Wednesday, May 03, 2006


For months now, my headaches have been consistent. I have an omnipresent, dull, sickening, droning pain in my head. This is often accompanied by a sensation of incredible pressure, like my brain is swollen and wants to burst the heck out.

Tonight, David and I were discussing trepanning (pronounced tree-panning), the medical procedure whereby a hole is drilled in the skull to relieve pressure in the brain. The procedure is still done for people with brain swelling from trauma, except they now remove a section of the cranium instead of drilling a hole. But in the old days, people suffering from head pain, likely unrelieved migraine, drilled their own holes, standing in front of a mirror with an ice pack and a bottle of whiskey, no doubt. I can't imagine being that desperate, but sometimes...sometimes I wish I had a heavy-duty drill.

Recently my headache cycle changed a tiny bit, just to torture me. The frequency and the intensity of pain were the same, but what changed was that on so-called "good" days (good hours in my case), I felt better. Healthy, fresh. I became optimistic that something was changing. I was healing! I actually had a few hours each day a week or so ago where I felt positively *fresh*, mentally clear...feelings I rarely experience. The way normal people feel. I felt a weight lifting from my body.

So I went for a massage last Thursday, and my therapist said my body felt great; my neck and back were relaxed, pliable. My shoulders and neck muscles, usually a seething cauldron of knots and tenderness, were calm and responsive. This seemed to fit with the mental clarity I'd felt briefly and intermittently throughout the week. I felt superb after the massage, came home and slept. Finally I was experiencing a change.

But that pleasant, hopeful state didn't last. On Friday, I was sore from the massage. This is typical: the following day, I usually feel like I've been beaten up. I was stiff and achey that morning, but the headache was mild, about a 2 or a 3. At noon, I went for Physio session #4. What a mistake! I had acupuncture in my neck and shoulders. Then she dry-needled me aggressively around the neck, shoulders, and low back. I haven't recovered since. That evening I was in misery, pure physical distress. Everything was seized, knotted, and sore. My headache returned with a vengeance.

On Saturday I don't know why, but I decided to go for a workout. Mistake #2. On a good day, my body is hyper-sensitive to weight training or cardio activities. It seems to think I'm hurting it, and responds by causing me immense muscle tension and head pain. I can have a great workout and a few hours later, I'm in physical hell, locked up with tension, barely able to move, tortured with pain. It seems to be saying, "you're killllllllling me." A brutal headache ensues.

What is this hyper-sensitivity phenomenon? It seems my muscles (and probably those of many headache people) are grossly over-sensitive to pain. They respond aggressively to very low levels of stimulus. My body overreacts to the slightest physical stimulus, going into this self-preservation mode. My pain circuitry runs on higher voltage than everyone else's. The least little thing, and my body reacts violently, muscles tensing, head aching like there's no tomorrow. My body seems to be saying "for God's sake, stop what you're doing to me!!" But the problem is...I haven't done anything. I haven't abused my body. I've treated it well and this is what I get in return?

It's distressing, to say the least, to have my body so over-reactive to the least stimulus. It's been almost a week and I haven't felt well since Friday morning. I'm sore all over, spent, exhausted, not sleeping well.

And I feel something I haven't felt in a long time...completely and totally pissed off.

I've grown sick of this body. Sick of its relentless complaints when I haven't done a darned thing to it. I'm not a complaining person, nor a hypochondriac, nor someone who wants an excuse not to live life.

What I am is a person who is sick and tired of my body's ridiculous, exaggerated over-reaction to every single little thing. My Headache Control Center is on overload before I even wake up. I can't control it. I have given up trying to figure out how. Imagine a world where getting out of bed is enough to send your body into a rage.

I hate excuses. I hate being a person who makes them. Who is forced to make them. I want my life back! I never wanted it gone. I never asked for some lame excuse to gripe and complain all the time. I don't want this and I hate every minute of it. Every single headaching minute of it. I want to be me again. I haven't been me in 9 years, and my absence is beginning to drive me slowly crazy. I feel like I'm living in some kind of weird undeserved hell. I was on this great course in life, a smart, capable woman, and now I'm reduced to a person who can't do anything without suffering, who has to diminish her life to quieten her headaches.

I'm sick of nursing myself, coddling my body, always "taking it easy", always having to Do The Right Thing every minute of the day. How do you have a normal, active life when you have to be hyper-vigilant every day that you don't walk too fast, sit in a bad chair, tilt your head the wrong way, forget to drink 500 glasses of water, have two thoughts at the same time, multi-task, or not get your bloody 8h of sleep?

My body responds negatively to everything: too little sleep (even 8h isn't enough), intellectual overstimulation, even the slightest physical exertion, not sitting perfectly straight, too much computer time, too much light in my office, noise, busy environments, air travel, walking down the street, getting out of bed. Everything seems to bother me, make me ache and hurt. I walk home from work and I'm practically paralyzed with head pain when I walk in my door. God forbid I have an efficient hour at the office! My brain suddenly decides it's being over-worked and transforms itself into a boiling cauldron of pain when all I did was glance through an article, write an email, and answer the damned phone within a 10-minute interval.

Everything needs to be slow, steady, deliberate. God forbid anything should be done fast. Not thinking. Not moving. If I walk home, I must do it slowly, saying calming mantras all the way, coaxing my body to relax. If I have two people come into my office at work, I must be sure to sit calmly and stay mentally relaxed and not engage too much, try not to talk to two people at once, listen to two people at once. It is hell trying to be an engineer in a technically demanding office while trying not to use my brain at more than 1 thought/minute.

