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The headache that never went away: Part 4 - Watching my life unravel and knitting it back together

Posted Jun 12 2008 7:04pm 2 Comments

It's odd to be sitting in bed writing an entry about how my chronic headache started destroying my life because right now I feel fairly fine. I've felt fairly fine for two weeks. I'm still working on the world's record for longest headache, but it's dialed down to a level 2 or 3 instead of a 5 or 6. I'm able to go about my life without thinking about my pain ever 5 minutes. When the headache is bad, all the normal thoughts I have during the day get pushed out, like flood waters washing possessions out of my house. The only thing that exists is the pain. It's nice to have my brain back, at least for now.

However, there have been times in the past couple months when I've not been grateful to be in possession of my brain considering how badly it has been hurting. It's made my life suck. Oh, let me count the ways.

The emotional toll
When I started crying alone in the parking lot of the doctor's office in the rain last April, I knew I was starting to lose it. There was so much snot running down my face that I had to reach into the back seat and grab a white t-shirt to wipe my nose on that I'd been planning to give to Goodwill. Later I cried on the phone to my mom who felt bad that she couldn't kiss the receiver to make the pain go away. I've laid in bed wondering if I'd have a stroke in the middle of the night and die, which would suck, but at least would stop my suffering.

Several people have told me they admire my level-headed, sensible approach to weight-loss. So, the fact that I've been blowing snot on t-shirts for the poor should give you a sense of how far gone I've been in my worst moments. One day I was so befuzzled after two hours and three different attempts at finding an open lab to do my blood work, that I turned the wrong way down a one way street.

The eating
My headache is like being locked in a room with a TV that is endlessly looping a movie starring Tom Green or Adam Carrola. It's absolutely awful and I can't turn off the TV, but I can sometimes tune it out. In the same way, my headache always hurts, but I can sometimes ignore it. I've found that the best ways to distract myself are to 1) keep psychotically busy or 2) eat pleasurable things. (Hence, the weight gain in my sidebar this month. That's seven pounds of pain, baby.)

The intravenous drugs haven't done shit, but the cookies n' cream milkshake from Steak N' Shake sure did make me feel better. I mean that in all seriousness. After I've been in pain all day, if I eat a bowl of ice cream or a chocolate bar, I genuinely feel better for those few moments. The agony is drowned out by the other sensations, like turning up the radio to drown out the sound of your neighbors having sex. Last month I was chomping on some chocolate chips, knowing I should stop, but also knowing that as soon as I did the pain would come back. Chronic pain or extra calories? Headache or huge jeans? I really don't know which is worse.

I started half-seriously thinking about starting a drinking habit instead of binge eating, but I didn't know how alcohol would react with some of my headache medications, whereas blueberry bagels don't seem to cause fatal drug interactions.

The laziness
It's hard enough to get myself to exercise when I'm feeling fine, but when my head feels like it's imploding, good luck getting me to pull out my weight bench. I record all my exercise on a wall calendar. Flipping back, I can see that my Pilates and weights sessions started to drop off in frequency a week or two after my headache started. After a month, they disappeared completely and I was focused only on completing my training runs for my half-marathon. After I finally ran the race, I barely exercised for three weeks.

Thankfully, I have exercised regularly for the past two weeks. It's felt really good, getting back into the familiar routine, almost like I have my life back. I believe the exercise makes me feel better too (even though running two miles is never un-painful). Activity is good for the body and lying around wasn't helping make the pain go away anyway.

Missing out on fun
A couple weeks ago, I could have seen a sneak preview of the Indiana Jones movie for free, but I had to come home to do a drug treatment. Last month the band Stars was in town and I wanted to go see them, but I felt tired from suffering all day and I didn't want to be stuck in a smoky room that could inflame my headache. Several times I have been out with friends or coworkers and I can't help thinking, "This would be a lot more fun if my head didn't hurt."

The hopelessness
I used to wake up and feel happy driving around town or running errands, but at my worst I was just trudging through as best I could and trying not to go more than two weeks without doing the dishes. I wanted to stay in bed all day or curl up watching TV on the couch. I watched the TV show House and I started cheering on his Vicodin addiction. (I fully support your narcotics habit, you crabby doctor, you!) My attitude to live life to its fullest became Operation: Just Getting By. It was shocking how quickly my life completely unraveled. It sucked the happy right out of life.

While I try to keep a positive attitude, living in constant pain beat me down over time. Some days I felt like fighting and other days I felt like lying belly up on the floor playing dead. I think of Jack Baur from the TV show 24 when he's been tortured by the Chinese for years. Jack didn't break, because he's Jack Baur, damn it! But I was ready to tell the Chinese all our nuclear secrets if they would give me acupuncture.

