Thursday, September 18, 2008

Descent

It is unpredictable and unavoidable when it comes.

Beginning at the base of my skull, it slowly builds, like the steam in a pressure cooker, only there is no little metal buoy bouncing about, releasing the steam. At first it is like any ache or pain. Maybe it will disappear. Maybe it will not. Doing all the same things -- stretching, applying heat, applying ice, resting -- sometimes doesn't do a damned thing.

My eyes begin to have trouble focusing on the screen during the conference. A cattle prod enters at the base of my skull and inches toward my right eye. My legs go wobbly. I know that if I try to stand, they will be weak. Someone asks me a question; "Could you please repeat that?" They shout and echo into the phone, though I know they are simply speaking to me. My eyes keep drifting to the clock on the lower right corner of my screen. When the conference is over, I know I will take a Fioricet and rest in a darkened room. It will be okay.

But it is not okay.

The pain spreads until the only relief is from sleep. I fall asleep in pain and wake up to the same pain. It is a night in which I will be unable to get up and see to my family. Grateful that I have no small children, I nevertheless feel sorry for my dogs, who desperately want their normal after-dinner walkies. Hubby is good; he picks up Chinese food and brings me a cold glass of soda in my dark bedroom. He tells me it's okay.

The pain sickens me but not to the point of being sick. These aren't typical migraines; they are hemiplegic or "complicated." They appear as and act like strokes. Only those of us versed in the strange chords of this waltz can tell the difference: my neurologists and me, my husband -- though even he worries that we might miss an important distinguishing characteristic someday. Those drugs that help my friends -- Zofran, Imitrex, and so on -- could actually produce a stroke in me. I'm left only with the Fioricet, sometimes other painkillers. Nothing really takes it away.

Now in the downhill slide toward what I hope will be a few peaceful days, because this one has been dancing around me for days, I'm achy, exhausted. I feel at a loss. None of these headaches ever hit me before the hours-long surgery to fuse C5/C6/C7 in my neck, leaving my head bent backwards at an unnatural angle for too long. We didn't know then that I had a Chiari malformation. We know now, but it's too late. What happened has already happened and I am left with the consequences and a long - very long - line of doctors who don't know how to help me and don't seem to care.

And my life slowly falls apart. Good days, bad days. I wonder what the migraine will take away next. I hope that I hear from the Chiari Institute soon about an appointment. I'm facing another winter of weak legs, searing head pain, and hopelessness. I lean on my church, my friends at church, my friends here, and God -- but friends I tell you this: when I am in the throes of it, no one can help me. It is me against the migraine.

D

14 comments:

leslie said...

I am so sorry that you suffer from this. My younger daughter gets migraines, too, and my stomache always lurches if the phone rings after 10 pm thinking she needs a ride to the ER. I'd never heard of Chiari malformation before but maybe we need to look into that. Nothing seems to work for my daughter except percocet and even then she ends up in the hospital about 2 or 3 times a year. I hope the Chiari Institute will be able to help you.

Employee No. 3699 said...

I have had horrible migraines that bring me to my knees. Laying in a dark room is sometimes all I can do.

I cannot begin to imagine what you are going through. I hope you hear from them soon and get an appointment.

Thinking of you~

Daryl said...

(((Doris))) .. very gentle hugs because I know when I am in the midst of an 'ordinary' migraine I dont even want anyone to breathe near me ...


:-Daryl

Jay said...

Oh gosh, I feel for you. I suffer 'ordinary migraines' with the aura and visual disturbance so severe it's almost vision loss at times, and sometimes I'm aphasic and can't understand what people are saying to me too well, but I guess that's still just 'normal migraine'.

How awful that they operated on your neck without checking the surrounding structures - surely if they'd x-rayed properly and read those x-rays correctly, they'd have seen the Chiari malformation?

On the fibromyalgia lists, I spoke to people with this, and they said the surgery may help or may make it worse. You're caught between the devil and the deep blue. :(

Baroness von Bloggenschtern said...

Oh, D: I wrap a big healing blanket over you that gives you dark, and calm, and noiseless, and scentless comfort.

I hope this one rides out quickly.

To quote a dear lady:

Peace - BvonB

Lavinia said...

Heartbreaking. My heart goes out to you. I wonder if Botox would help you, I have heard that it has provided relief to some people, apparently by freezing the forehead muscles in some way? Not sure. It sounds like many doctors are being consulted so if this is a possibility for you, one of them may know to advise.

I know that I had terrible migraines until I stopped drinking diet coke, and all aspartame/artificial sweeteners. Miraculously, the headaches disappearaed once I banished those sweeteners from my diet. But I know that different things trigger different people. I wonder if altitude/sea level has something to do with it. I went through a period of agonizing headaches many many years ago that began shortly after I moved about 300 miles north of the city. For as long as I lived in that remote location, the headaches dogged me. Once I left, they disappeared. Of course, as you say, your headaches seem to have originated following that surgery....

I know you are investigating many avenues and I hope desperately that a clue will be yielded to put a stop to the suffering.

Lavinia said...

Something that may sound crazy, but you may want to consider. Cutting down on phone calls made on cell phones, and eliminating all calls from cordless phones. Research is showing that the electromagnetic fields from these devices can trigger unusual activity in the brain, causing headaches, insomnia, among other symptoms. Luminous electric clock radios have similar effects. Furthermore, try to make your bedroom as electricity free as possible. Everything should be unplugged or turned off before sleeping, including cell phones. I know this may sound far fetched, (!!!) but I am sleeping much much better ever since I moved my clock radio to another room, banished my cell phone from my bedroom, and unplugged the tv nightly. My bedroom is now an electricity free zone (except for a fan on hot summer nights).

None of this may work for you, but the human body is such a mysterious organism and all these electric fields surrounding us have an invisible effect, on some more than others.

Moannie said...

I am so very sorry that you suffer so much pain...I can only imagine what it is like [from your vivid description]

You are a super star.
Only learned about Chiari the other night on Extreme Makeover Home addition when they built a house for a woman who had it as well as three of her children. How awful that it wasn't discovered before your long op.

Akelamalu said...

I used to have migraines but nothing as bad as you have described. It must be hell! :(

Anonymous said...

where do you live as there are Chiari specialist all over the US .

Shrinky said...

Oh sweetie, I am so sorry (wrapping my arms around you for a gentle hug). x

Shrinky said...

(My eldest has an abnormality at the base of his skull where it joins the spine, he gets blinding pain too. I can never know, but I do understand.)

Ruth D~ said...

So many share this pain. I can only imagine, and send compassion. Hope it fades like a bad dream. Soon!

Hilary said...

Dang, I hate that for you. I get migraines that last days too, but nothing like you've described. Have you tried acupuncture?