My life has ground to a halt, and I'm pissed off today. I haven't blogged because I hate everything. Ok, I don't, but it feels like it. And anyway, I'm too tired at the end of the day. I look like crap 90% of the time. I feel like crap all the time. All I do is think about headaches, think about pacing, think about every little teeny tiny thing that might set me off. I try to ignore it, but it won't let me. How can you ignore a relentless protocal of do's and don'ts that all the headache books give you?

I'm sick of being hyper-vigilant, hyper-careful, hyper-cautious. I'm sick of living inside a body that clearly hates me. A body that over-reacts to everything. You can't live in a body like that. You can never make it happy, no matter how much you try.

And I'm even more sick of trying to be cheery and positive. I'm fed up with positive thoughts and all that horseshit. It doesn't help. Yoga, meditation, Buddhism, self-help, headache books, trigger-food elimination diets, exercise, rest, drugs, self-discovery, aphorisms, God, mantras, self-love, the Life Journey, enlightenment, relaxation, pacing, Oprah, sleeping, not sleeping, hydration, hatha yoga, raja yoga, healing circles, chocolate, love, no chocolate, massage, doctors, therapists, psychologists, rolfing, acupuncture, injections, silence retreats, books, chiropractic, vacations-by-the-sea, "new definitions of success", zen-anything, ancient healing stones, relaxation CD's, organic foods, ayurveda, Warrior weekends, naturopaths, magnesium, riboflavin, therabands, Chi balls, $100 cervical pillows, neck exercises, ergonomic furniture, positive self-talk, cranial-sacral, stretching, pilates, visceral massage, shiatsu, aromatherapy, hot baths, melatonin, happy cheery thoughts...none of it helps.

None of it helps. Because none of this is within your control. You have a disease that is eating you alive and you may as well stay up late and drink red wine all night. You can't feel any worse tomorrow.

And with headaches, they make it all your fault. You have this mile long list of things to do and try, and if you don't succeed you feel like a failure. It is a character flaw to have headaches, and all these lists do is make it your fault, make it something you really can control if only you try hard enough. If you are good enough, your head will stop killing you. Well, I am sick of taking the blame for my headaches. Oh maybe a little more sleep helps, or not eating certain foods, but the fact is, no change to your character or disposition or soul or posture is really going to help a clinical condition. No more than positive thinking will cure your cancer.

And what's worse is that I'm not some slob. I take great care of myself. As someone at my headache clinic said, we'ree probably the healthiest people on earth...headache sufferers. We stay hydrated, get good sleep, eat regularly, exercise, relax and rest a lot. Oh, and the other thing we do is live an absolute shit life.

I'm fed up. Fed up with my head aching. I can even deal with the pain. What I can't deal with is never feeling fresh, never feeling clear-headed. That's the real bitch of this...the dull ache that takes your life spirit, your mental clarity, your sanity. For anyone who doesn't know what I feel like...imagine staying awake for 72h straight after a 3 day drinking binge, and you will get what I feel like on a normal day. You feel like absolute shit every single minute of every single day. Imagine your worst night of sleep and how you felt the next day. Imagine your worst hangover and how you felt the next day. Imagine your worst flu headache. Imagine the most stressful day you've ever had and how brutal you felt. That is what I, and many others, wake up to every day...24/7/365. And with that fried brain, I need to go out into the world and function.

But it could be worse. And I feel better already because sometimes you need to cut through all the happy thinking and just tell it like it is. It sucks, and tomorrow will come, and you will get through it too.

Right now, my eyes are tired. The world is tired also.


  1. Terri, I'm so sorry, I know exactly how you feel. I've been luckey enough to have had a break for about a month now. I pray that you will get a well deserved break too!

    Isn't it funny how when you are in pain, you forget what it feels like to feel good, and when you feel good, you forget what it feels like to be in pain.

    Terri, don't you feel guilty for one minute for being pissy about this. Your absolutly right, this is not fair, and you do by no means deserve this.

    I don't want to be pesty, because I know you are anti-everything (lol) right now, but that, "All in My Head" book that I was telling you about, you really should read it, the first half especially, she expresses exactly what you are feeling right now.

    Best wishes!!

  2. Hi Terri

    I read this when you posted it, and I do understand how you feel--I really do, but I just haven't known what to say. I've been this angry before, and for a very long time too. But I'm just not angry any longer. I think I just got so tired of it--so tired of spending what little energy I did have on something that wasn't working for me any longer. I didn't really even consciously choose to change my 'focus' or anything-it just gradually happened I think.

    I think being angry helps for a while--it must be where you need to be right now, so don't feel bad about it. Don't push yourself to be anywhere else but where you are. We all "get it".

    ps--I think that yoga is goddamn irritating too ;)

  3. ((((((Giant, tender hugs))))) I SOOOO understand this vent. Heck, I've had this vent so many times myself, both with the headaches and my CFS/FMS.

    I wish we could hang out together, it helps when you know you're not alone in this.

    It is NOT your fault--my opinion on the treatment of headaches is that everyone has their theory of what causes them, and how to treat them. So not every treatment is going to work--but instead of them saying, "I don't know", they blame us.

    Hang in there dear. I hope better days are ahead for you!

  4. Oh and ditto to what Jackie said--"All in my head" is an AWESOME book, very validating.