Eye Don't Know: Best Practices for Ocular Migraines?
November 12, 2023 8:11 AM Subscribe
Posterior vitreous detachment, ocular migraines, light sensitivity, and extremely dry/sore eyes for a year now. Two optometry workups showed nothing ostensibly wrong. What gives? And what do I do now?
YANMD, etc., but looking for any advice—anecdotal and otherwise—for recent eye problems. In the past year I’ve experienced more eye issues than in the entire 56 years before that. A year ago I was diagnosed with posterior vitreous detachment (PVD) after an episode of peripheral flashing lights in my left eye. That PVD seems to have left me with a permanent smudge/floater in that eye. I can live with that, but also in the past year I’ve had three “ocular migraines”—two while driving on the highway—which have scrambled my visual field (in both eyes) so much that I can’t see. I’ve had to pull over with semis racing by and just wait it out for 10–15 minutes until I can see again. This is terrifying, to say the least, and has now made me anxious about driving. Which is really terrible because I live in a place where you pretty much have to drive to do anything, and most of that driving is on the highway. The first incident occurred last December, the second two months later, and the third earlier this week. The only common denominator to these three episodes is time of day—all occurred in the late morning/early afternoon, between 11 am and 1 pm. But everything else was different: cloudy day, sunny day, wearing contacts, not wearing contacts, wearing sunglasses, not wearing sunglasses, after exercise, not after exercise, etc. I can no longer tolerate wearing daily contact lenses—I went from being able to wear them 12 hours a day to now barely 2 without really irritating my eyes and feeling that irritation for a day or two afterwards. I seem to have developed very dry eyes that are sore a lot. I’ve been using Blink tears but am wondering if there’s any other approach to this problem. And finally, I seem to be becoming much more light sensitive. Every headlight at night looks like a high beam, and I find myself wearing my sunglasses a lot more than I used to.
I’m 57, female, and generally a healthy person. I exercise daily, don’t drink, am not particularly stressed, have no known allergies, and eat well. I drink 1-2 cups of half-caff coffee every morning. I live in the US Midwest, but one of these episodes happened in Florida. My screen time hasn’t really changed. My prescription is -3.25, and I wear glasses with progressive lenses and daily progressive contact lenses (when I can). I occasionally have pretty debilitating sinus issues/headaches, but these “ocular migraines” of the past year are not followed by headaches of any kind. (Sorry for all the details but I have no idea what’s relevant!) I’ve had two full exams by two different optometrists which revealed nothing strange or problematic. Those eye doctors and my own primary care doctor—whom I like and trust—have given me a collective shrug on all of this. What are my next steps here? I’m looking for anything from eye advice to anxiety-about-driving advice! Thank you, Hive Mind!
YANMD, etc., but looking for any advice—anecdotal and otherwise—for recent eye problems. In the past year I’ve experienced more eye issues than in the entire 56 years before that. A year ago I was diagnosed with posterior vitreous detachment (PVD) after an episode of peripheral flashing lights in my left eye. That PVD seems to have left me with a permanent smudge/floater in that eye. I can live with that, but also in the past year I’ve had three “ocular migraines”—two while driving on the highway—which have scrambled my visual field (in both eyes) so much that I can’t see. I’ve had to pull over with semis racing by and just wait it out for 10–15 minutes until I can see again. This is terrifying, to say the least, and has now made me anxious about driving. Which is really terrible because I live in a place where you pretty much have to drive to do anything, and most of that driving is on the highway. The first incident occurred last December, the second two months later, and the third earlier this week. The only common denominator to these three episodes is time of day—all occurred in the late morning/early afternoon, between 11 am and 1 pm. But everything else was different: cloudy day, sunny day, wearing contacts, not wearing contacts, wearing sunglasses, not wearing sunglasses, after exercise, not after exercise, etc. I can no longer tolerate wearing daily contact lenses—I went from being able to wear them 12 hours a day to now barely 2 without really irritating my eyes and feeling that irritation for a day or two afterwards. I seem to have developed very dry eyes that are sore a lot. I’ve been using Blink tears but am wondering if there’s any other approach to this problem. And finally, I seem to be becoming much more light sensitive. Every headlight at night looks like a high beam, and I find myself wearing my sunglasses a lot more than I used to.
