Migraine: Say "Know" to Drugs.

Too many times, my doctors have looked at the records and decided that they need to start from the beginning. Use the same medication(s) as the previous “healthcare professional”. Being a fairly intelligent man, having done YEARS of my own first hand research, I have had more experience with migraines than almost all of the doctors I have seen. The funny thing is that I have only now realized my own expertise with my particular situation and gained the courage to speak out.

When a doctor tries to implement a medication therapy that I know has been tried to no effect, I’m no longer shy. I tell ‘em, “Been there, done that, and I’m not gonna try it again”. There are too many times that the medicine’s side effects, are as bad as, or worse than the ailment. Too many times that I let a doctor tell me that I didn’t stick with it long enough, or that I didn’t reach a high enough dosage. With my collected records showing medicines, dosage, and side effects, I can now show proof that a previous treatment attempt was not worth trying again.

I guess my point is that I have to take control and supervision responsibilities for my own treatment. I am the only one who is truly concentrating on my medical condition and knows the day to day progress or lack thereof. I must continue to keep my daily journal during each treatment regimen, keep an up-to-date copy of all my medical files including tests and films and keep an up-to-date drug list with all the medications that have been attempted. Don’t just list the medications that have been tried, but keep track of the dosage and duration of each as well as the side effects experienced while taking them. This way I can show the doctor what I already know to be treatments that do not work. This will save both of us time and save me a lot of trouble!

If anyone has to start over with a new doctor, they should be prepared. Take your records, your imaging and your journal.

Tell your doctor what you KNOW.

 

Migraine: Are You On The Rebound?

Rebound! I’m not talking basketball or relationships. I’m talking headaches. I know that the consequences of using analgesics is the possible occurrence of medication overuse headache (MOH), but when one headache lasts for nearly a week, it is very difficult to go that long without taking something for the pain. It is very hard to break the cycle when you have chronic headache and the very medication you need can cause chronic headache.

I went years taking non-steroidal anti-inflammatory drugs (NSAIDs) like they were candy. I was on a constant roller coaster from one headache to another, till the pain was too great and I would require a trip to the emergency department. I finally learned and quit taking any over the counter pain medication. This alleviated the rebounds, but didn’t end my pain. Without the addition of rebound headaches it was much easier to pinpoint some of the triggers in my life.

I had to learn the hard way, to mix it up. Mix the different pain management techniques, so that mind and body do not become dependent on just one specific technique. I stir the pot, by using different things at different times. I encourage others to guard against rebound headaches by mixing up their pain management game plan. Basketball metaphor intended.

 

Migraine: Are You Wearing Your Sunglasses At Night?

There are not too many pictures of me without my shades in the last few years. It’s a common joke for friends and family to ponder whether or not, my future is that bright. I often wonder about that as well. Future or not, the simple fact is that I have a severe light sensitivity. Day or night, candle or headlight, have me wincing and turning away and cringing with the fear of the onslaught of another migraine.

Light sensitivity is a very common symptom of migraine sufferers and being light sensitive does not mean that I already have a headache or that it is coming on. Bright light is one of my triggers, but I know that the “triggers do not ‘cause’ the migraine. Instead, they are now thought to activate processes that cause migraine in people who are prone to the condition. For many people like me, light can be an enemy.

I have found the following ways to help prevent light from triggering a migraine. I try to wear a dark colored hat with a brim when I go outside in the sunlight. The darker the color, the more light is absorbed by the hat before it reaches my eyes. This is the same philosophy as athletes using black under their eyes to help them see.

I put my sun visor down and adjust the driver side mirror slightly to the left, when driving at night. This allows me to position my eyes to just focus below oncoming headlights. I can keep my eyes on the road without being blinded. Adjusting the driver side mirror allows me to prevent headlights behind me from sneaking up on me, or constantly blinding me (especially when THAT car stays in my so-called blind spot and will not pass me). Adjusting the rear view mirror to the night-time setting (usually there is a lever to flip it up) also helps.

