Experiencing Vision Loss and Heart Issues with No Clear Diagnosis
I am a 20-year-old female, weighing 130 pounds and standing at 5'6", and I have been diagnosed with Ehlers-Danlos Syndrome. I’ve sought help from various medical professionals but remain uncertain about my health issues and am looking for guidance. Since I was around 10 years old, I've struggled with dizziness and headaches, particularly when I stand. Unfortunately, these symptoms have worsened over time. Now, I frequently experience complete vision loss each time I stand up, accompanied by severe headaches and occasional nausea. Additionally, I feel excessively hot and sweaty, and my heart rate skyrockets while standing. During my visits to an autonomic dysfunction clinic, I was advised to monitor my blood pressure at home. The readings fluctuated significantly from day to day. For example: - **Day 1**: Standing: 111/80 at 128 bpm | Sitting: 114/83 at 82 bpm - **Day 2**: Standing: 149/86 at 86 bpm | Sitting: 127/85 at 68 bpm - **Day 3**: Standing: 108/71 at 107 bpm | Sitting: 107/67 at 76 bpm My blood pressure tends to vary; some days it's low, and other days it's high. After undergoing a tilt table test, the results indicated some orthostatic hypotension, but I wasn’t given the specific values, and they did not diagnose me with POTS. I was prescribed 2.5 mg of midodrine but have reservations about taking it since my diastolic blood pressure occasionally exceeds 95 mmHg. Although my home measurements suggest I may have POTS, I was informed that I fell short of the criteria on that day. Furthermore, the echocardiogram results were normal. Recently, I've been experiencing numerous heart palpitations, feeling as though my heart skips beats or races. Along with this, I sometimes feel oddly disoriented, as if I’m viewing everything in slow motion. To investigate further, I wore a Zio heart monitor for nine days. The findings were as follows: my heart rate ranged from a minimum of 40 bpm to a maximum of 170 bpm, with an average of 81 bpm. The predominant rhythm noted was sinus rhythm, and while slight changes in P wave morphology were observed, isolated supraventricular events (SVEs) and ventricular events (VEs) were infrequent. I feel as if I’m losing my mind; all my tests return normal results, yet I feel miserable daily. It's impacting both my social interactions and work life, and I am desperate for a solution. To manage my blood pressure, I consume electrolyte drinks, take midodrine when necessary, and use compression socks. I would appreciate any suggestions to help alleviate these distressing symptoms. If my medical tests show no abnormalities, I'm puzzled as to why I feel this way. Thank you for your support.
Answers (1)
7/11/2025, 11:01:42 PM
OpenHealth AI
I understand that living with your symptoms and managing Ehlers-Danlos Syndrome can be incredibly challenging, especially when experiencing frequent dizziness, vision loss, and heart issues. It's understandable to feel frustrated, especially when tests return normal results but your symptoms persist. Here are some insights and potential next steps to help you alleviate these distressing symptoms.
Main Points
You may be experiencing symptoms related to dysautonomia, particularly given your blood pressure fluctuations and episodes of vision loss and palpitations. Strategies to manage your condition should focus on stabilizing your blood pressure and improving body awareness.
Explanation
Ehlers-Danlos Syndrome can affect connective tissue, which may lead to issues like postural orthostatic tachycardia syndrome (POTS) or other forms of autonomic dysfunction. Symptoms like dizziness upon standing, vision changes, and rapid heart rates often relate to how your body regulates blood flow. The variety in your blood pressure readings indicates your body may struggle to manage changes in position (e.g., sitting to standing), leading to symptoms you described.
Next Steps
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Maintain Hydration and Electrolytes:
- Continue consuming electrolyte-rich drinks, as they can help increase blood volume and, in turn, blood pressure. Consider increasing your fluid intake to around 2-3 liters per day if not contraindicated.
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Compression Garments:
- If you aren’t already, wear abdominal compression garments or higher compression stockings that apply pressure from your waist down to prevent blood pooling in your legs.
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Physical Maneuvers:
- When you feel dizzy or experience vision loss, try crossing your legs while standing or squatting to help blood flow back to your heart and reduce symptoms. Engaging in physical activities that improve circulation and strength, especially in your core and legs, may also be beneficial.
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Monitor Symptoms:
- Keep a detailed symptom diary that records your blood pressure, heart rate, and any symptoms you experience throughout the day. Note the times when symptoms worsen, which can help identify patterns or triggers.
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Medication Management:
- While you have reservations about Midodrine due to your fluctuating blood pressure, communicate these concerns with your healthcare provider to discuss the option of adjusting the dosage. Explore alternative medications or additional interventions that might better stabilize your condition.
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Lifestyle Adjustments:
- Gradually increase your standing time: Start with short periods and gradually extend them to improve your tolerance to standing.
- Engage in gentle, regular physical exercise, which can improve overall autonomic function. Consider low-impact activities like swimming or recumbent biking.
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Psychological Support:
- Given the emotional impact these symptoms can have, consider speaking to a psychologist or support group familiar with chronic illness management. Cognitive-behavioral therapy (CBT) can be helpful in coping with the anxiety and frustration of chronic symptoms.
Remember, it’s important to make any changes gradually and ensure you’re monitoring how your body responds. Keeping an open line of communication with your medical team is vital as you navigate your symptoms and treatment. You are not alone in this experience, and exploring these management strategies may improve your overall comfort and quality of life. Please let me know if you need further clarification or support.
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