Also, Scott, Revolving and Turnitaround, is your dizziness rotational, rocking, vibration or just general lightheartedness?
Bigpetey mine is rotational and rocking and I faint often, sometimes 6 times one time after another. Not very nice!
My big relapse that started the MAV phase was lightheadedness. Then a feeling of unsteadiness/imbalance and a horrible feeling of insecurity when walking through a crowded mall. That then escalated to visual hallucinations of rocking on occasion and a point where the ground felt soft. I’ve also had strange feelings under artificial light where one leg felt heavier than the other and I’ve had twitches and stiffness of facial muscles. Horrendous!! I think it basically became every dizzy feeling under the sun. Then there were attacks that varied in severity but generally caused me to have to lie still and staring at a point on the wall for hours and hours and hours (13 hours one time). The vertigo then appeared. I call it the ‘mini spins’. Some call it the ‘night spins’. Almost always mild and sometimes just a subtle swaying feeling when sat. Vertigo happens to me mainly in bed in the morning but can happen when sat at desk. It’s decreased in severity over time. I hope that continues.
Since beginning the meds almost all of these have vanished or decreased in severity. On meds the floor feels hard again and the visual vertigo has gone. The spins are experienced in a very mild form, sometimes just a tickle. But they herald a potential decompensation and a few days of additional imbalance to be worked out by exercise. I’ve only had nausea from movement for one two week period since starting the meds (thank you Mr(s). Amitriptyline Inventor!)
I have had relapses and attacks since though with one major attack in December (breaking a 6 month run without a big one. Heartbreaking) which was a hard lesson but proved to me that my condition at least is not just a migraine. The attack was not a migraine but caused me to feel a great magnet was pulling me to the ground. I wonder if there was a big fluid crisis of some kind in my ear. I’ve even wondered if a big air bubble got to one of my movement sensors. The Amitriptyline definitely made that one easier to take but put me in bed for 3 days I couldn’t turn my head or was VERY uncomfortable. I took 3 weeks to recover from. Amazing how much I did recover. Pretty much completely by mid January (NEVER let a relapse make you believe you can’t recover). Nothing as big as that has occurred since but I’m aware it may happen again. I try to stay as calm as possible during attacks now as anxiety always makes it worse. Just take it on the chin and know it will get better in a few days.
I’ve been to hell and back like many on here. I like our planet earth much better!! Thank goodness for the medication !!
Interesting that you both have had rotational. not once in my 4 months have I had rotational vertigo. I experienced real rotational vertigo for 5 minutes during balance testing when they pumped hot air into my ear…and then I realized that it was very different from what I had. For me, its left+right rocking and general imbalance, similar to the feeling for 4 days after I ate a massive pot brownie 5 years ago! No issues with riding trains, boats and cars either. Again, I wonder if this points to something that’s more along the lines of Chronic Subjective Dizziness for me…triggered by the flu and stress? In any case, My neurologist didn’t seem to make a huge distinction between CSD or MAV and thought Amitrytaline would work in either case. And given that the whole thing started for me with textbook occular migraines, I still think it’s a migraine variant, despite the lack of headaches
if you want my humble opinion, rotational is down to two possible things happening in the inner ear:
- air bubble or clot of something interfering with one of the axis senses
- fluid moving faster than normal/expected past one or more of the balance senses (so brain sends on sensation of rotation)
I shudder to think how this could happen. There is normally no air in your inner ear, nor clots (fluid is pristine). Fluid movement might suggest a potential difference in the perilymph, causing it to move - that points to some disfunction however subtle to the absorption or production of fluid. Or it could indicate a slight expansion or retraction of the outer membrane.
PS another theory: if at some point you stretch the outer membrane due to fluid pressure that is temporary, a retraction in pressure might leave your previous pristine taught membrane saggy leading to fluid movement that could be positional?? Assuming no more insults would the membrane tighten of its own accord again? (evolution is a wonderful thing, that surely must exist as a mechanism or it would take only a few insults for the membrane to simply slam up to the bony wall). In any case brain might learn to ignore small unilateral signals that don’t correlate.
so what causes non-rotational?
True vertigo is always rotational I believe. If its lightheadness or imbalance that to me is some corruption of the senses verses the engrained, learned vestibular algorithm in the brain. e.g. some change in the expected inputs verses other inputs, e.g. one ear versus another, when one ear is playing up, or as you rightly pointed out, some odd signal from the postural, joint angle, pressure stuff from joints and feet not corresponding to ears and eyes etc. Lightheadedness could be part of an anxiety reaction as an escalation that the brain does to make you feel more conservative, wary because of unexpected inputs.?
I’ve always thought that ‘dizziness’ in general is feedback from a sense that the brain doesn’t expect because it doesn’t correspond with information from other senses. If that new signal pattern remains long enough, the brain accepts and learns the new input and you no longer feel dizzy. That’s compensation and plasticity of the brain. That is why we recover from relapses, imho, and how we learn new forms of transport, e.g. cycling, figure skating. I think that’s a standard view of neurology.
but MAV diagnosis doesn’t necessarily require true rotational vertigo, right?
correct. I think MAV is diagnosed when you have symptoms that would ordinarily be diagnosed as Menieres but WITHOUT progressive and significantly fluctuating hearing loss (I have a little loss on left side, but its not progressive, it appears). I have my theory about what that actually means, but I have zero proof just hypothesis.
I don’t think so, vertigo comes in various guises. My doctor won’t let me use the word ‘dizzy’ and says vertigo falls into four categories but I can’t for the life of me remember them all. So there’s the sensation that you or the room is spinning, a catching up sensation when you move your head and it feels like your brain follows a second later. Then the other two evade me, sorry. I think one might be lightheadedness. But he always wants a specific description when I say ‘dizzy’. I’ll find out what the others are! Can any other Dr Surenthiren patients fill the blanks?
