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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:

Prescription medication

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • sarahblankenship
    3 months ago

    I have fibromyalgia and chronic migraine, and trying to find treatment for one aggravates the other. My neuro recently told me that her tough migraine patients all have a comorbid condition like fibro. After losing 4 jobs in 5 years due to chronic daily migraines, she has convinced me that I need to apply for disability.
    Also, for what it’s worth, my youngest daughter has extremely sensitive skin. We couldn’t find anything, any sort of lotion that would help her “lizard skin”. Vaseline even broke her out. Out of desperation and sleepless nights from her crying from itching and pain, I basically basted her from head to toe with canola oil. It helped. I have a couple of designated baby washcloths that I use, because it never fully washes out. We’ve been doing this for about 12 years now with various oils, and canola works best for her.

  • squeak
    3 months ago

    Hi! For those of you that have major issues with dry skin and not being able to use moisturizers because of smell, ingredients, etc. PLEASE check out CeraVe Moisturizing Cream! MANY smells trigger migraines for me (I have a hyper-sensative nose, too, ugh), drives me nuts, and of the (very) few moisturizers that are fragrance free, those almost all have a slinky, oily feel to them. I tried CeraVe when they were giving out “samples” at Costco. I was literally shocked. It helps my skin MASSIVELY and no smell triggers or ingredient triggers or anything! My skin is also stupidly sensitive (I’m super pale with freckles) and it works perfectly fine. It was created by dermatologists and even the National Eczema Association backs it.

    Sometimes Bed, Bath and Beyond have travel sizes so you can try it out. One container that’s 19 ounces is $15 on Amazon, but it lasts for EONS. And keep your eyes peeled at Costco. They bring back CeraVe every few months (in a BIG container) for crazy cheap. I even got mine with a coupon (I think it’s 28 oz.?) for $6!!! I’m giving a link here so you can read the back and the ingredients in case it might help someone here.

    https://www.amazon.com/CeraVe-Moisturizing-Cream-Daily-Moisturizer/dp/B00TTD9BRC/ref=sr_1_12?crid=LDO7DCZQI9UA&keywords=cetaphil+moisturizer&qid=1554337547&s=gateway&sprefix=ceta%2Caps%2C197&sr=8-12

  • Momster88
    3 months ago

    I have Sjogren’s Syndrome. And yes my eyes & mouth are very dry as is my vagina. I took Plaquenil for 22 years, suffered no eye damage thank goodness. My new rheumatologist took me off Plaquenil & told me to keep moving to manage pain. I do live in a humid area and I can tell you the high pollen counts here are very aggravating to a migraineur.
    I’m very active and feel very positive most days. I know it’s hard for us to manage those hard days but please stay positive and strong.
    Best wishes!

  • cherik
    3 months ago

    Thanks for sharing your experience. This struck home with me, both as a patient and as a parent. Personally, I’m also facing a likely primary or secondary Sjogren’s diagnosis & have just been diagnosed with fibromyalgia. I wonder if you’ve been evaluated for fibromyalgia. It’s a very common co-diagnosis with autoimmune diseases as I’ve now learned. Is your B12 deficiency caused by pernicious anemia, which is also autoimmune? Typically fibromyalgia contributes to migraine symptoms. No fair if you already have migraines – mine have gone from lifelong episodic to chronic & debilitating as my health has worsened.

    As a parent, my eldest has migraine with aura as well as endometriosis. Most common medical management for endometriosis? Hormonal birth control, which is strongly contraindicated for migraine with aura. Most gynecologists are less than knowledgeable about migraine & we spend as much time educating her caregivers as we do receiving care. We are lucky to be located near several surgeons exploring new treatment options for endometriosis as well as a university treatment center for both endometriosis and pediatric migraine, but both my child and I have had to educate ourselves in order to avoid treatment recommendations that could seriously impact her health.

    Have you worked with a dermatologist on finding skin care options? Mine has been great & fully agrees that most over the counter commercial products (not just moisturizer – any bath & body care!) are inappropriate for those of us with these chronic health issues (I also have eczema so have been struggling with skin care since childhood- some days I feel like the only things my skin can handle are organic cotton and purified water!). Extreme sensitivity like you describe can also be a symptom of fibromyalgia, as I’ve learned, and my tolerance of any odors has become nonexistent. Organic sweet almond oil applied to damp skin is my go-to moisturizer, but it’s not strong enough for eczema or Sjogren’s dryness, so I rotate a half dozen prescription creams to reduce building up a sensitivity. There are products out there, but you’ll likely need a lot of patience along with trial and error; a good dermatologist will have samples that are truly fragrance free & preservative free so less likely to aggravate your migraines.

    Good luck and thank you. It’s helpful to know others are struggling along this same journey. Sometimes feels like we’re facing this alone.

  • DinaMay
    3 months ago

    I’ve been thinking about you since I read your post a day or 2 ago and wondering if I had anything helpful to say. Feel free to disregard my comment if it isn’t helpful.

    I have lupus with Sjogren’s and Renaud’s along with migraines and assorted other chronic conditions, so I have some experience with juggling treatments. A new diagnosis usually means I drop some balls for a time before I work out a new balance. But ain’t nothin’ killed me yet and that means there’s still hope. You sound like you’re running very low on hope. Let me see if I can give you some.