And, I wear my sunglasses at night, and day. Not when I’m driving (well, sometimes I do). When I am in a restaurant, bible class at church, the mall, or out shopping I typically wear my shades. I don’t care if others think I am stupid, or if they think I think, I’m too cool. It’s better than the possible consequences. Walmart is the worst place for potential triggers, as the lighting is typically fluorescent and too bright (Not to mention the stress and the frequency that I walk into obtrusive odors).

If you have another “light” tip, please share.

 

Migraine: It Runs In the Family

It has been a tough week. I have been beaten upon by the migraine monster since early Sunday morning. This morning I woke up in pain, but as the day has progressed I've been left with the hangover.

In addition to my in uneventful loss of a week, my oldest daughter spent her week being poked and prodded in an attempt to diagnose her headaches. In January she had four wisdom teeth removed. Since, she has had an onslaught of headaches that are almost certainly a type of migraine. This week saw her getting blood work, a CT scan, and an EEG.

Since many migraine experts say that migraines are hereditary, the odds are not in her favor for these occurances to be isolated. My hope is that her headaches will be short-lived. If they are not, I'm hopeful that my experiences can at least help to find a way to manage her monster.

-- Andy

Twofer

What a lovely day I had. Sarcasm. I went to a concert on Thursday evening where David Wilcox was the headliner. This was my fifth time to see him in person. I think that this was the best performance I have seen him give. He has a new album coming out in April, and I can hardly wait.

I had started the day with no pain at all. Zero, zilch, nix, nine, nil, nada. No pain. My day progressed and I felt confident enough to mark this status on my blog, and on twitter. My friend and I got dinner on the way to the concert, and we were the first one's to enter the venue (a narrow, but long room seating about a hundred fifty people). All was right with the world. What a great concert it was. I enjoyed every minute of it. Well, almost.

Everything seemed just peachy, when suddenly my nose was overwhelmed by some woman's perfume, from a couple of rows behind me. She may as well have been in my lap. I was unable to do anything, as the cloud enveloped me. I couldn't move. There was nowhere to go.

I told myself over and over again, concentrate on the music. Concentrate on the music. And, I was trying to do just that. David was having fun on the stage, not just performing by rote (as if he would). I was laughing, and crying (all at the appropriate times) until the lovely funk caused my neck muscles to go slack and my head fell forward as the piercing pain began.

I pulled my pill box from my pocket and took a Zyprexa, but it was too late to stop the pain. Here I was listening to one of my favorite artists, while sitting on the second row, and suddenly the dream was squashed. My migraine shadow overcame my perfect day. I stayed seated, listened as best I could, but the beating in my head nearly drowned out the music. My only luck was that he was nearly finished when the trigger was pulled.

Friday morning, I awoke with a full on Quasimodo headache, AND A COLD. A twofer. My head ached, my nose was running like a sieve, and my throat was full of slime. I ended up giving myself two DHE shots through the course of the day. I also took some Dayquil to attempt relief of the cold. I hardly left my bed all day.

Today, was much better. My migraine limited itself to a dull roar, and the Dayquil kept most of the cold symptoms at bay. I'm going to bed early, and I pray that tomorrow allows me to wake up fresh and pain free. Good Night.

Migraine: Pain Free Day (PFD)

I wish I had found this heart generator before Valentine's day, but you know what, we should be showing our love, our compassion and our feelings for the one's we love every day of the year.

You too, can generate a heart (image on your computer) to share with others by clicking the link above. After making your heart, you will need to do a screen capture in order to download it. If you are using Windows, click "F3". On a Macintosh click "Command"+"Shift"+"3". After downloading to your desktop, use your favorite graphics program to edit or crop the image to your liking. You may then upload the image or email it to the loved ones in your life. I hope that you had more than a Happy Valentine's Day,

I hope you had a pain free day (PFD).

Migraine: Make It Easy on the Family

I found a series of videos sponsored by Zomig about planning ahead. I tried this medicine, but determined that it was not right for my migraines. Even though this series is sponsored by a pharmaceutical company, the information contained here is priceless.

The video below is about dealing with family. This one hit pretty close to home. I have been trying very hard to make each moment with my kids, and wife, as positive as I can. Everyone in my life is affected by my migraines. I need to remember each of these five things as my family and I cope with this illness; communicate, make peace, stick to routines, love them, and have an emergency kit.



