Assessing My Recovery Prospects with Visual Snow Syndrome
Hello everyone, I'm a 21-year-old woman, standing 5 feet 5 inches tall and weighing 356 lbs. To start, I want to express that my intention is not to offend anyone. I recognize that Visual Snow Syndrome (VSS) currently lacks a cure, and instances of complete recovery are rare. Also, I must mention that my diagnosis is self-administered, as I cannot afford a visit to a neurologist. My symptoms include heightened Brightness Floaters, mild visual static (especially noticeable in dim lighting), floaters, afterimages, light sensitivity, and what I call a sky vortex effect. I'm reaching out because I encountered someone here who mentioned they were able to alleviate their VSS symptoms by starting migraine treatments. I’ve read from others that their doctors suggested sleep apnea and migraines are common factors linked to VSS. My journey began in March when I started dealing with frequent headaches—occurring almost daily—and severe insomnia. Eventually, I was referred to a psychiatrist, who suspected my lack of sleep stemmed from depression. They prescribed me Fluoxetine at a dosage of 20 mg. I how I took it for a week, but struggled with consistency and decided to discontinue it due to the strange sensations it caused, mainly a sense of depersonalization. My vision became blurry during this period, but that issue cleared up after about three months. At that point, I wasn't aware of any symptoms of VSS. Meanwhile, my headaches intensified and transitioned to a constant daily occurrence. Out of the blue, I started to see floaters in my vision, especially when gazing at the sky. I thought these were merely a side effect of Fluoxetine. Then I began experiencing Brightness Floaters, followed by the other symptoms of VSS. Eventually, I was approved for a sleep study, and it revealed that I suffer from severe sleep apnea, with oxygen levels plummeting to 70% and having 68 apnea events per hour. I was also dealing with daily tension headaches. Adjusting to the CPAP machine was challenging at first, but it has improved my sleep quality. Since I've begun using the CPAP, I've noticed a significant reduction in my VSS symptoms. Floaters occur less frequently, and there have been moments where my Brightness Floaters felt nonexistent when looking at a bright, sunny sky (though they returned if I stared too long, highlighting their temporary nature). Afterimages have become less bothersome, and my sensitivity to light has greatly improved. While I have made progress, I am not completely recovered. Anxiety on certain nights still disrupts my sleep, and although I do experience headaches, there are days when I have none at all. This leads me to believe that my CPAP pressure may need some adjustment. I intend to schedule another sleep study in a laboratory to see if my pressure setting should be higher than 7, but I've been hesitant due to panic attacks I previously endured during an attempt. My hope is that confronting this second sleep study might lead to a complete resolution of my VSS symptoms. I have a few questions: 1. Given that sleep apnea impacts the visual cortex, has anyone else who left their sleep apnea untreated for years experienced comparable symptoms? 2. I am aware that SSRIs can be associated with VSS, but if it were the cause, wouldn’t symptoms have manifested immediately rather than appearing months later? 3. Has anyone else developed VSS shortly after starting SSRIs, or did their symptoms take time to present themselves? Thank you to everyone who takes the time to read this and offer insights. I genuinely appreciate your support, and I hope that everyone here is managing in the best way possible.
Answers (1)
8/17/2025, 4:31:25 AM
OpenHealth AI
Thank you for sharing your detailed experience and concerns regarding Visual Snow Syndrome (VSS) and sleep apnea. It’s understandable to seek clarity and support given the complexity of your symptoms and their impact on your quality of life. Let’s address your questions while emphasizing the positive progress you've made.
Main Points
- Sleep apnea may contribute to visual symptoms, including those resembling VSS.
- The relationship between SSRIs and VSS can vary, with symptom onset not always immediate.
- Individual experiences with the onset and progression of VSS can differ significantly.
Explanation
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Sleep Apnea and Visual Symptoms: Your improvement in VSS symptoms with CPAP use suggests that addressing sleep apnea has a beneficial effect on your overall health. Untreated sleep apnea can lead to a lack of oxygen during sleep, which may affect brain function, including visual processing. Many individuals report cognitive and perceptual changes due to long-term untreated apnea. Your situation seems to reflect a common theme where managing sleep issues alleviates some neurological symptoms.
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SSRIs and Timing of Symptoms: While selective serotonin reuptake inhibitors (SSRIs) like Fluoxetine can lead to visual changes in some individuals, the specific timeline can vary. Side effects or changes may not appear until weeks or months later, especially after a period of exposure. It's not uncommon for symptoms to develop over time rather than immediately after starting medication.
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Personal Experiences with VSS: There's a wide range of experiences among people who develop VSS, both in how quickly symptoms appear and their progression. Some might notice changes soon after starting medication, while others may see a delayed onset. Since everyone’s neurological makeup is different, what you’re experiencing is important to recognize and valid.
Actionable Next Steps
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Consider the CPAP Settings: Since you're noticing some fluctuations in symptoms, it may be worth discussing an adjustment of your CPAP settings with your healthcare provider. Their expertise is crucial to ensure optimal settings that support your sleep quality, which might further impact your visual symptoms.
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Monitor Symptoms Closely: Continue to keep track of your symptoms, particularly with changes in your CPAP settings. Note any new symptoms or changes in intensity to share during your next medical visit. This diary can also help you recognize patterns related to anxiety and headaches.
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Focus on Anxiety Management: Given that anxiety is still disrupting your sleep, consider implementing relaxation techniques such as deep breathing exercises, mindfulness meditation, or gentle yoga before bed. These may help improve your anxiety levels and, in turn, aid your sleep and overall symptom management.
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Prepare for the Next Sleep Study: If you decide to undergo another sleep study, consider discussing options for managing anxiety beforehand. Strategies like guided imagery or practicing relaxation techniques can be beneficial to help ease panic during the procedure.
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Connect with Support Groups: Since you're looking for insights from others who may have similar experiences, consider reaching out to online forums or support groups for VSS or sleep apnea. Sharing experiences and tips with others who understand can be incredibly valuable.
I hope this information provides some clarity and reassurance. It's commendable that you've made progress with your symptoms, and it’s important to stay hopeful while continuing to pursue support and management strategies. Let me know if you have any more questions or need further assistance.
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