r/OcularMigraines

I’m a 33-year-old female and about a year ago my life completely changed out of nowhere. Before this started I was healthy, active, lifting weights regularly, and training for my first marathon. Then almost overnight I went from preparing to run 26.2 miles to barely being able to walk on a treadmill for the past year.

My biggest symptoms have been:
- Daily headaches with frequent migraines
- Severe painful knots/tightness in my upper back, neck, shoulders, jaw and around my eyes (one of my worst symptoms)
- Episodes of dizziness and feeling like I might pass out when standing/moving around (POTS-like symptoms)
- High heart rate
- Shortness of breath
- Adrenaline surges, especially at night, waking up with my heart racing
- Extreme fatigue and “crashes”
- Light sensitivity
- New Raynaud’s symptoms
- GI issues (including an H. pylori and leaky gut diagnosis)
- One thing that’s been consistent from the beginning is that eating or even digesting food often makes my symptoms much worse, especially my headaches/migraines.

I’m struggling to understand whether all of these symptoms are connected or if one problem is triggering the others. I don’t know if the migraines are driving everything, if my autonomic nervous system is causing the migraines, or if something else is tying it all together.

I’ve tried Botox, Emgality, Nurtec, propranolol, occipital nerve blocks, trigger point injections, physical therapy, dry needling, and numerous other therapies and supplements. Dry needling has helped the painful back/neck knots the most, but I’m still unable to function anywhere near my old normal.

I’ve had brain and spine MRIs, multiple echocardiogram, extensive blood work, rheumatology evaluation, and autoimmune testing, all of which have been essentially normal. The only thing still being explored is whether hormones may be contributing since my symptoms seem to fluctuate with my menstrual cycle.

Has anyone had a similar combination of symptoms?
What was your eventual diagnosis?
Which specialist finally figured it out?
What treatment made the biggest difference?

I’m not looking for a diagnosis—I’m just hoping to hear from people who have been through something similar because after a year of this, I feel like I’m missing a piece of the puzzle.

I experienced a strange vision disturbance yesterday that lasted about 10 minutes. I was looking at my phone and suddenly random letters and words were smudged out. Like someone erased them here and there. In those spots it looked kind of shimmery, like an oil on water effect. I went to the ER and got blood work, CT scan, and EKG - all normal. Diagnosed with transient ischemic attack and waiting for follow ups (MRI and echocardiogram). l understand there can be overlap between TIA and migraine symptoms. The ER seemed dismissive of it being a migraine because of how quickly it came on and resolved. Also I had a mild concussion 3 weeks ago (feel fine now) but that obviously could be factor.
Anyone out there have similar vision issues with ocular migraines? The blotting out of letters was so odd and disconcerting.

Has anyone here had any success in a daily medication that has stopped aura migraine all together?

I am 34 and have had them for my entire life. Last night I had the zig zag eyes, blurry vision, slurred speech, confusion and pins and needles. I know the exact pattern of these and the anxiety they bring on is so bad. I’m on the mini pill progesterone only so I don’t know is that contributing or what. But aura migraine is so horrible. Feeling like everytime you get one will be the time you don’t recover, or being afraid of large crowds or concerts because of the lights and possibly triggering one.

I have been reading beta blockers help prevent them? Any advice or experiences at all are welcome! Thanks

Basically the title.

Usually I have very mild ocular migraines about once or twice a year. The typical thing. The visual disturbance, then headache for a few hours, then it's fine.

But this week...

Monday afternoon I suddenly had the scintillating scotoma. Had to run a short errand, which usually is fine. But that time I was severely nauseous and then the horrific headache started. It felt like my left brain hemisphere and the muscles around my face were on fire. My tongue and right side of the lips went numb, my right arm went numb. I laid there in agony and ate magnesium and painkillers. I was very, very afraid.

The next day, in the afternoon, around 24 Hours after the first one, it happened again. It wasn't quite as bad, but definitely up there.

Today I still have a headache. My brain feels like it's been burned. It's hard to explain.

Migraines do weird shit, but when it's something new, it does worry me. Couldn't get an appointment today to get checked just in case, maybe tomorrow.

The thing is, I never found a trigger. It just happens. Looking back though it was usually in summer. So maybe heat? It started around the time the heatwave in Europe subsided into a thunderstorm, so maybe it's just weather woes.

I checked my BP, it is perfect. Some people say it could be B12 deficiency or not enough magnesium. I took both today just in case. Trying to have a chill day today bc I'm really afraid it could come back again.

What are triggers you definitely found out? What's stuff that helps you?

Has anyone here had any success in a daily medication that has stopped aura migraine all together?

