I donāt have my normal vision back yet, still distorted and I think due to extreme photophobia, itās improved with Ami, I used to have wobbly vision Kon but itās stable now no more wobbles which were horrendous, the meds have helped that aspect. Hang in there Kon, how are you going with your meds?
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Interesting I think my only issue with MAV at the moment is head pressure and weird vision. I got some reason never had a balance problem. I also think I have photophobia. Leaves or plants or grass can look very bright on a sunny day. Sometimes too strong. But today I noticed some improvement
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Thanks for the answer @jess38. The meds are helping my anxiety a lot, and headaches at some point. To be honest I saw only a small improvement but if I delay any of the meds I am back to 0. I have a strong feeling my eyes are behind my dizziness cause of a vestibular dysfunction. You know my vision feels like it bounces when I move my head, a feeling like you wear someone elseās glasses.
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Thatās OK Kon, Iāve only been on meds for 4 months and I may need to go up but 30mg of Ami really helped with the wobbly dizzy vision, how I just have the overstimulated vision feeling, hopefully in time that will go, the neurologist thought it would take a year. Itās baby steps, but there is hope for us all I think
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I am on minitran, its ami with perphenazine I was on 10mg and 2 mg but I decreased it to half because sometimes made me really lythargic and felt my heart beat weird. It helped me but not so much maybe its too early who knows. I am at gabapentin and propanolol. I am really hopeless.
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Oscillopsia.
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I am not sure if I have oscillopsia cause sometimes i feel like its a trembling feeling (probably cause of the small nystagmus). Can this overall dizziness feeling make you have this bad vision?
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More likely to other way around. The hypersensitive sensory issues overload the brain, this affects the eyes and the resultant vision issues make you dizzy. When I was acute if I went outside in sunshine even wearing dark glasses and a brimmed hat the bright light would make me so dizzy I would just fall to the ground. I went many months, no screens, computer or TV. Then it was 18 months or more on meds before I could scroll on a computer without feeling sick and certain movements on TV or computer would make me physically sick. Helen
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So to reduce this hypersensitivity you should avoid stuff or expose yourself? Does your vision feeling any better now, like normal?
Avoidance of triggers is one important part of the recovery strategy. Most people follow a migraine diet, look at lifestyle changes (reducing triggers and getting enough sleep etc) and take preventatives. All part of one overall strategy, Read and digest the Wiki section on here. Youāll soon see the idea. And yes my vision is now normal. Here I am on the Ipad talking with you. And watching TV at the same time. And the sun is shining in my windows and my vision is fine. Helen
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The 24/7 wierd vision went away, i do get some symptoms but nothing like before. I remember the feeling of unreal looking at the world.
I tried ami got to 20 .. changed to Nort got to 60 with very little improvements, reduced to 50 and added effexor and after 2 days was feeling better
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I am 4 months on this and still I cant identify any triggers except monitors or crowded places (over stimulated). For my eyes everything is a trigger lol.
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Me too 3 years and only trigger visual stimoli
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Triggers become more obvious once symptoms reduce. If you are 24/7 symptomatic you have to try to notice what actually ramps symptoms up more than usual and that can be difficult. Helen
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I am feeling bad all the time especially my vision. Every head movement is a trigger or eye movement. I feel this is the only trigger. If this subsides I may find the other triggers if there are.
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