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My visual field is tilted/slanted... Anyone else have this?

Hi all, I’ve been lurking on this website for some time now. I am so glad I found this community of people. Honestly, I’ve not been coping well.

tl;dr - I woke up one morning in August 2020 and realized my entire visual field appeared tilted/slanted and it hasn’t changed since. Has anyone experienced something similar?

Details

My symptoms started in July 2020 and I’ll spare the all the details. In hindsight and looking on this forum, I was having MAV. Midway through August I started to develop head pressure that was between my eyes and was left side dominant along with stuffed sinuses. Occasionally I would get this feeling like something was crawling out of my left ear. Nothing actually came out. Then on the morning on August 23rd I woke with the feeling of something crawling out of my ear. When I woke up I realized that my entire field of view was tilted/slanted to the left…

When I am sitting at desk it looks like if I were to put a ball on the desk it would slowly roll to the left. My monitor looks like its tilted/slanted/crooked. Everywhere I look, the entire world looks like it’s slightly tilted. When I walk I feel like I am walking on a slightly slanted surface. The degree of tilt is persistent and hasn’t changed since I first woke up with it. Some days I have less head pressure and light sensitivity when looking at my monitor. However, the tilt degree is persistent.

I’ve had a CT scan, two MRI’s, VNG testing, rotary chair testing, cVEMP testing, and hearing testing done. Thankfully, all of these came back normal. My neuro-otologist has diagnosed me with VM/MAV and I currently taking 10 mg of nortriptyline and following the migraine diet very strictly. I’ve been taking the nori for the past 1.5 months and it, along with the diet, seems to be helping with the head pressure. However, my perception that the world is tilted has not changed one bit. I am scared.

Has anyone experienced something similar?

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You should find a few references by putting ‘tilted vision’ or similar into the Search box.

Try Pages 8/9? Maybe it’s a another version/hallucination type stuff? Similar to ‘Alice In Wonderland’ syndrome. What did the medics say? MAV can mess with perception. Not likely to be a permanent thing I wouldn’t imagine. Just another symptom the vestibular system’s struggling.

https://www.thewaltoncentre.nhs.uk/uploadedfiles/leaflets/Migraine%20-%20A%20Comprehensive%20Guide.pdf

Yes, I did search for “tilted vision” before, but I couldn’t find much other than one post in which the person mentioned they had something similar. However, the post didn’t seem to get much traction. (For some reason I can’t share a link a to the post…)

I’ve seen some posts where people say they have “tilting” vision, which I interpret as it looks to them as if things are slowing tilting (spinning?). Mine is fixed. I was hoping someone that is currently active on these forums could chime in.

Is is normal with MAV to have symptoms that seem to not change at all while some of the other symptoms do?

Hi, I’m just popping in to say hello and welcome. I can’t say I’ve had fixed tilted vision, but definitely slowly tilting (spinning) vision! I find that everyone is different.

I have a vision issue that I find not many on here has. I understand it’s reassuring when you find someone else with a similar symptom.

Hope you can find an answer and a way to feel better.

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I’ve had rapidly swinging (from side to side) vision. Frickin’ scary! Significantly relieved by Amitriptyline.

I’ve had the swinging from side to side in my ‘vision’ or rather in my visual field but mine, so far, has always been the darkness moving when lying down with my eyes closed.

Yes I have experienced this at my worst. I was walking along the street and it appeared to be at the wrong angle and it was very off putting and scary to say the least. Long story short I’m much better now on 40mg of Amitriptyline for 2 years.

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So you don’t experience it now, ever, occasionally? That’s some success perhaps you should consider setting up a PD and charting your journey. Success like that encourages others?

I believe Jess’s diary is here: https://mvertigo.org/t/mav-after-neck-injury-jesss-diary/17550?u=turnitaround

Might be worth updating.

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Strange. I did look and obviously missed that one. Whoops

Thanks for responding @jess38 ! Your comment gave me bit of hope that I am not alone with this symptom.

I was walking along the street and it appeared to be at the wrong angle and it was very off putting and scary to say the least.

Was it just that one time? Mine is persistent 24/7. Was yours also seemingly persistent until it went away?

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Mine was very persistent, I had constant symptoms, I had also lost my depth perception. I was looking at things in a haze of vertigo, virtually everything I looked at was distorted for 2 years + .There is hope. Believe me I felt very scared and that my life was over at age 37, but now nearly 3 years later I am well again, I will update my diary. I couldn’t have done it without the proper meds though I think.

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Hi there, just like you I have also had that “tilted” feeling and crawling sensation in my right ear. I still get it off and on since 2018.