I recently joined a Facebook support group for migraine sufferers. It has been an experience that leaves me with such a variety of emotions. Sadness. Empathy. Frustration. Compassion. Fury. Hope. I read the posts and it is as though I am reading something that younger versions of me might have said. Versions of me in the early stages, with ill-equipped doctors doling out terrible advice and the wrong meds. Giving up on me. Over and over. Versions of me that wondered if anyone else on the planet could possibly be experiencing what I was going through. Non-stop pain. Pain that was crippling. Pain that made me wish I was dead, or at least unconscious until someone invented a cure. Isolation. Judgement. No one could SEE my migraine so many people dismissed it, underestimated it, assumed I was faking or being dramatic. Loss of wages for when I couldn’t get to or stay at work. Loss of income when I was repeatedly let go for absenteeism. Accusation of being a drug-seeker when I wound up in the emergency room. The inability of so many ER staff to distinguish between seeking drugs, and seeking comfort, progress, a few moments, at least, with less pain. Versions of me that could sense when yet another doctor was about to give up on me or simply say that my only option was pain management with narcotics. Versions of me ready to just give up all together.
More than 14 years of living with this condition has left me wiser, more cautious, patient, more discriminating about who I allow on my treatment team, and eager to get the word out that if you are dealing with migraines, or any other chronic condition – know this – YOU ARE NOT ALONE. The first time I actually believed that was when I was being treated in-patient at the Michigan Headpain and Neurological Institute. A team of doctors from various disciplines led by Dr. Joel Saper, world-renowned for his work in migraine treatment, fully dedicated to 22 patients. We did 3-day trials of intense IV protocols. Some helped. Some hurt. Some did nothing…or so it seemed. Some people had miraculous success. Others, like me, waited for weeks with no apparent improvement. We went to classes on the physiology of pain, stress reduction, coping mechanisms, art therapy, yoga. We saw psychologists. But out of all of that, one of the most amazing and life-altering parts of this entire process was the 21 other people who actually got what I was going through. REALLY got it. Not “I can only imagine” got it or “I went through something similar” got it, they actually, really, absolutely got it. That was as powerful as the medicine. It was miraculous. Life-altering. Those relationships are still some of the most important in my life.
My time at MHNI was also my first experience with a real headache clinic. The results were profound. If you combined all of the improvement from the previous 5 1/2 years, ridiculous number of medications and treatments and countless doctors, it was only a fraction of the relief I got from the protocol the MHNI doctors found for me.
So why am I still a chronic migraine sufferer? Pretty common question. The thing about migraine and all of the other headache disorders is that you are dealing with the most complex thing on the planet – the human brain. Brain chemistry changes CONSTANTLY. So to think that finding something that works for the moment is the same as finding a cure is just naive. What works now will hopefully work for a while. But it is unlikely that it will work indefinitely. For me, it was about two years before the efficacy of my drug protocol started to nose-dive. But when it did, it didn’t take long. It was excruciating. Both physically and emotionally. I just knew that I couldn’t go back to that level of pain every day again. And certainly not with the hours I was working. I was right. Something had to give. I was battling my HMO to allow me to go back to MHNI even though they were out of network while still trying to keep things going at home and at work. NOT sustainable. I started missing work. A lot of work. In fact, I used up all of my FMLA days. I had to take each day I missed without pay. FINALLY I got the go-ahead to go back to MHNI. I went on short-term disability, figured I’d be there for 3-4 weeks and would need another 3-4 to recover before coming back.
If only it were that simple. My second month as a patient at MHNI didn’t yield the incredible results the first one had. In fact, I was not better at all. Short-term turned to long-term disability. My financial situation deteriorated. My emotional state plummeted. I became essentially non-functional. If I got from my bed to the couch downstairs it was a big accomplishment. This went on for a couple of years. I became suicidal. I was treated at a trauma treatment center for three weeks. My emotional state improved while my physical state continued to deteriorate.
Then I moved. There were many factors that brought me from northern Virginia to central Florida, but the biggest thing (healthwise) that I got out of it was a new doctor who profoundly changed my outlook, my options, and delivered (to an extent) on promises of relief. I’ve been with him now for about two years. I’ve had several surgeries. I am better. I am not cured. I am not pain-free. But I am better. And more than that – I have hope. I often get the most amazed response to that statement. After more than 14 years of chronic pain, how can I actually be hopeful? Well here’s the thing…I had a surgery that did not exist when my condition began. And it has helped me. Not in the ways or to the extent that I was led to believe, but it did help. So why would I not assume that this incredibly complex science being explored by some of the most brilliant minds in the world would not continue to advance? It will. And I will continue to reap the benefits of that progress.
So to all of you out there at whatever stage of chronic migraine or cluster headache or whatever other disorder – hold on. Keep going. Find a good specialist and keep your expectations in check. Progress is possible and there is reason for hope. And for all of you out there who are “old hats” at this chronic pain thing – reach out. There are people who need you. None of us is alone. There are others – many others, who are going through the exact same thing as you. We deal with the same challenges, the same questions, the same stigma, the same need to not be alone in this battle.
So here’s to better science, less pain and many new connections!