relpax, (except for the getting rid of the headache part) because of the side effects; I don't think I should take Relpax, because the side effects make me worry that it's doing something bad to me in the long term; and then of course there is the issue of rebound headaches, which makes me avoid taking it if I possibly can.
So here I am. My head hurts and I was planning to go to a party tonight.
Bummer.
On the bright side, there's a very pleasant breeze blowing in my window for mid-June in Southeast Texas...
If I thought anyone was reading this, I'd ask you to send me healing energy or pray for me or whatever sort of positive thinking you prefer.
I'll take whatever goodness the universe has to offer.

Potatoes, turnips

2009-06-10T19:48:00.000-07:00

I have a very slight headache right now that wouldn't be worth mentioning, except that I've had it for about the past three days.
Not really sure what's up, but I also haven't slept very well all week. Sunday night I had very restless legs (but maybe that's a subject for another blog...)
I don't know if it's my hormones being all kooky and shit or what, but it's worrisome.
I'm glad it's (so far) stayed a mild pain, but -- I guess my fear is that the wild yam, which has been so very good, is losing its effectiveness, or maybe the hormones are dropping even more and the wild yam just can't fight it any more.
I'm trying not to indulge my fears.

A week ago on Monday I had a pretty bad migraine. I was at work and trying to finish up a story -- it wasn't a very difficult story, so I thought I could get it knocked out and get home and chill out and maybe everything would be fine. It's not like I can always tell how bad it's going to be, so I was being optimistic about it.
But I just started feeling worse and worse.
I finished the story and lurched to the ladies room and puked my guts out.
As I think I've said before, I really dislike throwing up, tho I did feel a tiny bit better afterward, but mainly it makes me feel oddly better psychologically.
It's that thing I think other migraine sufferers deal with -- people around us seem to think we're faking it or something, but projectile vomiting (which I'm fairly sure this was) is difficult to fake.

Anyway, it was all pretty miserable.

Just writing about it is making my head hurt.

There's another thing I haven't really addressed here -- superstition.

There was a time I used to call headaches "potatoes" -- or was it "turnips" -- because I was afraid just by saying the name I would somehow bring one on. Kind of a giving it the power of the word type of thing.

Fun with riddles!

2009-05-25T10:31:00.000-07:00

Q: How are headaches like potato chips?
A: It's impossible to stop at just one, no matter how much you want to!

Okay, not such a funny joke.
Saturday, the day of my last post, the Relpax never really did the trick. I suspect it kept the migraine from developing to its full, vomit-inducing potential, but it was still bad enough that I spent most of the day -- from about 2 p.m. on -- laying in bed, sleeping off and on and reading when I could.

Sunday was okay. I woke and rose from bed rather gingerly, waiting to see what my head was going to do. There was a bit of an ache, but I think it was mainly a leftover kind of deal. So I went about my day, got some things done, laundry, dishes, feeding the plants. I even went out for a bit in the late afternoon to fulfill a social obligation.

But by about 8 p.m., a very definite pain was developing. Hoping for the best, I went to bed about 11. When I got up to pee around 5 a.m., it seemed like everything was fine.

I woke around 8 a.m. and lay in bed reading for nearly an hour. By the time I got up it was clear that the headache was still hanging around making a nuisance of itself.

I have so many things I wanted to get done today. If I take the Relpax, I might dodge the pain, but it usually zaps any motivation. If I don't... well, who really knows?

The trouble is, if I'm going to have any reasonable expectation of the Relpax working, I have to take it before I eat. But that means I either have to fast until I decide it's warranted, or take it before I'm really even sure I need to.

Honestly, I think one of the most annoying things about my migraines is all the choices I have to make. I'm really not very good at decisions.

This morning I said to Hell with it and took a risk.

I decided to see if I could knock the sucker out with exercise before I gave in and drank the Koolaid (so to speak).

I needed fuel to exercise, and I decided a smoothie might be a good compromise. Unfortunately, all I had was chocolate soy milk (bought in a weak moment, it has been sitting in my fridge unopened for months). Now, I don't think chocolate is a "trigger" for me, but since it is for some people, I'm a little superstitious about it (another bad effect of migraines on me -- I've been meaning to write about that for a while now -- sigh...)

But by this point I was all gung-ho on my plan. I'd made a decision and I wasn't going to be derailed by details.

