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Ocular Migraines

I have been getting ocular migraines for years off and on. I am having them more than ever now and with some rather frightening experiences! A short time after the ocular migraine, I have trouble speaking words, I have them in my head but either can’t speak them or can’t bring them to mind. Also, I recently discovered that I can’t write, I had tried to write a thank you note (after an ocular migraine) and made several attempts, but could not get the words to come out right. The words were either missing letters, out of order.

Last year I went to the emergency room because I thought I was having a stroke, but the tests showed I was fine. Now the symptoms are worse and I am getting worried. Has anyone out there had this happen to them from ocular migraines?

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  • jrse
    1 year ago

    Hi! I’m so sorry that happens to you; it is scary and frustrating. I have a traumatic brain injury which completely destroyed how my brain processes what I see. It gives me constant pain behind and above my eyes. I am also an occupational therapist specialized in visual processing disorders, and, now living it myself, am very experienced with it. Our visual processing can mess up even with a cold or from being tired. Obviously your optical migraines are your primary problem, but what many people do not know is our vision is our primary gateway to our brain. If your vision is messed up, your brain will be messed up. This does not mean your visual acuity, how clearly you see in the “read the eye chart test,” is messed up, but how your brain is seeing through your eyes is messed up. So when your brain isn’t processing what you see properly, your brain can’t do other things properly either, such as get words out, read well, speak without stumbling, and math (I bet math gets harder for you, too). You sound just like me when my vision gets overwhelmed; I have a hard time reading, I can’t get words out, I can’t think clearly, and I can’t do math. So it sounds like your migraines are temporarily affecting your visual processing, which makes sense because I’m sure it makes your eyes super tired. Idk if there is any way to stop it for you, but you could always see if your insurance company covers vision therapy or occupational therapy, and they can teach you ways to compensate when this happens. You usually need a doctor referral for either of them.

    Good luck! Hope this helps!

  • Holly H.
    1 year ago

    I have both constant/chronic migraine with 24/7 aura and also have ocular migraine, both of several years duration, although the ocular came a few years later than the main migraine with aura. They pretty much exhibit as two different things for me, although they run concurrently and can overlap.
    One thing is that the volume control, as I call the migraines’ levels at any particular time, is more fluctuating for the ocular migraine effects. Another is that the epicenter of the migraine with aura is on the right side and runs down into my right eye, very painfully. The ocular migraine is worse on the left, but doesn’t get pain to that degree.

    When the volume is turned up on the ocular migraine, my left eye stays very red and irritated and just rather sore-feeling. Both my eyes stay blurry on volume up days, and my eyes get very tired very quickly all the time – so I listen to audio books mostly, and my crafting with small/detailed things is no longer possible. My eyesight gets dimmer, as it were, and it feels like I just can’t get enough light on to be able to see what I am trying to see.

  • DinaMay
    1 year ago

    I know just what you mean about being unable to speak after the neon lights in your head warn you that an ocular migraine is here. That was how I was first diagnosed with migraine, in fact. My pain centered in my right eye, after the light show. Then besides having trouble talking, my left side quit obeying my directions. Sometimes I’d have seizurelike movements. Sometimes saw bright spots through most of the migraine. Sometimes strange buzzing in my ears. Sometimes I could write a short message but anything more than 4 or 5 words I’d make so many mistakes no one could interpret it.

    I went to migraine specialist who had me try several different medications before settling on daily trazodone and ultram/Tramadol with sumatriptan as acute med. that worked for awhile in preventing the strokelike symptoms. Eventually I had to switch and I’m now on Botox shots. The point is, whatever weird stuff happens during a migraine, there is something you can try. My advice is to find a good doctor who will listen to you and keep trying.

  • Megalodon
    1 year ago

    My brother was born premature by 6 weeks in 1947 and developed retinopathy of prematurity. He has pinpoint vision in his left eye. He did have an unusual cataract in that eye in 2003 and had cataract surgery that fall. His vision improved for a bit then his close vision deteriorated and apparently developed glaucoma. He has his own business and has been doing electric motor repair for 50 years.

    In any case, I do know he is affected by intense ocular pain once in a while. Both of us are beginning to suspect ocular migraines but being my brother and stubborn besides, he will not take any medicine for the pain. What an intelligent idiot! I’m proud of him but, after all, he is my brother!

  • ronniecarrone
    1 year ago

    The info is really great – thank you. I signed up for emails and was interested in this piece on Ocular Migraines. Going to mention my experiences to my doc this afternoon when I see him to follow up on new BP meds. Two ‘ocular’ episodes in the last month (after not having for many years.) One followed by headache, one not. Wondering if the episodes are related to the new meds (a diuretic). Hoping not since my BP has been better than I’ve seen in a long time.

  • litehope
    1 year ago

    Yes, I had one yesterday… I always get the aura, but never the debilitating pain. At most, I get sort of an echo of pain… these things are more disorienting than anything. Yesterday I got numbness in my hand, face, and tongue, too… and couldn’t remember my coworker’s name. Totally freaked me out. I feel like everytime it happens it’s worse. 🙁 And everyone here keeps saying it’s a ‘migraine with aura’, but they rarely if ever hurt… this time I had no pain at all. Just disorientation. What do we do if it’s just the aura, but without the headache?? 🙁

  • jrse
    1 year ago

    mrst53 is right. My neurologist said even if you just get aura symptoms it is still a migraine. But she also told me to only take my rizatriptan if the aura symptoms are interfering with function in order to not overdo the triptan. So when I am so dizzy I can’t walk or even move, I take it. But if the aura is just weird smells or numbness in my mouth and face, I don’t take it.

  • mrst53
    1 year ago

    It’s still a migraine and you need to find a medicine for it.

  • bet
    1 year ago

    I never knew what the name for them was but yes I have the same thing. I just called it the fog cause I didn’t have anyone to talk to about any of this. and doctors don’t seem to willing to talk about it. the only thing that seemed to help was ice packs and all kinds of fruit and veggys no meat for a few days. I never had any meds that was of any help with this kinda fogginess. hope this can help you

  • Luna
    1 year ago

    This sounds like something that can come with migraine with aura.

    “The term ocular migraine is often used to describe migraine with aura or retinal migraine, a less common type of migraine.”

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