These things are a little different for me; my family is made up of adults. My youngest is 15 and she is much wiser than her age, and my other two are in college. In my communication with my family, I try to keep my pain out of my conversational voice. Too often, the pain in my voice seems as if I am mad at the one I am talking to. My tinnitus doesn't help. I sometimes talk too loud, because I can't hear my own voice over the buzz in my brain. My family may take the loudness in my voice to mean, I am mad at them. I need to always communicate my true intentions and feelings.

Making peace, for me, means retreating to my lair. While at the same time, not disturbing the other activities in the house. If I need to go lie down, I just excuse myself and go. The rest of the family knows that I am in pain and they seem to turn down the volume without anyone having to ask (or decree).

Sticking to routines is very hard when my ability to participate is so sporadic. For me, establishing routines for myself helps to survive the daily headaches that have plagued me for so long. I try to go to bed at the same time each night, and wake at the same time each morning. I take my medications at the same time each day. I need to implement a work out regimen that I can keep on a continual basis. Making sure that my inability to participate does not affect the routines of the rest of the family is just as difficult. We incorporate extra time into preparation for our day, in case dad wakes with a headache or has had a headache all night (or all day, or all night and day). The rest of the family works hard at keeping to their own routines despite me.

I love my family. I tell them how much every day. We have little rituals that we use to tell each other how much we love them. Saying, "So Much", in my family will result in a kiss on the forehead. It's a tradition that we have had for a long time, and those two words mean a lot more than "I Love You". I never leave or let my wife and children leave home without telling them that I love them.

Having an emergency kit means two different things to me, the tangible and the intangible. I have a toolbox of items, some of which are intangible. Some of the physical items that I keep prepared are ice packs, medications, and a quite room. The intangible items include a positive attitude, relaxation techniques, and hope.

Making plans is important. I have plans for how to deal with each migraine. As the pain level increases, so also, does my steps and tools for dealing with it. My family makes plans for themselves that do not require them to be at the mercy of my headaches. If dad can participate, fine. If not, I know they are thinking about me and miss me.

Especially when they return with a chocolate milkshake.

Migraine: Just Relax

As a migraineur I have a tool box from which to pull from, in managing my life. Even if I may not be able to manage my headaches, I can still take control of how I deal with the situation. My headaches seem to strike me down at will. Knowing how to relax and practicing is one of the tools I use to get past the pain.

I have quite a few tools in my box. One of these is the use of relaxation techniques. Relaxing was not something I thought I had to teach myself. Sometimes I think I am relaxed, when I'm really not. I can sit in a chair "relaxing", and suddenly realize that my teeth are clinched, or my toes are curling. I've found that relaxation is something I have to do on a continual basis or my body forgets how to do it easily. I try to relax at least once every day for about 10 to 15 minutes.

I usually use, what I refer to as the "Warm Hands" technique. I don't know if that is what it is really called or not. Maybe someone reading this knows? I either sit up straight in my chair or lie down on the bed. I close my eyes and concentrate on making each part of my body heavy and relaxed. I start with my feet. I work my way up to legs, hands and arms, neck and shoulders, and even my face. I've got to work in order to wipe the scowl from my brow.

Each part of my body gets attention as I breath in and out of my mouth very slowly. I repeat to myself, "My feet are heavy, my feet are heavy" until they are relaxed and feel heavy. Then I go on, to the next body part.

After I feel truly relaxed, I concentrate on my hands and repeat, "My hands are warm, my hands are warm" to myself until I can feel the warmth rising in my hands. Theoretically, this makes the blood rush to my hands and decreases the amount of blood in my head. Less blood in my head means that the inflammation of blood vessels and nerve endings is decreased.

I take my time doing this. Each body part can take fifteen seconds to a full minute. After I've concentrated on each body part, I go down the checklist and make sure that, in fact, each body part is relaxed.

I have learned several relaxation techniques that help me to deal with the pain. I use one or more of them every day. By doing this daily, it is easier for me to relax when I am hit with a migraine. When the pain starts, I tell myself, "Just Relax".