I made the smoothie, laced up my running shoes and headed out into the sultry late Southeast Texas spring. I decided to walk at a brisk pace to a running/walking track about a mile or so from my house, run around that, maybe twice, then run home.

On the way there, I could already tell that my body was not really up for a run. For one thing, I'd strained my back a bit hauling around bags of mulch for my garden and shoveling the same.
So as I was passing the nearly empty parking garage at St. E, I had a brilliant idea: I'd walk up the levels -- it would be nearly as strenuous as running, but without the impact.

So I did that. Just to up the ante, I even walked up the stairs a time or two. Then I continued on to the walking track, breaking into a low jog once or twice, then backing down when my lower back throbbed in protest. All through this, my head still hurt.

I got home and it still hurt.

Paid some bills, sorted through some papers -- still hurts.

Well, I tried.

I think the exercise cure works best for tension headaches -- though I was really hoping a good endorphin release might do the trick. Maybe I didn't go long enough or hard enough, but it was getting rather hot and exhausting myself in the heat might backfire and just make it worse.

So now I'm back to square one. Take the Relpax? Or risk it?

And on the 26th day...

2009-05-23T14:43:00.000-07:00

A headache.
I'm inclined to be a little superstitious. Surely I brought it on crowing about not having one for nearly a month.
But it's really not that uncommon for me to have a headache around "that time of the month." And I don't think I helped matters by getting up before 7 this morning to go pick up another load of mulch for my garden (which I now don't feel up to working in, alas).
I took a nap hoping for the best, but woke up with that nagging pain just starting up.
I waited perhaps too long to take Relpax and now I'm wondering if it's going to kick in at all. I should have taken it before I ate, because food seems to slow its absorption, but I hoped that eating would help.
Feel nauseated, the pain ramping up.
Really not too much to say about it. I'm grateful -- I really am -- that I had 25 days blissfully headache-free. But the truth is, I'd rather never have one at all...
I promised a friend I'd go to his play tonight and I stood him up for lunch yesterday, so I'm hoping the Relpax will do its trick.

25 days (and counting)

2009-05-22T06:03:00.000-07:00

Don't really have time for a proper post -- tons to do at work today so I mustn't dawdle (is it just me or am I sounding oddly British all of a sudden?) but I just wanted to say: 25 days all but headache free! (I might have had one or two rather mild pains in that time -- but nothing worth mentioning)
Don't know why -- I'm just grateful.

Woe ballet

2009-04-27T17:53:00.000-07:00

Gosh, it's been a while, hasn't it?
My reading public must be sooooo disappointed.
That's a joke, btw.
Anyway.
I've been doing pretty well the past couple of months.
A regimen of wild yam extract, multivitamins and Zicam allergy spray has been keeping things on an even keel.
For now.
The past few days have been a little rocky, but I attribute that to my impending cycle and overdoing it a bit.
Seems like I can't push myself the way I once did without some kind of backlash.
I took Relpax today. I was trying hard not to.
My head started to hurt yesterday while I was on the plane. By the time I was driving home (after a brief, yet possibly overlong stop at the Galleria) it had gotten fairly unpleasant -- though nothing compared to the one I had that day driving back from NOLA. It remained at the same unpleasant level until bedtime, and resumed when I got up this morning.
It might have stayed that way for the rest of the day. Or it could have escalated to a full blown migraine or maybe it just would have faded away.
I still mourn the days when I could pretty much count on a night's sleep to drive away any headache, no matter how bad.
Anyway, I sat on my bed for a long moment with the Relpax blister pack in my hand making up my mind to take it. I felt my only choices were to take it or call in sick, because I could not face going to work with that shrill migrainous shriek in my head.
So I took it. It worked about as well as it usually does. I was a little tired, slightly spacey, but nothing I couldn't deal with.
I'd been dreading going back to work after 10 days off, but it wasn't so bad.
But where am I going with this?
I had about three headaches last week, which is really kind of a lot when you think about it.
I decided I should make an appearance here, for some reason.
I wish I had some startling insight or other to disseminate here to make it worth someone's while to stop by. But perhaps it hardly matters. Doesn't seem like anyone's reading anyway.
I know, poor me.
Such a sad tale of woe.
Woe ballet, as Emily used to say.
But I don't feel too bad now.
My head does not hurt for the moment and it's a rather pretty evening outside -- the wind is blowing and splashes of distant lightning spice things up a bit.
Mango is sitting in the open window, and despite my sadness at leaving California, it's peaceful and even rather pleasant to be in my apartment. Whatever else about my life is dissatisfying, I do like my little place.

