Migraine: Aching

The following is a poem that I wrote some time ago to describe some of the sensations of having a migraine and dealing with it. Tell me if you find any of yourself in this writing.


Aching
Silence broken by a siren
Pounding at my ears.
Driving darkness closing in
Soliciting my fears.

Confusion drumming at my thoughts
Rattling it’s beat.
Pounding down, it
Pins me to my seat.

Helpless to the forces
Gnawing at my strength.
Aching from the torment
And it’s awkward length.

Fighting back, I scream aloud,
As I am prodded by the fright.
I concentrate on memories
To form a new insight.

Complete control awakens now
And stands up to inspect.
It reaches in, removing stress,
Putting calmness in effect.

Stretching soul and limbs,
Shaking off the pain.
I total up my strength
To start the cycle once again.

-- Andy Honaker (1984’ish)

Migraine: It's All About Attitude

Today is my birthday. My first thoughts were that 47 is not one of those special birthdays you celebrate with gusto. Then, I began to think that I was glad to have another, and not have left off at 46. So, today is my BIRTHDAY!! That kind of makes me feel better about this day.

I was given a copy of a newsletter over the holidays and told I should really read it. Yes, it was my wife who thought enough about me to keep sticking it in places I was sure to find it, and later directly in my hand. This newsletter is not published online anywhere that I can find, and it is such good information that everyone should get the chance to read it. The author is John Ingram Walker, M.D., the new section chief at Carilion Clinic Saint Albans Hospital in Montgomery County, Virginia.

Please take time to read this article and leave any comments you may have. I have saved it as a .pdf file, so you will need Adobe Reader to open it. It is worth every second of time you give to it, I know, as it took me four weeks to finally get the hint and read it myself.

... My poor Wife.

I can make my life better in 21 days. My first step has been to quit calculating the scale of my headache and to start calculating the scale of my life. I am doing this by ranking my day, not by the level headache that day (4 out of 10), but by ranking my day as a 6 and knowing that this is a better than average day.

Today is my birthday, and it is a 10!!!

Click either image to download the PDF version.

Migraine: Hit Me With Your Best Shot!

I was thinking of naming this post “Stick me with you best shot”, but I decided to “stick” with the original Pat Benatar song title. I am sitting in my hospital room, suddenly asking myself “What is it you wanted to say”? I have a “point”, but I’m not sure how I want to make it. So, I’ll just fire away...

I wanted to travel a different path than what normal or abnormal, I don’t know, would think about the use of the word “shot”. I like the context of the lyrics of this song, even though it has anti-love overtones. I like to look at another way. For me this 1980’s hit is in the same stratus sphere with the Theme From Rocky.

I recognize that my opponent is tough, and there may be billion reasons why I shouldn’t or couldn’t win the fight. But I put myself out there and see what happens. I may not have won the first 27 rounds (the number of years that I have been plagued by migraines), but I am not going to give up. I am taking the fight to the enemy. I just spent six and a half days in the headache ward at Jefferson University Methodist Hospital in Philadelphia, PA.

I live in Southwest Virginia, and there just aren’t any really migraine knowledgeable medical practitioners any where near me. No offense to anyone I may have overlooked. Over the years, I have been to Duke University, UVA Medical Center, The Medical College of Virginia, and all without resolution. I took a bold step and reached out to Dr. Silberstein, with JU, as he either is or was the president of the American Headache Association. After a few months of out-patient care, we jointly decided to give in-patient care whirl.

I returned (not quite home, as I am staying with very good friends just north of Baltimore) yesterday, having been without that Gorilla sitting on my back for almost 3 days. To me, this is near the miraculous, since I haven’t had three good days with no pain in almost a year. Much less three in a row!

I have hope today, that I haven’t had in a really long time. I’m not blind to the possibility of having a headache any moment, but I not living in fear of that moment. I know that I am strong enough to take the blows and to continue to come out swinging. Well, I’m a real tough cookie myself.

...You come on with a come on, you dont fight fair
But thats o.k., see if I care!
Knock me down, its all in vain
Ill get right back on my feet again!

Come on hit me with your best shot!

P.S. I will spend some more time real soon, documenting my treatment at the hospital. I want to give a shout out to all the Doctors, patients, and especially the men and women nurses and assistants working the floor. I really appreciate the care you gave to me.

Migraine: Keeping Hope

I returned from a sixteen hour round trip to Jefferson Hospital in Philadelphia, earlier this week. Eight hours each way to spend less than seven minutes combined with both a doctor and a nurse. This was a pre-admittance visit. I had tried to handle the preliminary stuff over the phone, but it was a no-go.

