Iāve read so many articles on the various types of dizziness, how they feel, how to describe them. I donāt get full on spinning. Iām not sure what they would be called, and Iām wondering if anyone might be able to give a name to what I have.
The first type: So, I will be standing, doing the dishes, and as I turn my head slightly to the left looking down, I get a brief feeling of pulling down to the left, like I will just fall downward quickly. Itās not spinning, and itās not the room going over, but a feeling like Iām going down quickly. I have to grab onto something. I donāt know what this type is called? My Neuro thinks this is from my bad neck.
The second type: I think definite migraine attack related- i feel like Iām on a boat on rough seas. I get jelly legs and legs feel uncoordinated, like I have to walk with intention. Ear ringing and nausea. Iām thinking this may be called imbalance and ataxia? Lasts about an hour- thinking brainstem aura.
The last issue I get when Iām flared up is a head pressure, throbbing in the ears when standing up after sitting. Is is not Orthostatic hypotension- Iāve tested my bp when itās happened. It can be pretty intense and lasts several seconds. It only happens after I stand up after sitting at desk at work. Not after getting out of car or bed. It can come with some unsteady wooziness.
Ideas?
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The neuro-otologist Who diagnosed me said each type of dizziness was indicative of something. Not meaning you have lots of different conditions. I think he meant different things were causing different sensations maybe. In his opinion true rotary vertigo was indicative of migraine. He didnāt give greater detail but Iām sure he would link one type to ears, and so on hence the comment about your neck. He was very specific about understanding what I meant by each description. Dizziness being many thjngs to many people. I doubt there are names for each sensation and people feel and describe the same thing very differently. Also āvertigoā. Is āan illusion of movementā. āEither internal or external. So, all your types may qualify. Only youād know for sure. If you think you are moving and you arenāt, thatās āvertigoā. Here in the UK anyway, and Iāve read wirldwide it varies just to complicate things further,
Ref your specific questions. Type One: vertigo on head movement is common with MAV. Type Two:,
Er, āRocking dizzinessā?
Type Three: no idea really unless itās the result of changing your line of sight If you are staring at a computer screen for some time and then stand up and your balance needs time to adjust by finding some other way to keep you balanced. Dont know what you call it but you could try making sure you change your eyes focussing distance from short to long before you stand up and see if it improves. Helen
Thanks Helen! Type 2 seems classic for a basilar or brainstem aura/migraine as I also have cognitive and visual issues during those attacks.
Type 3 is the weirdest for me and doesnāt fit with the MAV stories Iāve read. But Iāve have read of many others with the same complaint online. Intracranial hypertension was one possibility, but I donāt fit the criteria. My Neuro keeps coming back to my darn neck, which hurts all the time I am upright.
BTW, I have never gotten the dizzies lying down. Is that typical for MAV? And very rarely while sitting. Once in a blue moon, I will get type 1 while sitting, but only if I turn my head to the left while looking down.
Ask @flutters, sheās only basiliar type sufferer I know for sure on here. Rocking dizziness does seem to be associated often with people who never get true vertigo but generalisations are dangerous to make with symptoms.
Think anything goes. Anything can be typical it seems for someone.
Positional is common, too. Helen
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Iāve had both and in fact all the MAV vestibular symptoms that exist I suspect.
Btw, shouldnāt really discuss this without reference to https://www.mvertigo.org/t/symptoms-common-to-vm-mav-seh/14981. That has a pretty comprehensive list.
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Basilar migraine is actually my only āformalā diagnosis (besides my āvery, very bad neckā). After hearing maybe Menieres, maybe cluster headache, the Neuro declared I met the criteria for basilar migraine. I actually made her write that down to make it more formal lol!!
Magneto head!!! Yes I think that is my type 1. Pulling me down feelingā¦
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Yep thatās an almightily HORRIBLE feeling!
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I fit that list pretty well. The thing I lack is true rotational vertigo. I know this because when it happened as itās supposed to during a normal calorics test, I was like, oh this is vertigo!
What I did have, that is not on the list, was a profound sensioneural hearing loss in my left ear for several days that was not associated with dizziness. Started high dose prednisone on day one and hearing came back. Also have fluctuating tinnitus in that ear, and sometimes weird pressure and heliocopter noise. All of my ear symptoms are in left ear only. Nothing ever happens on the right side of my head!!
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Well, as a person whoās had it last eight days at a stretch, I;d say youāve not missed much. Quite a good miss really. Wish I could say the same. If it was possible to mail it internationally Iād be only too willing to let you have my next share! Thought that it would certainly be part of Basilar Migraine somehow so surprised to hear that it isnāt, Helen
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There you go making my jealous again. No rotary vertigo, and a formal diagnosis. More than fifteen years and Iāve never had one of those. Just two āprobable migraine associated vertigoā. I try not to let it impede me psychologically.
