For 6 years now I have been dealing with “spatial disorientation”. I have found one Dr. That finally understood what I was describing. Am currently on venlafaxine which really helped with the symptoms. Anyone else have spatial issues. I am exhausted all the time, both mentally and physically in addition to a laundry list of other symptoms. Any insight would be appreciated as i have had a total of 7 normal days in 6 years.
Welcome to Mvertigo! While we’re all fellow patients and not doctors, you definitely sound like one of us. You’ll find Venlafaxine is a very popular drug on this forum.
Please spend time on our welcome wikis. You’ll find a wealth of information there. Then, poke around the posts.
We’re glad you’re here, happy to help and know exactly what you’re going thru.
Yes, indeed. Been there. Well still am to greater or lesser extent. It can be associated with MAV obviously. It is however closely linked to any eye misalignment condition. In both cases this is because something is interferring with your 3D vision. Mine is at its worst when the MAV is bad and balace under pressure. I did some supermarket shopping the other day, absolutely fine. Got home, unpacked the groceries and put some dry goods in the dresser in the corner, turned away from it and very nearly collided with the mantel shelf. I quite regularly manage to step on my husband’s foot, or even the feathers of the dog’s tail, misjudging the distance as I walk by. Yet pre-chronic MAV I’m an Outdoor Events Photographer working at speed capturing horses running, tennis balls in the air, at distance, anything that moves more or less, with a variety of lens and I couldn’t remember the last time I failed to capture the entire scene. I could frame up 100% 400-500 hundred times an event, without the need to crop, no trouble. I haven’t attend an event using a camera for four years now. I still need a good day to be able to take a few stills outside at home. Most of the time outside I need both eyes to balance rather than using them looking through a lens. Same applies to binoculars. Not really sure how this helps you but it proves you are not alone. Helen
Sometimes I really wonder how differently we each describe various symptoms. I’ve experienced alot of spatial disorientation. Still do. I’ve also had alot of Visual Vertigo. Other people seem to get this ‘derealisation’ which I think I may have experienced very recently for the very first time - jury’s still out on that one with me, but are we all talking about the same thing. By that I mean is my Visual Vertigo, and Spatial Disorientation, @Amylouise’s ‘derealisation’? Different interpretations of the same feeling? Helen
Totally agree Helen I think we all describe things differently for me the spaced out feeling is like my head has something inside it like a balloon filling with air the move I move the more the balloon gets bigger sand then my head feels floaty this along with my vision being off and my depth perception is off creates what I call derealisation . Not sure if yours is similar but I’m sure we all describe it different
I think we each have different feelings too, it’s not just how we describe them. I’ve had a range of different dizzy feelings, it’s not the same day to day.
I get an up and down sensation like a boat. I also get a constant feeling of falling, like skydiving. I i het a pressure feeling all over my head, my scalp tightens, my eye sockets and across my cheekbones and nose feel heavy and tight, my teeth ache, my throat hurts, my jaw muscles cramp. I get a heavy head feeling like it’s full of sand. The top half of my head feels really heavy and the bottom half (face and jaw) feel light and airy like they’ve disappeared (not numb, i can still feel them) and i feel like a bobblehead toy.
Other times my head just squeezes all round, and in my ears, like it’s going to explode.
Then there’s the internal buzzing in my face, chest and limbs.
I’ve had the spatial distortion thing which even though everything visually looks ok, it feels distorted to me. The room feels big or the floor is too close, or very far away. When i walk, i expect my foot to reach the floor sooner than it does, or it arrives under my foot too soon lol.
Other times it’s like i’m walking through soup. The air is heavy, even when i breathe.
Other times my arms feel light as a feather and i’m confused about where they are in relation to my body.
At my worst, i couldn’t look in a mirror, my brain couldn’t compute the depth. It’s looking at a flat surface yet you can see the depth of the room reflected behind you and my brain just couldn’t understand that. I’d move my face and my brain wouldn’t understand the reflection was me.
Some people with mav always have one type of dizziness, the same all the time. Others have different kinds. And different severities. Which is why some people can “push through” - a sense of wobbly imbalance isn’t the same as spinning vertigo, for example. The audiologist I saw kept saying “you have a sense of imbalance then?” but that doesn’t cover it at all. Because i didn’t have spinning vertigo, she categorised my dizziness as “imbalance” but in my mind its alot more than that. To me, imbalance is being wobbly and staggering etc while walking. Yeah i do have that, but it’s not just that. I feel like i am literally moving inside. On a rollercoaster that never ends. It’s a really confusing condition.
