This is probably one of my worst symptoms even worse than the disequilibrium cause I obviously must always move my head so im pretty much always dizzy. Is this a symptom of MAV or am I the only one who gets this? Its really frustrating trying to do pretty much anything while feeling like this. Also its not dizzy like vertigo but more kinda out of it and just feels weird when I move around and it makes everything look weird. Sorry …hard to explain. So anyone else with this weird annoying symptom?
Could be what a lot of folks refer to as “visual vertigo.” I know I have issues with this. The “regular” vertigo, as I’d describe it, at least for me, is the all-over off-balance, rocking kind of sensation. The visual vertigo for me is definitely different. And stimuli, such as head movement, can definitely set it off. (I’ve tried to describe it to people as, it’s kind of like, if you’re a glasses wearer, when you get a new pair of glasses with a new prescription - kind of messes with your head for a while, things just look/seem “off” or just not quite right, till your brain gets used to the new scrip. Except with this, it feels like my brain never quite gets it figured out!
Exactly! Lol I also feel like as if my brain has to catch up to me moving up head. It feels weird shaking my head as if I was saying yes or no & my head just feels heavy all the time. Its hard to explain but I think you get it lol
It’s called “head motion intolerance.” Before my medication kicked in, I’d get it from both lateral movement and from up and down movement. Basically, when my head moved one way and stopped, it felt like it kept moving in that direction even though I knew I’d stopped moving it. It seemed like one or two moves might not set it off, but if I kept repeating the movement that would do it. Looking down at a menu, then up at my husband, then back at the menu, then back at my husband - that would get it going. That’s how I knew it wasn’t a food trigger, because it started even before any food came to the table.
Yes thats exactly how I feel. I described it as my brain having to catch up but yea you pretty much got it right! Its sooo annoying though & def one of my worst symptoms next to the disequilibrium. Any who… You dont get that feeling at all anymore with your meds? Or does it just help some what? Thanks
It’s totally gone. I can nod my head, look side to side, and it’s wonderful. I don’t know why the Topamax can’t knock out all my headaches, but the dizziness was much more incapacitating so I’d prefer that it fixes what it HAS fixed!
Thats wonderful that its gone. Id so rather deal with the headaches than feeling sick from moving my head. My headaches have actually improved but im still getting tingling and numbness in my head and face. Its funny how the simplest things in life we take for granted when we have them. All I know is when I start feeling better im going to appreciate every second of it!
Yeaaaah, glad someone brought this up because i’ve been worried about this too. My positional dizziness can range from off balance feelings to quick spins. My head often feels heavy too, or like it’s attached to a balloon??? LOL
How long do these positional feelings last for you?
How do we know whether this is strictly visual, or a neck problem, or both, even? When i say neck, i’m not talking about the musculoskeletal cervicogenic dizziness that chiropractors and some PTs try to sell us, but aren’t there trigeminal nerves in the neck that correspond with the migraine mechanism? At least, i think that’s what i read recently.
Usually if i keep my head straight and just move my eyes around, i’m fine. Reading and watching movies don’t bother me either. What about the rest of you?
I have no idea where this dizziness is coming from but its driving me crazy lol. I also have the heavy head feeling but for the most part im able to watch tv although reading is a bit of a challange. Are you on any meds? Im not…still in the process of getting diagnosed and hopefully treatment will be started soon!
Just low dose Valium as needed. I probably will have to add something else soon. I’ve never tried an anticonvulsant, but i’ve seen where alot of people with MAV have success with that. Years ago (pre-dizzy), i took Cymbalta for anxiety and depression, and when i was weaning off of it, i had no side effects when i got down to 20 or 30 mg, can’t remember which! So i may try the low dose of cymb. again.
Usually if i keep my head straight and just move my eyes around, i’m fine.
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I worked this one out too… although I also have visual vertigo so find I can’t watch films with interesting filming styles or handle long corridors with weird perspective and the like… but regarding the head movement, I’ve modified the way I move around so that I don’t have to move my head, so much that I’m having to see a standard physio as well as balance physio…because I’ve started using abnormal muscles to create feedback for my brain for ‘fixing’ (apparently) and atrophied muscles that should be in greater use. As a result I am going to have my kneecaps strapped this week to see if getting braces would help ease the pain in my knees and hips :?
The moral of the story is… if you are modifying your movement, it’s probably not the best idea, you might end up a little twisted and stiffened which will make the management of your MAV harder. Take it from an idiot who thought developing elaborate coping mechanisms so she could keep dragging herself into work was a good idea :roll:
This is the same thing that is currently happening to me. I spent seven months getting migraines, and now, even when I don’t have a migraine, I have a lot of head motion intolerance that actually causes me to panic. The sensations are awful. It’s like there is a lag of visual reference. So, I take it this is a migraine-brain symptom? Does it ever go away on its own
Motion intolerance, either travel sickness or head motion intolerance/self motion is a common MAV symptom as is Visual Vertigo. Sometimes it’s hard to tell the two apart. Well I have found so anyway. Visual Vertigo is sometimes called ‘Supermarket Syndrome’ but includes such things as trouble watching flowing water in real time or on film, trouble with patterned floors, stripes, dots and repetitive patterns and so on. Not quite sure what’s currently causing you concern. Suspect from what I’ve read it might be that strange vision lag thing where you are still and vaguely looking in the direction of something stationery and it suddenly seems to move side to side, but you know really everything is still? There is a fancy name for it. Not that it matters.
Just like the vertigo being an illusion of movement all these eye anomalies are symptoms the brain is a bit hyper, over sensitive to sensory stimuli. I know it feels horrid and you keep waiting for the next one. I’ve suffered too. Over many years I’ve read everything I could and never see mention of a specific drug to take. General concensus is if you have a MAV diagnosis and a preventative drug controls the MAV it will control all these symptoms too and they should go away.
If it is that strange vision lag bothering you try not let your gaze rest idly and try to keep moving your head and/or eyes more often if only very slightly. Not a cure but bit of a coping mechanism maybe.
Are you on preventative meds? If not, might be worth looking into it.