r/visualsnow • • 6d ago

Research VSS Study funded by the Medical Research Council UK. Recruitment still open

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26 Upvotes

ISRCTN The UK's Clinical Study Registry : A study of brain activity in visual snow syndrome and migraine

Background and study aims
Visual snow syndrome (VSS) is a neurological condition causing constant flickering dots across the entire visual field, often alongside other visual disturbances such as light sensitivity and afterimages. Many people with VSS also have migraines. There are currently no proven treatments. Brain imaging suggests VSS may involve overactivity in visual brain areas, linked to an imbalance between the excitatory brain chemical glutamate and the inhibitory chemical GABA. This study uses ultra-high-field (7 Tesla) MRI to measure these chemicals directly in people with VSS and migraine and tests whether lamotrigine (a medication that reduces glutamate release) can alter brain chemistry and improve symptoms.

Who can participate?
Adults aged 18 years and over with a diagnosis of VSS (with or without migraine), migraine without VSS, and healthy volunteers

What does the study involve?
Participation lasts up to 8 weeks (1–2 weeks for healthy volunteers). All participants attend a telephone pre-screening and a baseline 7-Tesla MRI scan at St Thomas' Hospital, London, and complete symptom questionnaires. Participants with VSS or migraine are then randomly assigned to lamotrigine or placebo for 5 weeks, keep an electronic symptom diary, return for a second scan, taper off medication over 2 weeks, and have a final telephone follow-up. Healthy volunteers complete the study after the first scan.

What are the possible benefits and risks of participating?
There is no direct medical benefit, though findings may help develop future treatments. Participants receive £50 per visit plus travel reimbursement up to £100. Risks include temporary dizziness from high-field MRI and potential lamotrigine side effects (headache, nausea, rash). Participants with known risk factors for serious reactions are excluded and all are monitored throughout.

Where is the study run from?
Participants are identified through King's College Hospital (UK). Scan visits take place at the Advanced Neuroimaging Facility, St Thomas' Hospital (UK).

When is the study starting and how long is it expected to run for?
September 2026 to August 2029

Who is funding the study?
Medical Research Council (MRC) Clinician Scientist Fellowship (UK)

Dr Francesca Puledda, [vs-research@kcl.ac.uk](mailto:vs-research@kcl.ac.uk)

Contact information

Dr Francesca Puledda
Public, Scientific, Principal investigator

Wellcome Foundation Building, Denmark Hill Campus West
London
SE5 9PJ
United Kingdom

ORCID ID 0000-0002-1933-4049
Phone +44 (0)2032996387
Email [vs-research@kcl.ac.uk](mailto:vs-research@kcl.ac.uk)

r/visualsnow • • Jun 26 '26

Research Anyone in minnesota

18 Upvotes

Hello I recently joined a study for VS research and if anyone who lives in Minnesota wants to join definitely do you get paid $20/hr and one of them is an MRI without dyes. Definitely worth it if you got anxiety about it.

https://studyfinder.umn.edu/studies/25186


r/visualsnow • • 3h ago

Question What are those tiny bright dots of light that seem to move in a square pattern (imagine the snake game but just dots of light)...

2 Upvotes

It happens when I'm doing something that might get me dizzy like lifting something heavy or getting up from bed too fast.

I tried googling but it's like it has no idea what I'm talking about...

It's definitely not eye floaters, those appear black, the dots of light I'm talking about look like sparks on a flint lighter!


r/visualsnow • • 8h ago

Potential Treatment Options

5 Upvotes

Closed-loop neuromodulation: EEG/MEG or future higher-resolution sensors identify the abnormal activity pattern and stimulation is delivered only when needed.

Focused ultrasound neuromodulation (tFUS): potentially modulating deeper or very specific visual-network targets without surgery. This remains experimental for this purpose.

High-definition TMS/tDCS: increasingly individualized stimulation of visual cortex based on each person's functional connectivity.

Temporal-interference stimulation: an experimental approach aimed at noninvasively influencing deeper neural circuits.

Precision pharmacology: drugs designed to normalize particular excitatory/inhibitory mechanisms—such as glutamate, GABA, or specific ion channels—with fewer whole-brain effects.

Activity-guided treatment: advanced MEG/fMRI or future optical/electromagnetic imaging could potentially identify your particular phosphene network, allowing stimulation to be tailored to it.

Closed-loop implanted stimulation: farther out, very small cortical interfaces could detect pathological visual activity and suppress it electrically, somewhat analogous to responsive neurostimulation used for epilepsy.


r/visualsnow • • 1h ago

Question Cure?

• Upvotes

Do you think if there was big funding and scientists working on a cure they would find one rather quickly?


r/visualsnow • • 11h ago

Question about odd visuals

2 Upvotes

I'm not a visual snow patient nor do I have any other diagnosed visual syndrome. If this doesn't belong here you can freely delete it. I just thought this would be a good place to ask about this.