I’m 57, female, and generally a healthy person. I exercise daily, don’t drink, am not particularly stressed, have no known allergies, and eat well. I drink 1-2 cups of half-caff coffee every morning. I live in the US Midwest, but one of these episodes happened in Florida. My screen time hasn’t really changed. My prescription is -3.25, and I wear glasses with progressive lenses and daily progressive contact lenses (when I can). I occasionally have pretty debilitating sinus issues/headaches, but these “ocular migraines” of the past year are not followed by headaches of any kind. (Sorry for all the details but I have no idea what’s relevant!) I’ve had two full exams by two different optometrists which revealed nothing strange or problematic. Those eye doctors and my own primary care doctor—whom I like and trust—have given me a collective shrug on all of this. What are my next steps here? I’m looking for anything from eye advice to anxiety-about-driving advice! Thank you, Hive Mind!
Can you get in to see a migraine specialist? There are migraine preventative drugs that might stave off the ocular migraines - that sounds extremely scary and worse than the occasional ones I get.
Fellow extremely dry eye person here. Have you seen an ophthamologist rather than an optometrist? I use generic Restasis twice a day - prescription eye drops. Also sleep with a bottle of preservative free Systane next to my bed - if you're using regular eye drops with preservative note that you can only use them 4x a day before they cause dry eye instead of fixing. Other things to try - using a dry eye gel at night - theoretically those work better than drops. Personally I can't stand them.
I also use Pataday (generic version) - eye drop antihistiamine - which I use daily. All of those things help quite a bit. I had punctal plus for a while but they fell out. Waiting for a consult on getting the tear ducts that drain tears cautorized for a more lasting solution.
posted by leslies at 8:31 AM on November 12, 2023 [2 favorites]
Fellow extremely dry eye person here. Have you seen an ophthamologist rather than an optometrist? I use generic Restasis twice a day - prescription eye drops. Also sleep with a bottle of preservative free Systane next to my bed - if you're using regular eye drops with preservative note that you can only use them 4x a day before they cause dry eye instead of fixing. Other things to try - using a dry eye gel at night - theoretically those work better than drops. Personally I can't stand them.
I also use Pataday (generic version) - eye drop antihistiamine - which I use daily. All of those things help quite a bit. I had punctal plus for a while but they fell out. Waiting for a consult on getting the tear ducts that drain tears cautorized for a more lasting solution.
posted by leslies at 8:31 AM on November 12, 2023 [2 favorites]
Maybe going in a whole different direction here, but I had frequent ocular migraines in my 30s similar to the kind you describe (though mine sometimes came with low grade headaches that lasted for several hours/days). It turned out they were related to hormonal birth control, and they abated significantly when I was taken off the BC. I still get them from time to time, generally around my period or if I'm really stressed, but it's way better. Maybe there's something going on for you related to hormones changing and menopause? Could be worth asking your doc about this!
As for the scariness of losing your vision briefly when they happen, I feel you! It's awful, and it really is so terrifying when one comes on while driving. I started recognizing when they were about to hit but before they reached full strength and leaned into becoming aware enough that I'd catch that hint and I could get myself into safer situations ASAP. For me, they almost always "develop" over a few minutes, starting with a small flash/bright light/sparkly area in the corner of my vision. Now if I get that little signal, I close my eyes to check if it happens with eyes closed (ie not some random mirrored object reflecting into my vision), and then immediately try to 1) take tylenol/ibuprofen, 2) close my eyes/cover them so that it's dark, 3) put in eyedrops, 4) try some hot/cold experiments (ice/heat pad on head/neck/forehead/hands) to distract, and/or 5) drink a Coke (something about the caffeine+bubbles helps). None of these things work consistently, and generally I just have to wait out the ocular sensation, but sometimes they seem to stop or temper it, and for me, trying to avoid the headache that often follows is key, and my interventions do seem to help with that. There are these weird cooling gel/ice packs for your head that you can get that are embarrassing to wear and believe in, but honestly, they're very comforting when you're in the midst of an ocular migraine, so you might look out for one of those. Anyway, next time you have one of these guys, if you can try to really notice how it starts and develops, that might be info you can use in the future so it doesn't come on so strong and fast that you're surprised and in a bad spot.
One last thing, during the worst of it, I did go to a neurologist and get a whole brain MRI, which was helpful for me in that it told me that there wasn't anything obviously wrong with my brain, which was a big anxiety I had. It was not so helpful in that it didn't tell me what was actually going on, and ultimately, it was a big surprise that it was my gyno who figured out the issue instead of my PCP or neurologist.