Sometime next week I will be going back to Philly and will be staying somewhere between one and several weeks. I am apprehensive and hopeful at the same time. The expectation is that through an IV, they can hydrate and detoxify my system, and then, try several different medicines within a short period of time.

It wasn’t really a New Year’s resolution, but as of the first, I stopped taking any pain medication and I quit drinking caffeine. Caffeine has not been a problem for me, as I usually have a maximum of 1 cup of coffee or a soda in a day if at all. I have quit all together a few times for years at a time. I have done well with no pain meds, and have been able to subsist using meditation and exercise. My thought is that the detox should be simple if there’s not much to detox.

Many years have passed since a doctor has looked me in the eye and told me, with a sense of certainty, that there was something that could be done. Hope. I’ve claimed to have it, but I know I don’t always trust in it.

What is hope? Not desperation, not optimism, realistic hope? Eyes wide open, encouraged, organized, and realistic, faith in a pragmatic outcome is my personal definition (after a day of research). I don’t discount my Christian faith. As a believer in God and Christ, my comfort in the truth of eternity is my hope in an eventual cure. But I have a hope, a practical belief, that the answer to my pain is also in this world. Someone, somewhere has the key to unlocking this mystery.

Is the answer in Philly next week? I am hopeful. But, even if it is not, I still have hope. Five years ago, the word migraine was a shadow without any understanding by the general public. Today, there are more professionals seeking the answer than ever before. I have to keep the hope, and writing this down has helped me make it through another day.

Here are a few of the sites I found helpful today. I am not endorsing, just referencing;

http://changingminds.org/explanations/emotions/hope.htm

http://www.cbc.ca/canada/story/2008/12/31/f-vp-handler.html

http://en.wikipedia.org/wiki/Hope

http://expreacherman.wordpress.com/2006/11/20/what-is-hope/

http://www.desiringgod.org/ResourceLibrary/Sermons/ByDate/1986/537_What_Is_Hope/

Migraine: A Letter to Those Without Chronic Pain

I found this on the blog “In My Head...Aches”. The writer has not submitted an article since last August, so I was unable to reach him/her. I pray that this person is doing better.

I don’t know if I want my loved ones and friends to necessarily read this letter, but it does feel good to see that someone has put the thoughts, that I have had so many times, down in print.

I’ll have to think about it.

Letter to people without chronic pain:

“Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its affects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.

Thats what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying ” You did it before” or “oh I know you can do this!” If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that the “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?

I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off or forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be “normal.” I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.

In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.”

-- Anonymous

Migraine: Struck Without Warning!

July 1982 - First Encounter;

I was building a box. Working for an export company that provided containerization and crating services. The last layoff, left me working alone in a warehouse that echoed the voices of full three shifts. The small box I was building had all the pieces cut and I was nailing them together, slowly, trying to make the work and the day match.

I could hear the hiss of the air tank after the report of the gun. The 8-penny nails firing and gripping the wood to form sides, ends, top and bottom. The box was beginning to take shape, while the day seemed to last forever. There is no word to describe the sound or lack thereof, as I was assaulted.

I tried to open my eyes from my horizontal position on the cold concrete floor. The searing pain crippled my senses, and I couldn’t figure out where I was or what had happened. I lifted one hand to my head as the other strained to hold my face from the floor. No wetness, no sticky mess, no sign of blood at all. I looked through the slit of one eye, my right I think. No attacker, no 2x4 club, no rock to take the blame.

I lay back on the floor next to the box and we shared the cool concrete like an ice pack. There wasn’t much difference between us. The box pinned by the nails and I felt the pain of an ice pick that must of been protruding from above my left eye. Of the two of us, I was the only one able to move.

Half crawling, half stumbling, all painful, I made it to the break room and restroom. I think I was screaming in pain, but no one came from the other side of the warehouse to investigate the cries of “Lord, Help Me!” and I couldn’t hear my own voice for the ringing in my ears. The faucet splashed water on my hands, my face, my clothes. I can remember falling against the sink, stumbling into the wall, crashing against the outside of a stall. There was no time, none at all. I could have been there several minutes or several days. It must have been somewhere between the two, but closer to the first.

At some point the ache in my head retreated, leaving me totally confused. I went back to the box. I looked all around and found no witness to the beating I had taken. No weapon, no assailant, no clue. Nothing to explain the torture I had endured. I picked up the nail gun and finished putting the box together, making every movement very deliberately and cautiously.

I finished the day as I had begun... naive.