Fumbling Around in the Dark
On November 20, lying in bed on a dreary day with a migraine no medicine had yet vanquished, I sent a text to John, which is often our primary means of communication. In this case he was downstairs with the kids, and I was trying to move my body as little as possible. “This is the time of the month I have been needing to go to the ER,” I typed. “Last time was Oct 20 and the time before Sept 20.” The nurse practitioner had remarked upon it, noting my absence of a menstrual cycle, and I had mentioned the full moon.
But when my phone soon gently vibrated the response was “You did just go to the ER around a week ago though.” I felt the unpleasant and unfortunately familiar shock of a huge memory lapse like a lightning bolt.
I did?” I could feel my heart rate increasing. “Are you sure?”
Coming to terms with forgetting an entire life event
No matter the reason, it is a terrifying feeling to realize you have completely forgotten an event, a chunk of time, or a task you promised to do. And there is quite a difference between losing some details and what feels very nearly like a complete blackout, especially when it is something as major as a recent ER visit. John replied that he was sure, and despite the undulating spots in my field of vision I scrolled back through all of my texts searching for evidence. His statement did ring true, and I knew the current pain I was in was part of my lack of acuity, but it was very disconcerting. I finally found a series of texts I'd exchanged with a friend on the 14th, asking her to pick me up to take me to the hospital because John wouldn't be home from campus for hours. And my mom confirmed she'd come to get me there when I was ready to come home. With those prompts other details came back, particularly that I had requested and received a rare second dose of narcotic pain medication, which undoubtedly helped contribute to the memory loss.
Using technology to retrace your steps
Text messages are not only a convenient means of communication, but a great way to retrieve lost moments.
November was a bad month. The results of the presidential election hit me hard, and I suffered as much from depression as I did from migraines. I spent many days huddled in bed, cradled by clouds of blankets protecting me from the outside world. Because of the subsequent increase in medication, a myriad of forces contributed to the empty spaces in my recall.
Memory loss, both short and long term, are reported anecdotally from many with chronic illness. From what I can determine, the actual cause is mysterious and varies person to person, episode to episode. During my worst bout of serious memory issues, in 2014, I had posted a question about it in one of my Facebook support groups, asking to hear from those who had similar experiences, and it was my most commented-on post ever. Most who responded were those who, like me, had been suffering their whole lives. Most were chronic. We wondered whether it was our medications, either prophylactic or acute, causing the gaps. We wondered whether months and years of pain caused our brains to compensate and cover much of that time with blissful nothingness as a form of protection, similar to repressed traumatic experiences. Our most serious worry was that the newly-reported white brain lesions found in the MRIs of those with long term migraine disease were actually causing damage. We wondered whether it would only continue to get worse.
How migraine hijacked our vacation
That was the year that John and I took our trip to San Francisco, and upon landing I began to experience an extremely severe migraine that I treated with more medication than I care to remember, not that I really can anyway, because I lost literally half of our time there. We were crashing at a friend's in the Lower Haight, but because he had little space and a roommate the lack of privacy had become intolerable to me. We'd charged a room at a Days Inn near the ocean and took a cab to get there rather than public transportation because I was in such bad shape. I remember absolutely none of that, did not even remember just three days later. John told me the cab driver assumed I was drunk and glared at John accusingly in the rearview as I slumped over in my seat and moaned. He said that once in the hotel room I cried and sobbed to immediately return home. Fortunately, I did recover and was able to enjoy walking on the Pacific sand and gazing up into the leafy towers of Redwoods, but that loss of time was horrifying to me and I hoped to never have another experience like it.
Searching for answers
I researched as much as I could. My headache specialist refused to do an MRI specifically for the purpose of looking for white lesions, and said even if they were there they would not cause memory loss. I focused on one of my daily medications, which I took for depression, lured by the commercial stating “Depression hurts. Cymbalta can help.” SNRIs seemed to have some good results helping chronic pain patients, so I had asked for a prescription, and examining the years since I had switched from Zoloft to Cymbalta it became clear my migraines and my depression had become worse, and I'd began to suffer memory loss, which had the effect of causing me to not even realize how much more I was suffering.
Finding acceptance with my new "normal"
It took me over a year to taper off of Cymbalta. Some patients have an extremely difficult time ending their use of that medication because of discontinuation syndrome, which was under-reported by the FDA. I do know a couple of people personally who are greatly assisted by Cymbalta, and of course there are those who have horrible side effects from my preferred depression medication, Zoloft; side effects and success rates vary so greatly person to person. I also don't know for sure that Cymbalta was causing the memory loss. It may have contributed, or had nothing to do with it at all. And that not knowing is such a familiar feeling to anyone with chronic illness, as so much of what we do is fumbling around in the dark, doing our own research, following our own instincts.
So I did find it shocking to experience significant memory loss again recently when it was a problem I thought I'd conquered. I expect to always have some memory issues, but not the type to cause the loss of an entire ER visit. And here, today, I don't have any answers. I suspect it is the increased pain and depression of the last month, but I don't know. I can only hope this has been an anomaly, and is not, once again, my new “normal".
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