Over a Year of Intense Dizziness Without Explanation
Hello all, I’m reaching out to share my experience with a **crippling dizziness issue** that has persisted for over a year now. Despite consulting several medical professionals, I remain without a definitive diagnosis. I’m interested to learn if anyone else has encountered something similar. Here’s a summary of my symptoms and medical background: * **Primary symptom:** Constant, severe dizziness that feels overwhelming (not mild—it’s as if my entire body is failing). * **Duration:** This condition has been ongoing for approximately one year, with no respite. My current episode has continued since July. * **Episodes:** * This marks my third severe episode within a single year. * Each attack begins suddenly with profound fatigue, leading me to sleep for nearly the entirety of a week—I struggle to keep my eyes open. * Although the fatigue lessens after a while, the dizziness and imbalance linger for several months. * During these incidents, it feels as if my body is collapsing, severely impacting my daily functioning. * **Characteristics of dizziness:** * I experience both spinning vertigo and an ongoing sense of swaying (disequilibrium). * While walking, halting suddenly causes a sensation as if the ground is stretching and my vision is expanding, which then triggers dizziness. * Exposure to bright or white light exacerbates the issue. * Focusing on reading has become challenging, as I need to exert additional effort to keep the words clear. * This dizziness is neither brief nor positional; it persists even while resting or sleeping. * **(Also) Pain:** During my third episode, I noticed significant pressure in my head, neck, and eyes, which was not present during the first two episodes where dizziness was the sole symptom. Fortunately, post-treatment with Tebokan (ginkgo) and magnesium, this pain improved significantly and almost resolved. * **Additional symptoms include:** * Visual distortions, such as a loss of focus akin to a camera lens, and a sensation of the floor moving beneath me. * Sensitivity to light (photophobia). * Occasional head pressure, although not accompanied by typical migraine symptoms. * **Medical evaluations conducted thus far:** * Ear, Nose, and Throat specialist — normal findings * Audiology tests — normal results * Neurological examination — normal * Internal medicine assessment — normal * Cardiology evaluation — normal * **What perplexes me:** * This does not align with BPPV since the episodes are not transient or positional. * It doesn’t resemble Meniere’s disease due to the absence of tinnitus or hearing impairment. * The duration spans months rather than just minutes or hours. * It appears to be more akin to PPPD (persistent postural-perceptual dizziness) or vestibular migraine, but I have yet to receive any confirmation from a doctor. **Demographics:** * Age: 26 years * Height: 171 cm * Weight: 80 kg * Smoking/Alcohol: None / Occasionally * Current medications include Tebokan (ginkgo), magnesium, melatonin combined with 5-HTP, and a folate supplement * Duration of condition: Over a year **My inquiries:** * Has anyone else dealt with unrelenting dizziness that lasts for months? * For those diagnosed with PPPD or vestibular migraines, do my symptoms resonate with yours? I appreciate your insights!
Answers (1)
9/13/2025, 3:31:02 AM
OpenHealth AI
It sounds like you’ve been through a frustrating and challenging journey with your persistent dizziness, and I commend you for reaching out for insights and support. Your symptoms clearly have a significant impact on your daily life, and it’s understandable that you are looking for answers.
Summary of Key Points
You are experiencing severe and continuous dizziness for over a year, with episodes of profound fatigue and pressure in your head and neck, along with visual distortions and light sensitivity. While evaluations have not yielded a clear diagnosis, your symptoms could align with conditions like PPPD or vestibular migraines.
Explanation
Dizziness can stem from various causes, including vestibular disorders (which affect balance), migraines, or even anxiety-related conditions. Persistent dizziness, especially when accompanied by fatigue and sensitivity to light, may suggest conditions like Persistent Postural-Perceptual Dizziness (PPPD) or vestibular migraine, as you noted. These conditions can be complex and often require a multi-faceted approach for management.
Next Steps
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Symptom Journal: Begin keeping a detailed diary of your symptoms. Include the timing, severity, triggers (like specific lights or activities), and any associated feelings (fatigue, pressure). This can help you and your healthcare providers identify patterns and potential triggers.
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Lifestyle Modifications: Consider the following strategies to manage your dizziness:
- Gradual Exposure: If bright lights trigger your symptoms, try gradual exposure to reduce sensitivity incrementally. You can start by spending short periods in bright environments and slowly increasing time as tolerated.
- Hydration and Nutrition: Ensure you are well-hydrated and consume nutritious meals to support overall health. Diet can play a role in managing migraines and dizziness.
- Movement Strategies: If you experience balance issues, working with a physical therapist who specializes in vestibular rehabilitation can help strengthen your balance and stability.
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Follow-Up with Specialist: Given the complexity of your symptoms and that previous evaluations were inconclusive:
- Consider a neurologist specializing in vestibular disorders or headaches for further assessment, particularly focusing on the possibility of vestibular migraines or PPPD.
- You might also explore the potential benefit of consulting a vestibular therapist for targeted exercises and interventions.
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Support Group or Community: Connecting with others who share similar experiences can provide emotional support and practical advice. Look for support groups either online or in person that focus on dizziness or vestibular disorders.
While your situation is certainly challenging, being proactive about tracking your symptoms and seeking the right support can lead you to more effective management strategies. You're not alone in this, and reaching out like you have shows strength and resilience. If there are further details or specific areas you would like to explore, feel free to ask!
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