There is Help for the Chronic Daily Headache Sufferer: I'm Living Proof!!
Last updated: November 2021
When I was a young girl, I had a mild traumatic brain injury along with damage to my cervical spine (C1-C7) from being thrown off a horse. Within a few weeks to a month after that injury, I started experiencing a burning pain that began in my neck and shoulders and would eventually settle into my eyes and temples. Further complicating a diagnosis about the cause of my pain was a strong family history of migraine - so dr's naturally focused their treatment plans around migraine. No one thought much about the injury I sustained.
Early on the migraine attacks occurred 3-5 times a month and over time they gradually morphed into daily, chronic headaches. Pain was my constant companion; it was the first thing I felt when I woke up, and the last thing I felt before I drifted off to sleep. I lived in a personal misery only another chronic pain sufferer can understand. I did not look forward to anything; I simply endured life day after day. I pushed on through the pain, not that there was any real choice - it hurt whether I worked or stayed at home - there was no relief in sight.
One of the most frustrating things I had to endure however, we're doctors that would tell me that I caused my migraines to morph into the chronic daily variety by taking too many migraine medicines. I would gently remind them that the chronic migraines started well before Midrin, Imitrex or any other migraine meds were made available to me. I was allergic to aspirin and Ibuprophen from a very young age so my migraine attacks were primarily left untreated except for ice therapy that I discovered out of sheer desperation.
Every day was filled with pain at some level but when the pain would elevate in my eyes, it flared well above a 7/8 on the pain scale and I had difficulty seeing, thinking, or bearing it; the pain was so severe and unrelenting that it caused me to vomit, cry, and eventually plunge into a deep depression that would lead me to consider ending my life. I felt that if an animal was subjected to as much pain as I was, it would be mercifully euthanized and put out of its misery. Why couldn't I be afforded the same relief? I prayed every day that God would take away the pain, guide my doctors to find something that could be fixed that would 'cure' the pain, or if that wasn't possible, I prayed God would just let me die.
I spent years (a literal lifetime) going to every head pain clinic in the country and tried every migraine therapy available for both preventive and acute attacks, all with little to no relief. I had excellent care, but the pain devoured my life and became my obsession. I scoured the Internet for news of any therapy that might offer relief. I would bring every bit of research into my doctors and we would try it all. Chiropractors, acupuncture, physical therapy, stretching, neck exercises, meditation, TENS, nerve blocks, medication, aromatherapy, hormone therapy, vitamin therapy, changes in diet, exercise, and lifestyle (I no longer drank beer, wine, or alcohol), even surgery. I begged my GYN for a hysterectomy as I was convinced at one point that hormones were the root of my suffering. Nothing worked - the pain was relentless.
For 35 years I endured this pain, bouncing from neurologists to head pain clinics, to traditional pain clinics. Some were extremely compassionate and kind while others were a nightmare. I went to the ER only a handful of times over the years because the way I was treated there was so inconsistent. Sometimes I would get immediate help from an ER doc that would treat my pain and vomiting because the sheer agony I was going through was entirely evident. However, more often than not, I spent hours waiting for care - all the while vomiting - just because a doctor was worried I might be an addict looking for drugs. Now I was not only in pain, I was also humiliated as well. I knew if I presented to the ER with bleeding, I'd be treated. But pain? No one can "see" or "feel" someone else's pain so it was easy to ignore.
The absolute worst experience I had was with the medical director from a well respected academic hospital pain clinic in Northern California. He refused to believe my pain was more than a "simple headache" and accused me of seeking pain meds right in front of a medical student. He then discharged me from the clinic while I cried like a baby. I was so humiliated it took me years to get enough courage to ask for help again.
When I finally went back for help I found the most amazing team of doctors - this time in San Francisco where I'd recently moved to take a new job. I don't even recall how I found them; I swear there was some divine intervention at play. In any event the greatest, sweetest, most compassionate and caring Internal Medicine doctor connected me with an anesthesiologist that specialized in severe and unrelenting pain. Much to my surprise and joy, he was just as kind and compassionate as the Internal Medicine doctor! I told him right from the 1st appointment that I was vehemently opposed to pain meds b/c they never helped me long term and that I had traumatic experiences going down that path previously.
After several visits with this new pain doctor and a few trials and errors of different treatments, he suggested an 8 hr ketamine infusion. I never heard of ketamine; with all of the research I did, I couldn't believe there was something I hadn't heard of or tried. I now know ketamine is somewhat controversial but it made me go from 'no quality of life' to real relief and freedom from the pain; for the 1st time in my life I have control over the pain!!
I think the "burning" nature of the pain made my doctor suspect of the RSD-like features of my pain which ketamine is generally used for, as well as the fact that I still occasionally (but rarely) get swelling in my neck. However, I can't stress enough the importance of using a diary to track your pain. I use the free app "My Pain Diary" and I believe it made all of the difference in the world!
Previously, I never had a tool that I could share with my doctor that captured the objective nature of my misery; the weather, the time, the type of pain, potential triggers, what I ate, what I used to try to ease the pain, the severity and frequency of attacks - this information gave me the power to get to a real solution as opposed to my previous experience of only being able to tell doctors that the pain was excruciating every day. Special thank-you to Damon Lynn the developer of "My Pain Diary" app.
There is help for your pain; don't give up and don't let bad doctors dictate what you do. If you're not getting the proper treatment, find another - don't waste time. If a doctor tells you to try something and come back in 4-6 months, dump him because he just doesn't get it. I'm living proof that you can get relief! Be diligent, be your own advocate, and don't settle for anything less than the exceptional care you deserve!
Are the family and friends you will be seeing this holiday season understanding about migraine?