    Dry skin can be treated with lotions. You say lotions can trigger migraines. In my case, only certain ingredients in many lotions are the culprit. Anything with a fragrance will give me grief but there are fragrance free ones. Another common problem is with a family of molecules with names that end with isothiazolinone. This is in lotions, soaps, shampoos, makeup, and so on. It’s a little harder to avoid but it can be done. There are even support groups for people who are allergic to it. My point is that an in-depth discussion with your doctor may lead to something that will actually work for you aside from Vaseline.

    But don’t be too quick to toss Vaseline. It seems to be absolutely the least likely to offend, according to the dozen or so doctors I’ve consulted over the years about skin probs. The likelihood that it will turn rogue and trigger migraines is extremely small.

    But besides Vaseline there are other possible oils as others have suggested. There are lots of blogs that provide recipes for making your own soaps, lotions, shampoos, and whatnot out of generally innocuous ingredients. I stay away from things called “essential oils” but that’s just me.

    Dry mouth can be treated with a spray like Biotene. I don’t like the spray, personally. This same company makes a mouthwash with I think is slightly better. Or you can carry water with you and just take a sip every now and then. Yes, you have to pee a lot. But the water actually helps your skin as well as your mouth. I sometimes suck on cough drops, sugar free of course. This is hard on the inside of my mouth (one of those lupus things). So I sip water more often, relying on cough drops when water is inconvenient. But it doesn’t have to be cough drops. Sugar free hard candy works. So does gum.

    If one treatment triggers migraines or causes other bothersome side effects, certainly you won’t want to continue it. But don’t borrow trouble from tomorrow – just because Plaquenil CAN harm your eyes doesn’t mean it definitely will. I took Plaquenil for about 4 years without any such damage. I saw an ophthalmologist before starting Plaquenil, to establish what’s normal for my eyes. Then periodically I would go back to have my eyes checked. It’s very possible you would dodge that same bullet if you were to take Plaquenil, too.

    The fact that you expect the worst for each type of treatments suggests maybe you’re suffering from a little depression or anxiety or both. I know I tend that way. And I’ve gone to various therapists to learn better ways of coping. I hope you aren’t offended by my suggestion you see one too.

    There’s no magic solution to the problem of multiple diagnoses. But there is hope. You just have to keep juggling.

  • Lind3aA
    3 months ago

    Hormonal shifts are a trigger for me. As a breast cancer survivor, I am on oral chemo for the next 10 years, which promises to be an extended struggle. I would be interested in seeing more discussion of this.

  • LisaMarie246
    3 months ago

    I feel your pain. I have chronic migraine, major depression, diabetes type 2, weight gain and am stuck in a MAJOR loop.

    Exercise would likely help depression, weight gain, and blood sugars, but it triggers a migraine which is how I gained weight in the first place thus triggering the genetic predisposition to diabetes type 2 and deepening depression.

    Weight gain, being in pain all the time, and divorce have also added to depression. Being depressed triggers migraine as does low/high blood sugar. Being depressed makes me want to eat junk….UGH!!!

    Can I just stay in bed?

  • Luna
    3 months ago

    Navigating the minefields of our lives.

    I’ve been having really dry cracked skin especially on my finger tips. Am not able to use anything scented or with a natural smell. Have been having some success with avocado oil and/or hemp oil. They don’t feel to me as greasy as the other oils I’ve tried.

    Always enjoy your articles, Kerrie. Did laugh to myself about B12 levels. Mine are too high. Didn’t realize how much b12 was in the b complex I take. Haven’t decided what to do now about getting the other B’s I need.

  • darnapar
    3 months ago

    Off topic for author, but for hand and foot skin cracking I use the super glue with the brush applicator. One make sure you have your own bottle that the family doesn’t steal for home projects. Make sure the cracked area is clean!! & dry!!! I use a brand new towel to not spread germs. Then paint the super glue on and the cracks heal under it. The initial smell dissipates in moments and I make sure the room is well ventilated. I have run this method by several drs, including dermatologists. A few admitted to doing the same as hand washing can case severe dryness and cracking.

  • Tom Picerno moderator
    3 months ago

    Thank you for writing such an amazing article. I can only imagine how much of a challenge it is to manage all those migraine triggers and to then find out you could potentially have another illness that will make migraine worse. I applaud your courage as you move forward I your journey. Wishing you all the best!

  • glassmind
    3 months ago

    Thank you for sharing.

    I can relate as someone with multiple chronic conditions and also unable to pursue treatments for a condition as it worsens another.

    On a small note: I find pure oil (olive or coconut, organic) is the only emollient my skin will tolerate that does not trigger migraine. It is a hassle to wait for the oil to completely “dry” before getting dressed, but it is worth it. I have fragile skin, am prone to uticaria and live in a dry climate. Maybe an oil would work for you?

    Thank you again for bringing awareness to the struggle faced when one has multiple conditions. May some therapy be availible to bring you relief.

  • JanetH
    3 months ago

    I was thinking when I read the piece, “I wonder if coconut oil might help…” I can use Curel right now, since it’s basically unscented, but I’m sure you’ve tried everything. As regards vaginal dryness: I read somewhere recently a suggestion to use a small amount of coconut oil externally and just inside the vagina a few times/week. I’m keeping the idea tucked away. So far, I’m having good luck with Premarin.

  • glassmind
    3 months ago

    Use cautiin with vegetable oils for vaginal dryness. While some couples tolerate thier use others experience a change in pH balance and subsequent issues. If used only as a temporary treatment to facilitate intimacy, a gentle wash for all partners is recommended to restore balance if the oils cause pH changes. Other people can tolerate daily natural oils use on the entire body. There are many water-based libricants availible at chemists and retailers also, which are generally tolerated also.

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