Reading Jane Austen and writhing in pain

2009-02-25T19:11:00.000-08:00

Well, perhaps not ever having anyone read this is not such a terrible thing. Makes it more like my own private diary that way.
But with just a little more accountability.
After all, someone MIGHT stumble upon this someday.
Anyway.
I'm having a moment of hopelessness again.
I had a bad headache today.
And I had one Monday.
On Monday, I was at work when it started and in the middle of something so I quickly took my Relpax. It made me feel like shit, but the headache eventually faded away.
Yesterday I felt twinges, but nothing developed.
Today started out okay. I went to work, felt a little sinus-y, but had misplaced my sinus meds. When I left for lunch, my head was starting to hurt, but it still didn't seem definite that I was headed down the migraine highway.
I went home, had lunch, did a few little household tasks and finally manged to dig up the sinus stuff, which I took. It was time for me to get back to work, but my head was really starting up. I thought I'd lay down for just a minute and let the meds kick in, and I fell asleep. When I woke, it was past two, and my head was pounding.
I was still in denial about it, though. I decided I should try a warm saline nasal wash -- which helped one other time when it was a sinus type thing.
I really felt this headache was related to a low pressure system, so somehow I thought that meant it would be more easily curable or something.
Anyway.
I did the nasal wash and lay back down.
By this time it was getting on in the afternoon and I still hadn't gotten back to work.
I didn't have anything due today, so possibly Dan didn't even notice I wasn't there, but it was worrisome. I just felt too embarrassed to call after all that time. I hate telling them I have a headache anyway. Always feel like they don't believe me.
I felt like I shouldn't take the Relpax again so soon, but when it really started to kick in, I just couldn't face the pain. So I took it.
Nothing happened. I thought I waited too long. I was reading, which I can actually do in all but the very worst episodes. It isn't actually pleasant, but it passes the time.
And I try not to go to sleep late in the afternoon, because I tend to be a bit insomniac, and late napping is usually not a good idea.
But I began to feel very sleepy, and the pain was very unpleasant, so I let myself fall asleep. I don't know what time it was, but I woke up after 7 p.m. -- and the pain was mostly gone.
THANK GOD.
But as always, when I have headaches close together like that, it makes me start to worry that they're going to become a daily event and then what will I do?
I worry about not being able to do my job, taking too much time off, getting fired -- that kind of thing.
Then what will I do?
I'm so grateful when I don't have a headache, when I feel well and can do the things I need to do. Sometimes all this just seems like a nightmare to me.
Did I already mention that I feel this is my punishment for having lived too long? In another time, I might have died in childbirth.
Or maybe I could just be some recluse in a back room, high on laudanum most of the time. I guess I still have that option -- I could go to my mothers house, get addicted to narcotic prescription pain killers, etc.
It scares me.
All this because of a stupid headache.

Maybe if I ignore it, it will go away

2009-01-29T19:29:00.000-08:00

I embarked on this little project in a moment of desperate groping for some way to feel in control of something, and now I'm having second thoughts.
It's this feeling of dwelling on the negative. Focusing on the problem instead of the solution. Something like that, anyway.
It seemed like a good idea at the time, but was it really?

Or am I saying this because I've had a pretty good week and my head is behaving?

I don't know.

Anyway, I started using progesterone cream and between that and saline nasal washes, it seems to be keeping things at a manageable level.

I don't really want to think about what's going to happen when pollen season starts.

But why worry about that now?

