I tried to sleep for as long as I could because I wanted to have my eyes closed as long as I could. After 13 hours of “sleeping” I woke up without headeache or dizziness until I opened my eyes. My eyes felt good without pain except from the wobbly vision when I move my head or my eyes like I am drunk and even worse. After an hour I started feeling pressure on my forehead, sinus and cheeckbones, inside my eyes from the nose’s part and a lot of dizziness plus of course a lot of anxiety. Is this normal for VM? This feels like a vestibular dysfunction to me and the problem is that you can’t be sure if this is the condition.
We can speculate ‘for ever’. Pretty much anything is normal for MAV. Could well be sleeping too long did it. MAV likes routine. Same every day. That’s why some people get migraine every week-end, due to having a lie-in. Helen
I just dont get how most people around here have tinnitus and ear problems while my most i tense problem is my vision and we all have VM or MAV. I dont think that sleeping made me feel like this cause everyday since all this started my eyes was the issue. In contrary if I sleep a lot I feel my head a bit better. Probably because I have my eyes close.
You are jumping to conclusions I think. Lots of people here have/had vision issues. It’s been one of my major issues throughout. I don’t have ear problems. Tinnitus is common with all/any vestibular condition. MAV is just a collection of symptoms. Probably covers several similar vestibular as yet unrecognised, undiagnosed vestibular malfunctions. Try to think logically. One medical person told you you had overwhelmed your system by gaming, ie excessive use of your eyes over prolonged periods I think you said so just maybe your eyes are feeling the effects the most.
Do you have to be asleep to close your eyes? Do you lie down to sleep, always? Lying down might be a contributory factor. Have you thought of that. This whole vestibular thing is more complex than it would at first appear. Helen
I am trying to be logical but maybe desrperation covers the logic. It is true, I was pushed myself a lot but I wasnt the only one… . I checked my eyes 3 times and they are fine so the problem may be from the vestibular system. I close my eyes or one of my eyes everyday many times just to find relieve and check my vision(doing tests on my own) because I still have the memory of my old self. Yes I always lie down to sleep and every time my head is going to explode like when you have high fever (tbh thats my overall feeling everyday).
Yes, when I sleep a long time and/or deep sleep, I get a sort of rebound effect. No headache when I wake but really “floaty-feeling” and then later I usually have more head pressure than usual. Like my body healed too much, or maybe it could simply be coming out of a deep fast. In my opinion its best to just stick to the normal 7-8 hour sleeping schedule with MAV.
I also got into insomnia trouble because I was trying to sleep too long, thinking my body just needed more sleep. This made me roll around and be anxious about sleeping, because I was just trying to sleep too much when I didn’t need to.
My main problem all through this were my eyes Kon. My eyes made me feel dizzy too, I had wobbly vision, foggy vision, I couldn’t focus on moving objects, I could barely look at people talking to me because their face moving made me dizzy. Most of this is much better now, but I still have that overstimulated, too bright, too defined vision which seems to be the last bit to go. I didn’t have tinnitus or ear problems, and the neurologist confirming my ears are fine, all due to MAV
I am trying to sleep more because I am having so much anxiety cause of this symptom. Its frustrating feeling your eyes uncontrolled like they dont work together. I was eating an watching tv same time and all seemes so blurry. With every chewing everything was moving. When i was trying to look my plate I couldnt focus on it. Making me nausea and increasing my anxiety. How can this be a VM symptom?
I know it’s horrible Kon, I’m sorry you’re suffering so bad. I had the same thing in the beginning. The only thing that helps is time and the meds unfortunately
Why shouldn’t it be one.
You really must not let anxiety take over. Best way I’ve found to reduce anxiety is to understand how your balance system works, Taking away the mystery removes the fear. In practical terms it is all pretty logical. You need to reduce stimulation. Calm the system down. When you are looking up (at TV) then constantly down (at plate) every time your eyes have to refocus. Backwards n backwards, every second or so. More pressure on an already overcharged system. So you feel more nauseous. Not surprising. Slow down a bit. Do one thing at a time. Just for now. If nothing else that should reduce your symptom intensity and you’ll feel bit better and happier. Helen
I constantly use my phone for reading medical conditions that may create these symptoms. Every condition/disease I found, I think I have it and I am trying to fit the pieces how this happened. This happening for 4 months non stop. My VOR feels off all day with every head movement. You know its a bit difficult to believe that you need so much time to calm the system, I just dont get it but sometimes I am thinking the life I have done which was not healthy at all, bad nutrition like 2 meals per day, pushing me a lot to have my reflexes up and here comes the thinking of the permanent vesibular/eye/brain damage. Sorry for saying the same stuff I am really frustated. Thinking stuff I could do and now I cant, i am losing everything I had.
