i think it would be very useful to have a symptoms survey (if there isnāt one already??) because it seems like a huge number of new people come to the site trying to match their symptoms to what others have, and basically asking āIs this MAV?ā or something similar. and we all know how important it is to be able to set yourself in the right direction to find a diagnosis.
i know i have had most of the usual, and a whole load of unusual, symptoms. and reading recent, and old, posts - lots of people have questions about their symptoms.
iām not sure how best to organise it. perhaps people could send in a list of all the symptoms they have had, and this list could be organised so that then a survey could be done. i have no idea how to do the technical bits, though!
e.g.
imbalance
pure vertigo/spinning sensation
flashing lights in eyes
weakness/tingling in legs
fuzzy head
confusion/brain fog
tinnitus
neck pain
etc etc
i think it would be very helpful, especially for those who are desperately trying to find a diagnosis, to know that there is a whole field of weird and wonderful symptoms that can be associated with this condition.
Would the number of voters matter? In this case itās the common frequency of symptoms being looked at.
I filled in a similar poll awhile back on the VEDA page. I am also learning that a lot of things I have always attributed to being my personal quirks may actually be what they consider symptoms between episodes of Menierās. Who knew!!
We could separate the 24/7 from the episodic into two different polls or keep them in the same?
Before we go fully live with this poll, please let me know if the following options are sensible. Itās taken from the wiki:
Dizziness
Light-headedness
Imbalance, unsteadiness on feet
āMarshmallow floorā
A feeling one leg is heavier or longer than the other.
Tinnitus (fluctuating, intermittent or persistent)
Dulled hearing
Ear pressure
Ear pain
Fluid sensations in one or both ears
A feeling of ear āfullnessā
Sensitivity to loudness
Motion intolerance
Nausea
āBrain rumblesā
Eye strain
Visual Hallucinations
Visual snow, flashing
Trouble focusing
Sensitivity to bright light
Discomfort in front of or intolerance of computer, TV or video screens
Neck pain
Discomfort in reclining position, e.g. in bed and/or during turning.
Incapacitating & incredibly uncomfortable migraines that involve intense motion intolerance that can last over 10 hours
āRegularā migraines with or without aura.
Spinning attacks, where you feel the world spin around you which can cause intense nausea
Rocking or Push-pull sensations & false motion
āMagneto Headā where you feel your head is being pulled to the ground
Brain fog, where cognitive function is significantly impaired, you feel like you canāt think. This is a scary and debilitating symptom, but just like the others, it passes eventually.
numbness of face
numbness of tongue
numbness of hands
Irritable Bowel Syndrome (IBS), tightness of stomach, churning
Slurred speech.
Any key ones iāve missed? Letās be careful not to make this too long ā¦ its very long for a poll as it is ā¦
You might group them into inner ear, neurological, metabolic, and other. Given the ongoing causation debates, that might be interesting to see.
I have basilar aura, so please add neuropathy, numbness of face, tongue and hands, IBS, slurred speech, auditory, visual and/or olfactory hallucinations, photo and phono-sensitivities, whatever thatās called when your hair hurts, mock sinus and ear infection. Thanks.
Letās call everything a spade if we can (e.g. mock ear infections ā¦ how do you know? )
Visual hallucinations are probably easier to confirm as hallucinations ā¦ canals donāt tend swing from side to side violently for example At least the London ones donāt, they are pretty staid and boring
I have so many visual symptoms unrelated to vertigo or ataxia, I have a typology. Thereās:
Visual snow with and without twinkling
Colored dots, sometimes flashing
Barrel like rotation around a stable core
Expanding nebula
Scintillating scotoma
Waves
Refraction and halos
Lingering after images
Black lines and dots
Imaginary birds flying by or fake objects falling
Of those, I only consider the last category hallucinations. The rest I consider visual tinnitus or artifacts. Most are 24/7, some are active aura. Sometimes on their own, sometimes with other basilar aura symptoms. Are they all the same spade? Not to me.
Is tinnitus a hallucination? Iād argue it either way. I have that and the more disturbing type of auditory hallucinations. Got the olfactory, too. Perfume, diesel smoke and cigarettes in a closed, scent free room, which is different than when my sinuses are pretending to be infected. My ENT had no problem proving it was migraine playing with the trigeminal nerve by noting the CAT scan showed I only have 2.5 of the 4 sets of sinuses and none in the front. You canāt get sinusitis in sinuses you werenāt born having. (Yeah, hyperactive brainstem entertaining itself!)
Oh, and a mock ear infection is easy for me to recognize. Real ones leak puss from my plastic ear tubes.
I would suggest 2 different polls??? or perhaps option boxes (no idea how these things are up - the old I.T. challenged thing!) Just my tuppence-worth! That is already a long list, but do some folk not have palpitations?? Nystagmus?? - in any event, pretty sure you will NEVER cover all possibilities - just the most common.
James, ever read the one about Norah the Victorian maid-of-all-work, new to her position, worked 18 hour days to make the neglected place spotless and went to her bed on the scullery floor too exhausted to sleep. When the master of the house came home he praised Norah and then told his wife he was amazed how the new maid had transformed the place into a palace and hoped Norah would continue to keep it so to which his wife replied, had he never thought it worth his while to trouble his head for an instant about the labour and fatigue she had gone through dancing all the day long watching the maid in order to keep her up to scratch.
I very recently read a list of symptoms relating to the eye condition, Vertical Heterophoria, two full sheets of A4 listing pretty near every symptom currently known to man. Every sighted rwo legged person in the world could probably have convinced themselves they had Vertical Heterophoria if they only had the time and patience to reach the end of Page 2.
