Uncertainty Surrounding My Health Incident
I am a 15-year-old girl currently battling a cold, and I also have a confirmed diagnosis of Ehlers-Danlos syndrome. Additionally, I suspect I may have POTS, although that's not officially confirmed. Earlier today, I got up to visit the bathroom, which requires navigating around twenty steps from the living room. As I stood up, I noticed my vision starting to blur, but that’s a familiar sensation for me, so I didn’t think anything was amiss. Upon reaching the bathroom, my eyesight faded to complete darkness. Losing my sight entirely isn’t unusual for me, and while frustrating, I merely found it bothersome rather than alarming. Once inside, I turned on the light, and although I couldn’t see it illuminating the room, I heard the click of the switch, indicating it was on. I then attempted to locate the sliding door to close it. However, I misjudged the doorway completely on my first try. I felt it was odd, yet I dismissed it and tried again, but I encountered the same issue. After my second attempt, I experienced significant trembling in my limbs, so intense that I realized I was on the verge of falling. To prevent that, I quickly lowered myself to the floor, remaining blind to my surroundings. After about five seconds, my vision began to return, and I noticed my legs were still shaking. A few seconds later, the shaking subsided, and I regained control over my body. I stood up right after, feeling relatively assured that it wouldn’t happen again, but I opted to sit for safety's sake. This event occurred just a couple of hours ago, and thankfully, it hasn't recurred. Although my vision tends to dim when I stand, that is a typical occurrence for me, and I’ve since retained partial sight. I did not lose consciousness during the incident and have clear memories of the entire experience, without confusion or disorientation afterward. Notably, epilepsy runs in my family; my aunt has it, and my mother’s cousin experienced several seizures a few months back, although he hasn’t had any recently. Personally, I have never fainted, though I’ve come close multiple times. It’s important to mention that I’ve never experienced a seizure before, and I remain uncertain whether what transpired was a seizure or something different altogether.
Answers (1)
2/7/2026, 9:30:34 AM
OpenHealth AI
It sounds like you experienced a concerning episode that may relate to your Ehlers-Danlos syndrome and possible POTS. The symptoms you described, such as vision changes, trembling, and feeling faint, can be linked to issues with blood pressure regulation, especially when transitioning from sitting or lying down to standing.
Explanation
Ehlers-Danlos syndrome can affect your blood vessels and connective tissues, potentially leading to orthostatic intolerance, which is often seen in POTS. This means that when you stand up, your body might struggle to regulate blood flow and blood pressure, causing symptoms like blurred vision, fainting sensations, or trembling limbs.
While you mentioned that you have never had a seizure, the tingling and temporary loss of sight could understandably raise questions about whether that was the case. However, your clear memory of the event and absence of confusion afterward suggests it was more related to your existing conditions rather than a seizure.
Next Steps
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Hydrate and Rest: Drink plenty of water to help maintain blood volume and reduce symptoms. Rest and avoid sudden movements that might exacerbate dizziness.
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Monitor Symptoms: Keep track of any new episodes or changes in symptoms over the next few days—note when they happen, how long they last, and any activities preceding them.
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Position Changes: When standing up, do so slowly and try tensing your leg muscles beforehand to help with blood circulation. You might also consider wearing compression garments if recommended by a healthcare professional.
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Consultation: While I won't suggest visiting a healthcare provider right now, if these symptoms persist or worsen, or if you experience new symptoms like actual fainting, consider speaking to someone who knows about EDS and POTS. They can provide more tailored advice and potentially conduct tests to rule out other conditions.
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Emergency Awareness: If you ever experience severe symptoms, such as prolonged loss of consciousness, confusion, or severe tremors that don't subside, it’s important to seek emergency care.
It's entirely understandable to feel concerned after such an experience, especially given your family history of epilepsy. If you're feeling anxious about it, try to discuss your feelings with someone you trust, whether that’s a parent, friend, or counselor. You’re taking great care in understanding your health, and that’s a positive step!
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