Ocular Migraines

Because ES isn’t well known the journey to proper diagnosis can be long & frustrating. There are many posts on our forum with stories similar to yours. I’m so sorry you’re getting the run around. Your symptoms do seem like they could be caused by ES & scarring from tonsillectomy can be one of the causes of ES.

We have a Self Advocacy category with great info on the home page. Reading through that may be very helpful to you going forward.

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I have had migraine with aura, which is like what you are describing, but followed by migraine pain. Mine were triggered by head posture, with styloids interacting with something in my neck when I looked down. Styloid removal to skull base definitely helped. I still get one occasionally, but the frequency is significantly reduced.


So frustrating for you, especially when the waits for appts/ tests are so long at the moment…I did have to have an MRI to rule anything else out- it was helpful as I was getting other neck pain as well as the ES pain & was diagnosed with a prolapsed disc C5-C6 - so worth getting, another hoop to jump through on your journey sadly. I’m not sure how easy it is in the UK for us to get copies of scans, I never thought to ask, but maybe you could get a copy of the dentist report & x-ray so you can take them with you another time?
As tonsillectomy’s a known cause of ES it’s a shame he wouldn’t consider it!

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Hey Jules,
Yes I agree as my symptoms overlap, I think it was worth while to rule other things out. Just have to wait now, it will be 3 weeks on Wednesday so hopefully not much longer.
I did get my dental report and X-rays emailed to me but the day of my appointment at maxillofacial I left my phone in the car :sob: So frustrating and just my luck! He said he was going to get his secretary to contact the dental practice. More set backs hey ho!

I have found a video on YouTube if anyone is wondering what occular migraines can visually look like.
From my experience of them, I find the video is pretty accurate although I get less vivid colours and more shimmering.



For those of us with eye related symptoms getting eye pressure tested is a good idea I believe. My affected eye did have a higher pressure. Have since learnt that eye drops for glaucoma patients can help to reduce eye pressure if high. If no high pressure then test does no harm and provides some reassurance. D


That’s pretty crazy @Kellymarie! Must not be a whole lot of fun to get those so often. Thank you so much for the link. The short video is very educational!

Hi, so today I got my first kaleidoscope migraine ever I believe but it has now lasted almost 24 hours and isn’t going away -it’s only in my left eye. I have had ocular migraines before (losing partial vision) but this is new - was not expecting this post op. Any tips or advice appreciated. How worried should I be about this? D

That’s rough, might be worth emailing Mr Hughes? I hope that it goes soon :hugs:

Trying to remind myself at 3 weeks it’s still early days of recovery. But new unexpected setbacks are hard to accept. Head just bad again right now. Will see how things go & decide early next week what to do next. D

@kellymarie I am very sensitive to light. Even though I have dark brown eyes, I can’t go outside without sunglasses. Of course, I do live in FLorida so I am going from very bright all year when I go inside. Also I had my Eagle surgery done by a maxillofacial surgeon.

Hi, so saw my eye surgeon this week and he agreed that recent Kalidescope migraine (and past Ocular migraines) is caused by my brain/Neuro issues, not by the eye itself.

While I can’t be sure that my eye problems this year have been caused by abnormal fluid trapped in skull & IHH, I do know that my eyes have in the past felt very affected by the pressure in my head.

So if anyone does feel pressure in their eyes from VES/compressed JVs then do go and get your eye pressure and other eye things checked out at opthomologist practice. You can get eye drops to lower eye pressure (used in Glaucoma). In my case retina in left eye was detaching after vision changes over a few days and had to have emergency surgery to save my left eye sight this summer.

Sharing so others know to go for eye checks if pressure high and prompts vision changes. D