Migraine; Par For The Course

I've had a rough week. It started alright, but by Thursday, I was sporting the scowl of a migraine. By Friday, it was a grimace and on Saturday, it turned into a full quasimodo migraine. Left eye drooping, slurred speech, and loss of motor control on the right side, were Par for the course.

I have been having three to four migraine days a week since the end of January. A whole bunch better than the seven a week for the eight months before. I have also been blessed in that, the severity has been less than before as well.

When I told my mother that I would be there for her, during her back surgery this week, I prayed that my migraines would let me see that promise to fruition. I needed to be there, six hours from my home, on Sunday. So the Saturday ringing of the bells of Notre Dame was more scary than usual.

But, God provides! I woke up Sunday, bright eyed and bushy tailed, and drove the six hours (a little less due to prevailing winds) with nary a sign of quasimodo. Today, makes four days in a row; migraine free. I am feeling good and confident that I will be able to stay that way for as long as my mom needs me. Praise the Lord.

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Unrest

I dedicate the following poem to all the people of Iran, and China, and all the other places in the world where the masses are left unheard or unheeded. As the world shows our dissatisfaction for arrant governments. We pray for the poor and the persecuted.

Unrest

Faces dance

In cheering walls.

Heaving chants

At those they maul.

A rushing torrent

Casting stones.

Anxieties spent

In angry tones.

Speaking out

For what they feel.

A fighting bout

Between wrong and real.

Politics prevent the boast,

Of everything at peace.

Unrest exists on every coast,

Charter's short on this world's lease.

We need to stop and look around,

To notice what we see.

React calmly, break new ground,

Hear the masses and their plea.

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I hate Migraines

I've always thought of the word 'hate' as a word that is final, has a life of it's own, never dies, and is the worst thing that you can say to another person. But can I use this word to describe my feelings for a disease that has been a part of my life for over 25 years? Am I allowed to use this word against a foe that is not human? Am I allowed to place this curse on something that is not me, but is within me?

I have struggled with this philosophical question at times, wondering if hating a part of myself, my life, is in fact hating myself. There are those that would argue that the migraine is not truly a part of ones self. I know that I have made a conscious decision not to allow the migraine label to be a part of who I am. But it does live in and control my life much as the sun and rain control my ability to perform some outdoor tasks.

Is having something controlling my life make it a part of my life? Does it make it, in fact, a part of me?

A cyst or a lesion may be attached to my physical body, but not actually be a part of myself. The impact they cause is the effect they present. Removal of the physical is removal of the effect. A migraine is the effect of some, at this time, unknown physical condition that could be vascular, neurological, corporal, as well as many other systemic conditions. But, in truth, the pain is not a part of me.

Can I hate the effect, migraine, without hating myself? Most certainly! I am allowed to have a strong aversion to the condition that plagues me, and still love myself. I will not use migraine as a way to describe myself. I will not allow it to become a part of me. I will continue to seek its cause and treat the effect, without giving up. I do this because I hate migraines. I do not hate myself.

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Tricks of Light

There are tricks to me handling Light because of my arch nemesis, the migraine. To suddenly be hit by an errant lumen could be my downfall on a day, when the enemy is nowhere to be seen.

Cloudy days and darkness may both provide perils to my eyes. For this reason I have the following tricks to prevent the onset of a migraine due to wayward light.

I wear my sunglasses inside and out. I don't know, or care, if others think I look cool. Going from outside-in is a change in light quality, until I get used to the ambient light, I take no chances.

I sit so that there are no lights shining directly into my eyes. This can be difficult at times, because I have this thing about sitting with my back to the door (too many westerns?). Diffused or filtered light is not nearly so bad on my head.

I close my eyes before turning on a light. It helps to face the floor as I open them as well. Any sudden or Phlit-ering of light can trigger a sudden migraine. Usually the sunglasses help with this as well. My family warns me before they turn a light on, or off in the room.

You may have your own tricks to prevent light from triggering your migraines. It's important to create habits that allow you to exist free from light triggered pain. Feel free to share any tricks you may have. You can email them to me if you don't want to put them in comments. You should subscribe to my blog if you would like to learn some of my tricks for other potential triggers!

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Recovery Process

February of 1999 saw me home recovering from surgery meant to fix my "Dain Bramage".

Before leaving the hospital for home, my wife shaved my poor misshapen zipper head, so that the left side matched the right. I never allowed anyone to take pictures of my fez monkey hairdo.

Now, it was time to start the recovery process, and determine if the craniotomy had helped or hurt me. I was so determined to get rid of the migraines, I would have done anything and did. Now, I had to pay the consequences. I'm not just talking about a bad haircut, either. Soon after returning home, I started to have small seizures, that the anti-seizure medication didn't effect.

I began having episodes where I would stop talking mid sentence, and stand or sit with a blank look on my face. Sometimes, it was like blacking out, where I would fall to the ground and wake up just in time to feel the floor meet my head.

I began having episodes where I would stop talking mid sentence, and stand or sit with a blank look on my face. Sometimes, it was like blacking out, where I would fall to the ground and wake up just in time to feel the floor meet my head. Sometimes I would even repeat myself, without even knowing I had done it. I would have aphasia and not be able to talk, although, I could write what I was thinking. I would lose motor skills on my left side, and could speak in sign language using my left hand, but not my right. My aphasia might happen several times a day, and my whole family got used to Daddy phasing out or blacking out in the middle of doing something.

Luckily for me, I did not have any problems while playing recreation league basketball. Unless you count getting hit with an elbow and driving home with a concussion. Unluckily for me, I found myself lying down in the shower too many times too many.

