The things we look forward to when we are better

Clear vision.
Going a single day without crying hysterically
Not fearing each new day because of new symptoms
Laughing 10 times a day–or more-- like I have my whole life
Having a normal feeling head and neck.
Being happy to wake up alive in the morning.

The ground never moving beneath me.

Getting the hell out of this city, and having my own home, again.

Heather

Hey Rich,

Good question. I look forward to:

*waking up in the morning and motion free…and of course throughout the day.

*not having to worry about coffee or chocolate consumtion

*feeling 100% stationary with a clear mind

*taking long car or plane trips without feeling fear, anxiety and increased motion

*being able to work full-time

*increased confidence

*no more brain fog

Joe

— Begin quote from "rich1975"

I firmly believe everyone here will eventually get well. Absolutely, 100%. Not sure when it will happen or under what circumstances, but as long as we don’t give up, it WILL happen. If people can be free of anxiety, depression, fear, phobias, all of which cause real physical symptoms,…there must be hope for MAV as well. People get cured of deadly diseases like cancer. I’m not exactly functioning well enough here to be optimistic lol, but being negative has never, and will never accomplish anything

— End quote

Rich, MAV is a chronic disease and its course varies by individuals. It is NOT a result of bad attitudes, and negativity. There’s a phrase “blaming the victims”, and absolutely no one here deserves any blame.
A supportive and sensitive exploration of the impact that this disease has had upon us, is actually quite positive.
I have posted facts–that studies published in the NE Journal of medicine show that after vestibular neuritis, 50% of patients have residual symptoms. They didn’t “give up”, they had a virus.
Kira

— Begin quote from "joseph0952"

*not having to worry about coffee or chocolate consumtion

— End quote

Hey Joe,

What happens, specifically, when you drink coffee or eat chocolate?

Heather

— Begin quote from "Rich1975"

I’d like to re-direct on Brian’s post…rather than dwell on what I’ve lost. …being negative has never, and will never accomplish anything.
Rich

— End quote

Brian’s thread, and the responses to it were neither “dwelling” nor “being negative.” I’ll repeat here something I posted in said thread:

For me, the road to health has and will include consciously processing/grieving my losses, as well as re-prioritizing what is important to me. In order to do that, I need to be aware - of what I’ve lost, given up, and what those things actually mean to me. Sharing these things with others has been **nothing but **therapeutic to me.

What I love about this board, is that it’s been a place to find top-notch information on MAV and its treatment, as well as to share honestly my experience of it.

Julie

— Begin quote from "Julie"

For me, the road to health has and will include consciously processing/grieving my losses, as well as re-prioritizing what is important to me. In order to do that, I need to be aware - of what I’ve lost, given up, and what those things actually mean to me. Sharing these things with others has been **nothing but **therapeutic to me.

— End quote

Wonderful words of wisdom, Julie.
It is true. One needs to be aware of what one has lost.
But is it really lost?

All I know is I’m a confused corpse.
LOL what an expression.
Heather the corpse.

Heather the corpse,

Exactly!

After I wrote that post I mused about whether I had really ever lost it. During my Black Spell, I thought it was gone - forever (that’s the hopelessness of depression). But as I recover, very slowly, I am returning, a new me, for sure. I’ve been to hell and back and you don’t make that trip without a few scars and some lessons along the way. But I am hopeful again - of nothing in particular - I don’t expect 100% recovery from a chronic illness - I’m just thrilled to be able to take a 20 minute walk every day.

I remember from one of your earlier posts, you told your Dad that you didn’t care whether you lived or died, but you knew deep down inside that you did care. A year ago, when I thought I was dying, I used to tell myself “I don’t care!!!” But the answer would come right back at me “you do care, very much”

Heather the corpse, you’re not dead yet. Enjoy your Xanax-induced peace again tonight, you deserve it - tomorrow is yet another day.

