A Heartrending Dilemma: When Treating Another Diagnosis Worsens Migraine Attacks
It took all the strength I possess to wait until the doctor left the room before I burst into tears. He had given me a tentative diagnosis of mild Sjogren’s syndrome. To him, a rheumatologist, this wasn’t a terrible diagnosis—it’s not fatal, doesn’t cause joint damage (just pain), and the symptoms can be managed in mild cases. To me, it was devastating. What he didn’t realize is that any treatment for Sjogren’s is almost impossible for me because of migraine.
A rundown of my options for treating Sjogren’s and what they mean for migraine:
Plaquenil (hydroxychloroquine) is the one drug used for systemic treatment of Sjogren’s syndrome. It can cause retinal damage. Because the doctor deemed my symptoms mild, he didn’t think Plaquenil was a good choice for me. While I agree in theory, he was missing a crucial piece of information: almost all forms of symptom management would worsen my migraine attacks. In my case, prescription medication actually looks like the best option despite the risk to my vision. And, of course, there was always the risk it could be a migraine trigger (because so many things are).
Joint pain is managed with painkillers, which I can’t take because of migraine
I went to the rheumatologist for joint pain. It began in the fall grew steadily worse. In Sjogren’s, joint pain is generally managed with NSAIDs or other painkillers. Since having medication overuse headache in 2016, I can no longer take more than two painkillers within a 10-day period without worsening my migraine attacks.
Dry skin is managed with lotion, which is a migraine trigger for me
I have yet to find an oil or lotion that does not trigger migraine attacks for me. Same goes for lip balms. Vaseline is the only thing that doesn’t seem to be a trigger. I’m not thrilled at the prospect of slathering Vaseline all over my body and, more importantly, I have a history of non-triggers becoming triggers over time. Overusing Vaseline puts me at risk of not being able to use any dry skin treatment without triggering a migraine attack.
Vaginal dryness, another symptom, is also treated with creams. There’s a chance those wouldn’t be a trigger since the area is small, but that’s no guarantee.
Dry mouth is managed with a mouth spray, which is almost certainly migraine trigger for me
I cannot consume anything but water without triggering a migraine attack. That sounds hyperbolic. It’s not. I made baked beans recently and accidentally splashed some sauce in my mouth when I was stirring. It was a migraine trigger. Cough drops? Migraine trigger. Sore throat spray? Ditto. Even sparkling mineral water is a migraine trigger. I haven’t tried mouth spray, but I don’t have much hope for it.
All symptoms can be managed with humidity, which is a migraine trigger for me
My husband has itchy skin at night, so we tried a humidifier in the bedroom. I woke up with a migraine attack every day for a week. We stopped using the humidifier and my migraine attacks remitted. Thinking the plastic in the humidifier might be the trigger, I tried another brand. Same result. I tried a third. Same result. My doctor figured out the change in humidity is likely the trigger. It makes sense—I always feel worse the first day I travel to a place with high humidity, then am better by the next day.
I could theoretically move to a place with higher humidity, since I live in the desert. However, I moved here because cloudy skies are a migraine trigger for me. Moving to a place with higher humidity would also come with more volatile weather, which will certainly make my migraine attacks worse.
Trapped by migraine
With this diagnosis came a feeling of utter helplessness. I manage the emotional onslaught of migraine by researching treatments and always having another on my list of things to try. Without being able to manage the symptoms of Sjogren’s syndrome, I imagined a life of joint pain; dry, itchy, cracked skin; and peeing constantly because I have to drink so much water to keep my mouth moist. Barring a complete reversal in my migraine attacks post-menopause or with the CGRP antibodies that are on the market, I could see no way to treat my symptoms.
Migraine dictates what happens in so many areas of my life. The thought that it could keep me from treating another illness—that it could cause me to have pain in other parts of my body—is demoralizing. With this diagnosis, I felt like I had to prioritize one illness over the other. I was heartbroken and furious.
After my aunt died of a painful degenerative disease last September, I began to worry that I would develop an illness or chronic pain that could only be treated with painkillers. That is, a condition that could only be treated in a way that would worsen my migraine attacks. I cried in my doctor’s office as I realized this fear appeared to be coming true.
Postscript: My test for Sjogren’s syndrome was negative. While 40% of people get false negatives, I also discovered I have a vitamin B12 deficiency, which can cause the same symptoms as Sjogren’s. Taking a B12 supplement has improved my symptoms dramatically, though it will take a while before determining if that solves the problem or if I also have Sjogren's.
How much has your migraine disease changed or evolved over time?