Exactly how I’ve described it to many doctors.
Im so glad it isn’t just me who describes it this way
Can’t really relate to the ‘balloon’ feeling, more disorientation, feeling like you woke up but nobody switched your brain to ON, eyes not working together or eyes not keeping up with brain. I could see how some might describe it is ‘derealisation’, at a pinch. Guess it’s all same sensation. I think it’s brain really overloaded because of MAV. I think I might have suddenly started getting it. Whereas in supermarkets I used to just get really dizzy, bend double and couldn’t stand, I now seem to get this ‘detached feeling’ with a bit head pressure as delayed reaction after leaving store. Happened again yesterday. I say it’s ‘overload’ -in my case at least - because yesterday was first time since MAV I’d been in Tescos and I wasn’t wearing wraparound dark glasses I usually wear in big stores. Helen
I relate to a lot of that my only question why is mine 247 even when the dizziness isn’t bad that’s what I can’t quite understand I can’t be in a chronic migraine for this long
I was Amy…nothing looked or made sense to me outside for all of 2015. Its only in 2018 under the influence of Botox and Venlafaxine has it changed…you will improve but sadly MAV will decide when
Its ready to give you a break. Its horrendous
Well if Some people can have Chronic Daily Headache, and others, like me, can be 24/7 rotary type dizzy every day for over three years and still more can rock for months/years on end, why not? Unfortunately, difficult as it may be to believe, it’s not impossible.
Just perhaps because you are so fit and young and your balance is so good you get this disorientation sensation when you overchallenge your vestibular system in place of a full on attack. Helen
I appreciate reading what you all are saying. We tried Botox in late January and all it did was increase the number of headaches I was having - as in daily headaches. So, we stopped that after one treatment. He wants me to try Aimovig now but my insurance denied it since I was just on Botox. Waiting to start it until another specialist appointment at the end of April.
I think that I am beginning to lean more towards a depth perception issue also. Things at a distance are worse than things up close - most of the time. Clouds in the sky are the worst for me as I can’t determine where they are. I also think that there could be a bit of eye misalignment. I had put that on hold while trying the Botox so that we would know what was causing improvement or problems.
Outside is also a huge challenge for me. What we all experience is horrible. I had no idea that all this was going on in the world until it hit me.
‘Spatial Disorientation’, in the true ‘medical’ sense is a ‘depth perception’ issue. It is linked to 3D vision and eye misalignment. Take care here because dealing with it seems to have become a bit of a latest fashion trend and there are alot of charlatans out to make money. You wil find threads on here on ‘vertical hyperphoria’ you may find of interest. Best to remember it all very well to use enhanced optics to ‘correct’ eye misalignment, the problem comes in getting the brain to accept the changes. Our eyes gather information. Our brain interprets that info and we see Its interpretation. Helen
Thank you Helen. Truly appreciate your insight. I will do a bit more reading on the eye scenario.
PM me if it helps. I’ve done the eyes v MAV. I started with vertigo and eye alignment years before I ever heard the words MAV! Yep, done all that, learnt a helluva lot, interesting stuff. Been there, have the T shirt and drank the soup! Helen
Where do we get the T-shirt? I want one.
I call it 2D vision and it drives me crazy. My job requires long distance driving, often at night and in the rain (Seattle). It’s dangerous and wrecks me, but my options are very limited in that respect. I spend an awful lot of time using my executive functions to do something that should be automatic.
I have seen this clinic mentioned (maybe in the Facebook groups) and I believe this type of vision correction has helped a number of “dizzy” people:
It looks like their site has a lot of educational information on it.
I have felt the same for over 2 years now. But since I’m getting closer to recovered, I can tell you that as you get the balloon to deflate all the other symptoms start to recede. They don’t correlate well on a per day basis. Meaning on any particular day you can have dizziness without much balloon, or bobble head with out much dizziness, etc… But ON AVERAGE… they all go down together over months and months of hard work trying medication, getting proper sleep, managing stress, eating well, etc…
At the moment my balloon (migraine?) inflates mainly in the afternoon/evening unless I had poor sleep, then I get it immediately in the morning. Each day I hope to push it further and further towards the end of the day and hopefully stop it all together.
My balloon is near my left eye, feels about 2-3 inches into my brain. When it was really bad and chronic, there was not much a sensation of balloon, it was more of a head pressure that was everywhere that never stopped - like my head was going to explode. Or sometimes maybe my nose.