If you have made it this far, you know this is a site about pain – constant, unremitting, intractable pain. This is the kind of pain you go to bed with at night and wake up with in the morning. It may fluctuate during the day. On a scale of one to ten, it may be between 4 and 6 most days and then you may have 1 day a week at 3, and the rest of the time you are between 7 and 10, or over the top, which is what I call the screaming pain, except you have had it so many times there is no more screaming left in you, and, if you have migraines, like I do, you may start crying, increasing the tearing that is already coming out of one of your eyes. But that only increases the pressure on your head and makes the pain worse, so you stop that quickly, try to think through the massive pounding and ice picks stabbing through one side of your head, eye and nose, reach for the medicine and hope, this time, unlike the 100 previous times you have taken it, it will work.
Then when you are able to stand up without blacking out, and are not too nauseous that you feel like you have to run to the nearest receptacle, you head for the refrigerator to load up your icebag with ice, grab a towel so the cubes don’t dig into your head causing bruises and sore spots when this is all over, eat a piece of white bread for the nausea if you can get it down, call the dog walker, close the blinds, put in the ear plugs, find the eye mask, make sure the door is locked with the “Do Not Disturb” sign you lifted from the last hotel you were in 2 years ago, and go back to bed. All this in place, you lay down with the ice bag placed over as much of the high pain spots on your head as possible (usually the top of the head, forhead, the temple and the nose, but it varies for each person), being careful not to get the ice on the eyeball even though that ice pick going straight through makes it awfully tempting, but you know it would be bad for your eye, long term. You let out a long breath, and wait for whatever medicine you have taken to start working.
Please start working. When are you going to start working? Are you ever going to start? You look at the clock. 2 hours gone, 6 more to go before you can take another dose, and the “hang in there” that your doctor said so blithely at your last appointment when he gave you this medicine he was sure was going to solve all your headaches for good comes back to you.
“I’d like to see you hang in there for just 5 minutes and see how you do, you blithering idiot!”
Not calmed down as the throbbing increases, you start to take deep breaths and calm down, hoping that everything you have done will allow you to sleep for just a litte while, and the ice will take away enough of the pain, so you can live for another 6 hours to get to the next dose of wonder medicine.
Call the doctor? No. That won’t help. He won’t call you back until at least 9 pm or tomorrow. Waiting 10 hours in the emergency room is faster. You just have to get through this one, acute migraine, mark it in your diary with all the other attacks, and report back on your next appointment. Get a different medication? Well, not for this one. Find another doctor? Perhaps, but that will take a lot of paperwork and at least 6 months.
Ten, twelve, maybe eighteen hours pass before you feel any relief. Sometimes the headache (a sweet euphemism for what you are feeling) goes on for 3-4 days. With the recuperation time from the headache itself, 5 days pass. You feel like you have been in a coma, with no sense of what has been going on in the outside world. Good thing you gave up watching the news last year. If you are lucky there is someone around to help you. If you live alone, you have to manage this by yourself. Since this is not the first attack, and probably won’t be the last, you have worked out a routine that gets you through. But it is wearing. Downright exhausting. Eventually, if it goes on long enough, it breaks you down until you are hidden away from your friends, living in the dark, accepting no social engagements because the chances you will be able to make them are slim. Having any kind of “normal” life becomes impossible, and although your community of friends, neighbors, relatives, and such try to empathize and understand, the longer it continues, the harder it is to think that you are not just a slacker, hiding behind these “migraines” because you cannot cope, or don’t want to. That it is all in your “head”, pun intended. The farther away you get from the world, the more you feel like a no good slacker, unable to work or socialize with your friends, and feeling worthless adds to the overall malaise typical of long-term migrainers.
Sound familiar? Some of it? All of it? That is what I will be writing about in these pages – my story of pain, particularly migraine pain, and the now 43 years I have spent trying to stop said pain from controlling every aspect of my life. When I say controlling, I mean it. They come in faster than I can blink, and although I know many of the triggers, I have yet to find a medication or treatment that is able to stop them once they have started.
These pages are meant to shed light on this debilitating disease by descibing what I have gone through, and continue to battle. For some, the modern medications may have eradicated their symptoms completely. For some, it takes years, for some they come and go; everyone is different. Migraines are a disease for which there is no cure. I will include links when I can to support groups, medical information, and places which may help others understand chronic pain, which no one really understands unless they have it themselves.
I hope you will find these pages comforting, stimulating, and provide a jumping off place for your own journey with pain.