r/OcularMigraines

I’ve only ever had two really intense migraines with visual aura. The second one was about a week ago now. started while I was driving - I suddenly felt like my right hand was detached from my body (could still feel it but it felt like it was floating), then got shimmers in my right peripheral vision. Then a kaleidoscope fracture moved across my right eye into the center, then went away. Then the pain. All in all it lasted maybe an hour and a half to two hours. I’ve had headaches on and off since then, and the feeling of hands and arms nit being attached (both now), along with general dpdr and neck pain have remained.

Anyone with similar experiences? How long is it until it finally fades off and you feel more normal? I can’t tolerate ANY meds unfortunately, so I have to just wait it out.

Thanks in advance. What a nightmare.

I've been building a migraine tracker for a while now and I'm at the point where it generates a report like the one attached, pulled from my own logged data. Before I put this in front of anyone else, I want to know if it's actually useful or if I'm missing what people who deal with migraines regularly actually need.

A few things I'd love feedback on:

• Does this look like something you'd bring to a neurologist or GP, or is it missing the stuff they'd actually ask about?

https://preview.redd.it/0tzoj0msasjh1.png?width=697&format=png&auto=webp&s=db5d3e8e65479dd3340a3d4c099596a7e734250b

• Is there anything here that feels like noise — data you wouldn't care about?
• Compared to what your doctor's own visit summary usually covers, what's missing?

App isn't live yet — genuinely just trying to get this right before I ship it. Any feedback, even harsh, is welcome.

So after many years, I’ve determined that the one single consistent trigger to my migraines are when sunlight reflects off chrome parts on cars as I’m driving.

I take varapamil daily as a preventative, so it usually never culminates in a migraine, but I get the aura symptoms (my fovea starts going blind) quite a bit when this happens. If my morning dose was taken very early in the day, and I see these reflections late in the day before my second dose, then I usually end up getting a full on migraine in which case I take rizatriptan after holing myself up in a dark room.

And here’s the kicker: what helps prevent the aura episode from turning into a full on migraine is if I go outside and stare directly at the sun! Yes, that makes it feel better and can often can make the episode go away. My neurologist is speechless. He suggested FL-41 glasses, which I haven’t done yet. Has anyone tried them, and do they work?

This is my fourth pregnancy. Does anyone else get visual migraines while pregnant? They look like little fuzzies going across my eyes last for about maybe 15 to 20 minutes and then when it’s done it sometimes leaves me with a headache and sometimes not. My blood pressure has always been very low when pregnant and also my doctor is aware of this. It has nothing to do with any of my blood work or anything like that either.

**Anyone still get breakthrough aura on Nurtec preventative? And does your aura happen after waking?**

I started **Nurtec 75mg every other day for prevention on 7/16**. Before starting, I was having aura pretty frequently, including 3 within about 10 days.
I made it **28 days without an aura**, then had a breakthrough today. It was my usual pattern; woke up with a headache(rubber band around the head pressure). could tell an aura was coming, and about 20 minutes later it started.

Curious about two things:
If you take Nurtec every other day preventatively, **do you still get occasional breakthrough migraines/aura?**

For those with migraine with aura, **does yours tend to happen within an hour or so of waking up?** Mine seem heavily associated with mornings.

For more context, I normally get one to two a year for the last 15 years and this year alone I’ve had eight. Several of which were in the last two months. I had an MRI, CT, and two EEGs.

Bonus: anyone notice **hormonal/cycle changes** making breakthroughs more likely even while on a preventative?

**TL;DR:** Nurtec preventative has gotten me to 28 days between auras, but I had a breakthrough today. Wondering if others still get occasional breakthroughs on Nurtec and whether your aura tends to happen shortly after waking.

Has anyone ever had numbness on half the nose, mouth, and arm? I know this can be part of an ocular migraine. It’s prettt scary.

It began with the vision aura. I literally convinced myself I was having an aneurysm or I was about to pass out while serving. My peripheral vision started getting really blurry like there was blind spots and then before I knew it I was seeing all the colors in the restaurant blurring together. It was hard to look at people’s faces and take orders. It was happening in both eyes and getting worse as I walked through different parts of the restaurant with different lighting, which I now know can be a trigger. it lasted about 30 minutes to an hour and then after that, I got a crazy bad headache that still hasn’t fully gone away. There was also a crazy thunderstorm tonight with lightning, which, for my research says can be a trigger also. This has never happened to me before. of course I’ve gotten bad headaches but nothing with my vision going out and not being able to see straight. i’m not even sure why I’m writing this. I’m just scared it might happen again. I’m 18 years old and I’ve never had one before but my mom does suffer with them so maybe it’s a genetic thing that’s finally starting to develop or maybe it was just the thunderstorm. I’m just terrified it’ll happen again especially at work.

27F and just had my first ocular migraine today and It was SO scary. I thought I was going blind as I never heard of this before or had one. After 10 minutes of seeing a zig zag "floater"/blurred out vision/vision got very narrow and couldn't see anything in my peripheral vision i called the eye doctor. The eye dr did a thorough exam a hour later and saw nothing wrong and even dialated my eyes.

Just 10 days ago I started a new birth control and noticed I've been extremely on edge, very bad mood swings, depressed, with through the roof anxiety. I don't have mental health issues and this all came out of no where (but really a few days after starting the pill). Last night I also couldn't sleep as I was very on edge. Is this likely what caused the ocular migraine? I also didn't get a headache immediately after this happened, but about 2-3 hours after the visual disturbance i got a migraine.

