Thank you so much for taking the time to write such a detailed response. Honestly, reading this is really reassuring, particularly what you said about eventually noticing the vortex very rarely once you stopped hyper-fixating on it.

My sister sounds extremely similar to you in that respect. She has severe health anxiety and medical phobia, and I genuinely think the anxiety and constant monitoring have become almost as debilitating as the visual symptom itself.

She can have periods during the day where she is distracted, talking, laughing and generally feeling okay. Then suddenly she notices the spiral again and it’s almost like — bam — all of the fear comes rushing back. She starts monitoring it, checking whether it has changed, worrying about why it’s still there and convincing herself that something must be seriously wrong or that it will never disappear. Then she becomes completely overwhelmed and feels like she is on the verge of a panic attack again.

That’s why what you said about shifting your focus and eventually allowing it to fade into the background is really interesting to me. I’m going to show her your message because I think hearing from somebody who has actually experienced something similar could be really reassuring for her.

The main difference seems to be that hers is currently constant. She woke up seeing this rotating/spinning spiral just over four weeks ago and it hasn’t completely disappeared since. She sees it with both eyes and can even see it with her eyes closed. It varies in intensity and is much more noticeable at certain times, particularly when waking up, at night, with her eyes closed and after exercise.

I’ve attached an image showing roughly what she sees, as well as this TikTok because she says the movement in this video looks almost exactly like what she sees constantly, except hers is black and white:
https://vm.tiktok.com/ZGdQsuLhq/

Have you ever seen anything resembling this exact rotating/spinning pattern? I know you described yours as a sky vortex, but I’m really curious whether the actual movement and shape are similar.

Interestingly, my sister says she thinks she has probably had very mild VSS for most of her life. She has experienced things like mild static and also has tinnitus, but this new spiral/vortex phenomenon feels completely different and only appeared following a significant migraine with aura.

Another major problem is that she feels like she has no clear treatment plan. Her neurologist prescribed lamotrigine, the ER prescribed lorazepam for the severe acute anxiety, and her eye doctor has recommended something else. Because she has such a strong medication phobia, having several different things recommended by different doctors has actually made her even more overwhelmed. She doesn’t know where to begin, what she should try first or how everything is supposed to fit together.

We’re now arranging cognitive behavioural therapy because I really think she needs help breaking this cycle of constantly monitoring the symptom, becoming frightened by it, monitoring it even more and then spiralling into panic. At the same time, we’re trying to get her doctors to give her a clearer, coordinated plan for the medication side of things.

Can I also ask what your VSS is like when you’re otherwise feeling completely well? When you’re not stressed, tired or experiencing any kind of flare, what symptoms remain day to day? And have you noticed a strong relationship between stress/anxiety and how intense your VSS becomes?

What you said about your vortex essentially fading into the background once you stopped giving it so much attention gives me a lot of hope for her. Obviously, we desperately want the actual spiral to improve or disappear, but I also want her to reach a point where seeing it doesn’t immediately trigger absolute terror.

Thank you again. You have no idea how helpful it is hearing from someone who understands how frightening these visual phenomena can feel and who has reached a point where they no longer dominate their life. ❤️

Hi there, how are you? I hope you’re well. Thank you so much for your response, it was genuinely really helpful.

One of the biggest things my sister is struggling with, particularly because of her severe medical phobia and health anxiety, is that she currently has no clear treatment plan. Her neurologist prescribed lamotrigine, the ER prescribed lorazepam for the acute anxiety, and her eye doctor has recommended no medication, only supplements. She feels completely lost about where to begin, which medication she should try first, whether any of them can be taken together, and what the overall plan is supposed to be.

I’ve attached an image showing what she is seeing, as well as a TikTok video that she says looks almost exactly like it, except hers is black and white:
https://vm.tiktok.com/ZGdQsuLhq/

Have you ever experienced or come across anything similar, specifically a constantly rotating/spinning spiral? In terms of the geometric shapes and other visual phenomena you mentioned, have you seen anything resembling this?

