Experiencing Persistent Phantom Odors
Age: 24, Assigned Female at Birth (AFAB). Diagnosed with postural orthostatic tachycardia syndrome (POTS), hypermobile Ehlers-Danlos syndrome (hEDS), median arcuate ligament syndrome (MALS), and suspected mast cell activation syndrome (MCAS). Currently not on any medications or substances. Underwent two surgeries in November 2025 and January 2026 involving anesthesia. For the past one to two years, I have been encountering peculiar phantom smells. Initially, there didn't seem to be any specific triggers. The odors often resembled burnt rubber. However, in recent months, the frequency and intensity of these experiences have considerably escalated. Now, when I think about certain smells, I can perceive them as if they are actually present in my nasal passages, and at times, I even taste them. The predominant scents I've noticed include bleach or chlorine, soap, and occasionally, something reminiscent of isoflurane. Particularly over the last fortnight, I have been suffering from more intense headaches, and the cognitive fog I experience has become increasingly difficult to manage. I had an MRI of my brain last summer, which revealed no abnormalities. Unfortunately, I am unable to consult with a neurologist because of my hEDS diagnosis, as I was turned away. I'm unsure whether these symptoms are a cause for concern and am at a loss for what to do next. Additionally, I frequently deal with vertigo and other vestibular issues, which include poor depth perception, eye fatigue, nausea and dizziness when objects are in motion, and significant discomfort caused by bright or flashing lights, along with tinnitus.
Answers (1)
3/2/2026, 9:10:47 AM
OpenHealth AI
You’re experiencing persistent phantom odors and other related symptoms, which can understandably be quite distressing. Given your complex medical history and the recent escalation in your symptoms, it’s important to approach this carefully.
Explanation:
Phantom odors, also known as phantosmia, can occur for various reasons and might be related to neurological issues or could potentially be influenced by your existing conditions, like POTS, hEDS, or MCAS. The fact that these scents have recently become more frequent and intense, coupled with headaches, cognitive fog, and vestibular problems, warrants close attention.
Prioritized Next Steps:
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Track Your Symptoms: Start a detailed diary to document when you experience phantom smells and any associated symptoms (like headaches, dizziness, or vertigo). Note the duration, frequency, and context (e.g., after certain activities or foods).
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Hydration and Nutrition: Ensure you are well-hydrated and eating a balanced diet. Sometimes dehydration or low blood sugar can worsen symptoms related to your conditions.
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Minimize Triggers: Identify and avoid environments that may exacerbate your symptoms, such as overly bright lights, strong fragrances, or stressful situations.
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Establish a Routine: Implement a consistent daily routine that includes light exercise (if possible), relaxation techniques, and cognitive rest periods to help manage cognitive fog and fatigue.
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Consider Alternative Healthcare: Since accessing traditional neurology care has been challenging, you might explore integrative or functional medicine specialists who understand EDS, MCAS, and POTS. They can often provide insight into management strategies and alternative treatments.
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Monitor for Changes: Keep an eye on your symptoms for significant changes. If you begin experiencing new or worsening symptoms such as severe headaches, changes in vision, or balance issues, consider reaching out for urgent care.
By taking these steps, you can gather more information about your symptoms, which may help clarify the situation, all while supporting your overall well-being. If you feel overwhelmed, remember that seeking help from support groups or mental health professionals specializing in chronic conditions might also be beneficial.
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