Ocular Migraine? Aura without headache?

Similar story. Severe migraine age 12, cont'd throughout life. Feb 2025 had been bent over, stood up & became VERY dizzy which progressed to nausea, light sensitivity to ill to move, very bp & taken by ambulance to ER; stayed overnight. Initially thought is was ear crystals out of place, vertigo. After several appts for heart, stroke, bp, mri's wwo dye, brain scans & meds that made me too sleepy to function; no longer taking. 1 ENT & 2 Nuerologist: ENT performed VNG = diagnosed 81% damage to left side of vestibular nerve. 2 nuerologists: The "auroa" is the migraine. Was given "rescue" migraine meds episodes of the aura. Don't take the daily meds. 6 months later still dizzy but not as bad, difficulty with visual/image convergence & images jumping. Turning head to a full left/right triggers major dizzy. PT rehab gave multiple exercises to retrain the brain to compensate for the damage. For me - the full left/right head turns are the ones that force brain to relearn/compensate. Was told to start slow allowing vision to catch up then gradually increase speed. The nuerologist also said you can have headaches "migrain storms aka electric shocks" that begin at the brain stem upward to the optical, the storms can also go under the brainstem. Many variations of the "storm" - silent migraines. Barometric pressure drop also triggers dizzy days. Hope this helps. See ENT for VNG testing.

Must have been so frightening. What did they say caused the damage to tbe vestibular nerve?

Could have been from shingles virus but also out of country in December and had optical pain while snorkeling. Was told it can take six week for an infection or "flare" to present symptoms which does correlate to being out of the country during that time.

Hello @swalsh57

Welcome to Connect. I see that your migraine flare might be from the Shingles virus. How long ago did you have Shingles?

Very similar history. Mine are wavy lines and gold rings around the eyeballs. Neuros say they’re no big deal but of course they don’t have them. I know bright and flashing lights trigger mine, as well as nightshade vegetables, soy and aspartame. Summertime is worse.
I take gabapentin and Vimpat for seizures and tremors and they control my headaches a lot. I have 10 different kinds which have developed over 60 years—frontal, migraine with aura, temporal, sinus, orbital, cluster, “sledgehammer” on top of my head, “ice pick” through both of my temples, “burning match” in the middle of my brain and “boot” to the back of my head at the neck. Nothing was controlling these and the pain was unbearable until I went on those 2 meds together after I tried other meds. Sometimes I have to add the Excedrin equivalent (caffeine, aspirin and acetaminophen) if lying in a dark room doesn’t help. It is what it is

Scotoma refers to the "cut outs' in vision that often occur to me when a migraine is beginning, as well as the surreal feeling experienced as symptoms compound. For all the years l have had the whole recorded symptoms of migraine, l can tell when one is on the way. If l am driving, l start to see changing blurry spots in my vision that jump around. It gives me enough time to pull over and either wait things out or call someone to drive me home. This doesn't o happen too often, the main take away is we "Migraineurs" get pretty good at assessing when we are about to have an episode. Bright sunlight can be a trigger but not always. That's been the struggle over the years. I can identify common triggers but they don't always cause an episode. I've learned to take a preventative approach. Eg get enough sleep, avoid constipation, bright lights, esp. Fluorescent, certain foods, alcohol ( a vaso-dilator) stress and on and on. Many episodes l have had are exactly like a TIA, Transient Ischemic Attack or 'mini-stroke' which includes parasthiesia of half my face, arm, fingets and tongue. That's a challenge as one gets older, if symtoms last and also include paralysis, weakness and drooping of one side, often the left, then it very well could be something more than migraine and warrants a trip to the ER. Take good care and know that you are not alone. Between my opthamologist, neurologist and family doc l've been getting good monitoring and care. Err on the side of caution with the symptamatology and have understanding medical help. Stay the course.

I've gotten them without apparent triggers since my right temple side cluster headaches ceased. The auras have mostly been without headaches since August of 2013. I have recorded them in my Headache Journal. Occasionally the head pain has been fierce. One time enough to go to the ER because I was totally debilitated when the pain would not go away. Another time when I took 11 ibuprofen over a period of 4 hours in an effort to make the pain stop. My PCP was quite concerned about that but I told her it was not likely to happen again. They generally seem to begin when I am sitting calmly and notice the aura and blind spot primarily right-sided but occasionally left. I can go for months between them and then it will be several in a week. Headaches are such a mystery, it is no wonder there has not been more interest in the Why of what causes them.

Hi I have ocular migraines ,and lots of patterns and colours after them for about a week ,does anyone else experience this crazy visual disturbance ,also just been given Topiramate Milpharm by my GP to take anyone taking this and is it OK?

Hi, @honeysuckle4. Welcome to Mayo Clinic Connect. Having a visual disturbance like that would be tough.

Here is some Mayo Clinic information on the drug topiramate that may be useful:

- Topiramate (oral route) https://www.mayoclinic.org/drugs-supplements/topiramate-oral-route/description/drg-20067047

Hoping that here in this discussion you can connect with other members talking about ocular migraines and that they will give you any thoughts on Topiramate Milpharm. Please meet @milliemae @esikora @californiazebra @lakesofdelray @lakelifelady @pacer3702 @lacy2.

With the patterns and colors after the ocular migraines for about a week, are you able to still get around and do things at all?

Hello @honeysuckle4, and welcome to the Headache/Migraine support group on Mayo Connect.

It sounds like your visual disturbances, following your migraines, are difficult. How long have you been dealing with ocular migraines? Are these visual disturbances new to you?