Anxiety

2009-01-20T13:24:00.000-08:00

I just left work without finishing the story I was working on for tomorrow.
It was -- well it just wasn't my day.
I wasn't sure what I was going to do on the inauguraton, but when I joked to my editor that I didn't think Obama would share with me the note Bush left for him, as per presidential tradition, Dan's ears perked up.
He wanted me to write about the tradition, suggested I call the LBJ library, etc.
Well, it turned out the tradition only goes back to Reagan, but in looking for more information on it, I came across a bunch of other inagural traditions started by various presidents, so I thought I could put together a nifty little story on that.
I even thought I could bring "real people" (which is what journalists call people who aren't elected officials, bureaucrats or other expert types) into it by asking random people if they had any inaugural traditions of their own (getting trashed, eating seafood, whatever...).
But from the start, it went nowhere. I looked up the names of a bunch of presidential historians, and tried to call and/or email them.
I called our local university, was referred to a particular professor who was not available. So I left a message.
In the meantime, as I said in my last post, an off-key big brass band started playing in my head.
I did everything I could think of to get my story together before everything went south, but I couldn't seem to get any sources.
I guess I could have tried to do it all off the Internet and see if it would fly, but they seem to frown on that sort of thing.
In any case, my ablity to make progress deteriorated as the pain advanced.
I knew I really just needed to go home, but I hated to go to Dan and beg off my story.
HATE IT.
HATE IT.
HATE IT.
I always feel like people think I'm making it up anyway, when I say I have a headache.
I decided to keep trying though, and I finally managed to get a Washington D.C. presidential historian on the phone live and in person.
He immediately cut me off. He was tired and chilled to the bone, he'd been up since before dawn blah blah blah.
I couldn't even bring myself to beg.
I hung up and went to Dan and told him I'd tried, and my head was killing me and I didn't have any more try left in me.
He was pretty nice about it. But he made some comment about seeing a doctor.
Well, I just saw a doctor, who gave me Seasonique, which, after I read about it on the Internet, I was too scared to try.
After giving it some more thought, I decided to give it a try next month after my period.
Of course, I didn't tell Dan all this. I just said I'd been to doctors, and all they ever do is throw drugs at it, and there are all sorts of other issues with drugs, like rebound headaches, which I'd already done and it wasn't pleasant, but then again, nothing was really pleasant anymore, so I'd have to come up with something, then I burst into tears and rushed away.
It's been ages since I cried, and I didn't want to today, because since crying has always been something that's given me a headache, I figured if I already had one, it would make it worse.
I cried half the way home (and thank God didn't get in an accident).
I'm just afraid. I'm afraid the headaches will get worse and I won't be able to work, then I guess I'd have to move in with my mom.
I love my mom, but living with her is another thing entirely.
I feel so stupid.
I'm just in this very unpleasant spot -- not really sick enough to be considered disabled, but not really well enough to function adequately.
I didn't really want to admit it's getting worse, but I think it is.
And I don't know what to do about it.

Fuck this

2009-01-20T10:43:00.000-08:00

I'm angry.

I know it's useless to scream and yell and wave my arms, but it feels so unfair.

I eat right; exercise; go to bed early; I don't smoke or drink, and my caffiene intake is limited to a couple of cups of green tea per day -- and if I'm getting really crazy, a cup of black tea. I've cut my chocolate consumption down to almost nothing and I avoid all artificial flavor and colorings in my diet.

I've tried so many things over the past four years.

But I still have these miserable, wretched headaches.

I feel like I drew the short straw when they were handing out heads.

I feel like I'm being punished for surviving past child bearing age. If I'd lived in another era, maybe I'd have died in childbirth long before I got to this point.

I'm trying hard not to whine and wallow in self pity, but these headaches are getting me down. They affect my job, my social life, my sense of well-being.
"This too shall pass," I mutter through gritted teeth.

But even after it passes, I worry about when the next one will hit.

Well, life is unfair. I knew that.

I'm just not coping with it very well today.

I took Relpax yesterday for a headache -- it worked, but it makes me so tired and spacy and kind of achy, as well.

This morning, before I even got out of bed I felt an ominous twinge.

By the time Obama had begun his inaugural speech, I was sitting with my head in my hands, pressing into the hollows above my eyes. So much for stirring historic moments.

I'm not sure I'm going to be able to complete my work without taking Relpax, but I'm afraid I'm just setting off a chain reaction of rebound headaches by taking it two days in a row.

I just don't think I should take it today.