Migraine: Don't Pull the Trigger

I am constantly at war with my migraine triggers. I guess they are called "triggers" because I may as well be pointing a gun at my head. My triggers are like Russian roulette, only worse... I never know how many bullets are in the gun.

There are times when I can have onions on my burger and not be affected at all. Onions are one of my triggers, but I love them, and feel that they are what makes the burger a burger. Other times they hit me right behind the left eye. There is no way to know. Sometimes it can take up to three days, before I feel the impact. Other times, it is immediate.

A few years ago, I read the book, Heal Your Headache The 1,2,3 Program, by David Buckholz, M.D., in which he talked about how we each have a trigger tank. That tank is sometimes running on low, and other times, it is filled to the top. If the tank is low, a trigger may or may not push it over the line. Some triggers may immediately make the tank overflow, causing a migraine. Everyone has a different size tank. People may have the same triggers, but the fill-line level of the tank may be different.

Onions are a migraine trigger of mine that sometimes cause me problems, while wintergreen is a trigger that ALWAYS hits me where it hurts (the head, of course). Just the smell of wintergreen will push me into what I call "a Gran Mal" migraine.

I found it beneficial to try an elimination diet, in order to determine my food triggers. I found that my triggers include onions, hot peppers and other nightshades, citrus, fresh bread, aged cheese, and processed or aged meats. It is important for me to stay clear of any of these triggers.

It is difficult because I like each of those foods, but they obviously do not like me.
By eating any of these trigger foods, I am putting bullets in the gun.

Migraine: Hibernate on Groundhog's Day?

I missed Groundhogs day! I was holed up in my bed, suffering through another migraine.

Groundhogs are one of the few mammals that enter into hibernation. This is true, also, of Andy "the migraineur", who has been known to burrow deeply into the dark caverns of the bedroom or even a closet, to escape from the sensory overload and pain. To migraine sufferers like me, the dark burrow that we create is sometimes our only refuge from the outside forces that seek to harm us.

There is actually research into human hibernation. The true science is called H2S induced hibernation. In 2005 there was research done with mice in which they were put into a state of suspended animation. The mice were subjected to this procedure for 6 hours and showed no ill effects. Later attempts to replicate the procedure with larger mammals were not as successful. Maybe they should have used someone suffering migraine or cluster headaches.

It was suggested that "life Tivo" might be a great way to live life when you want, in an article posted in the newsgroup, newsgroups.derkeiler.com, in 2005.

"Tivo for life - This is an extension of the time travel idea - sort of
fast forward when you want, live life when YOU want. Let's say you're a
basketball fan but hate the rest of the year - beep, beep, beep. Treat
the boring parts of life like one big commercial. Live life on YOUR
terms!"

If only I could. I would fast forward through each and every migraine. The downside would be that I would be Tivo'ing through half of my life. But the upside would be that I would not have missed ... Wait, in order for this plan to work, I would have to hibernate my family and the rest of the people in my life as well. Otherwise we would also miss half of their lives. Oh, wait again, I already am missing half of the life of my loved ones. I guess time travel isn't all it's cracked up to be, unless it could truly be like Tivo. Speed me up to the end of the migraine and leave everyone else in real-time!

I want Migraine Tivo !

I guess I'll have to create this new invention. With my new invention I would not ever have to hibernate and miss the living that the rest of my family experiences. Migraine Hibernation would be a thing of the past.

Migraine: Get Up!

I have been a Nik Kershaw fan for a long, long time. His early music was criticized for being too "bubble gum" but I thought the his use of proverbs to be stimulating to my imagination. My favorite song, of his, is "Wouldn't it Be Good", but I re-heard one of his tunes the other day that hit me between the ears. If you haven't heard "Get Up" before, take the time to listen. 

This song exemplifies exactly how it feels, to me, to be suffering from the migraine malady and missing out on life. What hit me hardest was the fact that when the song played off the ipod in the car, my 15 year old daughter pointed out the obvious. "Dad, that song is about you!?".

  I couldn't keep the tears from my eyes. You can hear "Get Up" on YouTube, but this is not the artist's video.  I also found a good book on Amazon.com that I have ordered, but yet to read, with the same title. I'll give a review as soon as I finish it.

Here's the song from Youtube;

Here are the lyrics.