Julie

Hi Heather,

You asked what happens when i over-indulge in Chocolate or Coffee? Well they both have Caffeine so i get an almost instant increase in back and forth motion in my head. So i make sure if i do drink coffee it’s ususally Folgers reduced caffeine (1/2 less the caffeine). Only drink a 1/2 cup per day on weekends only. During the workdays most of the time i leave coffee alone. If i were to go back to drinking 4 cups of coffee…i am sure the rocking would get out of control. Also…i get a stronger reaction from See’s Chocolate Candies vs a Snicker candy bar. I guess because See’s candies are much richer. I notice that if i consume too much sugar that can also increase the motion.

Joe

Thanks Joe!

You sound similar to me. Like yourself, I used to drink 4 cups a day.
I can’t do that anymore.
I drink a half a cup a day. If I do more, I get weird.
But before I started to figure things out, my symptom diary was pretty odd.
All my notes kept saying is caffeine effing with me? Lol.
I mean it was horrible.
I had drank coffee for decades, no problem.
So when all this wild stuff started happening to me, I didn’t immediately see the coffee issue.

Then when I got to Pittsburgh, things got worse and my notes read, no vertigo till coffee.
I mean, Jesus.
I miss the days where the floor wasn’t bouncing 24/7 and I could write the words “no vertigo until . . .”
Makes me sad.

What other foods or substances mess with you?
BTW Joe, I have been reading old posts and read that it took you 14 years to get a diagnosis?
Were you seeing Dr. Jekylls or what? :shock:

Heather

Heather,

The main foods/drinks are Chocolate, Caffeine, Msg, Certain kinds of Cheese, Alcohol, and too much sugar. Plus i need to get close to 8 hrs of sleep per night and little stress. That is good that you were keeping notes. I drank coffee for years too without no problem. So you feel the floors bounce? I don’t have that but there are times i feel like i’m walking on a waterbed. Like i told Rich, I feel like i am moving rather the world around me. Some Mav folks here are experiencing the world moving but they are feeling still.

In 1992 i was first diagnosed with “Panic Disorder” and then a few years later the doc changed it too “Inner-ear dysfunction w/Anxiety”. Another doc thought i might have inner-ear dysfunction but also might have a bad case of Benign Positional Veritgo. So i had the Epley Maneuver done but it did not help for BPPV. When i look back my dizzy condition was very similar to Benign Positional Vertigo because whenever i had a Spin it was always in bed and i would wake in the middle of the night with the room spinning. I was probably shifting from my left side to my right side. When doc’s thought i had an Inner-ear problem i thought my right ear was the bad ear because i began to notice i was lying on my right side in bed when the spinning would begin. Who knows…maybe this Mav condition is partly an Anxiety condition along with an Inner-ear problem and Migraine. God only knows for sure!!

Joe

Joe,

I 've used the following to describe it:

walking on a trampoline
walking on a suspension bridge

Or for all I know, it’s the damn elevator going up and down that I was on for so long.

It’s not something I see (thank God!) it’s what I feel.
But then like you, I get that God-awful motion in the head.
I would give anything if Xanax or Klon stopped the floor thing.
But at least they help with the motion in the head.
They also help my neck issues and back of head pain.
I’ve been getting a lot of base of skull insanity lately that goes into the neck and shoulders.

I would have to say I feel like I’m moving and the world is moving, both.
I’m not the floor am I? Lol. But other than the floor, no, I don’t get any world-moving stuff.

Anxiety/Panic is going to go hand in hand with any vestibular problem. That’s just common sense.
At UPMC, one of the doctor’s assistants was talking about how natural it is to develop panic with all this.
And it really is.
You sensory world is being altered.
Who wouldn’t panic?
I remember what I believe to be my first panic attack and it was back in Chicago when I feared getting on the elevator.
Why?
The elevator would bring on vertigo, head and ear pain.
It got so bad I refused to leave my condo and had groceries delivered.
Then I called my family to get my butt out of there.
Now I regret the long-distance car trip.

Do you have a problem getting up in the morning after laying down flat?