Monday

2009-01-19T14:36:00.000-08:00

Monday morning started off well.
I woke without a trace of the sinus pain that bothered me all day yesterday.
I did my usual sinus wash with which I begin each day.
This morning, my assignment was to cover a Neches River tour that a group of volunteers here to help with Hurricane Ike recovery was taking.
I went out to the boat launch and was dismayed when I drove up and the boat was nowhere in sight. I thought I was late and they'd left without me.
But it turned out the boat trip had been cancelled because the boat was stranded by a low tide and wind.
So instead, we went for a walk. It was a bright clear breezy morning.
So when I got back to my car and my head was starting to hurt, I thought perhaps it was from pollen and other stuff blowing around.
I needed to go back by my house to change from boating clothes to office clothes, so when I was there, I did another nasal wash. The warm salt water felt good and it seemed to do the trick. I was pleased.
But later, in the office, the pain started up again.
I sort of knew it was no longer sinus, but hoping it was (because that seems more easily cured) I took a sinus pill.
No effect.
As I felt the searing fingers of migraine wrap around my brain and start to squeeze, I realized to my dismay that I did not have my Relpax with me.
I'd taken it out of my purse and put it in my backpack yesterday when I went for my bike ride and neglected to return it.
Shit.
I thought about driving home to pick it up, but I had two things to write up, and I figured I'd just try to get my work done really fast and rush home early.
That worked okay.
I'm home now. Took the stuff about half an hour ago. So far not feeling the familiar woozy feeling when the stuff starts to work.
It's a little worrisome, because as anyone with migraines knows, if you wait too long, meds don't help. Not really sure why that is.
So now I'm just waiting.
I probably should go lie down. I don't think I'm doing myself any favors by sitting here staring into a computer screen. Usually at the end of the day there's nothing I want more than to lie down on my bed, pet my cat and read a book.
Oddly, right now, I don't really feel like it.

Sunday night

2009-01-18T17:45:00.000-08:00

I went for the bike ride. Rode only about 10 miles, but since I haven't been riding much and half of it was riding into the wind, I think it was a decent workout.
My head feels pretty much the way it did before I left, but hey, at least it's not worse! So, you know, thanks for small blessings.
Anyway, I'm glad I got off my ass and did something.
Now if I could just get started on my novel...

Sunday

2009-01-18T11:50:00.000-08:00

It's Sunday and as usual I have a long to-do list, a lot of distractions -- and pain behind my eyes.
It isn't bad. Just bad enough to keep me at home, frittering away my day with not-too-demanding tasks like laundry and paying my bills, between rest breaks mostly spent laying on my bed reading one thing or another.
Is the pain going to get worse? Or will it go away?
I don't know.
I think maybe exercising would help, but I feel just crappy enough that the effort to get dressed and get out on my bicycle is uninviting. Because of course, if it doesn't help, the exertion will be unpleasant to my achy-breaky head. It's also a very bright, slightly breezy day. A pretty day really, but one that seems a little abrasive, someone.
So I'm in limbo. Can't decide what to do.
I've spent too many weekends like this and it depresses me. That doesn't help anything. Being depressed only makes it harder to make an effort.
I know.
Poor me.
I have a load of wash in the drier, just about done and a couple of bills that need to be paid, then I will get dressed and get on my bike and go for a ride.
If it doesn't help -- at least I tried. And it's not a bad thing to get a little exercise, after all.

Managing

2009-01-14T08:49:00.000-08:00

So far this week, my head has been manageable.
On Monday I had some pain and took some sinus stuff.
After work, I was sitting on the couch reading and my head was hurting and I felt a little nauseated. I was thinking exercising would probably help, but it was too dark to walk or bike and I don't have a gym membership.
I keep thinking I should get one, but I already feel swamped with bills. It's hard to add another one. And in a couple months it will be light after work so I'll be able to get the kind of exercise I like best anyway -- outdoor.
Anyway, my instinct to go outside appeared to have been spot on. Before I went to bed that night, I stepped outside to take out the trash and the cold night air cleared my head instantly.
It's always so mysterious to me how sometimes the simplest little thing can cure a headache -- other times, it doesn't seem to matter what I do.
Yesterday I had a slight pain in my head that didn't get worse but didn't go away either.
I had a social obligation last night that I went to and was able to fulfill my responsibilities cheerfully. That helps.
This morning I got up and was still feeling some pain. I took sinus meds and that appears to have helped.
I really try to keep the medication at a minimum. For one thing, I worry about rebound headaches -- for another, my experience has been that medications seem to lose their effectiveness over time, so I try to use them sparingly.
One thing that really bothers me is that I've gotten to the point where I'm pretty happy if the pain is mild enough to work or do household chores or socialize -- even if I don't enjoy those things much because of the pain.
Another thing I don't like is that it's always there in the back of my mind -- the worry that I'll have a bad headache on a day I have something special planned or an important assignment at work. I've had weekends that I've spent languishing around the house, not because of a severe headache or migraine, but because of mild pain and malaise that I feared would flare up into something worse if I try to do anything.
Maybe that's the wrong response. Maybe I should make more of an effort to get out when I'm feeling poopy.