I get where you are coming from and how it all seems. I would give Dr Google a big layoff if I were you and then see if later in the week you can find some professional medical assistance to help you cope with the anxiety currently overwhelming you. Once you can get a grip on that things will seem easier to cope with. Helen
Same here Jess! I was just looking over my major symptoms list I made prior to seeing the specialist for the first time in December and most of them are visual, such as:
Walking light to dark / dark to light rooms
Reflections on mirrors
Reflections on windows
Sunlight through the trees making shadows
Television, especially if a news ticker running horizontally on screen
Television: shaky camera (baseball games, outdoor reality shows)
Light reflections on a shiny floor
Side vision movement or light
@Kon, I think visual disturbance is one of the more common symptoms with MAV. As a matter of fact is one of the symptoms that Drs refer to as diagnostic. Please walk away from Dr Google, you’ll find 1,000 times more information right here using the search facility. Believe me… we’ve all been there searching for answers. One thing I had to remind myself is that I am not a Vestibular specialist and never will be. These things do not have to make sense to me, they are what they are and I trust my Dr who is a Vestibular specialist to know what steps need to be taken. Here’s a clip from an article in enttoday.org
Now how is your vision? Is it better? Yeah I have seen many threads but I am searching and other medical conditions like crazy. Trying to justify this eye thing, find the root. I cant believe that a vestibular migraine(which means there is no permanent damage to any part of the system) can create wobbly vision and the feeling that obhects move of flicker even my eyes feeling like this.
Hi Kon, my visual issues are nearly gone. I’ve been on Ami for 6 months, then Nort for a couple weeks. If I’m having a down day, they act up more but overall I’d say I hover 85-90% better!
Funny how the visual aspect has you questioning the diagnosis, this was one symptom that always made sense to me. It’s one of the most amplified sensory inputs to our brain that “confirms or denies” what our other senses are relaying to our brain. When we have one of the senses (Vestibular) that has gone haywire, the other senses (ocular) go full panic mode to try and make up for the deficiency. I was also diagnosed with Ocular migraine, which may help if you research that phenomena.
My very layman explanation
One eye specialist once told me ‘Eyes is Balance’. If anything, Migraine, Bash on the head whatever, causes your eyes to play up, you can become dizzy. People who have had their pupils dilated for medical examination reasons get dizzy. Dizziness is a sign your vestibular (balance) system isn’t up to speed. Your eyes are in overdrive because gaming has overwhelmed your sensory organs. The correct signals aren’t getting through to/from your brain. Another layman’s explanation. It’s only temporary. Like @Naejohn, mine went away. Helen
Thank you for your answers! Glad to hear your vision got back nearly to normal! So you are off meds now @Naejohn?
I am afraid that this eye problem will not be reversed and there will be some kind of used to it feeling plus learn how to manage it. This is sad. And then my head races with thoughts like “hmmm you may have PPPD or even develop”. You know since all this started I feel like I have a flu and I am drunk or sleepless.
An extract from another thread (MAV - an autoimmune condition) that’s just been posted (Thx to Andy from whom I just nicked it because it expresses what I‘ve been trying to convey to you recently so much more expressively than I ever could. And because it contains two of the most valid points for dealing with MAV.
I’m not selling anything so I’m sincere when I say I’d encourage anyone with MAV to turn off from life for a while. Be a contrarian. I’m not saying live on a mountain top doing yoga singing kumbaya but take time out from seeing things as a competition or endless to do list. It’s a mindset. …
… … Finally, anyone reading this who is umming and ahhing about whether or not they have MAV doesn’t really matter. A diagnosis can help hone a course of action but just because you have a name for a condition isn’t the same as a cure (if there is one). Your system is out of kilter (also known as f**ked) and you need to try your best to reverse the situation. Helen
Hi @Kon, I am still on 50mg of Nort. Can’t be happier with the progress! I was diagnosed on Dec 4, 2018 and now 8 months of medication, supplements and diet life is good again! The racing thoughts and anxiety are a natural symptom of this horrible disorder. I’m like the calmest person ever and I became maniacal with MAV consuming my thoughts every waking moment. It can be all consuming Hang in there… you will get better too!
Today I am really bad situation, I am feeling my head full of pressure and my jaw, really disoriented and of course my vision is f*cked up. I mde an appointment with an ENT who knows about VM and he said he have to do a caloric test cause I have never done to see the function of my labyrinth. I really dont care about head pressure but will ever my vision be again normal? 3 months on nearly on meds and 0 progress for my eyes.