The Day It All Went to Hell
Many of my articles are fact-based, sharing information with you rather than sharing my thoughts and emotions about my life with migraine. I do this because of a passion that education empowers patients to take control of their own migraine management. Yet, once in a while, life hits me hard. That’s when it’s important that I show the patient side of being a patient advocate. There is value in seeing a glimpse into my experience as a patient.
First, there was success.
Nothing is more satisfying than the opportunity to educate others about what it’s like to really live with migraine. When those listening have the power to create real solutions to improve our lives, the benefits are magnified. I recently had the opportunity to meet with a pharmaceutical company to share ideas on how they could help migraine patients — other than just producing more drugs. It felt good to travel, to advocate for other migraine patients, and to go on a solo adventure. I was feeling like the healthy version of myself more than I had in months. Ever mindful that travel presents migraine risks, I took extra precautions to limit my trigger exposure. That success produced an emotional high.
Just two days after returning home, I woke in the early morning hours with a migraine attack. While the attack itself didn’t discourage me, I was keenly aware that it took much longer to abort and the postdrome “hangover” was particularly intense. Normally, I would readily accept that I needed to take the day to recover and reduce my expectations. Yet there was an important family event I felt obliged to attend. I knew my family would understand if migraine kept me away. Still, I wanted to try.
I decided to take a shower and then evaluate my ability to get out for the day. Often a hot shower will snap me out of postdrome, so my strategy seemed reasonable. The shower did the trick. I felt invigorated, alert, and ready to take on the day. Looking back, the euphoria was a little too strong. Had I been more objective, I would have been suspicious of the rapid change in energy. Instead, I accepted the transformation as a gift and ran with it.
I had no idea that a migraine storm was brewing.
The next morning, I woke with a second migraine attack. This time, my abortive did not work as well. Mild symptoms continued throughout the day.
Sunday was a repeat of Saturday, so I took it easy, hoping the whole mess would blow over soon.
By Monday morning, I knew that breaking the cycle would require more aggressive measures. That’s when I broke out my rescue treatment protocol. This strategy has worked to keep me out of the emergency room for four years. I had no reason to believe it would fail, but it did.
By Tuesday morning, I had reached my limit. The migraine attack was still in full force and I had just exhausted every strategy available at home. Reluctantly, I called my headache specialist. I knew what he was going to say before he even spoke the words, “It’s time for the ER.” However, he went further by saying that because I had used more strategies than most patients, I would probably need to be admitted for infusion therapy in order to break the attack.
It only took one failed treatment in the ER for the doctor to order my admission. This was a true case of Status Migrainosus and having my own specialist in charge of my care was reassuring. I knew I was in good hands. Three days later that darn migraine attack finally broke and I was able to go home.
Trial and Error
I know you will all be curious, so I may as well share the details of what was tried.
The first step was to try an IV infusion of magnesium sulfate. When that failed, I was given the option to try a second round of Toradol, Benadryl, and Compazine. We all knew it had failed at home, but were hoping that the extra fluids and magnesium might make it work. Nothing changed. I could tell the ER doctor was disappointed she couldn’t help. We both knew that the next step was admission for more aggressive treatment. Waiting for an available bed took several hours. My only treatment option during the wait were my MigraCap and IceKap. Packing them in an insulated cooler was a smart move!
It was nearly evening when I was finally moved up to a private room. An hour later, a nurse administered IV Fentanyl which brought only temporary relief. Within an hour, the pain was back in full force. I knew that because it was a narcotic, it would only mask the pain. The trouble at this point was that I knew more than the nurses, and they had not been given any clear instructions from my headache specialist. The only orders they had were from the general hospital doctor — someone without specialized knowledge in headache medicine. Just before bedtime, I was given another round of Toradol, Benadryl, and Compazine which did little more than keep my pain level down to a dull roar.
Wednesday morning started looking up after a brief visit with my specialist. We agreed on the diagnosis – Status Migrainosus – and explored treatment options. After eliminating a few common ones that had either failed or were contraindicated, we decided to try a few rounds of Solu-Medrol. The back-up plan was an infusion of Thorazine at bedtime if the corticosteroids didn’t work.
It came as no surprise to me that we would have to resort to the Thorazine. Essentially, it produces a deep sleep that allows the brain to “reset.” The hope was that a deep, restorative sleep would allow the migraine attack to stop and I would wake up pain-free. At first, Thorazine simply worsened my restless leg syndrome. I could not sleep because I could not lie still. I walked the halls for awhile, but quickly became too lightheaded to continue safely. I paced the room until I finally fell asleep.
Thursday morning I was awakened by food service. Surprised, I did a quick head inventory to check for residual pain. Fortunately, there was no pain to be found. Lights and sounds were no longer magnified and that incessant ringing in my ears was gone. I was migraine-free for the first time in almost a week!
Don’t short-circuit the migraine postdrome. The next time a “hangover” wipes me out, I’m staying put in my cave until the darn thing passes on its own.