Navigating the Complex Journey of Chronic Migraines and Autoimmune Symptoms
At 29 years old, standing 5 feet tall and weighing 105 pounds, I've been juggling several medical diagnoses including chronic migraines, unexplained eye muscle atrophy that leads to blurred vision, mixed-type asthma, hypermobility syndrome, endometriosis, thrombophilia, chronic gastritis (which showed improvement with a gluten-free diet), and previously debilitating insomnia—significantly improved after septoplasty and turbinoplasty treatments in late 2024. I also manage ADHD and autism, which have been relatively stable on Wellbutrin. Ten years ago, I began experiencing migraines that started off sporadic, but escalated in frequency and severity in 2022. These episodes became frequent, often occurring every other day for a full 24 hours, followed by a postdrome day, leading to a cycle of relentless migraines. In 2022, my neurologist introduced Botox injections, which were remarkably effective for about a year. However, after starting Visanne to address escalating endometriosis symptoms, I began suffering from hemiplegic migraines, a new and far more debilitating type. The severity of my migraines rendered me unable to work or study; I found myself bedridden, struggling to eat or drink. Initially, the endometriosis pain subsided, but my gynecologist urged patience for a few months before exploring alternative treatments. Unfortunately, by the third month, I was frequently visiting the ER due to escalating symptoms, and by the fourth month, I self-discontinued the medication. It not only hindered my mobility but also left me feeling as though I were losing my eyesight, compounded with significant joint pain. I had previously tried Mirena, which resulted in unbearable pain and cramping, and I often push through treatments despite severe side effects due to trust in my medical providers. Regrettably, the migraines persisted. I was prescribed Ajovy, which offered initial relief until my joint pain and fatigue intensified. Additionally, I experienced respiratory issues despite ongoing asthma management, characterized by swelling in my tongue and throat. Given the limited options available under my insurance, my neurologist and I decided to endure the situation while I supplemented with antihistamines. After nine months, I experienced a severe adverse reaction to Ajovy, prompting a course of prednisone and a referral to an immunologist. Fortunately, atogepant recently became an option covered by my insurance, and I have been on it for about three months. The notable side effects have included severe constipation and nausea, yet I find ways to cope because the debilitating nature of my migraines leaves me feeling hopeless. During this chaotic time, tests indicated positive dsDNA IgG, ANA, and PM/Scl-75 antibodies, which my rheumatologist suggested could be attributed to Ajovy, expressing optimism that an antidepressant might alleviate my joint pain. I held onto that hope, but my condition continued to deteriorate. It’s been four months since I stopped Ajovy. When I last received the injection, I was on prednisone, which surprisingly made me feel remarkably healthy, better than I had in a long time—my energy was up, stomach issues resolved, and sleep was restorative. Shortly thereafter, I began atogepant, seeing some decrease in migraine intensity. As I prepared for my visit with the immunologist, further testing revealed positivity for NXP2 and PM/Scl-75 antibodies, alongside an elevated ESR, which had previously normalized on steroids but now rested at 25—still within manageable bounds. A visit to a new rheumatologist led to a clear yet unanticipated diagnosis of hypermobility (with a Beighton score of 7/9), attributing my joint pain to this condition. In reviewing the diagnostic criteria for hEDS, I noted that several symptoms resonated with me, despite not considering myself hypermobile since I cannot perform the thumb test. However, the rheumatologist insisted that my chronic migraines could lead to the presence of myositis antibodies and ongoing inflammation, confirming that I was experiencing tangible muscle weakness. I've grappled with weakened grip strength and joint stiffness, especially when swallowing, which the doctor suggested might stem from functional neurological disorder (FND)—a potential psychological response to stress. He acknowledged that he was only offering a perspective from his expertise as a neurologist. Notably, I was cautioned against psychological dependence on steroids after long-term use alleviated my symptoms, transforming them into what felt like a miracle drug. I had taken methylprednisone every other day since my Ajovy reaction, which cleared my mind and abated stomach and migraine pain. Post-treatment reflections led me to hesitate in repeating that experience, questioning if my worsening symptoms were a consequence of steroid use. Post-Ajovy, I've developed a persistent itchy rash beneath my eyes, resembling a small triangular patch on my cheeks, which flared up with my migraines. Though it receded while on steroids, it's become increasingly visible, bringing with it discomfort and uncertainty. I am yet to discover substantial information linking migraines with these antibodies and symptoms, which has compounded my concern, especially after initially feeling optimistic about improvement. The rheumatologist noted that I could either experience sudden improvement or have to reconcile with the reality of my health challenges. I'm striving to accept this perspective, but I'm struggling to feel reassured given my current state. I genuinely wish to believe that this tumultuous situation stems solely from my migraines and that my health will eventually improve, putting any psychological effects of steroid use behind me.
