Experiencing Severe Balance Issues and Neck Swelling: Seeking Insights
Hello everyone. I am a 30-year-old female with a BMI of 23%, currently diagnosed with hypermobility spectrum disorder, hypertension, Postural Orthostatic Tachycardia Syndrome (POTS), long COVID, hypothyroidism, and obstructive sleep apnea. Recently, my symptoms have intensified, and I’m struggling to find clarity regarding their cause. In March, the issue persisted for four days, and in May it extended for eight days, during which I faced sudden, debilitating episodes of dizziness and nausea. These episodes rendered me unable to stand, sit upright, or maintain my equilibrium, leading to an emergency visit. It felt impossible to regain stability, even while seated, as I frequently lost my balance. Following a deep tissue massage for my neck and shoulders in January 2025, I have experienced a range of concerning symptoms: - Ongoing pain on the right side of my neck with a pulsating sensation in my head - Continuous swelling above the right collarbone - Pain and restricted movement in my neck - A mild swelling of my right eyelid - Pressure in my forehead coupled with overwhelming fatigue - Worsening dizziness upon bending my neck or looking downward - Nighttime itchiness across my body - Difficulty focusing my eyes, resulting in misjudged movements and dropping items - Pain and weakness in the right calf and leg These distressing episodes seem to correlate with any manipulation or pressure on my neck, such as the deep tissue massages received in January and March, as well as a neck ultrasound and examination in May. I have sought help in the emergency department, where my discharge letter mentioned a potential carotid artery dissection, yet imaging was not performed, and I was discharged with a diagnosis of POTS or long COVID. Additionally, I consulted my GP and a private vestibular physiotherapist. An MRI of my spine revealed only a minor disc bulge at C5-6. Although an ultrasound for the swelling found no masses, it suggested possible early Sjögren’s syndrome and tenderness at the right collarbone. My blood tests have mostly returned normal. I had a brief episode of Benign Paroxysmal Positional Vertigo (BPPV) in January, which resolved with an Epley maneuver, but my physiotherapist did not believe I was experiencing BPPV again. I’ve been informed that the issues may be linked to POTS or long COVID, but both the long COVID clinic and physiotherapy specialists disagreed with this assessment. Having had POTS for five years, I have never encountered such severe balance loss before. I’m currently on an NHS neurology waiting list since May 6, although I have yet to receive an appointment, which is still pending review. I am feeling increasingly unwell and anxious about my condition, and recovery seems elusive. If anyone has insights or similar experiences, I would greatly appreciate your input. Thank you for your help!
Answers (1)
6/18/2025, 12:11:27 AM
OpenHealth AI
It's understandable to feel anxious and concerned about your symptoms, especially given their complexity and severity. The combination of significant balance issues, neck swelling, and a range of other symptoms can be overwhelming. Let's break down the information and focus on key points to help guide your next steps.
Key Points
- Severe Balance Issues and Neck Swelling: These symptoms may arise from several intertwined conditions, including potential complications from your existing diagnoses or recent manipulations, such as deep tissue massage.
- Current Concerns: Symptoms like dizziness, neck pain, and pulsating sensations could indicate issues that require attention, including vascular concerns related to the carotid artery, and they deserve further investigation.
- Ongoing Evaluations: You have several ongoing assessments with specialists, but clearer insights are necessary to pinpoint the underlying causes of your symptoms.
Explanation
Your description of sudden dizziness and balance loss, especially post-manipulation of your neck, raises concern for potential neurological or vascular issues, even if initial imaging found no immediate problems. While conditions like hypermobility, POTS, and long COVID can certainly lead to symptoms like dizziness and fatigue, the combination of new or worsening neck pain and swelling should not be overlooked, especially in light of the potential for carotid artery dissection.
Next Steps
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Prioritize Safety: Given the severity of your symptoms and the history of dizziness and balance issues, it is crucial to ensure your environment is safe. Use assistance devices as needed and avoid high-risk situations that could lead to falls.
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Symptom Diary: Keep a detailed diary of your symptoms, including when they occur, their duration, associated activities, and any self-care measures taken. This information can be invaluable when you are able to see your neurologist.
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Engage Your Healthcare Team: Since you're on a neurology waiting list, consider:
- Calling your healthcare provider to seek an expedited appointment, especially given worsening symptoms.
- Discussing your symptoms with your GP again to ensure that they are aware of your exacerbated condition, and potentially looking at referral options for imaging or tests that haven't been performed yet.
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Avoid Further Neck Manipulation: Given your recent experiences, it would be wise to avoid deep tissue neck massages or any other manipulative treatments until your symptoms have been thoroughly evaluated by a specialist.
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Hydration and Nutrition: Manage POTS symptoms by staying well-hydrated and eating a balanced diet. Salt increases fluid retention, which can help with blood volume and minimize POTS symptoms.
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Explore Support Networks: Consider connecting with support groups for individuals with POTS or long COVID. Sharing experiences with others facing similar challenges can provide emotional support and practical coping strategies.
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Address Anxiety: If anxiety about your health is increasing, consider methods to manage it, such as mindfulness, meditation, or breathing exercises. Approaching mental health holistically can positively impact your overall wellness and symptom management.
Your well-being matters, and seeking clarity about these symptoms is a reasonable and necessary step. Take each day as it comes and focus on manageable actions for improvement. If you have any further specific questions or need assistance, feel free to reach out.
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