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Mangled retina and macula? Split-second shift in vision?
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Mangled retina and macula? Split-second shift in vision?

I have been living a nightmare ever since my retina detached 4 years ago. The retina specialist saved the eye, but it is like a chunk of heavy, distorted glass that takes up too much space in my head. I no longer feel part of this earth, and everything is disorienting, and words looked bunched up and wavy, I have immediate term memory loss if something is not in view- it is totally forgotten- and life is one of survival and feigning that everything is okay on the outside while I grapple with a nightmarish life, feeling a different gravity, seeing other than the world in which I used to live, not knowing where I am relative to my own body, constantly despairing and depressed. talking to myself, crying excessively, hardly able to get out the front door, and feeling a constant "clutch" of panice in my stomach. My neurologist whom I have seen for years for migraines and scoliosis-related problems, is trying to help. What you describe- the split-second shift in vision- has happened twice recently to me, and I will tell my neurologist. Surely someone has heard of this. I went to a neuro-opthal. a while ago, but they need to see tangible displays of obvious disfunction/malfunction, and are not prepared/trained to deal with something like my problem or the vision shift. He did tell me something that the retina surgeon should have told me: my words- in addition to a mangled retina, my macula is damaged. They tell you nothing. I have heard of people with macular degeneration leaving everything behind - family, friends- everything- changing as much as they can about themselves. I totally understand. They are trying to run away from themselves without killing themselves.
Tags: eyes, vision, neuro
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I had retina detachment surgery- vitrectomy and scleral buckle SEVEN YEARS AGO in my left eye. I can't look at people, I had to quit work, I have to cry every few hours because it is all so unbearable: the distortion caused, the cognitive problems created, the panicked feeling within 24/7 makes me want to kill myself every day. It is that bad. My life is ruined. I am so ashamed and depressed. I can't help with anything. I used to be very strong and could help. Now, I have to stand in a corner because I can't bare to look at anything or people. I can hardly make myself get out of the house. it is all panic. Getting to the car, acting as if I am okay and not going crazy because I can't deal with this earth anymore, walking across a parking lot, going into a store are all nightmares, with everything looming and making me want to kill myself. All I can do is say repeatedly- okay, okay, okay, just do this, just do this, just do this, okay, okay, okay, omg,
omg, omg, this is terrible, I have to get out of here. There is no joy in anything. It is all despair because of this eye. I stay home mostly and am so despairing and desperate all the time. My life is getting from second to second and NOT killing myself. Looking at this as I type makes me go crazy and want to get up and scream. I see people on TV who were burned severely, with their eyelids and skin pulled tightly downward, and that is what I feel my eye and left side of face look like, but I look in the mirror and don't look that way at all. The stress 24/7 for 7 years has been unbearable. Formerly an expert reader, speller, and thinker, I now am confused, can't spell well, I add "e" to words, and mix up letters in the same manner that dyslexics do, can't even remember words & trying to do so creates terrible panic and anxiety; I can't remember what I was doing two seconds ago, and whether I do or not, I feel panicked in the process of getting through
every second and finding my way around. My phone might be right next to me, but I don't see it, and panic, and throw everything out of my pocketbook and run around the house in a panic. I find it, and two seconds later, I am doing the same thing again. This happens with everything. I don't remember. I used to have an excellent sense of direction. Now I don't and I am confused and feel so panicked all the time. The eye hurts, but that is the least of my worries. It is a nightmare to remain alive. I am trapped. I can't feel or think about anything else because my eye and mind are warped. My head feels separate from my body when I get up and feels like it is bobbling somewhere and my body is below somewhere. I constantly feel like my body wants to move in a sort of jerking fashion all the time, but I control it. Riding on a train gives some relief, and if I could do that forever, I would. The only reason I stay alive is because I have a daughter, and I
would not cause her the trauma and shock of a parent committing suicide. I can't sit and talk to a doctor- I would want to scream and run away. I am doomed. I could take more medicines, perhaps, or smoke marijuana.  I heard of a woman with severe macular degeneration who cut her hair, dyed it, changed her name, changed her religion, and moved away because of the awfulness of her predicament. I constantly want to run away, but I can't get away from myself. I wrote to Dr. Hagan several years ago. He was kind- suggested I see a psychiatrist, presumably to help control the terribleness of it all. My neurologist (for migraines) has been sympathetic. Called it an on-going trauma. Upon her suggestion to see if it could help my eye somehow, I ordered the device seen at www.cefaly.ca that is for migraines. It hasn't but it was an intelligent suggestion. I continue to despair. My existence is one of anhedonia, and just trying to survive. For 7 years, I am living
a nightmare every second- YES, IT IS BEYOND HORRIFIC- and unless I decide to end it, it will continue like this, and I will have to cry every few hours because of the deep despair and stress of what my eye sees and translates to my brain and entire body. I see an ophthalmologist once a year, different from the one who performed the retina surgery. The eye has decent vision; it is the warping and distortion and waviness and gyroscope feeling - not like vertigo and not nausea- it makes me want to grab my stomach because I feel panicked all the time- plus it is difficult to move it., and the eyelid doesn't want to stay up. It always feels puffy and as if a glass globe is sitting in my head. (Do NOT suggest I get surgery on the eyelid. There is no way I am going to let a doctor touch my eye unless it is an emergency.)  I wouldn't care about the movement part - if only I could live without wanting to kill myself. More medicine? Move to a state that has
legalized marijuana?  More medicines? Which ones?
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