Hi everyone. This place seems very friendly so I thought I’d post what I posted earlier on another board. Can anyone tell me if my symptoms sound like MAV or some other vestibular condition or if I’m just mad
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Visual - this is one of the main things for me. I feel like I can’t see properly 24/7. I find it extremely hard to explain what I mean by that, and there are a couple of different facets to it. One is that I feel like I can’t focus properly. Another is that things go dull or dark (especially if I look at one thing for too long). Another is that I can’t seem to see around something like I used to. What I mean by that is that if I’m reading for example, I feel as though I am only focusing on one letter at a time, whereas I should be seeing the bigger picture.
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Dizziness - this is the other main part of it. I feel dizzy in some way or other 24/7. It’s either just a niggling feeling of being off-balance or of leaning (when I’m not) or it’s worse. I always feel light-headed. I also have episodes which absolutely scare me to death where I feel like I am about to faint. I’m sure if I didn’t stop whatever I’m doing I would faint but I’ve never tried it. This happens when my eyes are over-stimulated (I think) like if I’m walking and seeing everything passing, or if I’m in a shop looking at things and moving my eyes too much. It’s awful and it’s happening more and more, and it’s the main part of what stops me going out.
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Brain fog - this is also with me 24/7. My concentration is zero. I can hardly even follow Eastenders anymore. I can’t read anymore really because I can’t take it in or make sense of what I’m reading. It’s very scary and has even lead me to wonder if it’s some kind of early dementia. It sounds a bit ridiculous and far fetched but it’s honestly how I feel. One of my kids asked me who the Prime Minister is the other day and I didn’t know. I can’t put names to faces. I can watch a film and then not be able to tell you the storyline afterwards.
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Memory - my memory is awful. I forget everything - what I need to do, where I’m meant to be, appointments, things for the kids, everything. The amount of stuff I forget is embarrassing and I even try to cover up for it by pretending I’m joking (like not knowing who the Prime Minister is). The other day Patrick Swayze came up in conversation and I didn’t know he was dead. I mean I did know once but I forgot. The same thing happened with the Queen Mother. As I am typing this now, I’m realising how stupid it all sounds, and I’m wondering if I’m deluding myself by thinking it might be a vestibular thing. It is sounding more and more like some nasty degenerative brain disease which is what I really fear.
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Constant feeling of not being comfortable - this is weird and is something I’ve only been noticing over the last few months. I am constantly moving - both in bed and when I’m just sitting in the living room. It’s like when you feel uncomfy and you change position - but I’m doing it too much - like I can’t sit still for more than a few minutes at a time.
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Constant feeling of being ‘not normal’. I feel offbalance which makes me feel like I’m walking funny. I feel like I can’t hear myself properly so I think I’m talking funny. I feel as though I’m saying things wrong or getting my words jumbled up or something. My other half says I’m not but I still think it. I feel like I’m acting all the time. When we go out I have to act normal and just wish it would hurry up so I can get back home and relax a bit. I feel like I’m pretending to look and people and listen to them. Really I’m just watching their mouth move and saying ‘yes’ at the appropriate time - it isn’t going in - I’m too worried about feeling dizzy and worrying that I might faint any minute, and wondering when I can get home. Half the time I have no idea what the person has said to me, and I would not be able to relay the information to anyone else. I feel constantly confused.
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Bladder symptoms - whether or not this is connected I don’t know, and to be honest I guess it isn’t but what the hell - I’ll include it anyway. I feel almost constantly like I need a wee. The worst time for this is when I’m in bed trying to get to sleep. I’ve had scans and stuff, and they all came back clear.
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Depression, anxiety, panic and agoraphobia - as far as I’m concerned all this has come about as a direct result of the vision problems and dizziness. The doctors I have seen claim that it’s the other way round, but I know myself and I know that the vision and dizziness have robbed me of my life and made me unable to function normally. I can’t go out alone and I am in a constant state of anxiety and dread and worry about feeling dizzy and about what’s wrong with me.
There are other symptoms but they aren’t all there in my head right now, and they’ve been there for so long that I almost forget what’s a symptom and what’s not if that makes sense Thank you for listening xx