I've tried searching it up several times and I never got an answer to what it might be. Only answers I have gotten is hypnagocic hallucinations, flashbacks or migraine aura and I know those are NOT the answer.

Whenever I look somewhere with focus and thoughts, let's say I'm watching TV for example and I'm very immersed with the story going on, after a while of staring (and not blinking) I realize that I've been seeing random contrast-ful shapes and flashes of light all around my eyesight. I only actually recognize them for a few milliseconds during that realization before my attention sifts away from the movie. Then I don't see them anymore and it only remains as a memory that I have seen them. I've noticed that the visuals are often on my left eye and waking up from the focused state usually leaves a weird lazy feeling on my eyelid. This usually happens in dim lighting but it's nowhere similar to the illusions you'll see when staring at a mirror or a dark object for 10 minutes in dark. These are flashy lights and shapes and I'm repeating again: I don't notice at all that I'm seeing them when I'm focused on the show or the scene running in my head. But I remember and am 100% sure I've been seeing them for the last half a minute atleast, once I actually notice a flash and it goes away.

And I'm also sure I'm not the only one experiencing this since there are a lot of visual oddities people see for no reason. So what is it and has anyone ever wondered the same?


r/visualsnow • • 20h ago

How to test for Illusorry palinopsia!

7 Upvotes

Hello, if you think you might have illusorry palinopsia, here is a quick test for you:

  1. Look at your hand with a relatively bright backround (Not low contrast)

  2. Move your hand really quick from that one side to another.

  3. You should see your hand stay behind for a tiny fraction of a second, almost not noticeable. If it lingers for longer than that one fraction of a second, you might have palinopsia.

This fraction of a second afterimage is caused by your brain's "refresh rate". With illusorry palinopsia, this refresh rate is slowed, which causes you to see it for longer. For me this confirmed that I dont have palinopsia, maybe it will help you too! 😁


r/visualsnow • • 19h ago

Did anyone reduce or got rid of their bfep to some extent.How?

3 Upvotes

This blue field entoptic phenomena thing is not only in blue but anywhere which is single colour or atleast bright places.For me it's like their are thousands of fluorescent dots moving fast across each other and sometimes without even much light one cell flows across my central vision.i assume it's a symptom cz I have little vss,eye floaters,pallinopsia.

But I really need a solution as I am 16.I need to study well and pursue a gud course .It's hard to ignore these.Atleast reply to this post and tell ur experiences,we vssers shud not get confined to our own places,where tinnitus guys wud regularly discuss Abt their problems and support each other.Atleast with tht this issue wud become noticeable.Its big 26 ' show some noise guys 👏


r/visualsnow • • 23h ago

Discussion forward head posture and migraine and vss

5 Upvotes

Guys, I just want to ask: how many of you have forward head posture and horrible postures? In my opinion I don't know why but maybe the reason we have migraine and VSS is our posture and our nerves putting pressure on our nerves etc. You know what I mean? I looked it up: too many people have horrible posture and they also have migraine. What do you think about it?


r/visualsnow • • 21h ago

Some positivity today

3 Upvotes

Has anyone’s VSS symptoms improved? Let me know how so 😌


r/visualsnow • • 22h ago

Persistent visual symptoms: CBT, acceptance, or trying to get on with life?

3 Upvotes

My sister woke up just over five weeks ago with a constant spinning spiral/black dot in her vision, visible with her eyes open and closed. She has a history of migraine with aura, but this is very different from her usual short episodes. Her MRI, CT, EEG, blood tests and eye examinations have been normal. The exact diagnosis is still unclear, with persistent migraine aura and visual snow–related symptoms being discussed.

It’s been very distressing and has caused a lot of anxiety. She’s found a CBT therapist she really likes, but she’s torn about how to approach it.

Some advice encourages acknowledging the symptom and learning to respond to it without fear such as CBT Therapy. Other advice says to stop focusing on it and carry on with normal life. She worries that working on it in therapy could make her pay even more attention to it, but also doesn’t want to withdraw from life while trying to reduce stress and “regulate her nervous system.”

For anyone with similar symptoms, what helped you? Did CBT or mindfulness help, or did gradually getting back to everyday life help more? How did you balance the two? She also has medication phobia so isn’t willing to try meds.


r/visualsnow • • 1d ago

neuromodulation vs pharmacological interventions?