Hormones or sinuses?

2009-01-11T15:43:00.000-08:00

Well, it's both.
I think.
Five years ago when all this really started becoming a problem, I remember a female friend about my age (41 then) saying something about declining hormone levels.
I didn't want to hear that.
I'm not ready to think about menopause.
But over the years, it's been there in the back of my mind, lurking.
So in December, when the pain was starting to interfere with my job and my life, I decided to go see my gynecologist.
We talked and she suggested I try birth control pills to help even out my hormones.
I left with a six month supply of Seasonale.
But then I started thinking about some of the questions she had asked me.
I'd been making all these assumptions about hormones, but when I considered the pattern of my headaches, it didn't make complete sense.
Sure, I usually got a headache or two or three around my period, but I also did the week after that and the week after that.
Was I overlooking the sinus aspect of it?
I had been taking Tylenol sinus medicine when I thought it might be sinus pain (sometime a tricky call) but it hadn't been working lately.
Maybe I needed to try something different.
So I went to the drugstore and looked around. I got some nasal spray for sinus pressure.
The next day (Dec. 31) when my head started to hurt right on schedule, I hit it with that.
The pain stopped, and I didn't have another headache for several days.
I noticed that the stuff said not to use it more than three days in a row (or something like that) so I picked up some pills for sinus pressure relief.
Those got me through last week with minimal amounts of pain.
So, the moral of the story is, don't let your fears blind you to your options.
But -- the hormones are still a factor.
My period started yesterday and with it came a nasty headache.
It started in slow, and I took a sinus pill even though I could tell right away it wasn't a sinus headache -- just wishful thinking, something I'm all too prone to fall into.
I took a nap, hoping I could head it off by relaxing.
There was no stopping it.
By nightfall, there it was.
Not the worst migraine, just bad enough to keep me in the house in my robe all day -- in bed most of the day.
I try to avoid taking the Relpax I've been prescribed because I know from past experience taking it too much leads to rebound headaches -- also, sometimes the Relpax makes me so tired and spaced out I end up just laying around in bed all day anyway.
When I was younger I never had a headache that lasted longer than a day, but in recent years that's changed.
So when I awoke at 5 a.m. and my head was still pounding, hoping to have a slightly more productive day Sunday than I did Saturday, I popped a Relpax.
I suppose it helped.
The pain dulled to a low-grade ache.
Anyway, I didn't mean to drone on this way. My point is, now I'm thinking about the hormonal aspect of it again.
But I'm leery of the Seasonale. So I got online and started doing some research. I promptly found a Web site with literally hundreds of posts from women on problems associated with Seasonale: excessive bleeding; severe cramps; weight gain; nausea; hair loss; sexual side effects; depression -- and migraine headaches!
Today would be the day I'm supposed to start the stuff if I'm going to, but now I'm scared.
I think I'm just going to have to wait another month and see how it goes.

What they are like

2009-01-11T14:55:00.000-08:00

In the beginning...
I don't really know what an "aura" is, in the migrainous sense, so I'm pretty sure I don't have it.
I don't find myself particularly light sensitive, but at time I know a migraine is in the offering because I become painfully sensitive to noise and odors.
One time, riding in a male friend's car, his personal odor became so overwhelming I could hardly stand it. I had to breath through my mouth to keep from gagging (this was a very fastidious and clean person, who normally did not smell bad to me).
I also notice that a lot of colors and things moving around cause distress -- during the opening sequence of the movie "Twilight" there's some kind of chase sequence I actually had to close my eyes during because it made my head hurt.
The Pain:
I get very frustrated when doctors ask questions about the pain: where is it? what does it feel like? Does it throb? Pulsate? Is it sharp? Dull?
I don't know! It hurts, okay!!
However, after going through this a few times, I've tried to pay more attention to the specific qualities of the pain, when I'm laying there hoping for a merciful death.
So... normally, I feel the pain behind my eyes. In fact, when it's coming on I can often be seen pressing my fingers into the hollows on either side of the bridge of my nose (sometimes I pull my hair too -- it doesn't make the pain stop, but for a moment it distracts me from it)
If the headache advances, I often notice a sort of center to the pain on one side, just behind my eye -- normally the right side, if I remember correctly. One part of the trouble is that pain can be disorienting and I have trouble remembering things about it.
Yes, it does throb. If that's different than pulsating, I'm at a loss.
Quite a lot of the time it's a dull pain, but dull kind of like a mallet as opposed to a knife or needle.
I can work through a certain amount of pain, but there comes a point at which it is literally impossible to continue to function. And I know that the more I push it, the worse it will be later.
I feel like people might think my headache really isn't that bad because I can continue to talk and even joke when I have one, but it's really just that I'm used to it.
The icky part
I normally get nauseated, but I don't usually vomit unless I try to keep working or driving or doing an activity. Of the handful of times I've vomited (from a migraine), twice I was at work and should have gone home; once I was on a 250 mile drive and really should have stopped and checked into a motel; once I was on a day trip to Houston with a friend and didn't want to disappoint her.