On the bright side, I feel like I can now empathize with people who suffer from chronic pain and depression better than I ever would have been before. You really don't know what it's like until it happens to you.

The money
MRI's aren't cheap. When I was watching those episodes of House, he started ordering MRI's and CT scans and I literally yelled at my TV, "OH MY GOD! Do you know how much that's going to cost?!?!"

The medical system
Oh, yeah, this has been fun. Filling out lots of form, getting lost in medical facilities, trying to figure out who to see and what type of doctor could help me, hoping this would be the magic test that would diagnose my problem, the long delays between prescribing a test and getting in the schedule to take the test.

Retelling my medical history to several different doctors has been like playing that alphabet car game. You know, the one where the first person says, "I'm going on a trip and I'm bringing an apple." And the next person brings something with the next alphabet letter like, "I'm going on a trip and I'm bringing an apple and bagels." Then the next person says, "I'm going on a trip and I'm bringing an apple and bagels and cream cheese." Except in the medical system it goes, "I have a headache and I tried antibiotics" and then you tell the next doctor, "I have a headache and I tried antibiotics and beta blockers," and then you tell the next doctor, "I have a headache and I tried antibiotics, beta blockers and I'm willing to try crack cocaine if it will help." It's gotten to a point where I don't know who I've told what or if I left out a part of the story because unfortunately I did not try things in alphabetical order.

But now I'm feeling better, if not fantastic
So, that's what was going on behind the blog for the past few months. During April I kept thinking, "Dear God, how am I ever going to get through May?" But as I discovered, being incredibly busy helped because it didn't leave me time to think about my headache. At the end of May, things started to slow back down to a reasonable pace, which left me plenty of time to think about how I'd gladly bash my head against a wall a couple times if I thought it'd stop the God damn pain. 2007 was a really great year and every day I drove home from work happy and excited, but I'd also think, "You'd better enjoy this feeling because something shitty is bound to happen to you eventually." And it did.

But, the last two weeks have been okay, partly because the pain has lessened and partly because I've stopping hoping that it will go away anytime soon. It's me and my headache for who knows how long - maybe for the rest of my life. In my research I discovered there are people who've had headaches for decades. I might one day be one of them. I will still keep looking into fixing my headache, but I'm sort of tired of dealing with the search for the cure right now. I'm taking a break.

Chilling out the past couple weeks has helped. I didn't think I was that stressed despite the fact that I was training for a half-marathon, promoting a book, working a full-time job and writing a blog, but looking back and comparing it to how I feel now I'm thinking, "Um, yeah, maybe I was a little bit stressed out." I was just so used to being stressed that I didn't realize how bad it was until it let up. Sort of like how now my headache probably isn't all that less painful than it used to be, I'm just so used to it that I don't think it is as bad as I did when I first got it. If it were to go away, I would probably be surprised to realize how crappy I feel, just like I was surprised by how much better I felt when I first started eating healthy and exercising.

One of the worse things about this experience has been the feeling that I had no control over my life. I was in pain, gaining weight, not exercising, and unable to work as hard on my promotions as I wanted to - and it wasn't my fault. I didn't do anything wrong. I was victimized by my central nervous system.

But I haven't eaten any milkshakes lately. And I've been hitting the trail. And I can lift almost as much weight during my strength training as I used to. Things started spinning down into a tailspin for awhile there, but I feel like I'm pulling up on the stick now. We'll be flying normal again soon, if with a bit of turbulence.

I hope the stewardess will serve painkillers.

Comments (2)
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I have a very good friend who has also had a constant headache, sometimes bearable sometimes excruciating, for more than a year. I personally have had headaches all my life. Some days merely irritating, some days please kill me migraines. Seven years ago Fibromyalgia was added - pain mostly in my neck, at the base of my skull at the spinal column, behind my ears/jaw/at skull line. Plus fatigue - bone weary, can't move fatigue. With increased migraines.

It's like you know my life... I have had a constant headache since Nov. 2nd, 2009 (it's now May 8th, 2011) and no one has been able to diagnose it adequately (aside from the pathetic "chronic migraine" diagnosis), or treat it in any way. Nothing works but every doctor/physician is CERTAIN they know what's causing it - that is, until you come back to them with no change in the condition! Then they say, "Oh it's still probably X,... but have you tried Y?"

 I also like your House reference... I do the same (i.e. shout at the TV regarding the cost of MRIs and CTs), but usually I just sit there wishing I had someone who could think outside the box and get results like House (although, without the wreckless endangerment of patients' lives)!

Thanks for the post, and stay strong!

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