I’ve had a range of sensations. In acute episodes, I’ve had the worst kind of rotational vertigo where I have to just lie on my belly and if I so much as turn my head I’ll throw up. Then when the chronic phase set in it was less severe but still rotational, also the general unbalanced sensation too. The catching up sensation was bad for me. Not so much the rocking. I haven’t had those for a long time but I do get lightheadedness, and have had since reducing the meds. For me though my ears have nothing to do with it. It’s all my ‘irritated brain’.
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Scott I’ve had all those except, “Catching up sensation”? Can you describe that? Yes, absolutely agree you need to be specific about type of dizziness. That’s why I always believe vertigo to be the spinning sensation, but I guess you could argue it is also lightheadedness. Yes, there must be standard definitions somewhere.
It feels as if when you move your head to one side or the other, your brain follows a half second later. I guess it is a physical sensation where the brain seems to actually move separately but also a visual thing, where you move your head and a half second later your actually seeing what you should be. Very unpleasant. By the time I saw Dr S I was so sick of trying to describe it to doctors, who I’m sure just thought I was mad, so I didn’t mention it. He asked me if I’d experienced this and I could have cried that finally someone knew what I was on about.
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omg, yeah, awful, never had that, but would not surprise me, poor you. I did have visual hallucinations of the ground rocking in front of me, that was simply horrible and the worst symptom for pure freakishness I’ve ever experienced in my life. Before this all illness for me simply hurt, made you feel sick, tired, or caused you to sneeze!
It’s simply amazing the capacity for strange symptoms when the brain starts to get confused!
I was delighted to never see that hallucination of rocking again after starting such a small dose of Amitriptyline. Never in my life have I had such trauma just buying eggs in Tesco!
Dr. Hain writes about a pilot who had persistent symptoms that whenever his plane was landing the whole earth was at a slant, so he always handed this job to his co-pilot! I think he needs to visit a neurologist!
What?! He certainly needs one. And he needs to stop flying! I don’t like flying as it is without the thought of someone with all these weird and not so wonderful symptoms actually flying it!
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whose dizziness is experienced/noticeable even when your eyes are closed? Or when you are in the absence of visual stimuli like staring at the ceiling? Except for a brief period where I was extremely anxious, I generally feel normal when I’m asleep with eyes closed or staring at the ceiling while relaxing/listening to the radio. What’s interesting is when I had the caloric test, I could feel the rotational vertigo even with my eyes closed, but luckily it only lasted for a minute…which again lead me back to the conclusion that my imbalance is “visually” triggered
The caloric test stimulates the ear/balance mechanism so would naturally make you feel vertigo regardless of what you eyelids are doing.
Yes, when I’m dizzy it doesn’t matter if my eyes are open or closed, I’m still dizzy. Although dizzy is not what it feels like these days - its variable imbalance.
Hi everyone,
Very interesting thread!
Have any of you done any vestibular testing to rule out disturbances there?
My VEMP, VNG, vHIT tests show significant damage to my left inner ear. I was diagnosed with uncompensated labs and migraines at the same time. The labs has been going on for years, with minor disequilibrium, hearing loss and tinnitus. The migraines more recently (I think the migraine dx came when I mentioned visual issues - focusing, depth perception, not so much vertigo, sound sensitivity etc.).
I am most likely starting Ami next week, and this would be an interesting theory. If I receive benefit from it, then I could continue doing my VRT on the meds to “fix the link” between the ear and eyes, while giving the other migraine symptoms a chance to settle down.
As you have mentioned @turnitaround, compensation is impossible in my current migrainous state (and explains why I was going nowhere with VRT), but once that is under control, then compensation (in theory) would be much more achievable.
The neurologist also mentioned that Effexor helps with compensation, but Ami not so much. This sounds like a contradiction to what we are discussing here, but I have read elsewhere that anti-cholinergics can be of assistance.
Are you doing VRT or just compensating in the ‘real world’
Real world. Get out there! Malls, gym , rivers, streets, forests. It also has the benefit of providing distraction and other psychological benefits.
I’m far from better (though improving) but just finished a trip visiting 3 cities in China.
That’s so good to hear you travelled well. I hope things keep improving for you.
The real world really would be the best wouldn’t it? I still think VRT has a role, in training the eye dependence specifically. I just think it needs to be done in multiple environments.
I can’t wait for the right med to come along, so I can try all these theories!!
http://www.dizziness-and-balance.com/treatment/rehab/virtual_reality.html
An interesting take on the future of ‘rehab’
I believe visual vertigo indicates an inner ear issue as the inner ear causes inappropriate occular reflexes that are learnt over a long time during which the inner ear was functioning correctly. If you can stabilise the inner ear function the brain would probably retrain this reflex PDQ, maybe over weeks. The real crux of this is stabilising the inner ear imho. That may probably happen in time spontaneously and therefore take care of itself. You just have to be very patient. Maybe VRT helps. Maybe it doesn’t. I suspect millions of years of evolution would render it pointless :). Probably more important is lack of avoidance behaviours and generally living as normal a life as possible. Theres probably no point in doing VRT whilst on meds because most of them mess with neuro transmitters which will affect inner ear signals and their relationship to movement. Those classed as vestibular suppressants (eg Ami, Nori) are particularly effective in dampening the inner ear to eye reflex: you just have to take one of these drugs at an effective dose and notice a huge reduction in nystagmus, most obvious during a vestibular attack. This is also why they are great for making TV or computer use much more comfortable as the eyes are not being so influenced to move inappropriately.
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