Discussions

I have chronic intractable migraines. I've had them my whole life, with my earliest recollection being around 5yrs old. I remember telling my mom that the walls hurt my eyes.  
 
Today, I have yet another bad migraine. A good day, where I feel like I have boundless energy, I am at a four of ten on the pain scale. A day where things are harder, I am at about a 6. Today, I am at a 9. I have no idea why. I ate no triggers, I have not been around anything new, the barometric pressure isn't terribly low and I made sure to drink enough water yesterday. Why today?  
 
The truth is there is no real answer. And that is one of the most frustrating things about living with chronic intractable migraines. I never know what is going to set me off. One moment i am getting out of bed, the next my legs buckle beneath me as I stand. Then the pain hits, and I know at 9am, the day is gone, lost to the demon in my head. I take my over the counter pain killer. I hope that today will be different. It doesn't help. I resort to T3's. That was 3 hours ago, still nothing. It's getting increasingly harder to keep my eyes open enough to see. Typing this... hurts. Last resolve... Morphine. I hate it.. it will knock it out kinda..but my day is ruined. My day, tomorrow, the next day. Who knows how long? no one knows.  
 
I sit on the sofa, trying all of the tricks you collect as a long term migraine sufferer. I turn the ringer on the phone down. I unearth a precious carbonated soda with caffeine. The peppermint oil gets slathered on my forehead and neck until I smell like I sleep in a bed of candy canes. The ever present ice pack gets put on. Lights go off. The dog let out and told to hush. I try to stop the tears as crying only makes things worse. Only after all of this is done can I sit down and wait out my head.  
 
I have learned, through all of this, how strong I can be when the pain is this bad. I know that eventually it will go down, slowly. Ever so slowly, eventually the pain will go from a 9, to an 8, hover at a 7 for a day, maybe 2. Then hopefully creep down to a 6. If I am really lucky, the pain drains away, leaving me at a 2 or 3 for a few hours. Eventually the pain goes away. If the pain lasts too long, I do go in for a shot.  
 
And then there is the aftermath. The day after a high-number day. I use up all my marbles for a few days dealing with the pain of the day before. I am exhausted. I sleep a few hours at a time to get my body recharged. I eat a bit. And get ready to go back to battle again.  
 
I have been to a pain clinic. For those of you who aren't aware of what a pain clinic does, it monitors, dispenses and offers alternative treatments to narcotics in chronic pain patients. I have been taking some form of narcotics off and on for the past 10 years.  
 
The problem is that people like me are rare. Most migraine sufferers respond to one of the more common remedies. Triptans, ssri's, beta blockers, anti-depressants to name a few. Most people with migraines find a great amount of relief from drugs like Imitrex, Relpax, Maxalt- triptans that work to abort a migraine in progress. We have all seen the over-the-counter remedy commercials too. "If you have migraines, you know pain." Again, many people get relief from a 2 cent tablet. I am not one of the lucky ones, one of the normal ones. I have spent the past few years of my life as a human guinea pig. I have tried everything under the sun. I have been to faith healers, chiropractors, neurologists, internists, acupuncturists, you name it, I've tried it. The big thing at a pain clinic is to get you off of narcotics, to learn to function through the pain. This approach works well for people with joint pain, muscular pain, really any kind of pain other than migraines. And I have tough migraines.  
 
I was told by the pain clinic that one of the big things about keeping patients on narcotics for long-term, are the social consequences. Social consequences? I can see the social consequences of being in constant pain so easily. I have lived those very consequences for the past 10 years. I have lost friends, missed movies that I really wanted to see, missed important exams, given up hopes of holding down a full-time job, etc. Social consequences?  
 
And then I got it. I think. Society places so much value on working through pain, not admitting that you need something else to make it through the day. That's why they worry. I think. I also think that part of it is that some of the drugs commonly given to pain patients are abused on the street. That there is a stigma involved with taking methadone(that's for heroin addicts!), oxy-contin(a drug with many "recreational" users), vicodin, percocet, the list goes on. It tends to make people loopy, happy, and to, as a friend of mine put it- "put fuzzy, happy edges on everything". But to those of us with chronic pain, they are important tools in our arsenal. They are the tools that allow people to help their children with homework, cook dinner, write blog entries. As scary as they can be, they are a necessary evil. It does not mean you are weak, or unwilling to work through pain, it means that you are willing to take on the stigma that goes along with it.  
 
This winter has taught me more than I ever thought. It has shown me a new trigger, it has shown me how much I can take before breaking, and it has shown me how strong my fiance and I can be when faced with the possibility of something well and truly awful.  
 
When it was really cold, going between warm and cold and warm and cold drove my head nuts. It seems to be a new trigger. You know the shot of instant pain you get from drinking a slurpie too fast? Take that pain and lengthen it for the entire day, maybe 2, maybe 3.  
 
The other big thing about winter that gets me is the constant change in pressure. I can feel a snow storm before we have one. And now it seems that we are having a flurry every day. The pressure yo-yo's and my head starts in. But what I wonder is if there is any way to combat it. I am beginning to think not.  
 
 
And I find now that more and more I refer to my migraines as something totally separate from who I am. For a long time, I always identified my migraines before myself. It's hard when you are in constant, chronic, almost unbearable pain to separate that from who you are. What happened a year ago, when I met Greg, was some sort of epiphany if you will, a discovery that I am not my pain. My pain is me, but I am not my pain. It was an amazing thing to discover about myself. I know that many frown on the use of narcotics such as morphine, and feel free to disapprove, but remember one thing—you are not me. You do not know my pain; I do not know yours. What works for one, may very well not work for another. Those realizations have led to me to some sort of peace about my pain.  
 
I have learned to accept my new problems without getting so worked up and making them worse. I have adjusted to the need of a cane during the dizzy spells. I have adjusted to being less mobile. But I have finally begun to accept it. I think it is a process that all of us go through when we experience chronic pain, a certain acceptance of what we have, and then the realization that we can move forward.  
 
This is what winter has taught me. It taught me that I am stronger than I ever thought, and to watch out for those $^&%* snow flurries. They really do give a new meaning to pain in the neck.