u/healingisaprocess

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.

Posting on behalf of my sister because we’re hoping to find someone who has experienced something similar. My sister is a very sensitive person and does not handle stress well (she can get easily stressed/overwhelmed). On 11 August, she had a migraine with aura involving zig-zag disturbances, double vision, dizziness, numbness, fainting and a severe panic response. We believe a lot of these symptoms were caused by the severe panic attack that followed the migraine with aura. After this day, she then started to experienced some visual-snow/static-type symptoms as well as depersonalisation. Please note she was going through a period of a lot of stress about two weeks prior to this initial migraine with aura attack.

On 26 August, she woke up with a completely NEW visual phenomenon she had never experienced before: a constantly spinning spiral with a bright dot in the centre and almost like a mesh overlay. It has now been there 24/7 for three weeks and has not disappeared.

She sees it with her eyes open and closed. During the day, the outer edges can fade/become less noticeable, but the central spinning spiral/dot remains. It is worst when she first wakes up, when it seems to spin extremely fast. With her eyes closed at night, it can become much larger and she describes it as looking like a huge kaleidoscope.

If she focuses directly on the centre of the spiral, it can make her extremely nauseous. Since this started, she has also developed extreme sensitivity to light and sound. She struggles to look at the sky because it’s so bright, and even sounds can make her feel extremely overwhelmed. Strong smells like perfume can make her nauseous, and her pre-existing tinnitus has also flared significantly.

She has had a constant headache since the 11 August as well. Interestingly, she recently had a day without a headache, exercised, and afterwards the headache returned and the visual phenomenon became significantly stronger at the same time. Exercise seems to exacerbate both.

She has had an extensive neurological/ophthalmological work-up:
MRI — normal
CT — normal
EEG — normal
Eye examinations — normal
Blood tests — broadly normal

She was prescribed lamotrigine, but hasn’t started it because she has severe medication anxiety. She has also been prescribed lorazepam 1 mg for the extreme anxiety/hyperarousal but is frightened of dependency and withdrawal. Since all of this started, her nervous system seems incredibly hyper-alert. She finds it extremely difficult to relax and constantly distracts herself during the day.

We’ve been reading about persistent migraine aura without infarction, prolonged migraine aura, persistent positive visual phenomena and visual snow syndrome, but obviously aren’t trying to diagnose her ourselves.

I’d really love to hear from anyone who has experienced something similar, particularly a new geometric/spinning visual that suddenly appeared and remained continuously for weeks or months and how it was treated.