It’s hard. It’s hard to tell someone else how to describe theirs too because we aren’t seeing/feeling exactly what they are. What helped me start on the path was not allowing myself to use the word “dizzy” to describe what I was feeling, as dizzy can mean so many things (learned this one from being inpatient for this and not being allowed to say “dizzy” as an endpoint for describing symptoms). I made myself think of others descriptors and ways of saying what I wanted to say, with references that other non-dizzy people could relate to. I seriously spent more than a week provoking my symptoms and thinking of things while things were at their worst and then thinking - does this fit? Yes or no?
For me, my dizziness comes in a few forms - visually, every motion is exaggerated. If my head/body moves an inch, I feel like I moved a foot. Because of this, the normal slight bouncing of walking feels like I am jumping around, swaying side to side feels like I am veering all over the place, and it is very disorienting - like watching old home videos from the 80s before steady cam features were invented. Then, on REALLY bad days, it feels as though my actual body movement and my visuals are off sync by a split second. For example, when I swing my head to the left, what I see takes just a moment to catch up. This plus the exaggerated motion makes it next to impossible to function normally on some days. This is basically what I told my doctor when I presented it to him, and he said he understood perfectly what I meant and was glad I “didn’t just say dizzy”. Hah. This is just an example of what I came up with for my situation. I also have true rotational vertigo from time to time, which generally I have never found to be an issue communicating with doctors about (maybe it comes up more often with “regular” patients?).
I am by no means an expert, but I would go back to your description and replace dizzy with other descriptors as a starting point. Also, be very specific about what happens when you decide not to get up. Do you move at ALL? To me, this would be important. Staying perfectly still vs. rolling over, for example, could differentiate between having a layer of BPPV on top of things. Are you always in the same position, for example, lying on your back? Or does it not matter? Does time of day matter? Do you get the same sensation in other situations? The more detail, the better. Anyway, this is just one dizzy patient’s take.
DizzyForLife
Thanks for posting the description of your dizziness (below) - it does take a lot of ‘thinking through’ & trying to find those particular phrases & ways of conveying what we are actually experiencing. As we know, there are a myriad of ways in which each of experience our own particular symptoms and searching for words to explain to others is sometimes too hard so we just use a generic term, ie 'dizziness. There are quite a lot of descriptions among the different postings but having a separate topic as reference, particularly for those new to this condition could help. What do you other members think & can we make a place to contribute our particular experience of ‘dizziness’?
Barb
"“For me, my dizziness comes in a few forms - visually, every motion is exaggerated. If my head/body moves an inch, I feel like I moved a foot. Because of this, the normal slight bouncing of walking feels like I am jumping around, swaying side to side feels like I am veering all over the place, and it is very disorienting - like watching old home videos from the 80s before steady cam features were invented. Then, on REALLY bad days, it feels as though my actual body movement and my visuals are off sync by a split second. For example, when I swing my head to the left, what I see takes just a moment to catch up. This plus the exaggerated motion makes it next to impossible to function normally on some days. This is basically what I told my doctor when I presented it to him, and he said he understood perfectly what I meant and was glad I “didn’t just say dizzy”. Hah. This is just an example of what I came up with for my situation. I also have true rotational vertigo from time to time, which generally I have never found to be an issue communicating with doctors about (maybe it comes up more often with “regular” patients?).”
I’m new to posting around here, so I’m not sure my vote really counts, but I like that idea - kind of an index of descriptors people have come up with. We all have different flavors of dizziness, and people having trouble verbalizing their issue could look through and possibly be able to identify with something there that could help them communicate better with their doctors and family/friends. I’m not sure what the etiquette is for posting outside links, I need to review it again… but if people find YouTube videos or pictures online that look like their problem, is that something that can be posted too?
Edit to add link:
I forgot to put this the first time around. These are the basic categories of dizziness that doctors seem to start with in my experience: ncbi.nlm.nih.gov/books/NBK325/
Vertigo vs. Disequilibrium vs. Pre-Syncope vs. Lightheadedness. Where things seem to break down is in the details - vertigo is felt in different ways by different people, for example. At least it helps to narrow your type of dizziness down to one (or more than one, if applicable) category, and jump off from there. I wouldn’t be surprised if a lot of us here have symptoms consistent with more than one category.
Sometimes when you say you’re dizzy people think light headed, like it feels when you get up too fast. For me, when the dizziness is very bad, I describe it as the way one feels when they’ve been spun on a merry go round very fast and then stop. Most people can identify with that feeling. It helps for my family to know how I’m feeling specifically so they ‘get’ why I can’t drive or do the usual things that require normal cognition. And doctors appreciate it too. The visual issues are a little harder to explain. But there are some good ones here.
Well, vertigo is any false sensation of movement. So, both feeling like YOU are moving and feeling like everything else is moving counts as vertigo. A lot of people just think of vertigo as the characteristic spinning sensation (like what you get when you spin really fast in a circle and then stop and can feel), but it encompasses much more.
Disequilibrium is more about the motor side of things - you feel clumsy, unsteady, and/or unsure of your steps and movements. Vertigo can often cause disequilibrium, so the two can run hand in hand even though they are describing different parts of the equation.
Your vertigo could be exacerbated by certain body positions or movements. The only way to really know if it is sudden movement causing the issue is to move much more slowly and deliberately and see if that reduces or eliminates the sensation. If moving much slower doesn’t help, it’s probably not sudden movement specifically that is the trigger, but movement overall, and/or certain body movements. Sudden movements could potentially still make things worse though. Abnormal eye movements called “nystagmus” can accompany vertigo, but it’s really not possible to know over the internet what the issue was with you. Did you tell your doctor about that?
When it is just the environment around me that is “moving”, closing my eyes or laying very still will help. If I feel like I am moving as well, closing eyes does nothing or makes it worse. Sometimes I’ll be sitting on the couch and suddenly feel like I’m falling off the cushion. That would be me feeling a false sensation of myself moving.
It’s really hard to say what your cause is. I would keep a journal if you aren’t already about symptoms and things that make it worse/better to help suss out your triggers. Bring it with to your doctor’s appointments and it may help them (and you) narrow down and pinpoint the causes you are after.