A little background

2009-01-11T11:05:00.001-08:00

I've been prone to headaches all my life, but up till the spring of 2004, things were fairly manageable.
In past years, while I had headaches two or three times a month, mostly they were easily managed with ibuprofen.
I learned that regular exercise, riding my bike, yoga, things like that, helped a great deal to keep things under control.
I had what I would have termed a knock-down, drag-out migraine only once every two or three years.
And even those -- they never lasted longer than a day, I could usually sleep through the worst of them, and when I woke up they were gone.
Then, early in 2004, things started to change.
I began having headaches that ibuprofen wouldn't cure, and they started progressing with greater frequency into intense migraines.
I got my first prescription for a migraine medication -- Relpax -- that spring.
I only took it once that spring -- I was at work and it made me feel very strange. Kind of fatigued and spacey. It noticeably affected my ability to do my job.
Things settled down in the summer. I didn't feel the need to take Relpax again until perhaps late August or early September.
It wasn't uncommon for me to have a headache or two while I was on my period, but I started having more and more of them.
One month I would have them three or four days in a row.
The next month it would be six or seven.
Then, by November, I was having them every day.
Maybe I should mention here that when they first started, I tended to think the headaches were stress related. I did -- and do -- have a stressful job.
In the past, I'd found exercise was a good prevention and cure for tension headaches, so I began getting up an hour earlier than normal each day and going for a bike ride. Now, I love riding my bike, but even more than that, I love sleep. I hate getting up early, so I want you to appreciate what a sacrifice I was making.
But it didn't work.
Usually by late morning the headache was starting its faint, annoying buzz, which by afternoon reached a crescendo.
I treated the headaches with Relpax -- the only thing I'd found that worked.
I knew it wasn't right for me to be taking the stuff every day, so I trotted on back to the doctor. She put me on another prescription drug, Topamax. It's a seizure medication that is also used as a prophylactic for migraine.
I started out at the minimum dosage, and it worked pretty well at that level for a while. After a couple of months, it stopped working, so the doctor increased the dosage, and it went along that way for a while until about eight months later I was at the maximum dosage, which made me feel kind of sick all the time and eventually stopped working and I was taking it and Relpax every day and honestly, between all the side effects of both of them I don't know how I functioned.
So back I went to the doctor, who prescribed an antidepressant, tofranil.
So I tapered off the Topamax and onto the tofranil which worked, again, for about eight months, then gradually stopped being very effective and I was back to treating the headaches with Relpax every day.
I had this gut feeling that taking the Relpax was part of the problem, but I think I was too scared to put it to the test.
Let me just insert here that I had also been to a neurologist, had an MRI and ruled out brain tumors as a cause.
Also somewhere in there, I'd gone to an allergy doctor, who tested me for allergies. I tested positive for dust mites, some tree and weed pollens. He gave me samples of various allergy drugs that didn't seem to do a damn thing for my headaches.
He wanted me to get allergy shots, but wouldn't let me do the shots on my own, wanted me to pay him $20 a pop to administer the shot. I balked, both at the cost and, well, I was afraid the shots would only make the situation worse... maybe that's wrong.
Anyway.
When the tofranil stopped working, the neurologist (whom I didn't much like) prescribed a blood pressure medication, which promptly made me so sick I couldn't take it at all. She was out of town that week, so I went to my regular doctor, who said a newer, time released version of the drug would solve the problem, but it didn't.
I understand all about adjusting to medicines -- but I knew that something that made me this sick was all wrong for me.
Then a friend emailed me a link to an NPR story about a doctor who had written a book about migraines.
He had compiled a list of all the foods that could trigger migraine, and it was way beyond the usual red wine, chocolate, MSG, etc. migraine sufferers are told to avoid.
He also explained about rebound headaches -- which taking Relpax too often could cause.
So at this point, I realized my gut feeling had probably been right all along.

