Medically Unexplained Vision Loss: A Self-Reported Analysis

Summary of symptoms (from most to least distressing)
– Permanent bilateral stationary blind patches in vision
– Episodes of skin numbness lasting for up to 21 days
– Light-headedness; ranging from mild to collapse
– Generalised anxiety and OCD symptoms
– Visual Snow: Constant static-like visual disturbance, accompanied by mild palinopsia, BFEP, and night-blindness
– Symptoms of low blood pressure: Readings taken by medical professionals and self ranging from 94/56 to normal, frequent visual fading upon standing, weakness (particularly before eating)
– Severe headaches, approx. every 2 months (least distressing as largely treatable with multiple painkillers, but leaves me feeling groggy and heavy-headed)

Timeline of Symptoms
– Anxiety/OCD (always)
– Headaches (c.2003-Present)
– Visual Snow (2005-Present)
– Light-headedness (2010-Present, no longer severe)
– Numbness (2012-2013)
– Scotoma (2012-Present)
– Low BP (2012-Present, to best of knowledge)

Medical Visits and Tests
GP visit re: Light-headedness (2010). No further investigation.
GP visit re: Light-headedness (2011). Tachycardia observed and issued with 24-hour heart monitor. Some slight abnormalities observed but no further investigation.
GP visit re: Arm numbness (May 2012). Reassured of likelihood of trapped nerve. No further investigation.
GP visit re: Persistent and spreading numbness (April 2012). Placed on neurologist waiting list.
GP visit re: Scotoma (June 2012). Sent to Eye Hospital for examination. Broad-range field test (normal), central field test (several missing patches observed). Eye examination (normal). Told to wait for neurology appointment.
Admitted to hospital following leg weakness and reduced sensation in leg and foot (July 2012). BP (low), MRI/MRV (normal), spinal fluid pressure (normal), blood content (normal), eye exam (normal). Fever following lumbar puncture lasting 24 hours. Discharged the following day with scheduled Visual Evoked Potential and Fluorescein Angiography.
Visual Evoked Potential (September 2012). Normal.
Fluorescein Angiography (October 2012). Some abormality at side in both eyes but informed that this would not cause the symptoms described.
Follow-up appointments (2012-2013). No observed progression of symptoms so discharged from care.
GP visit re: Anxiety (2014). Prescribed Sertraline. Significant improvement in mental state but no improvement in previously-described symptoms.

The weird symptoms of a VSer

Okay so to most people visual snow is a weird enough symptom/syndrome in itself. But within the Visual Snow Facebook group and forum, I often notice the description of symptoms I did not know were possible even for a VSer.

VSers are united by their symptom of TV-like static in the visual field. It may or may not be more noticeable under different light levels, or times of day, but most VSers have this symptom 24/7. It can even be seen with closed eyes.

Goadsby and Schankin have recently published research suggesting that visual snow sufferers experience hypermetabolism in the lingual gyrus of the brain. However, this is merely a correlation and does not identify a cause. Further research is expected to commence in the near future, once the fundraising target has been raised.

There is currently no known treatment for visual snow; however the static is often not the only, and sometimes not the most debilitating symptom suffered by VSers. Symptoms commonly suffered by VSers are tinnitus, brain fog, derealisation/depersonalisation, fatigue, and anxiety. However it is not uncommon to see symptoms previously unheard of, even by your average VSer, described by member of the group.

The opportunity for sufferers to talk with others about their symptoms is of course largely a therapeutic experience, especially for sufferers of such a rare condition, many of whom have had negative experiences with members of the medical profession that haven’t heard of the syndrome before. However, ‘symptom sharing’ may also pose a potential psychological problem because of one influence. The power of suggestion.

Sufferers may read the description of another member and, realising they share a specific symptom, be able to eventually put a name to their symptom. But alternatively, it may cause a sufferer to realise the possibility that a symptom exists, which they may then dwell on, and self-analysis of an already anxious individual can lead to all kinds of stress.

I personally recommend ignoring posts that you know will not be useful to you. Discovering the similar plight of another may be comforting, but reading  about all the possible things that can go wrong in the human body may induce extra worry that not even a healthy person needs.