I am 34 and have had them for my entire life. Last night I had the zig zag eyes, blurry vision, slurred speech, confusion and pins and needles. I know the exact pattern of these and the anxiety they bring on is so bad. I’m on the mini pill progesterone only so I don’t know is that contributing or what. But aura migraine is so horrible. Feeling like everytime you get one will be the time you don’t recover, or being afraid of large crowds or concerts because of the lights and possibly triggering one.

I have been reading beta blockers help prevent them? Any advice or experiences at all are welcome! Thanks

I have been struggling with ocular migraines since like 10 years old. I had years without it. In recent years, I started having them a few times a year again. I assumed it was due to hormones and stress.

I have been diagnosed with PCOS, Insulin resistance and excess androgens.

My endocrinologist put me on Aldactone 100mg a day and Metformin (Glucophage) 2000mg a day.

I was also thinking about starting contraception to regulate my periods. Gynaecologist prescribed Belara (One film-coated tablet contains 0.030 mg of ethinylestradiol and 2 mg of chlormadinone acetate. Excipients with known effect: lactose monohydrate 69.5 mg.)

She mentioned we could also try YAZ...

She told me that she does not know if there are any contraindications.

I googled and tried asking AI, and it was said it could cause problems if I have migraines with aura? I haven't had a migraine since February, when I started taking metformin (whether that's connected or random, idk).

Could anyone tell me if this is a good combination?

Should I use them?

Would there be a difference if I only used it for a month or two or a longer period? I just want to prevent getting my period on vacation, since they are very irregular and I never know when it's coming.

Thank you for any info you can give me...

I need to share this with someone. Yesterday at 6:24 PM, I experienced the worst aura migraine and the worst pain of my entire life. I am a 24-year-old female. I’ve been getting aura migraines for four years. They started as just once a month before my menstrual cycle. Come the end of 2025, I have started getting them daily. One week I got them every day for seven days. Now June 2026 I experienced the worst one yet. I was in the living room with my sister watching a movie, that’s when my vision started to go. I knew what this meant so I went and took some ibuprofen and got my ice pack for my head out of the freezer. My vision leaving usually last about 30 minutes, this time it lasted one hour. I then went numb in my right arm and hand. Later, I went numb in my left arm and hand, and also my mouth. This is when the migraine started. I begged my family to take me to the hospital, the pain was unbearable. I threw up about six times in one sitting because of how much pain I was in. I couldn’t even lay on my head because it hurt so bad. All I could do was sit straight up and whine and groan. My mom gave me melatonin, but I threw that up. My family tried to tell me to lay down but I could not. Thank God they were over my house for this. All I can remember about last night is begging God to take the pain away, I can remember rocking back-and-forth, and the scariest thing I can remember is knowing that there was nothing I could do to make that pain go away. For someone who has been getting these aura migraines for four years, I never knew that I wouldn’t be prepared for one. Now I am terrified to get one like that again. These migraines are debilitating, they are ruining my life and I don’t know how much longer I can take it. Can someone please share a similar experience. Not that I would want anyone to go through what I went through, but I am sure there is someone out there.

I’ve been suffering with migraines for 5+ years. I have tried all the triptan medications I have tried naproxen, I have tried every medication that is recommended under the sun. None of these have helped. I recently have been experiencing numbness in my left arm and hand. I had vision loss in my left eye which eventually came back but since it has been very blurred. Vomiting. And my left side of face is swollen. I went to a&e, and was told I need a referral to neurology & until then have naproxen, which clearly isn’t working. They have now ruled out a stroke too. What could it be and what can I do?

My aura migraines are mostly caused by light sensitivity. But they scare Me so much all I do all day is worry a light I look at is going to make me have one.
Anyone else have this bad anxiety ? How do I help it. 🙏 thanks

Hi everyone, looking for some advice here. I start having debilitating migraine symptoms at the start of this year. The worse were extreme pain with light and blurry vision. I was diagnosed months ago with chronic migraine but I don’t actually get migraines (def not with aura), I get brutal light sensitivity and vision issues that last weeks on end. I am not sure if I have the right diagnosis tbh. After 4 months I was finally able to get a new family doctor who took my issues seriously and start medication which was propanolol. Before starting medication I was absolutely miserable, the light sensitivity was so bad I could go outside or have lights on inside would literally go to the washrooom and shower in the pitch black to avoid head pain. After a few weeks of taking medication I started to feel better and have hope. My medication was increased and all my light sensitivity pain and headaches seemingly went away. I went to see my neurologist because I was having vision trouble again (focusing issues and blurriness) and went to see her whether it was related or not to cover all my bases. I was pretty down/ low mood at that appointment cause I have been very stressed about my vision and not being able to work. She decided at the end of my appointment that the propanolol is causing me to be depressed (which it is not, confirmed by my psychiatrist) and told me she was not comfortable pressuring me that medication anymore. For context I don’t feel depressed, the anxiety I have felt is based on my vision problems and stopping my migraine medications makes that 1000% worse. Anyways, she told me to taper off for a few weeks and then go medication free for two weeks, then start my new meds which is candesartan (sorry if I misspelled that). A few questions: do I have to wait a full two weeks to start a new med? My migraine symptoms and light issues are coming back and am now feeling worse than when I went to see her. And has anyone had vision issues caused by candesartan? Or any other information/ experiences on that medication would be appreciated. Thanks in advance.