Get Up

It’s dark in there and you’re quite unaware
That the cracks on the ceiling are mocking you
Your airless bag, your dust in a shaft of light
And you think you might
Yeah you might stay there all day

Get up, get on your feet
Get up, don’t go back to sleep
Get up, life is bitter sweet
And it’s all going on without you

You’re safe in there, no sharks anywhere
Not a soul to get you doing what you don’t want
Go on pretend it’s Sunday again, it’s Sunday again

It’s so warm in there, feels like camembert
All the things you’d do if only you had the energy
You bargain for just ten minutes more of this
When a prince’s kiss
Turns you into a swan
Dream on

Get up, get on your feet
Get up, don’t go back to sleep
Get up, life is bitter sweet
And it’s all going on without you

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.

Migraine: Find the Right Doctor

I Live in Southwest Virginia. There are a lot of neurologists in my area and ... there are no headache or pain clinics. Most of the neurologists in my area feel that they have all the tools they need to treat any migraine patient. Because my insurance company believes that it is better to exhaust all local resources no matter the overall cost than to go out of service to a healthcare provider that specializes in the type of treatment you need, I have seen about 80% of the neurologists in my area. This has cost me and my insurance company no small sum.

In my experience, insurance companies can make it difficult to find a doctor with the experience and tools needed to treat your particular type of headaches. Many neurologists just haven’t had the opportunity to treat a wide variety of headache sufferers. Because a lot of the causes are still unknown, there are too many different possibilities and treatment options are changing constantly.

I found some lists of pain clinics in the United States. This is probably not exhaustive, but is a start;

List of Pain Clinics - United States A - Ca

List of Pain Clinics - United States Co - FL

List of Pain Clinics - United States G - Io

List of Pain Clinics - United States K - M

List of Pain Clinics - United States Mi - Ne

List of Pain Clinics - United States Ne - Ok

List of Pain Clinics - United States Or - Tex

List of Pain Clinics - United States V - Wy

I did some research before picking a neurologist or other doctor to trust with my care (not using the above lists). That doctor didn’t work out, but he was able to put me in touch with another, and she put me in touch with the one that has given me the most hope in over 10 years. I took all of my records, my films, my drug and treatment list, everything my wife and I have collected since 1985. We sat down and he listened. For the first time in a long time, I believe that I have found the right doctor.

If the doctor will not listen to me, then I haven’t found the right doctor.

Migraine: Laughter is the Best Medicine? Well, Almost.

Well it’s official. I am a blogger. This is my second post to this blog. Just had to pinch myself (I actually did that, but only to see if it took my mind off my pain for a few minutes). What is the emoticon for a feeble attempt at humor?

õ.O

This one works for me. I just found it on Wikipedia. Just looking at these put a smile on my face.

I try as hard as I can to keep my sense of humor. It’s too easy to let the pain keep me in a funk. Even on good days find me walking along with a chip on my shoulder, not knowing when the pain is going to strike me down again.

Wait, I think this one is better for a feeble attempt ...

:-|

It’s important for several reasons, for me to push through the “bubble of pain” that has engulfed my life and force myself to smile. It’s important for my relationships with family and friends. Especially for my family. Living with a cave man (not belittling my own looks ~ just where I spend the majority of my time) is not a party for them. It really puts a strain on everyone when I wear my pain on my sleeve all the time. I see it affect each person in my family and their interactions with each other. Setting a positive example for them is one of the most important things in my life.

It’s important to my sanity to find humor and enjoyment somewhere in my life. By putting a smile on my face, even if I feel like I am going through the motions, eventually makes me feel better. By doing the things that I would do if I didn’t feel like a depressed ogre, I am actually doing something to help myself get better. I have discussed this phenomenon with my counselor and he told me that this is a documented therapy. My behavior changes can help to modify brain chemistry and ease my depression.

It’s important to remember that I am not the only person in my life being plagued by migraine headaches. The people around me are suffering as well. They may not have a headache, but their pain is just as real, if not as physical. Trying my best to be myself (the real me) is one way to help myself and my family.

I found this video about dealing with family members during a migraine, and other good videos at the web site for Zomig.