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one truly sh*t medical marvel.
So, my name has once again popped up on the Wildcard rotation and to be honest I don’t have a tonne of topics I’d like to explore.
However, yesterday evening the night sky was full of static again and my ears were ringing till my offspring woke me up early this morning. I guess I’ll just talk about that.
Apologies in advance if this is lacking any distinct structure and is full of digressions, but if it is, I will not be removing them. Look, there’s the first already.
Basically, I have something I’m vaguely sure is called ‘Visual Snow Syndrome’. It is characterized by constantly seeing moving static, and my vision appears like some grainy, retro camera filter from the 90s.
Against opaque surfaces, it is particularly intrusive and abundant. Inanimate objects appear alive and my vision at night is a blanket of teal blue speckles and noise – each dot perpetually jittering and overlapping with another.
As a bonus, my ears will without warning become boiling hot and bright red. It happened every evening for around a year but has gradually become a more sporadic surprise. Recently in Cornwall, my girlfriend’s uncle turned to me at dinner and proclaimed: ‘F*ck me boy, your lugs are red’. So, if you were wondering whether it’s subtle, like Dick, it ain’t.
I mean, wtf is this?
Lastly – but definitely not least – tinnitus has become a permanent acquaintance in my late 20s. You know that random ringing noise you occasionally get… the one that sounds like the aftermath of a flashbang before subsiding after a few seconds? Well, I have that (dialled down slightly) but all the time.
With background noise it’s generally not too debilitating, but I’m constantly reminded of it during any moment of silence. Whacking on the fuzz of white noise has become as crucial a part of the bedtime rigmarole as brushing your teeth. Without it, getting any shuteye feels like a pointless feat of endurance with no winner. In the office, meanwhile, my colleagues rightly take the piss out of the hoover ‘asmr’ emanating from my earbuds daily.
When I see the grim smorgasbord of symptoms written down, and I promise they’re every bit annoying as suggested, it sounds unbearable. After close to three years of living in this state, however, I’m fairly content and have learned to manage all three.
Now, I’m aware that I may be giving off self-indulgent, ‘pick me’ energy, but let me be crystal clear: I have no interest in your sympathy. And, if you’re picturing a neurotic hypochondriac at the end of the keyboard, I promise I’m the complete opposite. I’m in my local GP surgery maybe once a year and avoid the place like playdates my baby-Mumma sets up.
The reason I’m writing about this topic, other than I think people might read it because it’s weird, is because there’s no medical ‘cure’ (and I use that term reluctantly) for any of the symptoms. In-fact, there’s not much research on any of the disorders and their respective etiologies at all.
There is a loose correlation between all three, and that is typically some sort of neurological issue causing the brain to overload the senses, predisposition to migraines, a severe anxiety disorder with an incredibly rare culmination, or a problem/ misalignment of the spine itself and its surrounding muscles. At least, that’s what it says online.
I have my sneaky suspicions that in my case, the latter cause is probably most likely. Here’s why. Get out your tiny violins.
At the beginning of my symptom fiesta in 2022, which came on incredibly suddenly if I recall, I remember having an incredibly stiff neck. There had been no major accident to cause it to seize, but it was majorly prohibitive.
In conjunction with this, I became incredibly sensitive to light in a short amount of time. Cluster headaches were a weekly occurrence, and I would have to leave work due to extreme dizziness, nausea, and just not being able to look at the f*cking screen or sit in the park without looking like a fugitive caught in the spotlight of a police chopper.
When exposed to florescent lighting, all the symptoms would go into overdrive. Tube journeys were unbearable, and I’d have to wear sunglasses in the office just to function at a decent capacity. I’d lose count of how many times a colleague would say ‘My future is so bright I need shades’ in a week.
Naturally, despite my loathing of the GP waiting room, I ended up booking several appointments looking for some relief – and low-key needing to rule out anything sinister like viral or bacterial meningitis.
Having spent a handful of sessions with the surgery’s physio, and weeks actioning her advice by performing ridiculous jaw and posture exercises, she eventually threw her arms up and guessed that a neurologist was likely needed.
In the following months, I basically fought with GPs over the phone determined to get a referral for a neurologist at a hospital. I would’ve gone anywhere in the country at that point.
Before that eventuality, though, (which they seemed to constantly move further and further away) I had to go through their ‘action plan’, which was like pulling teeth. The lack of communication between doctors meant I’d have a new GP smirking at me in bemusement every time I attended an appointment and explained ‘what the problem is.’
I was given beta blockers called Propranolol and left for 2 months. All they did was make me feel like a zombie around the office – a happy one, granted. The little pink pills were fun but ultimately offered no route to addressing the problem directly. They also caused shortness of breath over time in the evenings after continual use.
The next order of business from the doctors was to see whether my eyes were a problem at the opticians (I knew they weren’t) and to get a blood test performed, something I was optimistic may finally hold some answers.
@nonaeyemd Have you ever seen anything that looks like tv static over your vision? Lets talk about it 📺 #visualsnow #visualsnowsyndrome #eyecare #eyecaretips #ophthalmology #ophthalmologist #eyedoctors #eye #doctorsoftiktok ♬ Storytelling – Adriel
After waiting for ages and repeating myself over and over on more phone consultations, my already wafer-thin patience had been eroded beyond its limit. I went to meet my old pal from school, now the most senior doctor at Brighton Hospital, for a drink in Croydon. After he shrugged at my symptoms, I just couldn’t be arsed anymore.
I basically put the ‘investigation’ on hold for Christmas, endured the visual assault from twinkling lights, and waited for news from my GP. In late January, he told me to come into the surgery with news of my blood test – something they normally do if something abnormal is present. Weirdly, I was excited.
In the office sat an old Greek doctor with classical music playing from a radio beside him. I already knew from my sister that this bloke was far from compassionate and tended to be dismissive. She wasn’t wrong in her analysis.
He pointed to an asterisk next to my blood test which signalled ‘inflammation’ but discounted anything serious on the basis that – and this is verbatim – ‘It could be anything like a common cold.’ He then gave me a prescription to grab on the way out.
Walking home feeling sorry for myself I looked in the bag, it was more of those pink beta blockers again but this time at a way higher dose. I later learned a family member had been taking them after suffering a mental breakdown. Frankly, I was getting to that point.
After getting home and swiftly volleying the tablets at my kitchen ceiling, I made a conscious decision to just crack on and bear it. These are the duff cards you’ve been dealt; people deal with all sorts of horrendous illnesses and afflictions far worse than you. It is what it is – even if I’ll never know what ‘it’ is.
In 2024, I’m glad to say the symptoms are far kinder than they were in 2022. The squiggly floaters that plagued my eye fluid like computer pop-ups are rare, bouts of light sensitivity are rarer, and I’m left to contend with what I described at the start. Hopefully, the existing issues continue to dilute with time.
My dodgy eyes and ears no longer wear me down daily, that I’m aware of consciously anyway. Now, the frustration has turned predominantly into curiosity: Wtf is it and why did it ever come about?
In the UK, VSS apparently affects around 2.2% of the population. Bad luck.
Feel free to reach out if you experience or know of anyone that experiences something similar.
Cheers for listening to another ramble.