. Helen
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I donāt envy anyone whoās had it for sure!! As Turnitaround mentioned, vertigo is a sensation of movement of oneās self or the environment. Hereās what I found online:
āVertigo is the sense of the world spinning, rotating, or rocking that is experienced even when a person is holding perfectly still.ā
As far as diagnostic criteria of basilar migraine:
- Attacks fulfilling criteria for Migraine with aura and criterion B below:
- Aura with both of the following:
- at least two of the following fully reversible brainstem symptoms:
- a) dysarthria
- b) vertigo
- c) tinnitus
- d) hypacusis
- e) diplopia
- f) ataxia not attributable to sensory deficit
- g) decreased level of consciousness
- no motor or retinal symptoms.
During the severe attacks, I get sometimes wavy vision and nausea (typical aura), dysarthria, tinnitus, ataxia (incoordination of my walking), hypacusia (have to wear earplugs), and the rocking dizziness. So I meet the criteria even if the dizziness I experience is not clinically considered vertigo.
My mom has had these attacks, as well as hemiplegic migraine (stroke like migraine). My only sibling, a sister, who has NEVER had a migraine and is 49, just started having basilar attacks very infrequently. I plan to do more research into this, as there are certain subsets of migraine as well as other similar disorders that have a strong genetic link. I know migraine in general is genetic, but Iām talking about rare subsets.
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Mine go in this order though they overlap:
- Neck, shoulder, jaw and rear head stiffness, crunchiness and pain
1a. (Forgot this one) Hyperacusis to light, sound, smell and touch. Water burns like acid.
- My regular visual snow becomes a blizzard with fireflies and voids
- Half blind
- Scintillating Scotoma
- Half deaf
- Tinnitus and all deaf
- Depersonalization and brain fog
- Lose feelings in hands progressing up arms
- Lose feelings in half of face and tongue
- Loss of speech and coherent thought. Instant insensate panic attack.
- Intense nausea and diarrhea
- Intense dizziness
- Pain
- All that in reverse followed by days of fatigue, dizziness and brain fog - often with numb hands.
Longest one lasted 5 days, went to the ER, got a migraine cocktail to bend but not break it. Acute MAV ever since. That was in Sept 17. The first time it drove me to the ER was 18 years ago.
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@flutters I believe weāve discussed our similarities in the past.
Of your list, I have 1, 5, 6, 7, 10, 11(mild) and 12. I donāt lose feeling, but I get tingling in my left side of face, and left lower leg. Occaisionally, I get the heat off a road wavy vision, but usually just sensitive to light and noise. I put earplugs in and sunglasses on. During these basilar attacks, I get very dizzy as if walking on a boat at sea in a major storm (not rotational spinning), and hold onto the walls to walk. My leg movements walking are also uncoordinated- and my legs feel not well controlled, if that makes sense. Iād worried about ALS or Parkinsonās the first time this happened. The worst of this usually passes within an hour, but Iām off balance and have loud tinnitus much much longer.
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Me, too. Sometimes my right foot stomps both because of the ground moving feeling and because my vision goes 2d and I canāt gauge distance. That distance thing is a regular source of vexation.
Forgot to add, I donāt get the headache. Just pressure, stuffed nose, and eye tearing on left side.
Sometimes Iām the same. Headache gets swapped out for something else.
Sometimes I feel wet when Iām not. Often I feel cold or feverish and get flushed with a cold sweat. I probably ought to remember the explosive diarrhea, but thatās hard to admit to, despite it being really common for me.
Had to get on a plane the other morning while fully in aura (diarrhea, nausea, sweating, flushed, feverish, dizzy, blurry). Went to the bathroom twice while they were boarding. Took every rescue med on me and prayed for death or unconsciousness. I got the latter. Good enough.
That sounds horrible. Yes, being knocked out is fantastic at these times. I had to have a colonoscopy last fall and was terrified the prep and all would start it all up again. Arrived feeling the beginnings of the MAV, but woke up feeling like a million bucks. I donāt know if it was the propofol or the oxygen.
Speaking of that, has anyone tried oxygen therapy on here? I had an anesthesiologist tell me once that he used it for his migraines.
Interesting about the temperature change you feel. Mine come occasionally with facial hot flushing. My most recent bad event, my face was horribly hot (but not red) on one side only! My left eye usually twitches as well. Iāve had the diarrhea as well.
Do your family members have basilar migraine as well?
I have an aunt with CFS. Otherwise, nobodyās complaining about it except my son. Sorry honey. 
@flutters I found this regarding basilar migraine (aka migraine with brainstem aura- MBA)
Susceptibility to MBA may rarely be caused by a change (mutation) in the ATP1A2 gene or CACNA1A gene. In these cases, episodes may occur in more than one family member.