This whole project would make alot of work for ā¦? James and I donāt see how it can be strictly accurate. This forum appears currently to have a low footfall of active participants so there wouldnāt be that many āvotersā besides which people with MAV tend to also have either comorbid health issues or maybe congenital conditions. How can they attribute their symptoms.
There are lists of MAV symptoms on the internet on specialist sites. I would imagine long lists of every MAV symptom ever could well ramp up already high anxiety in potential ānewbiesā. Theyād be instantly imagining they were about to experience ALL those. I can regularly feel the fear in many ānewbiesā and The Symptom List hasnāt been wriiten yet.
I have never seen a comprehensive list of MAV symptoms that covers all they symptoms i have had, and I imagine the case is the same for others. therefore this idea is to have a go at creating one - albeit ācomprehensiveā might never be achieved, it would go further than āheadache with dizziness and photophobiaā that most resources stop at.
as for inducing anxiety in newbies - i doubt it. i think it would be reassuring. i was never worried by symptoms i didnāt have, but was very concerned about getting a diagnosis for the weird and whacky symptoms i did have.
agree we need to keep it from getting out or control, but we can homogenise symptoms eg migraine visual aura including spots, snow, colours, flashes of light etc
OK: hereās a pop at my main symptoms to Jamesā list:
Dizziness
True vertigo i.e sensation you or world is spinning (does this fit in Dizziness? for me, dizziness is like when you step off the roundabout and you still feel āspinnyā but without actual visualisation of real circular motion)
Light-headedness
Imbalance, unsteadiness on feet
sense of motion without dizziness (i.e. feels like you are moving but not circular), or sense of creeping motion
appearance of objects moving in parallax eg looks like trees are moving behind each other, like horizon is moving against sky
āMarshmallow floorā (inc. feeling that path/road etc is moving up and down as you walk on it?)
A feeling one leg is heavier or longer than the other.
Tinnitus (fluctuating, intermittent or persistent)
Dulled hearing
Ear pressure
Ear pain
Fluid sensations in one or both ears
A feeling of ear āfullnessā
Sensitivity to loudness (* Hyperacusis (everything sounds too loud)/phonophobia)
Motion intolerance
Nausea
āBrain rumblesā (whatās this?)
Eye strain
Visual Hallucinations
Visual snow, flashing, colours, spots, ātrailsā and after images, etc - non-classic visual aura
Trouble focusing
Sensitivity to bright light/photophobia
Discomfort in front of or intolerance of computer, TV or video screens
Neck pain
Discomfort in reclining position, e.g. in bed and/or during turning.
Incapacitating & incredibly uncomfortable migraines that involve intense motion intolerance that can last over 10 hours
āRegularā migraines with or without aura (i.e. with headache?)
Spinning attacks, where you feel the world spin around you which can cause intense nausea (true vertigo)
nausea with fuzziness (i.e. nausea like in vertigo, but without spinning sensation)
Rocking or Push-pull sensations & false motion
āMagneto Headā where you feel your head is being pulled to the ground
Brain fog, where cognitive function is significantly impaired, you feel like you canāt think. This is a scary and debilitating symptom, but just like the others, it passes eventually.
heavy head - where you feel like youāve been drugged and are barely awake/conscious
numbness of face
numbness of tongue
numbness of hands, feet, legs, including tingling of legs, general feeling of weakness
Irritable Bowel Syndrome (IBS), tightness of stomach, churning
Slurred speech
ārubber ball headā i.e where you feel like your brain is bouncing around like a rubber ball
unusual headache sensations, eg crawling headache up back of head, headache or scalp/painful scalp, head pain in specific and unusual areas
bloodshot eyes during and between episodes
false fever: slightly raised skin temperature and feeling of fever, without real temperature rise, sweating [NB always get this checked out in case of real fever]
fatigue, or cycles of fatigue and restlessness.
insomnia due to symptoms
āvisual lagā ie where there seems to be a time lag between motion, eye and brain
visual distortions, eg where colours seem too vivid, or buildings seem to be like surrealist painting, or clouds seem like animations
sense of doom/anxiety at onset of symptoms (possibly secondary or possibly āpart of the migraineā)
feeling of unreality/displacement (eg iām standing in my road, but it doesnāt feel like my road)
exaggerated motion sickness or motion intolerance (eg being passenger in car could cause nausea, or could cause headache or brain fog and other symptoms)
a sense of crawling tiredness behind the eyes when youāre trying to process motion etc during these episodes
mal dāembarquement - feeling like you are on a boat or just got off a boat, seasickness on dry land
iām sure iāve forgotten a few!
i think with some more input from others on the site, and a tidy up, it could be a really useful list.
So Iām assuming you were aware of the existing list on the wiki?
Perhaps this is getting too long for a poll? ā¦ iām not sure if technically it wouldnāt grind the site to a halt having so many options ā¦ so ā¦ hereās my suggestion:
Iāve kept the original list of symptoms in the wiki as a summary and appended another post with an expanded list, which starts out as above ā¦ its a Wiki so those with enough of a Trust Level can now edit it:
There may be some interesting things we can do in polls around symptoms ā¦ but having one with 100 items might not be the best approach
i hadnāt seen the original wiki, thanks for pointing that out!
you may be right about a poll, it would need some kind of reasonable limits - but it would be interesting data to see what % of people get what kind of symptoms.
Ever used Survey Monkey? We could post a link to a survey there. There are lots of ways to get to these questions that are in easy to use matrices. Iāve done a lot of that kind of work. If you want to go there, and you want help, Iām game.
At least before post poll analysis 
