Long ago and far away in an average childhood this disorder began.
Being raised with parents who liked neither Dr's or their fee's, it went unattended- i adapted- life moved on until it couldn't anymore.
My own very personal mid-life crises came when my body said it was done, it couldn't stand against these vestibular forces any longer.
Which brings me to here.
This is the workings of your inner ear/vestibular system.
It keeps your body upright and functioning, helps your gaze stay steady, allows you to function in gravity, moderate sound, process vibrations, etc, etc, etc.
Dear Mal Debarkment
Isn't it wild looking?
Every receptor in your body and all eye cues are connected to and coordinate with this bizarre and remarkable fixture.
The liquid inside it is also in symbiosis somehow to your spinal column fluid and its pressure.
Seriously important architecture here.
......... And I have 2 holes in mine.
You cannot BELIEVE what havoc they cause!
Welcome to the world of Superior Canal Dehiscence.
Actually, it's not so dear.
MDB is a very strange disorder where your vestibular system tells you that you are still doing something that you aren't doing, and it keeps adapting itself to that thing you are no longer doing.
For example: you've heard the saying "sea legs"? When you have got off of a boat and your legs act like they are still navigating the seas.
For some people, they will also feel motion sickness and the motion of the seas, not just for a few hours, but for days, weeks and even months.
It can happen after riding in trains, cars, planes. It can happen after dancing or running.
Your inner navigator gets stuck in a kind of feedback loop.
A friend of mine took a cruise and was doing well, not much motion sickness at all.
When the boat docked is when her real adventure started. For 2 weeks she was on tilt. She could not navigate walking or sitting or head movement, she was very nauseous. She told me about it, she was pretty distressed.
I welcomed her to my world.
As she began to adapt to it, she made a bold decision - she was going to the gym to run on the treadmill.
Within minutes, she broke the feedback loop, the MDB was gone.
She didn't intend to break it, she just wanted to take her life back, and was willing to accept the consequences of the attempting.
I was listening to a woman speaking about her challenges with a chronic vestibular abnormality. She was asked about traveling in a car, which can be quite a challenge ! She spoke of a 'silly" ritual she had, that her husband would stop after they'd travel a certain amount of distance or time, and she would get out of the car and do a " silly little dance". She wasn't trying to explain it scientifically, but found that it helped her not get sick when they needed to travel.
I think she was resetting her feedback loop.
I have tried it, and it seems to work for me. Although my distance limit before MDB can be as little as 45 minutes.
The other trick i have is to plot a course of small errands along the way to my destination [ that aren't too vestibularly challenging]. It makes the drive much longer, but i am at least able to make it.
Recently I've read some papers from vestibular therapists that feel creating more motion/new motion is good for those trying to cope with long term vertigo. I suspected they were suggesting the same concept, break the feedback loop, change the conversation your vestibular system is having with your body.
They don't suggest anything radical like gravity boots ( especially if dealing with BPPV and the calcium crystals could dislodge again) but they do suggest movement other than what you have been doing.
Now i read that Mount Sinai has founded a treatment based on a similar principal ( at least i believe it is a similar principal). They have created a series of seemingly gentle moves that counter the direction of what i am calling your "feedback loop" that seem to break the spell in most people.
The brain is an amazing creation.
Playing with it is a limitless source of wonderment. Like uncovering hidden treasure.
Well, ok, when i am struggling to stay upright and feel like i've been hit by a 747 and dragged into the stratosphere, maybe those aren't the terms i use for my experience. But once i rebound a bit, i can't help but be amazed at the wonder of it all.
Autophony down to my soles
The definition goes:
au·toph·o·ny (aw-tof'ŏ-nē),
Increased hearing of one's own voice, breath sounds, arterial murmurs, and other noises of the upper body; noted especially in disease of the middle ear or of the nasal fossae.
For me it also includes vibrations from walking - the impact of footfalls on the ground. Those vibrations travel through my body into my brain - and rattle around in there. Pretty darn distressing. Made walking anywhere a bit of a hellish experience.
[ Which made me very sad, as i am a walker by nature.]
I found some shoes to help.
Sinuses and balance
And the thing is - i have to walk. Walking seems to re-set my balance system, and helps it stabilize better. It is also one of the few aerobic exercises i can still safely do, and if i don't get exercise, i don't sleep very well, if at all. Especially in summer when there is soo much more daylight.
Who knew?
Fill up your sinuses with fluid or infection and you can set your entire world on tilt.
Actually any infection or inflammatory response that impacts the fluids in your spinal column or sinus cavities ( which is probably most infections in your body ) will effect your vestibular system.
Dealing with inflammatory response you can find laced through all the other pages of this site.
As for the sinuses, I have a new addiciton. It is fabulous! I use " Rescue " version for rough days, and the basic version for everyday.
The "RESCUE" spray has xylitol ( which shows some promise in defeating bacteria in inner ear infections in kids) and grapefruit seed extract- of which i have been a fan for years! (It's a natural antibiotic) as well as oregano leaf oil ( natural antibiotic) & tea tree oil ( natural anti fungal )
Vestibular patient shares her experiences
For those suffering with vestibular disorders or the clinicians treating them, Sue Hickey shares a bunch of valuable information plus anecdotal stories that can tie together symptoms and offer possible tools to address them.
It's almost an hour long, but well worth the investment.
Grateful for her willingness to do this.
Vertigo and claustrophobia
During a bout of BPPV ( Benign paroxysmal positional vertigo ) I was noticing i would begin to get dizzier if my vision was corralled. In my shower, with the curtain so close, i would feel an impact. If i sat up close to the wall behind my bed, big impact. In a tight bathroom stall- more impact.
I began to wonder- could vestibular issues cause claustrophobia sensations?
Could they BE the causal agent for so much of it in middle aged women?
We all know more women then men who experience vertigo in or around middle age. This also seems to be a time when women's phobias increase. Women i have known that have never had problems with amusement rides, scaling high rock walls, dancing like crazy in a crowd.... all of a sudden can't do those things without severe anxiety any longer.
Time to google......