Good luck, I hope you find some relief and feel better.
posted by luzdeluna at 9:05 AM on November 12, 2023 [4 favorites]
As for the scariness of losing your vision briefly when they happen, I feel you! It's awful, and it really is so terrifying when one comes on while driving. I started recognizing when they were about to hit but before they reached full strength and leaned into becoming aware enough that I'd catch that hint and I could get myself into safer situations ASAP. For me, they almost always "develop" over a few minutes, starting with a small flash/bright light/sparkly area in the corner of my vision. Now if I get that little signal, I close my eyes to check if it happens with eyes closed (ie not some random mirrored object reflecting into my vision), and then immediately try to 1) take tylenol/ibuprofen, 2) close my eyes/cover them so that it's dark, 3) put in eyedrops, 4) try some hot/cold experiments (ice/heat pad on head/neck/forehead/hands) to distract, and/or 5) drink a Coke (something about the caffeine+bubbles helps). None of these things work consistently, and generally I just have to wait out the ocular sensation, but sometimes they seem to stop or temper it, and for me, trying to avoid the headache that often follows is key, and my interventions do seem to help with that. There are these weird cooling gel/ice packs for your head that you can get that are embarrassing to wear and believe in, but honestly, they're very comforting when you're in the midst of an ocular migraine, so you might look out for one of those. Anyway, next time you have one of these guys, if you can try to really notice how it starts and develops, that might be info you can use in the future so it doesn't come on so strong and fast that you're surprised and in a bad spot.
One last thing, during the worst of it, I did go to a neurologist and get a whole brain MRI, which was helpful for me in that it told me that there wasn't anything obviously wrong with my brain, which was a big anxiety I had. It was not so helpful in that it didn't tell me what was actually going on, and ultimately, it was a big surprise that it was my gyno who figured out the issue instead of my PCP or neurologist.
Good luck, I hope you find some relief and feel better.
posted by luzdeluna at 9:05 AM on November 12, 2023 [4 favorites]
Sjogren's and other dry-eye diseases may be associated with higher incidence of migraine.
posted by jolenex4 at 10:04 AM on November 12, 2023
posted by jolenex4 at 10:04 AM on November 12, 2023
Occular migraines don’t actually have anything to do with your eyes—they’re neurological in nature. It sounds like you have separate problems that are unfortunately occurring all at once. They are treated by a neurologist, not an eye doctor. The role of an ophthalmologist is to rule out problems with the eye itself, that’s it. It’s very normal for “sinus” headaches to actually be migraines. Mine start around my eyes and then I get a sharp ache that travels down my nose. This is a migraine, not a sinus headache, even though the pain is near my sinuses.
It’s also completely normal for ocular migraines, also known as silent migraines, to occur in the absence of a headache. They’re called atypical migraines because they come with symptoms besides head pain. It sounds like your overall migraines have gotten worse and are starting to present with auras as well. This can be scary but the good thing about ocular migraines is they’re temporary and not particularly harmful long term, though I know they can be distressing in the moment.
I have lived with traditional and silent/atypical/ocular migraines for years. I used to get multiple auras like what you’re describing a week. I finally saw a neurologist, and they put me on 800mg a day of magnesium, which has been scientifically proven to reduce the incidence of migraines, and quite literally healed me of all my problems in life. I was skeptical when the doctor recommended a supplement but it literally cured me. They also suggested taking 400mg of vitamin B2, which has been shown to reduce the frequency and severity of migraine headaches.
All this to say, you want to treat this as a neurological issue, not an ophthalmic one, and absolutely talk to your doctor about treating it with supplements and not heavy duty medications. It’s scary but very much something you can find a way to treat and live with. Good luck!
posted by Amy93 at 10:09 AM on November 12, 2023 [10 favorites]
It’s also completely normal for ocular migraines, also known as silent migraines, to occur in the absence of a headache. They’re called atypical migraines because they come with symptoms besides head pain. It sounds like your overall migraines have gotten worse and are starting to present with auras as well. This can be scary but the good thing about ocular migraines is they’re temporary and not particularly harmful long term, though I know they can be distressing in the moment.
I have lived with traditional and silent/atypical/ocular migraines for years. I used to get multiple auras like what you’re describing a week. I finally saw a neurologist, and they put me on 800mg a day of magnesium, which has been scientifically proven to reduce the incidence of migraines, and quite literally healed me of all my problems in life. I was skeptical when the doctor recommended a supplement but it literally cured me. They also suggested taking 400mg of vitamin B2, which has been shown to reduce the frequency and severity of migraine headaches.