I was sitting at home, doing what I do when all of a sudden my right eye vision started getting darker and darker until eventually it was completely black.

It was like someone pulled a dark grey blanket over my eyeball, zero pain, it lasted for 2 to 3 minutes and when the vision returned it came gradually, in jigsaw partitions

I was naturally terrified so I immediately went to the hospital. They kept me overnight and ran a battery of tests, everything was negative.

Neurosurgeon took a look at my MRA and MRI of my brain and called it as ocular migraines. I’m 43 and I’ve never had one of those in my life. Guess this is just one of the many perks of getting older I keep hearing about.

I guess I’ll be a regular viewer and commenter here now, hi everybody.

every time it happens I tell myself I’m going to pay attention and remember what led up to it so maybe I can understand it better next time. But afterward I mostly remember the visual part and the rest of the day feels weirdly hard to put together. I’ll sit there thinking what did I eat, did I sleep badly, was I on screens too long, was I stressed… and suddenly I’m not even sure anymore. Then a few days later I end up convincing myself I found the reason even though I honestly don’t know if I did. Starting to wonder if other people actually remember the lead up clearly or if this is just part of it.

So these are my MRI results, I’m 25 and have always had headaches ranging to migraines. Started getting ocular ones in 2022 which resulted in a MRI, which showed everything was completely normal, then my eyes were messing with me again and I got another, once again showed nothing.
This was my MRI from today because I’ve felt like my eyes have gotten worse, so I self payed and got another one bc I knew my dr would just be like… it hasn’t been a year since my last one.
But this is a new finding, On T2 and FLAIR sequences 2 small foci of increased signal are seen within the subcortical white matter of the right frontal lobe anteriorly near the operculum. This is nonspecific but can be seen with etiologies such as migraine-type headaches though demyelinating processes can have a similar appearance. Clinical correlation is recommended. No other signal abnormality is seen within the brain parenchyma.
This wasn’t noted on my MRI last year (July 2025) but it was also done at a completely different facility and state as my 1st 2 were done.
I guess is this normal? I talked to my primary care dr and he told me “basically… they found nothing” and that these were common with migraines (I mostly have flares of ocular migraines, but occasional migraines that doesn’t involve my eyes) but it freaks me out, because 2?? And it’s been a year only a year since my normal last one. He said I could see a neurologist if I want but he believes it’ll be a rabbit hole I’ll go down that ends up diagnosing me with …. Migraines 😅 so just looking for some relief or stories alike???

Hello i wanted to share what i have been experiencing lately & also see if anyone can relate to my symptom. I have always suffered from migraines likely due to my own lack of care such as being dehydrated, not sleeping enough, or not eating properly. About 3 years ago i was at work and had my first aura migraine. It started off as me not being able to see in the middle of my vision, it was just like a bright light in the middle of both my eyes and i couldn’t see the center. Shortly after i ended up having a bad headache and took medicine and that was that. About a year later during my first pregnancy i had another aura migrane but was totally convinced it was a stroke because it was different from the last. This one started with “weird vision” i could see but also felt like i couldn’t and was in a dream state. It was followed by my tongue cramping, lips cramping, one arm and hand cramping & i did some test at home to see if my balance was equal on both sides as well as my smile and it was so i rode it out and once all the symptoms stopped i remember one side of my brain feeling so sore for the rest of the day, as if someone hit my in the head with a hard object. About 18 months later i experienced another one, this time the aura was horrible i couldn’t see about 50% of my vision, i was seeing this flashing circle in the middle of my vision that kept changing colors, i thought at first i accidentally touched drugs because i had no headache just this vision issue. The aura stopped about an hour later & then the typical horrible migraine, left side arm cramping and hand cramping, then my tongue and my lips. I went to the hospital because the cramping wasn’t going away, they did some typical stroke test with smiling, following the dr vision, took my blood pressure & then diagnosed me with a migraine with aura, and gave me tylenol and motrin, sent me home. they did offer a mri but i declined because if i don’t need the radiation exposure i prefer to skip it. the same night again my head hurt only in one side and it felt like i got hit in the head with a baseball bat. now in the last week i have had 2 more migraine auras. one started with the typical vision problems, followed by a horrible migraine, face and arm cramping on one side and the sore brain feeling for the rest of the day. the other one started in my neck, i remember feeling a very sore pain in my neck, then of course the aura & the rest of the symptom. one thing i’ve always noticed is my brain is so sore after each one of these. can anyone else relate?