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I have recounted these stories of my 1999 brain surgery and recovery in order to give myself some peace, and maybe provide some information that would help someone else. I have not tried to recount every experience or discuss each decision as right or wrong. Everyone's life is their own, and each of us must make our own decisions. I did get nearly eight months, migraine free, but I don't think that I would make the same decision today knowing the other problems that were associated with the operation. Hind sight is 20/20.

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Craniotomy After Glow

I awoke in the ICU, after my craniotomy, very confused. I think part of my confusion was the fact that I was alive. I don't know why I had resolved to accept that I might not survive the surgery. I guess I was prepared to get rid of my migraine pain, no matter what it took. If it took, the Lord taking me home, then so be it.

I was also confused by the sterile and stark nature of the room, I woke up in. I honestly didn't know for some amount of time, if I was alive or dead. Morphine can do that to you.

It turns out that the surgery went extremely well. The neurosurgeon was able to remove the cyst. When they happened upon the AVM, unprepared to repair it, they cauterized it on both ends with the thought being that it would be absorbed by the body over time.

Neurosurgeons obviously spend a lot of time in school to learn their craft, but I submit that they should also get their beauticians license, if they are going to shave your head before surgery. I had asked if I should shave it before going to the hospital, and was told by my doctor, that he would take care of it in pre-OP. I awoke post-OP with my entire head shaved, except for a baseball sized circle on the side of my head, where it had lain on the table. I felt like a monkey with a fez. It took several embarrassing days before the staff would let my wife shave the tassel off.

Needless to say, my post surgery after glow was not very endearing. My face appeared mottled yellow and blue, I had a long zipper (stitches) from the center of my front hairline around the hairline to my ear, a black eye and a fez. Yes, I was on the road to recovery.

Monday, June 8, I will finish with "Recovery Process". Please come back for this final true story installment or click one of the links on this page to subscribe to my blog.

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Arterial Venous Malformation

Arterial venous malformation, or AVM for short. An abnormal connection between veins and arteries; that is what they found hidden under an arachnoid cyst in my left anterior temporal lobe. I was having surgery to remove or fenestrate the cyst, but they found more when they operated.

I was "Dain Bramaged"!

I had been joked with, all my life, because of my crazy antics. But, it turned out to be true. Not only did I have the arachnoid cyst, but also an AVM. Of course we did not know this before the start of the surgery.

Before the surgery, I had and MRA with contrast. A magnetic resonance angiography (MRA), is a powerful magnetic field, radio waves and a computer that produce detailed images. It is obviously less invasive than a catheter angiography. For whatever reason, my test did not show the AVM lying beneath the arachnoid cyst.

Entering into the surgery, I was scared but resolved. I had a feeling that I wouldn't wake up, but I had hope. Being a Christian I was certain that my God would take care of me, no matter what the outcome. I updated my Will, and created a list of all the information that my wife might need.

I had taken the time to order a bouquet of candy flowers from a specialty shop, and wrote a letter to my family explaining my love for them and my hopes for their futures. It was set to arrive at the house two days after the surgery.

I had a quiet calm that morning (even before I was given "something" to help me relax). I resolved that no matter what, I would awake to a new day, a new beginning. As the anesthesiologist asked me, "Are you ready to take a little trip?", I answered, "I'm not going nowhere with out my lugga."

Please come back Friday for the conclusion of this story, or better yet, get my feed automatically by choosing one of the options to the right.

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Using Twitter to Keep a Pain Log

I have questioned whether Twitter could be a valuable tool beyond marketing, and now I have found an answer. "Now is the time for those of us who have a chronic illness to let Twitter worked for us!", Lisa Copen Writes for "Chronic Illness and Pain Support".

A Private account on the social networking tool, Twitter is perfect for chronic pain sufferers to keep a pain log or daily diary. Lisa gives 5 steps for using Twitter.

1. Create a private account just for your pain log.

2. You can send posts of 140 characters or less from your cell phone as well as computer.

3. Start by sending posts about anything you want or answer the question, "What did you do today?".

4. Print out your posts before your next doctors appointment and highlight any changes in pattern or pain.

5. Use a program on your computer to manage more than one account, so that you can keep personal and non-personal Twitter accounts.

These ideas make it much easier to keep my daily diary. It is sometimes very difficult to find the time each day to write things down, but Twitting is something I already do. Maybe it is something you may want to do now, as well.

-- Andy Honaker

Dain Bramaged

In 1999 I went to my family doctor with a folder of medical journal articles and told him, "I think I may need brain surgery".

What was I thinking?? I had been told six weeks before that I had an arachnoid cyst in the left anterior temporal region of my head. I was told that this is not an uncommon condition, and is most definitely benign. The doctor's said that it may have been congenital or it may have been caused by a trauma. Since no one else in my family has ever had migraines (that I am aware of), I concluded that it must be due to trauma. They don't call me "Head Trauma Honaker" for nothing!

(The scan shown above is not mine and is shown for reference only)

I had heard several times over the previous 16+ years (I was first struck without warning in '82), that there was a slight abnormality in my CT scan, but it was nothing to worry about. In '98, I finally became smart enough to ask questions of my doctors and began my own research. The location of the cyst and the location of my pain were exactly the same, so I began to read everything I could find about this and similar conditions.

So... I found online articles that talked about the "exact" same condition possibly causing migraines, and that some success had been seen in fenestration (poking holes in) or removal of the cyst so that it would not contain cerebral spinal fluid (CSF) under pressure. I gave these articles to my family doctor and my neurologist, who both agreed that I should consult with a neurosurgeon about having a craniotomy.

We scheduled the surgery for the next month, two days before my birthday, and I began putting my affairs in order.

Part two, Arterial Veinous Malformation, will be posted on Wednesday, stay tuned, or click the button to subscribe to my blog.