Concern Over Persistent Head Issues
Greetings, I'm a 34-year-old woman, weighing 132 lbs, standing at 5'5" based in Denmark. Diagnosis History: Ehlers-Danlos syndrome, psoriasis, chronic urticaria. I've sought help from both an ENT specialist and my general practitioner, but I can't shake the overwhelming sensation that something is amiss. Currently, I'm experiencing a range of troubling symptoms, including sharp, intermittent pains in my ears and head, predominantly affecting the right side but not exclusively. There’s a consistent pulsating tinnitus, mainly in my right ear, though it occasionally occurs in the left as well. Applying pressure to my neck seems to provide a bit of relief. Additionally, I'm struggling with dizziness and a lightheaded sensation. I've also been experiencing sudden episodes of déjà vu and confusion regarding directions; it feels as if my sense of orientation flips unexpectedly several times throughout the day, almost as if the world is turned inside out for a brief moment. My vision has also occasionally become blurred during these episodes. About two weeks ago, I experienced a notable loss of strength in both hands, which made it challenging to even use my phone. This was accompanied by a severe headache localized on the right side of my head and behind my eye, characterized by a sharp pain that lasted for around ten minutes before vanishing abruptly. Since that incident, my tinnitus has intensified, and my episodes of disorientation have worsened, particularly after physical activity. The initial ear pain began approximately five months ago, with other symptoms gradually manifesting and escalating each week. The ENT concluded that my ears are healthy and attributed the issue to tension. A physiotherapist's treatment has not alleviated my concerns. In a recent visit, my GP suggested it might simply be related to migraines. I can't shake the fear that this could be something more severe. I have a pervasive sense of dread regarding these symptoms, although I'm unsure if I'm overreacting. I've developed psoriasis in my ear canal, but fortunately, my hearing remains intact, my blood pressure is normal or slightly low, and my blood tests came back normal. I would appreciate any advice on how to proceed or suggestions to discuss with my physician during my upcoming appointment in two days. I understand that these issues may likely be benign, yet I am eager to eliminate any serious concerns, though I often find it challenging to communicate effectively with healthcare providers.
Answers (1)
8/17/2025, 6:12:13 PM
OpenHealth AI
I understand your concerns about the array of symptoms you're experiencing, especially given your medical history with Ehlers-Danlos syndrome, psoriasis, and chronic urticaria. Based on what you’ve described, it’s important to take a systematic approach to address your symptoms and ensure you’re heard in your upcoming physician visit.
Main Points:
- You are experiencing complex symptoms that may relate to multiple factors, including your underlying conditions.
- It's critical to address the acute symptoms, especially the neurological aspects like dizziness and loss of strength.
- Open communication with your healthcare provider about your concerns is essential to achieving clarity and care.
Explanation:
The symptoms you've detailed — intermittent ear and head pain, pulsatile tinnitus, dizziness, episodes of confusion, and recent loss of strength in your hands — suggest that a multi-faceted approach may be necessary. Conditions such as migraines, tension-type headaches, or even neurological issues could contribute to your experiences, especially considering your medical history. Ehlers-Danlos syndrome can also affect connective tissues and potentially lead to secondary issues that might explain some of your symptoms.
Next Steps:
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Document Your Symptoms: Keep a detailed log of your symptoms, including their duration, intensity, frequency, and any potential triggers. This will provide your physician with valuable insights.
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Discuss Comprehensive Testing: Given the severity and new onset of some symptoms (like the loss of strength), request further neurological evaluation or imaging studies (like an MRI) to rule out any serious conditions. Mention your fears explicitly; this may prompt a more thorough investigation.
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Express Your Concerns More Directly: Prepare specific questions to discuss during your appointment. For example, you might ask about possible connections between your Ehlers-Danlos syndrome and your current symptoms or express any need for a referral to a neurologist if appropriate.
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Consider Symptom Management: While waiting for a definitive diagnosis, discuss potential treatments for symptom relief. This might include medications for migraine prophylaxis if deemed appropriate or strategies to manage tinnitus and pain.
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Seek Support: A support network, such as friends, family, or online communities dealing with similar conditions, can provide emotional relief and practical advice on managing chronic symptoms.
Remember, you deserve to have your concerns taken seriously, and effective communication is key. Your health is important, and it’s okay to seek clarity until you feel reassured about your situation. Let me know if you need any more specific details about what to address with your doctor.
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