I've gotten 4 auras in the last week. Never have the headache afterwards. My area has heavy smoke from forest fires and I work mostly outside. I'm assuming that is the cause but I'd love for someone to confirm my suspicion

My wife has been suffering with a migraine for 2.5 weeks. She has eye strain / light sensitivity which leads to headache. Hard to focus her eyes. Did anyone have something similar and fixed it? She saw the Ophthalmologist and nothing physically is wrong with the eyes.

Day 6 she tried rizatriptan and day 7-8 naratriptan at advice of her neurologist. She became increasingly light sensitive after naratriptan and stopped taking. She has an allergy to NSAIDs, bad reactions from steroids, asthma and severe stomach issues which complicates the treatment. Otherwise would have take the standard steroid / NSAID course.

She seems to get bad side effects from every drug no matter how benign. She has prescriptions for Nurtec and Qulipta but has been afraid to take this late in and not work—plus her risks with side effect.

I realize this is a crazy set of circumstances but if anyone has suggestions or help I would be incredibly grateful.

Anyone have experience with aura in one eye? 7 years ago, I developed occasional episodes of aura in one eye that usually last 10-30 minutes, and then go away without other migraine symptoms. They look like the after images of looking into a light, except they last longer. I have them maybe 2-5 times a month. They’re weird, but generally a non-issue.

When they pop-up, I check to see if I have it in one eye or both. If it’s one eye, I know it’ll go away within 20 minutes or so. If it’s both eyes, I prepare myself for a full migraine - zigzag, peripheral vision loss, then the painful migraine attack. I’ve brought this up with PCP’s, and they’ve shrugged it off as a weird migraine-sufferer-thing.

Today, however, I’ve developed a small aura in my left eye that hasn’t gone away. It’s been nearly 5 hours now. I have mild headache along with it. I’ve been resting, but I still have it. Google is telling me to go to the ER, but that feels extreme?

Triggers for these things are usually stress, weather changes (such as an increase in humidity), and hormonal fluctuations.

Any insight or experience with this would be most helpful. Thank you!

UPDATE: Went to urgent care, who sent me to ER (and told me urgent care is useless for neurological stuff). ER did a CAT scan. Results were normal, so they sent me home and ruled it an atypical migraine, told me to follow-up with specialists. I still have the same aura in one eye, now 19 hours later.

My eyes have always been sensitive to light, even before my MS diagnosis. But it wasn't anything out of the ordinary, just mild discomfort depending on the situation.

However, since last month I've started experiencing extreme photophobia that is incapacitating me. Any type of light makes my eyes burn. White light and LED lights are the worst. I'm having to wear sunglasses 24 hours a day, even indoors.

A neuro-ophthalmologist examined my eyes and found nothing wrong. It's not dry eye, uveitis, glaucoma, or ON.

I think it's important to state that these symptoms started exactly two days after I began taking modafinil for fatigue, prescribed by my neurologist. I researched online and saw that migraines and visual problems are a common side effect of modafinil. But it's been several weeks since I stopped taking it and the extreme light sensitivity persists.

Finally, I went back to my neurologist. He wasn't sure if it's a migraine, but he's treating it as if it were. He prescribed venlafaxine (effexor) to treat this hypersensitivity, but I haven't noticed any improvement yet.

I'm not sure if it's a migraine because I don't feel any headache or aura. The discomfort also doesn't occur in attacks as is characteristic of a migraine. I only feel this sensitivity to extreme light all the time. Right now, to write this text, I'm having to wear sunglasses and I had to keep the computer screen brightness at the minimum.

I'm glad it's not optic neuritis, but I feel blind. Having my vision so impacted in this way greatly affects my cognition.

PS: Before anyone mentions FL-41 lenses, I'm using them now and they help a little, but sometimes the discomfort from light is so intense that even these lenses aren't enough.

TL:DR has anyone had a retinal migraine cause permanent vision changes or is my retina specialist gaslighting me?

I have had migraines my whole life. Like, my earliest memories are waking up with a migraine and throwing up in bed. As I got older they transformed into complex migraines with aura and ultimately to hemiplegic status, now fortunately well managed thanks to zepbound, ajovy, and ubrelvy in my late 30s. However, three months ago I woke up to what seemed like was going to be a migraine aura, with a blind spot about the size of four digits on my credit card if held at normal "reading distance" (my best description). I waited for it to change to colorful zig zags, to grow and move, for any other symptoms to appear, but nothing happened. It also notably was only in one eye. The blind spot didn't grow or change or move for hours, so I called my eye doc to ask to be seen that day in case there was something wrong with my eye.

They did a battery of exams and tests, and found no issue. They sent me to get an MRI, nothing. They sent me to a retina specialist, who DID find a spot on my retina that is in the right spot to be causing a blind spot in that location (it's just up and to the left from my focal point. For example when reading this text, the word up two rows and two or three words to the left of where I'm looking is gone). He had no better explanation for what it might be and chose to diagnose it as a retinal migraine. I disagreed, knowing visual migraine issues are not permanent. However, I am but a lowly HR masters graduate and not a Harvard educated ophthalmologist, so I let it go for the time being. I agreed to come back in three months for another scan under the assumption the blind spot would be gone AND the spot on my retina would be gone. That followup is in two weeks and the blind spot is completely unchanged.

Is this doctor wrong like I think he is? Has anyone had a retinal migraine that actually caused permanent vision changes, or is he using my history of migraine as an excuse to not do more research into finding the true explanation?

63 year old female and was sitting reading. I noticed a blurry section in my book. I then got a little concerned and closed my eyes and there was a zig zag flashing triangle in my vision. Both eyes and both closed and open. I got concerned. Went to tell my husband. He had me lay down. It was like a zig zag bright dancing triangle. It kinda went away after less than ten min. Like a pond rippling out to the edges. Zero other symptoms. I recently began vaginal estrogen and buspar both within last month. I’m kinda freaked out.