Heather

— Begin quote from "Rich1975"

And on a side note. From Wikipedia…
<<<One study found that patients who believed their illness was out of their control showed the slowest progression to full recovery, long after the initial vestibular injury had healed.[1] The study revealed that the patient who compensated well was one who, at the psychological level, was not afraid of the symptoms and had some positive control over them. Notably, a reduction in negative beliefs over time was greater in those patients treated with rehabilitation than in those untreated. “Of utmost importance, baseline beliefs were the only significant predictor of change in handicap at 6 months followup”.>>>
Rich

— End quote

Hey Rich, I agree with that completely. Sounds like - very simply put - a good attitude will help in recovery … or at least in living - and enjoying the life you’re in the middle of. I don’t feel the least bit like Sally-freakin-Sunshine today. I know that I won’t start ‘feeling’ better until I can get my attitude fixed. The problem is, how do I fix the physical stuff that’s causing my attitude to bite. With this bad attitude comes the “what difference does it make if I eat a Rally’s Hamburger & fries or not! I’ll feel like garbage either way.” On the other hand, if I’d try harder to watch my diet, I’d feel better. But it seems like it doesn’t matter WHAT I do … yeesh. I’m a mess. If I didn’t like to eat so much, I’d go on a three day fast!

And I’ve never considered myself one to have panic attacks or not be able to handle anxiety & stress. Maybe I’ve been fooling myself - on the other hand maybe I’ve camouflaged my anxiety & it’s now finally rearing its ugly head in the form of actual physical problems. So it’s a combination of the two - anxiety & physical break-down or illness. They’re two separate problems, but one sort of encourages the other, if ya know what I mean.

— Begin quote from "Rich1975"

Joy, you bring up excellent points. That indeed, is the catch-22. I’m in a panic almost every day, despite using xanax, and trying to cope. So I just want to make it clear to others that I’m not sitting up on some pedestal claiming that I am somehow Mr. positive lol. I’m not! But I know it helps, sometimes as much as medications and therapies, and it’s proven. How to get there is another story. THAT part I haven’t figured out lol.
Rich

— End quote

FIGURE IT OUT! Bottle it & I’ll buy two!

There are many, too many, schools of psychological theory, but depth analysts claim:

the way to get there is to not deny your negativities, or your positivities. you cannot get to any genuine emotional state through will power. we are not capable of that kind of control - that is only denial. Becoming aware of what is actually going on inside, feeling it, processing it, living with it, whatever it may be, is the only way to lead a genuine life. And then it’s not even about “attitude,” it’s about truth. It’s not an easy path to follow and many do not chose it.

I think I may be tripping over semantics here. Seems to me it all boils down to - yeah, accepting what’s wrong -then (gulp) making the best of it. I didn’t mean to imply that I can heal myself through will power. Heck, I can’t even fight off a stale cookie most of the time. (No wonder I feel bad!)

— Begin quote from "Julie"

…And then it’s not even about “attitude,” it’s about truth. It’s not an easy path to follow and many do not chose it.

— End quote

Then what path do they chose? Denial? Deny that they have a physical ailment, ya mean? And what does that lead to?

re-read my post. It’s about being genuine with yourself (truthful) - not trying to will yourself into a place you would rather be - that’s control and denial.

You can only know this place by experiencing it, and everything along the way .

it’s not about how you’re thinking, it’s about how you’re feeling.

Well, after 20 years, I don’t like to think of myself being “stuck this way”. I quit thinking that somewhere around the 10 or 11th year.

Rich, the truth is, you do have this condition. Just like the rest of us.(if not you’re on the wrong board). Nobody’s knocking your positive attitude, but nobody here is gonna nurture your denial. (especially when its so destructive to others).

Kim

Well, hon, how many have you heard of ever being cured?

By the way, Rich, whats your opinion these days on the “brain imbalance” thing??? You had the cure last week. What happened?

— Begin quote from "Rich1975"

My anxiety is not under control. My panic is not under control.

— End quote

Mine is getting worse.
But I assure you: I never had a panic attack or anxiety attack or even depression,
before developing a vestibular problem.
Keeerist Almighty, my nickname was “funster”!!!
The worse my vestib symps get, the worse my anxiety/panic gets.
Heck I was terrified to even go to the eye doctor today.
I can’t stand what happens when I leave the house anymore.
Just going to Doc offices nearly pushes me over the edge.
I have 2 emotions these days: sadness and rage.

Heather