But instead of just stopping cold turkey, I decided to go to another doctor in search of a cure.
He told me there was no cure for headaches and I left his office with two new prescriptions -- one of them another anti-depressant.
Maybe I needed it, 'cause I drove home totally depressed.
After giving it some serious thought, I decided to get off prescriptions meds.
I did not do it in a smart way.
I stopped taking the tofranil, and after a few days when this didn't seem to be too rough, I thought I'd stop the Relpax.
Well. The reason stopping the tofranil didn't seem too rough at first was possilby because my body didn't realize I'd stopped right away or something.
But about the same day I decided to stop the Relpax, everything hit at once.
I had possibly the worst migraine of my entire life.
I was up half the night and vomited three times.
I lay on the cool tiles of my bathroom floor most of the night moaning, feeling like someone had hit me in the head with an axe.
I wished someone would hit me in the head with an axe.
There's a line from a Joan Didion essay on migraines that comes to mind at moments like these: “That no one dies of migraine seems, to someone deep into an attack, an ambiguous blessing.”
Well. I lived through that night.
And I somehow got through most of the next year free of prescription meds (though not free of headaches, unfortunately)
I tried the NPR doctor's diet, cutting out quite ordinary foods like cheese, nuts, onions and bananas, among other things.
I tried this for about three months, I think.
As far as I can tell, my triggers aren't food-related (however, the one thing I remain skittish about, avoiding like the plague, is MSG -- I always ask if they use it at restaurants)
I've explored many possible explanations for my headaches: allergies, hormones, sinusitis. I've traveled down many a treatment avenue: acupuncture, chiropractors, herbs, progesterone creams, nasal washes, reiki.
There are still others I haven't tried: biofeedback, massage, botox (don't laugh -- I've heard it helps some sufferers).
Sometimes it seemed like something was working for a month or two, but then they would get bad again -- so I never really know if something works or if the headaches just naturally ebb and flow.
This past year, I returned to occasionally using Relpax, keeping it down to two or three times per month, to avoid rebounds.
I had first thought about doing this blog a couple years ago -- just after I quit prescription meds. I thought perhaps it could help me and other sufferers find ways to cope with the misery of chronic headaches.
I never got around to it till now. Maybe because I had a pretty bad December. Eight headaches, five of them that pretty much put me out of commission for the better part of a day, another that likely would have, except I took Relpax.
And I had one yesterday. Not unexpected, as it was the first day of my period.
It wasn't even close to the worse one I'd ever had, so I tried to just tough it out. But when I woke at 5 a.m. and it was still hanging around, I caved in and took the drug.
As I'm writing this, I still have a nagging pain behind my eyes.
Perhaps the worst effect of my headaches is the self-pity, the way they make me hate my life sometimes, the fear that they will get even worse and more frequent...
I'm not the most cheerful person you'll ever meet, and headaches don't help much with that.
I'm sorry this was such a long entry. I don't know that it's of any earthly use to anyone, but I felt I needed to show the road I'd been down, some of the things I've tried.

Welcome to my head...

2009-01-11T10:47:00.000-08:00

And a frightening place it can be at time. Mind you, I'm not claiming that the bats in my belfry are anything more than run of the mill bats -- my metaphoric demons are nothing more than your fairly ordinary, garden variety spleen-devouring imps o' Satan.

No.

What I'm talking about here is the chemistry of the place. Of which I really have only a rudimentary understand -- although I can describe the effects in all their glorious technicolor gore. And likely will, at length, if this goes as I plan it to.

But I don't just want it only to be me whining about the pain.

What I want is to proceed in a methodical direction toward answers, solutions, even a cure, tho doctors tell me there isn't one.

The demon I'm here to exorcise is called Migraine, and as anyone who's tangled with her knows, she's one mean, scary bitch.