Answers (1)
3/20/2025, 9:01:08 PM
OpenHealth AI
I'm truly sorry to hear about the extensive challenges you’ve been navigating with your health. Managing multiple complex conditions like chronic migraines, autoimmune symptoms, and gastrointestinal issues can feel overwhelming, but it’s important to remember that you’re taking steps to find clarity and relief.
Main Points:
- Complex Interactions: Your health conditions and treatments may be interrelated, which can contribute to the severity of your symptoms.
- Current Challenges: The combination of migraines, diagnosis of hypermobility syndrome, and reactions to treatments is understandably distressing.
- Management Strategy: Focus on managing migraine prevention while addressing the side effects of your treatments, as well as monitoring new symptoms.
Explanation:
Chronic migraines, especially when complicated by conditions like hypermobility syndrome and autoimmune symptoms, can create a cycle that is hard to break. Migraines often lead to stress and discomfort that can exacerbate other health issues, so taking a comprehensive approach can be beneficial.
The presence of specific antibodies (like those mentioned) can indicate underlying autoimmune processes. While the relief you experienced from steroids is noteworthy, relying on them long-term can lead to complications, such as dependency or exacerbation of underlying issues. The itchy rash and gastrointestinal symptoms you're experiencing are concerning but not uncommon with treatments and underlying conditions.
Next Steps:
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Track Symptoms: Maintain a detailed diary of your migraines, joint pain, gastrointestinal symptoms, and any other new or worsened symptoms. This will help both you and your healthcare team identify patterns and triggers.
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Lifestyle Adjustments:
- Diet: Continue with a gluten-free diet if it has helped your gastritis. Pay attention to any other potential food sensitivities (like dairy, eggs, etc.).
- Hydration and Nutrition: Ensure you stay well-hydrated and maintain a balanced diet to support overall health, especially as one of your medications has caused nausea.
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Medication Review: Discuss your current medications with your healthcare provider. It may be worthwhile to evaluate the dosage of atogepant or to explore adjunctive treatments for nausea and constipation. If you continue to have adverse effects, a different medication for migraine prevention may be necessary.
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Physical Therapy: Since hypermobility can lead to joint pain, consider physical therapy. A specialized therapist can provide exercises that strengthen your muscles without straining your joints, which may improve your overall mobility and reduce pain.
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Psychological Support: Given the stress from this journey, working with a psychologist or counselor who understands chronic illness could help in managing the psychological impacts, assisting you in coping with the fears and uncertainties that arise.
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Regular Follow-ups: Regular visits with your neurologist and rheumatologist can help monitor the progress of both your migraines and autoimmune symptoms. Stay proactive about expressing your changes and concerns during these visits.
Your journey is complex, but each small step you take is essential. It's natural to feel unsure, but engaging actively in your health and treatment options can gradually lead to improvement. Please remember that you’re not alone, and seeking support—both medical and emotional—can make a significant difference. If you need further assistance or wish to discuss specific management strategies, feel free to ask.
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