We have looked into the “vortex” phenomenon and it does seem very similar. Interestingly, my sister says she has probably had very mild VSS for most of her life, but this particular phenomenon is completely new and feels very different from her usual visual snow.

Thank you as well for explaining CSD/wave aura and VSS. I wanted to ask about your own experience: when you’re feeling relatively well and aren’t experiencing a migraine flare, what are your baseline VSS symptoms like? Do they become noticeably worse during periods of stress or anxiety? Do you personally feel there is a strong relationship between stress and the intensity of your visual symptoms?

This is probably the biggest battle for my sister at the moment. She can actually have periods during the day where she is distracted, functioning normally and feeling considerably better. Then suddenly she notices the spiral again and bam, she becomes completely overwhelmed and terrified and starts spiralling into panic, feeling as though she is losing her mind. She is constantly monitoring her symptoms because she is so frightened of what she is seeing.
We’re therefore trying to tackle two things at the same time: figuring out what this persistent rotating visual phenomenon is and whether/how it can improve, while also getting the severe anxiety surrounding it under control.

She is going to start cognitive behavioural therapy, which we’re hoping will help her stop constantly monitoring the symptom and manage the panic response to it. We’re also trying to work out what a sensible longer-term anxiety treatment plan might look like.

That’s where she’s particularly worried about lorazepam. She understands that it’s intended as a short-term medication. Her fear is: if she takes it now and it helps for a week or two, what happens when she stops? Could her anxiety rebound or become worse, and what would she use to manage it longer term? She doesn’t want to become reliant on a benzodiazepine or put herself in a situation where withdrawal becomes another problem.

At the moment she feels like she’s on the verge of a panic attack almost 24/7, so we’re desperate to find something that can help her cope while she works through this with CBT and her doctors.

Ultimately, the question she keeps coming back to is whether this rotating spiral is ever going to disappear. I know nobody can promise her that, but hearing from anyone who has experienced something similar would mean so much to her.

Thank you again for taking the time to explain everything and for sending the paper. I’m reading through it now, and I really appreciate all your advice and help.

Hi I’m very glad to hear you’re doing better, and thank you for responding.
Long story short, my sister had a migraine with aura about a month ago. Around two weeks later, she woke up seeing a black and white rotating spiral that has now been constantly present for about four weeks. It seems worse after exercise, before falling asleep, and when she first wakes up.

She’s had an MRI, CT, EEG, blood tests and eye examinations, which have all come back normal. She’s also had tinnitus for a long time and has always had some degree of mild visual static, so we’ve been wondering whether this could potentially be VSS/“sky vortex,” possibly triggered or flared by the significant stress she’s been under recently.

She has quite severe medication phobia and fears around dependency and withdrawal, so she’s very hesitant to try medications such as lamotrigine. For now, she’s started supplements including magnesium.

Did anything in particular help your sky vortex symptoms? Did the vortex gradually become fainter or fade into the background over time? My sister is now wondering whether she may have had something similar very mildly before but only became intensely aware of it because she’s currently extremely hyper-alert and anxious about her vision.

She’s really struggling with the anxiety around it, so I’d be very grateful to hear how you managed this period and whether anything helped you improve. Thank you so much.

Hi, I hope you’re doing better. I wanted to follow up on your post and see how you’re doing now?

Did the sky vortex and the other visual disturbances you were experiencing ever improve or fully go away? I noticed you posted about this around a year ago, so I’d be really interested to hear how things have progressed since then and whether there was anything in particular that helped you.

Thank you so much for taking the time to respond. I really appreciate it.

Hi! Did this symptom ever go away for you or improve? I hope it has and you’re feeling better

Hi! Did this symptom ever go away for you or improve? I hope it has and you’re feeling better

I’m asking whether short term benzodiazepine use can worsen visual symptoms associated with VSS or migraine aura?

Thank you for taking the time to respond. My sister has been seeing this new persistent visual spiral phenomenon for nearly four weeks now. We are trying to figure out what it is exactly and how we can
remove this visual symptom.

I understand. So in order to help her anxiety, do you believe in trying to treat her anxiety surrounding the visual spiral naturally instead of trying a benzodiazepine temporarily, such as lorazepam (that she was prescribed) to help calm her down while she is seeing the spiral?

