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Living with Migraine

Retinal Migraines and Migraine with aura. Advice?

  • By Dayvid

    Hey guys, I’m new here… So i’ll throw in a brief back story..

    I have had migraines (with aura) for 11-12 years. I am currently 23 years old. I suffered very badly with health anxiety and derealization about 3 years ago. During this time i developed what seem to be Retinal Migraines.

    Now, I’be never been diagnosed… I know! I know! But there is a family history so at the age of 11 my parents knew what they were and managed them. Thankfully – they aren’t severe. I get a couple a month on average – but this tends to go up (not a lot) and down for no known reason. The retinal migraines happen about 4 times a year (roughly).

    My main concern is my retinal migraines and I’m begging for some advice! Mine don’t give me blackouts. They give me phosphenes (almost identical to pushing on your eye) and stars. They don’t cover my whole vision but they do affect one eye only at the time. They last about 1-3 minutes maximum. And then i’m usually fine – sometimes a very slight headache, very slight.

    I’m scared (see my health anxiety issues) that i will lose my vision from my RETINAL migraines. I read horror stories of a lot of people eventually losing vision due to these. Like i said, mine aren’t extreme nor do they happen often. But it is a worry.

    I live my life in worry of migraines and what they’ll cause. So any guidance, help or just a chat would be much appreciated. More than you can imagine.

    So that’s me, i’ll hang around and help others if i can 🙂

    All the best to you all
    David

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  • By Dayvid

    I am wondering if these are in fact retinal migraines? I know they are linked to my migraines as they happen around flurries of my Classic (aura) migraines.

    But i’ve read everywhere that Retinal Migraines are blackouts in one eye – partial or full. Mine are more like, as i said, phosphenes and stars.

    3+ years on an my vision is stil fine on a day to day basis. No constant issues.

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  • By Geena Davis

    Retinal Migraine is a form of Migraine where there are repeated attacks of specific visual disturbances preceding the headache phase of the Migraine attacks.For preventing this , I think you should take some precautions like having meals on time, prevention from loud noise and protecting your eyes from sunlight by wearing glasses. Continuous work on laptops,computers may also result in headache.I would advice you to wear glasses and protect your eyes.

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  • By Katie M

    Hello! I am also new here, but I saw your post and had to respond. I have the exact same experience you do! I am 34 years old and have never really suffered from migraines that I know of, but my mother ha then really bad. My symptoms of retinal migraine started about 2 1/2 years ago, and it’s only happened around 10 times since then. I get the bright lights, or stars (phosphenes) in one eye. It only lasts for a few minutes and then my vision completely returns to normal. I usually don’t experience much of a headache afterwards. I’ve had normal eye exams every year. I also experience severe health anxiety and this totally feared me out. Reading your story really made me feel better. I hope mine helps you too!!

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  • By Lisa Robin Benson Moderator

    Hi Dayvid,

    I am constantly amazed at the variety of migraine types and symptoms out there. Thank you for sharing your story.

    I think it is natural to feel concerned, though I’m not positive how high there risk is, there is some risk to vision problems. We have an article on retinal migraines on this site which may be helpful to you. Here is a link and an excerpt explaining why preventive medications may be warrented:

    “Although the use of migraine prevention treatment for retinal migraine has not been sufficiently studied, the use of medications to prevent migraine might be warranted according several schools of medical thought. This is due to the fact that people with retinal migraine have a greater chance of permanent vision loss than people with other forms of traditional migraine. Therapy of the acute attack of retinal migraine should probably not include triptans or ergots because of these medications work by constricting blood vessels. Preventative medications that have been tried and have been reported to offer possible benefit include calcium-channelblockers such as verapamil and nifedipine,beta blockers such as metoprolol tricyclic antidepressants such as amitriptyline and some anticonvulsants like topirimate or divalproex . Although no guidelinesare available, low-dose daily aspirin therapy is well tolerated and has been reported anecdotallyto be effective.”

    https://migraine.com/migraine-types/retinal-migraine/

    I would recommend you try to get in to see a headache specialist and first confirm the diagnosis and then determine any treatment necessary. Treatment can involve both lifestyle changes (like figuring out and avoiding your triggers) and medication if necessary. But only a doctor can confirm the diagnosis. I can definitely understand why, with your family history, you hadnt sought diagnosis before. I do think that it may calm your anxiety to see a doctor and know what you are dealing with and what the risks are or aren’t for you. As someone who experiences anxiety myself, I know this would help me anyway!

    here is a link to help you get started on finding a headache specialist:
    https://migraine.com/blog/looking-for-a-migraine-specialist/

    Best of luck, and be well!
    Lisa

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  • By Debbie

    How are retinal migraines different from visual auras? I get visual auras that consist of flickering, flashing prism-like lights – they’re usually geometric, but the shapes change– as they grow the shapes open up and enlarge, becoming brighter and incorporating more colors – they are always in one field of vision – they last 20-40 min and are almost always followed by a massive migraine.

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  • By Dayvid

    Thanks so much for all of your advice guys!

    I haven’t had one in around 5/6 months. So here’s to hoping! It’s actually been 5 years since I started having them. A few times a year.

    Photo624, retinal migraines are eye related. Not brain related (as normal migraine with aura are) therefore, they look different.

    I hope mine are just retinal migraines and nothing more sinister! I guess after 5 years of having them… I’d know by now if they were? I’d hope? :/

    PS…. sorry for being so late to reply!!

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