Hi all, Iāve been lurking on this website for some time now. I am so glad I found this community of people. Honestly, Iāve 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 hasnāt changed since. Has anyone experienced something similar?
Details
My symptoms started in July 2020 and Iāll 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 leftā¦
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 itās slightly tilted. When I walk I feel like I am walking on a slightly slanted surface. The degree of tilt is persistent and hasnāt 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.
Iāve had a CT scan, two MRIās, 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. Iāve 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.
You should find a few references by putting ātilted visionā or similar into the Search box.
Try Pages 8/9? Maybe itās a another version/hallucination type stuff? Similar to āAlice In Wonderlandā syndrome. What did the medics say? MAV can mess with perception. Not likely to be a permanent thing I wouldnāt imagine. Just another symptom the vestibular systemās struggling.
Yes, I did search for ātilted visionā before, but I couldnāt find much other than one post in which the person mentioned they had something similar. However, the post didnāt seem to get much traction. (For some reason I canāt share a link a to the postā¦)
Iāve seen some posts where people say they have ātiltingā 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, Iām just popping in to say hello and welcome. I canāt say Iāve 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 itās reassuring when you find someone else with a similar symptom.
Hope you can find an answer and a way to feel better.
Iāve had the swinging from side to side in my āvisionā 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 Iām much better now on 40mg of Amitriptyline for 2 years.
So you donāt experience it now, ever, occasionally? Thatās some success perhaps you should consider setting up a PD and charting your journey. Success like that encourages others?
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 couldnāt have done it without the proper meds though I think.
Hi, having the same for 3 months constant. Weirdly, why now? I have bilateral vestibular hypofunction for 5 years.
Did an mri, neurologist, ophthalmologist. Waiting for neuroopthalmologist and ENT appointment. Long waiting time for neuroopthalmologist, that I could have something to do with the vestibular things, I didnāt think of this. Itās horrible and seems to change with head positioning. Head tilted left - right goes up and visa versa, sometimes in between.
Thought of strabism, cyclophoria. But I also āfeelā tilted had this for a couple of months after onset of bvh, but no vision problem back then.
Well see what those appointments will reveal, I need some answers, fast.
Have you ever been checked for cyclophoria? Phorias are latent strabism, - tropias are manifest forms.
Exophoria/tropia = outwards
Esophoria/tropia = inwards
Hyperphoria/tropia = upwards
Hypophoria/tropia = downwards
And
Cyclophoria/tropia = around the axis. This would cause tilted vision. Iām gonna get checked for this
Has anything changed or new discoveries? If so, what helped? I remember having this a long while ago when I first developed my symptoms in 2014 and it went away after sometime or I habituated to it who knows but recently it came back hard and aggressive same thing down to a T with the tilt to the left. I have to play video games with the TV tilted so I donāt freak outš . But anything youāve discovered or have seen help you recently please let me know.
i get a feeling where one side of my face/eyes are further out from my head than the other side. I think this is a perceptual aura thing. itāll legitimately feel like my right eye is out 3 inches further in front of my face and my left is staying in the same place.
I too am having these symptoms. Woke up yesterday feeling like the house was all slanted to one side . It is perfectly level, but my depth perception is skewed. I currently am experiencing severe gallbladder issues and am scheduled for surgery and just started Diabetes meds. and thought that may be connected. Not Sure. But it is scary to say the least. thought I was losing my mind. Glad to see others are experiencing this as well ā¦
My vision has been slanted for over 6 months now. I have begun noticing it all the time in everyday life. Both eyes are affected by this and Iāve had a full eye test including an OCT scan with no problems being found. Iām surprised by the lack of information about this issue online but hope that someone in this threat can help me out.
Itās your vestibular system, and probably to do with one side not agreeing with the other. Have you tried a vestibular suppressant like e.g. Amitriptyline?
Itās horrible and seems to change with head positioning. Head tilted left - right goes up and visa versa, sometimes in between.
had this for a couple of months after onset of bvh, but no vision problem back then.