This is a site about migraine pain – constant, unremitting, intractable migraines. It is my journey with chronic, intractable migraines. I go to bed with migraines at night and wake up with them in the morning. Their intensity may fluctuate during the day. On a scale of one to ten, it is between 3 and 5 most days. I have a very high pain tolerance, after years of “hanging in there” with the low-level pain, and at this level the I need a nap, but that’s it. I may have 1 or 2 days a week at level 2 to 4, when I can function like a normal person. The other weekdays I have a level 6 to 9 migraine. (I don’t use level 10 – logically I will never reach that – but only logically.) Level 9 includes the screaming pain. I have had it so many times there is little screaming left in me. Sometimes I sob uncontrollably, sometimes I bang my head against the wall. None of this helps. It actually increases the tearing already flowing down my face from one eye, it increases the throbbing in my head, the ice pick stabbing through my eye and nose. The overall pain worsens. I reach for the “acute” medicine prescribed to stop the pain. I fervently hope, this time, unlike the previous ten times I have taken it, that it will work. I usually reach for the medicine too late, waiting until I am sure this is a “high level” migraine before I take any medication that will leave me in bed for the next 3-4 days.
When I am able to stand up without blacking out, without the nausea is overcoming my innards, making me want to run to the nearest receptacle, I head for the refrigerator to load up my ice bag, grab a towel so the cubes don’t dig into my head causing bruises and sore spots when this is all over, eat a piece of white bread for the nausea if I can get it down, call the dog walker, close the blinds, put in the ear plugs, find the eye mask, make sure the door has the “Do Not Disturb” on the outside knob I lifted from the last hotel I was in 2 years ago, and get back to bed. I lay down with the ice bag placed over as much of the high pain spots on my head as possible being careful not to get the ice on the eyeball even though that ice pick going straight through makes it awfully tempting. I know it will be bad for my eye, long-term. I let out a long breath, and wait for whatever medicine I have taken to start working.
“Please start working.” I say to myself.
“When are you going to start working? Are you ever going to start?”
I look at the clock. 2 hours gone, 6 more to go before I can take another dose, and the ‘hang in there’ my doctor said so blithely at my last appointment when he gave me the scrip for the medication he was sure was going work within 20 minutes for my ‘acute’ migraines.”
“I’d like to see you hang in there for just 5 minutes and see how you do,” I say to myself, as I push down my instinctual feeling to choke the guy the next time I see him. I have heard that so many times before. It has and still makes no sense to me while I am in the middle of intense unremitting pain. The throbbing increases, my level of calm goes out the window even with the relaxing exercise I manage to complete as I lay in bed.
“Take deep breaths, slow your breathing, and think of a beach or a meadow or anywhere that is restful and quiet. Everything you have done will allow you to sleep.” The ice will take block the pain so the next 6 hours can go by quickly. I cheat and take the next dose at 5.0 hours.
“Shall I call my doctor? No, I won’t get through. Go to the ER? Ten hours sitting in a chair waiting to see someone? No, too nauseous to get there.” Turns out “hanging in there” was the best advice. I mark it in my diary with all the other attacks to give to my migraine doc at my next appointment. I wonder if he reads them? Shall I call the PA and try to get a different medication? That is a tomorrow question. Is it time to find another doctor? It will take paperwork and at least 6 months plus a referral to get an appointment.
Ten, twelve, maybe eighteen hours pass before I feel any relief. Sometimes the migraine continues for more than 60 hours. 72 hours is my limit. Then I head to the ER no matter what. When the pain recedes I am relieved. Euphoria was a common feeling when I was younger. Now it is depression that I have lost another chunk of my life. I feel like I have been in a coma. Days lost in pain, days lost recuperating. I don’t know what day it is, what appointments I have missed and my short term memory is going down the drain.
I live alone, and have many back-ups systems in place. It is wearing. Downright exhausting. Eventually, it has broken my will to do much, always afraid another attack is imminent. Hidden away from my friends, living in the dark, I accept few social engagements knowing a break in my regular sleep schedule will trigger a migraine. The tickets I purchased go unused. “Normal” life is a relative term, and although my community of friends and neighbors try to empathize and understand my predicament, it is difficult. Their lives are filled with other things. They want to help but either cannot or won’t because it interrupts their day. Slowly, they retreat and no longer answer my calls or e-mails. The farther I am from their perceived “normal” world, the more I feel lonely and empty. Unable to work or socialize as I used to, the lost contact with my “friends”, add to the overall malaise typical of long-term migraineurs. Ours is an invisible disease. No one can tell I have it, no one wants to know. If it had a cure it would be like Cancer, and they could help or hang crepe. The way it is, it is an interruption. A reminder of their own vulnerability. Something they don’t want to get close to because they might “catch it”.
This is my story of chronic migraine pain. I have spent some 43 years working to stop said pain from controlling every aspect of my life. Now 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. I’m at 72 and counting. My best friends now are all online migraineurs, like me, advocating for research, and sharing common experiences.
I started writing to get my own feelings out about this debilitating disease. I have put it in blog form so others may learn something from what I have gone through, and continue to battle. For some, new modern medications may have eradicated their symptoms or at least allowed them some control over their lives. For some, it takes years, for some they come and go; everyone is different. Migraine is a genetic disease for which there is no cure. I am not a doctor and am not giving out medical advice. Everyone is different. This is my story. I will give links to websites that have helped me when I can.
I hope you will find these pages comforting, stimulating, and offer a jumping off place for your own journey with chronic migraine pain.