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A patient with Stargardt's and Acephalic migraine

  • 1.  A patient with Stargardt's and Acephalic migraine

    Posted 07-25-2025 13:34
    I have a 76 year old retired school principal and college educator who was diagnosed with Stargardts disease at the age of 40. Eight years ago she developed acephalgic migraine which usually consists of a bitemporal fortification spectrum in white that is quite annoyingly flashing and lasts for 10-15 minutes without headache. 
    She is horribly distraught by the interaction of these two disorders. She describes the visual aura causing "an utter visual cacophony" for three to four days after the visual aura subsides in which she has a "honeycomb" panoply of bright lights in her central vision wrecking any possible reading or visual task. 
    Has anyone seen this unusual combination before and does anyone have any ideas to soften the visual nightmare for her?
    A neurologist years ago tried a number of anti seizure and psych meds like lamotrigine which made things maddeningly worse.  Any thought are appreciated.
    Her visual acuity is 20/25 OD and 20/40+ OS best corrected. Her color vision is shot in both eyes and she has central scotomata occupying most of the central 10 degrees. I do want to review her MRI scans from 2017 and 2022 as white matter lesions are described in both parietal and occipital lobes as "lacunar". Her fields show a central scotoma respecting the horizontal meridian curiously in both eyes that is almost identical in both eyes. 
    Thank you
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    Scott Forman, MD
    Senior Fellow North American Neuro-ophthalmology Society

    Adult and Pediatric Neuro-ophthalmology
    Comprehensive Ophthalmology
    Functional Medicine











  • 2.  RE: A patient with Stargardt's and Acephalic migraine

    Posted 07-25-2025 14:43
    How has she done with the more routine migraine medication?  Has she been on CGRP's? Definitely worth reviewing her imaging, too.







  • 3.  RE: A patient with Stargardt's and Acephalic migraine

    Posted 07-25-2025 14:46
    She refuses to takeCRGP's





  • 4.  RE: A patient with Stargardt's and Acephalic migraine

    Posted 07-25-2025 15:17
    Is there a reason she refuses? Considering how debilitating she reports this being, funny that she wouldn't at least try them I assume she figures it's a conspiracy of "big Pharma"?







  • 5.  RE: A patient with Stargardt's and Acephalic migraine

    Posted 07-25-2025 16:46
    Not sure really. She has strong opinions, not necessarily well founded about her own health. 
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    Scott Forman, MD
    Senior Fellow North American Neuro-ophthalmology Society

    Adult and Pediatric Neuro-ophthalmology
    Comprehensive Ophthalmology
    Functional Medicine














  • 6.  RE: A patient with Stargardt's and Acephalic migraine

    Posted 07-25-2025 18:32
    If she wants to avoid Rx meds, I would recommend the nutraceutical prevention options like riboflavin, magnesium, or Co-q10. All should be safe in stargardts.

    I find topiramate works great for prevention of acephalgic migraine

    Best,

    Drew






  • 7.  RE: A patient with Stargardt's and Acephalic migraine

    Posted 07-25-2025 18:51
    Yes I have already done that Drew. I use 400mg Riboflavin, Feverfew (works better than Butterbur) and Magnesium Threonate, the only one that penetrates the BBB.
    Scott
    +=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=
    Scott Forman, MD
    Senior Fellow North American Neuro-ophthalmology Society

    Adult and Pediatric Neuro-ophthalmology
    Comprehensive Ophthalmology
    Functional Medicine














  • 8.  RE: A patient with Stargardt's and Acephalic migraine

    Posted 07-25-2025 19:09
    The natural stuff probably won't work....
    Sent from my iPhone - sorry for any crazy autocorrect errors 





  • 9.  RE: A patient with Stargardt's and Acephalic migraine

    Posted 07-25-2025 21:07

    Why does she refuse CGRPs (although she may need to take other migraine meds first to get them covered)? Even gepants (oral)?

    Deb






  • 10.  RE: A patient with Stargardt's and Acephalic migraine

    Posted 07-25-2025 14:48

    Irrespective of frequency, given the significant functional impact and the limited role of abortive therapies in this setting, continuous use of a prophylactic medications seems to be the way to go. I have had very good results with calcium channel blockers, like verapamil, in similar scenarios (minus the Stargardt's).

     

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  • 11.  RE: A patient with Stargardt's and Acephalic migraine

    Posted 07-25-2025 19:26
    Would she try daily low-dose aspirin?

    Can also consider the same lifestyle modifications that you might give to someone with migraine: Get plenty of sleep (not too much; not too little), don't skip meals, manage your stress (mindfulness, meditation), be careful with caffeine, make sure she doesn't have untreated sleep apnea, make sure she's not taking some supplement that's setting her off, etc.

    Bradley J Katz, MD, PhD
    Professor of Ophthalmology and Visual Sciences
    John A Moran Eye Center
    he/him/his