Struggling for Answers After Lumbar Puncture: A Frustrated Journey
I’m a 31-year-old woman with no significant medical history, apart from my daily dose of Lexapro at 5mg. In October 2025, I experienced an agonizing episode that I can only describe as the worst migraine of my life. Accompanied by intense back pain, I tried to endure the discomfort but ultimately had to seek emergency care. Following a CT scan of my head and receiving a treatment cocktail for migraines, I was discharged. The ensuing days were unbearable; I couldn’t eat, sleep, or even move. My ability to care for my three children diminished, and I couldn’t drive. My mother had to step in and take care of me. I was bedridden for an entire week, plagued by nausea and discomfort. When relief didn’t come, I returned to the hospital in desperation, requesting a lumbar puncture. My request was denied once more, and yet again I left with just a migraine remedy. Frustrated, I visited my primary care physician and expressed my concerns, convinced that there was something truly wrong with my health. She prescribed Lexapro, attributing my symptoms to anxiety and a negative mindset. After a Toradol injection and a course of steroids yielded no results, I sought relief through various means, including professional massages, dry needling, and chiropractic treatments—all without effect. Eventually, I adapted to the constant pain, making the effort to get up and fulfill my work responsibilities for the sake of my children. Yet, even the slightest movements like coughing or sneezing felt like I was subjecting my brain to a boiling point. My headaches plagued me, persisting from the moment I awoke until I finally succumbed to sleep. There were mornings when I couldn’t even drive my kids to school due to the excruciating pain that made turning my neck an impossible task, sending shockwaves of discomfort through my spine. I insisted my PCP refer me to a neurologist and was able to see him before Christmas. Determined to get to the bottom of my situation, I demanded further testing. He ordered an MRI/MRV, which thankfully came back normal. Believing I might have issues with cerebrospinal fluid pressure, he then suggested a lumbar puncture. The procedure turned out to be quite challenging; the doctors struggled to extract any CSF, and when they finally succeeded, my opening pressure was measured at 9. My total protein level was recorded at 107, which is notably high, but what this means remains a mystery to the medical team. Now I find myself at a standstill, with no additional tests recommended. The anxiety of not knowing what’s wrong weighs heavily on me. I’m scared and suffering, yearning for clarity so that I might find a solution. I apologize for the lengthy narrative; I’m simply an overwhelmed mother feeling lost in this difficult journey.
Answers (1)
2/4/2026, 11:01:00 PM
OpenHealth AI
I'm sorry to hear about the challenging journey you've been on. It's completely understandable to feel overwhelmed given your persistent pain and the uncertainty around your symptoms. You’ve taken important steps to seek help and get tests done, which is commendable. Let’s break down your situation and explore some practical next steps that might help.
Main Points:
- Your experiences suggest complex migraine issues and possible cerebrospinal fluid abnormalities.
- Normal MRI/MRV results are reassuring, but the elevated protein level in your lumbar puncture (107 mg/dL) is noteworthy and requires further evaluation.
- It's important to both manage your anxiety and seek clarity on your symptoms while exploring potential diagnoses.
Explanation:
Your severe headaches, back pain, and the elevated protein level in your cerebrospinal fluid can occur for several reasons. Elevated protein levels can indicate inflammation or injury to the nervous system but are not specific to one condition. In tandem with normal imaging, this could suggest a range of possibilities, from persistent migraine-related issues to rarer conditions.
Given your circumstances, it's understandable to seek clarity for peace of mind and effective treatment. Anxiety about this unknown can also contribute to physical sensations of pain, so attending to both aspects is crucial.
Next Steps:
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Track Your Symptoms: Start keeping a detailed log of your headaches, noting their frequency, intensity, triggers, and how they respond to treatments. This information can provide valuable insights for your providers in future appointments.
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Coordinate with Your Neurologist: Given the elevated protein levels and your ongoing symptoms, reach out to your neurologist to discuss further testing options, such as:
- Repeat Lumbar Puncture: To monitor changes in cerebrospinal fluid (CSF) levels or conduct additional analyses.
- Blood Tests: To explore potential autoimmune conditions or thyroid issues, especially since your symptoms are chronic.
- Referrals to Rheumatologists: If systemic issues are suspected, another specialist might provide additional perspectives.
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Explore Migraine Management: Work with your neurologist to discuss preventive treatments for your migraines, which might include medications beyond what you've tried. Lifestyle modifications—like stress management techniques, hydration, and regular sleep—can also be impactful.
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Psychological Support: Consider seeking support from a mental health professional, especially someone experienced with chronic pain. Therapy can help manage anxiety and develop coping strategies tailored to your situation.
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Family Support: Don’t hesitate to lean on family or friends. It appears your mother has been a significant source of support, and maintaining this network can provide emotional respite as you continue to navigate your health challenges.
Your fight for clarity and well-being is admirable, and I encourage you to keep advocating for yourself. Let me know if you have more specific questions or if you'd like to discuss any particular aspect further.
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