All this to say, you want to treat this as a neurological issue, not an ophthalmic one, and absolutely talk to your doctor about treating it with supplements and not heavy duty medications. It’s scary but very much something you can find a way to treat and live with. Good luck!
posted by Amy93 at 10:09 AM on November 12, 2023 [10 favorites]
For me, when I started taking what I thought were absurd amounts of B12 (based on % daily value), I stopped getting so many migraines, and my b12 is in normal range now. And B12 is something you don't absorb as much of as you get older.
posted by aniola at 10:14 AM on November 12, 2023
posted by aniola at 10:14 AM on November 12, 2023
When ocular migraines come to me, my salts are out of balance and I've been staring at bright computer screens, so nth-ing salt and mineral supplements. Check your hydration and mineral intake.
posted by k3ninho at 11:08 AM on November 12, 2023
posted by k3ninho at 11:08 AM on November 12, 2023
Nthing, as a migraineur, that if there are no remarkable findings on eye examination, your next call is neurology. There are treatment options available if a neurologist agrees your issue is ocular migraine.
It did also cross my mind this could be hormone related - either connected to declining endogenous oestrogen, which HRT might help with or, if you're already on HRT, connected to the wrong dosage. So that might also be worth looking into.
posted by Ballad of Peckham Rye at 11:25 AM on November 12, 2023
It did also cross my mind this could be hormone related - either connected to declining endogenous oestrogen, which HRT might help with or, if you're already on HRT, connected to the wrong dosage. So that might also be worth looking into.
posted by Ballad of Peckham Rye at 11:25 AM on November 12, 2023
luzdeluna's management tips are my approach, as well. Ocular migraines (scintillating scotoma) are freaky as hell, but they're not actually dangerous (except to the extent they interfere with life activities). Now that you know what they are and what their precursor looks like, if you get the little blank patch or the "glare" that doesn't fade right away, while you're driving, you know you have that little window to pull over and wait it out.
You can try the various migraine treatments, too, if you want to, but they're far from universally effective. Right now I feel like I'm under the threshold for adding yet another prescription to my list, but it's a question of individual preference (and what your insurance will pay for).
posted by praemunire at 12:28 PM on November 12, 2023 [1 favorite]
You can try the various migraine treatments, too, if you want to, but they're far from universally effective. Right now I feel like I'm under the threshold for adding yet another prescription to my list, but it's a question of individual preference (and what your insurance will pay for).
posted by praemunire at 12:28 PM on November 12, 2023 [1 favorite]
See a neurologist for the migraines and an ophthalmologist (not an optometrist) for the dry eye issues. Optometrists do a great job at helping you see better but they have only a passing expertise in diseases of the eye which are the specialty of ophthalmologists.
posted by gerygone at 1:17 PM on November 12, 2023 [4 favorites]
posted by gerygone at 1:17 PM on November 12, 2023 [4 favorites]
Cyclosporine eye drops have almost cured my dry eyes. They're prescription.
posted by The corpse in the library at 1:55 PM on November 12, 2023
posted by The corpse in the library at 1:55 PM on November 12, 2023
My persistent dry eye issues turned out to be the oil ducts in my eyelids malfunctioning and not moisturizing the eye. I see an ophthalmologist instead of an optometrist, and the doctor worked out an effective treatment plan. Neither my primary nor generalist neurologist were able to help much when I was having ocular migraines, which luckily seem to have resolved on their own. So I agree with seeing an ophthalmologist and a neurologist with migraine specialization.
posted by EvaDestruction at 1:55 PM on November 12, 2023 [1 favorite]
posted by EvaDestruction at 1:55 PM on November 12, 2023 [1 favorite]
Just chiming in that I also had these increasing my frequently (like multiple times a week) and when a friend filled me off that it could be hormonal birth control, I stopped taking it. Had one more I think and then never a single one again after that.
posted by caitcadieux at 3:17 PM on November 12, 2023
posted by caitcadieux at 3:17 PM on November 12, 2023
Magnesium ABSOLUTELY helped with my migraines but these suckers are so unpredictable. I won't have one for a decade, then two in one week. For me, it DOES seem stress related but not always. (HBC gave me standard migraines and going off it helped as far as those go.)
posted by Countess Sandwich at 3:19 PM on November 12, 2023
posted by Countess Sandwich at 3:19 PM on November 12, 2023
Changing migraine symptoms can be menopause-related. My ocular migraines seem related to hormonal changes. I had none, then a few in my 30s, a ton while pregnant, some since; they also seem to come in clusters, like 3 in a month and then none for 6 months, then 3 in 2 days, none for 3 years, 2 in 3 weeks. For me they seem to be triggered in part by weather pattern changes. I agree with the other poster that I can tell when they are triggered and if I take care of myself they seem to be less bad. The problem I have is that they also seem to give me brain fog so I don’t always trust myself that I have one coming on. My doctor did say that a few really good night sleeps can break a cluster cycle, so consider your sleep aid of choice. If it might be related to menopause, I’d want to know how hormone replacement therapy and supplements might help. You also might consider limiting your driving during that late morning period.