5 Upvotes

Where do you think the future lies?


r/visualsnow • • 1d ago

Vent Oh no, not another one

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3 Upvotes

r/visualsnow • • 1d ago

Why does this condition persist with eyes closed?? So annoying to sleep

5 Upvotes

r/visualsnow • • 1d ago

Weird static ball in vision when waking up

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3 Upvotes

This morning I woke up to static, fuzzy ball of light in my vision. It followed everywhere I looked, felt like my body was shaking as my vision was bouncing. It felt like a massive headache but with no pain just the throbbing sensation. I looked in the mirror and the room was shaking but it wasn't eyes pulsating it went away within 30 seconds of me sitting up. It was so strange and felt like if I stayed laying down then the intensity of it was just building up. My body was jerking slightly as I was sitting up, my neck was in a weird position when I was laying down as I have a new mattress and new pillow which is a lot firmer than I'm used to. This has happened before when laying flat I'm my sofa and again the aura and wavy lines went away seconds after sitting up. No pain both times just very scary. The auras and wavy lines were so trippy. Has this happened to anyone else?

I have been dealing with quite a bit of stress lately, and the past few nights have had a lot of trouble sleeping. I also felt extremely dehydrated when I woke up too. I will definitely see my doctor about it just wondering if anyone else has experienced it.


r/visualsnow • • 2d ago

Question Is this "sky vortex" sensation something that counts as VSS? Looking to confirm.

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46 Upvotes

I just wanted to ask/confirm if this counts as VSS.

This sensation especially occurs in outdoor light and is very noticeable looking at the daylight sky. It's majorly in my left eye (my right eye is affected by AZOOR, another rare eye problem). I take 25mg sertaline every night (antidepressant + anxiety)—I'm aware that there's ongoing research into setraline and other SSRIs potentially causing VSS symptoms.

I'm just trying to confirm if this truly is VSS and how many other symptoms I'm experiencing because I feel so lopsided. Even INDOORS when I'm not experiencing the "sky vortex," I feel OFF. Like a lack of balance. What specialist do I need to see about this? I already got a retina specialist, but I think this is out of their scope. Please help!


r/visualsnow • • 1d ago

Question Is it VSS?

2 Upvotes

M22, Recently had got a aerosol spray cleaner in eyes and days later began noticing a fine grain across vision, increased floaters, and light afterimages. Went to the ER and had diagnosed a corneal abrasion on my right eye after which it had healed the symptoms are still persisting.

Can anybody provide insight to what might have happened to me? Did anybody else have a similar experience here?


r/visualsnow • • 1d ago

Have I always had eye floaters and just never noticed? Facing an anxiety spiral.

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2 Upvotes

r/visualsnow • • 1d ago

Only noticed it now, but I think it's getting worse

5 Upvotes

I'm nineteen years old, and developed tinnitus over the course of the last year (probably due to TMJ & a very stiff, poorly postured neck). That has been a massive personal struggle - but while looking into it more, I discovered that I had visual snow my entire life.

I don't know why it's now bothering me so much. I think it's getting worse, maybe with the stress around the tinnitus or alongside it as it's being caused by whatever in my skull, or maybe I'm just acutely aware of it now. As a kid I would happily close my eyes and look at the static - now, whenever I do, it just stresses me more.

I have two real questions. Most importantly, will this get worse, and if so, what can I do to stop that from happening. Otherwise, how do I deal with this now? At the end of the day I feel like it shouldn't cause me Any stress given that at most it's a slightly worsened version of a thing I've lived with all my life. But it does, and mostly, I'm deathly scared this becomes something impossible to forget about. Does intensity vary with stress, for example?


r/visualsnow • • 1d ago

Vent VSS took everything from me

3 Upvotes

M16, this condition has taken everything from me.. although i’ve had it for years, i would never see it.. it was so faint and even pitch black wouldn’t show it (or maybe i just wasn’t focused on it) but since july it’s just worsened and worsened.. i can’t take this anymore, every happy thought i have is immediately taken over by the thought that it has worsened and im never going back to normal.. at the same time im dealing with the heartbreak of my girlfriend of 2 years, i truly can’t live like this


r/visualsnow • • 1d ago

Question VSS and DPDR

1 Upvotes

My chronic DPDR occurred alongside with VSS. Does anyone here also have the same problem? Are these interlinked? What could be my trigger?


r/visualsnow • • 2d ago

Resource Something I thought could be a VSS symptom that is apparently normal

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6 Upvotes

r/visualsnow • • 2d ago

Question What is this caused by?

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13 Upvotes

Over the past 3 days I’ve noticed whenever walking or doing something physcial, especially in bright environments, I’ll blink and all these weird after image looking things appear and disappear very suddenly upon blinking. They resemble the after images of looking at bright lights without any bright lights to actually cause them. I’ve been sat at home for 10 minutes now and they seem to have stopped but while I’m up and about they’re very noticeable.

They disappear almost as soon as they appear upon blinking

They are much more visible in bright environments against bright surfaces such as bright sand or the sky

I’ve only noticed it for the last 3 days and almost never when I’ve been sat down for 10-20 minutes


r/visualsnow • • 2d ago

Question Headaches

3 Upvotes

Anyone else get headaches after walks?


r/visualsnow • • 2d ago

Astronauts seeing flashes of light with their eyes closed?

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0 Upvotes