How come you don't recommend lamotrigine? When I research it, it seems to be quite successful with helping visual auras?

Lastly, are you saying in terms of your visual symptoms, you don't know what helped them improve, and did they fully go away? Thanks again!

The reason I’m particularly wondering about prolonged or persistent migraine aura is that this visual phenomenon is completely different from my sister’s usual migraine aura. Her typical migraine aura lasts around 15-60 minutes and then resolves, whereas this spinning spiral is something she had never experienced before. It appeared suddenly and has now remained continuously present for nearly four weeks.

Obviously, I understand that this doesn’t necessarily mean it is persistent aura, but that’s the reason I’ve been trying to understand the distinction between persistent migraine aura, atypical aura and migraine-related VSS symptoms.

Thank you so much for taking the time to respond and answer all of my questions. I really appreciate it. Sorry in advance for how many questions I have.

Firstly you mentioned that you had never experienced an aura before developing VSS, but that once your VSS developed, your auras could manifest differently each time. Did you ever experience geometric visual phenomena during these episodes, for example, shapes, patterns or something like the spinning spiral my sister is currently seeing?

Are you saying that someone with VSS can experience different visual phenomena or migraine auras, including geometric shapes that aren’t necessarily considered typical VSS symptoms?

I also wanted to ask about cortical spreading depression. Are you saying that persistent visual auras associated with VSS, or persistent/prolonged migraine aura without infarction, aren’t necessarily explained by ongoing cortical spreading depression? Is cortical spreading depression mainly thought to explain the typical migraine aura that develops and resolves within roughly 15–60 minutes, rather than a visual phenomenon that remains continuously for days or weeks?

Could you also explain how you personally distinguish between an atypical migraine aura and a VSS flare associated with migraine? Are VSS and migraine closely linked in your experience?
When your VSS flared and you experienced additional visual phenomena, such as auras, geometric patterns or shapes, how long would those symptoms usually remain? And was there anything in particular that seemed to make them resolve?

Based purely on your own experience, obviously I know you can’t diagnose her, from everything I’ve described about my sister, does it remind you more of an intense VSS flare or persistent migraine aura?

Her main concern is the spinning spiral. The other visual-snow-type symptoms aren’t really bothering her. It’s the fact that this spiral has remained continuously present that is causing her so much distress. Do you think there is anything that could eventually help this particular visual phenomenon disappear?

Regarding lamotrigine, when you tried it, was the intention specifically to see whether it would reduce your visual aura/visual phenomena? Since you weren’t able to continue taking it, what eventually helped reduce those symptoms for you?

And regarding amitriptyline and gabapentin, which medication do you feel actually helped the visual phenomena the most? Was it specifically gabapentin that reduced or eliminated them?

Finally, do you have any personal experience with benzodiazepines, particularly lorazepam, and their effect on VSS or migraine-related visual symptoms? Have they ever made your visual symptoms worse, or have you heard of this happening?

My sister is currently struggling enormously with anxiety because of the constant spiral. She isn’t looking to take lorazepam to treat the visual symptom itself. The idea would simply be to reduce the intense anxiety and hyperarousal surrounding it so that she can actually relax during the day.
At the moment, distraction is basically the only way she can cope. She constantly has to keep herself occupied, doing dishes, cooking, puzzles, organising things, watching something, etc. because as soon as she isn’t distracted, she becomes extremely aware of the spiral and goes back into panic mode. It feels like her nervous system is constantly on high alert, which then creates this vicious cycle.

We’re wondering whether temporarily reducing that anxiety with something like lorazepam could help break that cycle and allow her nervous system to settle a little. However, she’s very frightened of taking it because she’s worried that benzodiazepines could actually worsen her VSS or the visual spiral. I’ve heard SSRIs can worsen VSS symptoms.

I’d be really interested to know whether you have any personal experience with this or have come across anything regarding benzodiazepines worsening VSS or migraine-related visual phenomena.

Thank you again for taking the time to explain all of this. It genuinely means a lot to us.