posted by vunder at 4:39 PM on November 12, 2023
posted by vunder at 4:39 PM on November 12, 2023
Response by poster: I would like to mark all of these as best answers because you all are offering practical suggestions as well as hope and reassurance. For those recommending magnesium, does it matter what kind of magnesium? My "research" (i.e., googling) suggests magnesium oxide for headaches but that's far from a definitive answer. I'm ready to order some tonight! Regarding menopause, it has been 6-7 years since my last cycle, and a bout of estrogen+ breast cancer a few years ago rules out HRT. I will also make appointments with an ophthalmologist and a neurologist. I really appreciate the answers that pointed out the distinction because I was lumping everything under "eye stuff."
posted by fiery.hogue at 4:55 PM on November 12, 2023 [2 favorites]
posted by fiery.hogue at 4:55 PM on November 12, 2023 [2 favorites]
I have the same problem EvaDestruction has, part of my treatment ended up being soaking my eyes with boiled (not boiling! as hot as you can comfortably stand) water with uniodised sea salt in it, 5-10 mins, morning and night, to melt the accumilated gunk out of my tear ducts.
This is inconvenient and boring as hell! But it really does do the job. Also omega 3 capsules and saline drops! But yes. Go to an ophthalmologist. This is actually a really common issue and you very well might have it.
posted by HypotheticalWoman at 5:18 PM on November 12, 2023
This is inconvenient and boring as hell! But it really does do the job. Also omega 3 capsules and saline drops! But yes. Go to an ophthalmologist. This is actually a really common issue and you very well might have it.
posted by HypotheticalWoman at 5:18 PM on November 12, 2023
I've been having ocular migraines intermittently for decades. My ophthalmologist told me not to worry about them, UNLESS the visual effects haven't gone away within an hour. If the visual weirdness lasts longer than that, get medical attention immediately in case there's a retinal detachment or something else serious going on.
posted by Corvid at 5:20 PM on November 12, 2023
posted by Corvid at 5:20 PM on November 12, 2023
I honestly don’t know what magnesium is best, but I also want to emphasize that when my migraines/auras were at their worst I had to take it twice a day religiously or I would get an aura. I couldn’t afford to miss one dose. It causes diarrhea which could be annoying but it was a small price to pay in order to live my life effectively migraine free. Good luck!
posted by Amy93 at 5:34 PM on November 12, 2023
posted by Amy93 at 5:34 PM on November 12, 2023
consumerlab.com talks about 600 mg daily (taken in divided doses) of either magnesium citrate or trimagnesium dicitrate for migraines. This is one of the articles on PubMed they cite as a source.
posted by gudrun at 8:42 PM on November 12, 2023
posted by gudrun at 8:42 PM on November 12, 2023
You have all my sympathy, as this sounds incredibly scary. My neurologist has me taking 400 mg of magnesium oxide and 400 mg of B2, and both of those have reduced the severity of my symptoms significantly. I also try to drink 80 oz of a fairly dilute electrolyte solution (approx 1.5 tsp of Trioral rehydration salts per 40 oz of liquid, which in my case is 36 oz of water, 4 oz of juice). That seems to help with the fun dizziness that is one of the first precursors to my migraines. Heat, bright light, hormone fluctuations, and drops in atmospheric pressure can all bring one on, as well as stress, lack of sleep, or skipping meals. So…life on Earth, basically, can make things worse.
CoQ10 is supposed to help reduce the frequency of migraines but I have not tried it yet.
posted by corey flood at 10:20 PM on November 12, 2023 [1 favorite]
CoQ10 is supposed to help reduce the frequency of migraines but I have not tried it yet.
posted by corey flood at 10:20 PM on November 12, 2023 [1 favorite]
I haven’t read all of the comments, but from a migraine perspective, I do agree with the magnesium glycinate/riboflavin combo as a starting point. There are quite a few dietary adjustments that you can make as well - caffeine (and withdrawal several hours later) and aspartame/nutrasweet seem to be big triggers for many people. I’m an ENT doc and so I deal more with nose and ear-related migraine symptoms, but the same principles apply. There are lots of good meds with low side effect profiles, but many patients are able to use some supplements and lifestyle modifications for control. Check out Dr. Teixido’s page on migraine management. He’s an ENT in Delaware that has what I have found to be a very useful website.
posted by Fritzle at 12:53 PM on November 13, 2023 [2 favorites]
posted by Fritzle at 12:53 PM on November 13, 2023 [2 favorites]
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