The day from hell ---all for a good cause lol

Vibration? WTH is with the MRI vibration?
I had an MRI and MRA in chicago with NO vibration.
Then had the nightmare MRI here in Pittsburgh and all hell broke loose from the vibration.
Do ya think they can make the noise any louder? :shock:

About Meneire’s, yup 2 ENT’s thought I might have it.
Silly. Is that what they all think and nothing else?
One guy thought I had it just because I slightly swayed with my eyes shut and my arms out.
That’s nuts.
Another thought so because I have slight high and low loss in left ear.
I didn’t even notice it and I had a hearing test 14 years ago with either high or low slightly off.
I don’t want a mis DX now, because of a hearing test 14 years ago.
Not to mention, I don’t think people get menieres riding high-speed elevators!

I don’t have “attacks” of spinning vertigo and think I’m going deaf.
Menieres people usually say they are afraid to have an attack in the car.
I don’t fear in the car, I fear what happens when I get OUT of the car and stand up to walk.
If you can call it walking. Lol. Much more consistent with MdDS/MAV
I’m not so sure I do not have something wrong with my ears. Especially my right ear.
(And I have perfect hearing in that ear)
I had a tympanometry done and the pressure exerted in my right ear flipped me out.
I yelled and pulled out the ear piece. Strangest thing though, a Neurootologist actually thought it had to do with my sinus
and the ENT pointed the finger back and said No–inner ear. Who can believe these guys???

Heather

— Begin quote from "Rich1975"

Heck, it’s worth it for my peace of mind just to know that there is absolutely nothing going on with my inner ears . . .

— End quote

I thought you had a history of Labyrinthitis and that’s how your whole nightmare started ages ago, with your ears?
You know, pinching your nose and blowing hard?

Heather

Sorry, but thats not isolated Rich. :frowning:

I agree.

I think Rich’s problem is partly inner ear and someone is not doing their job.
I think mine is partly inner ear too. I had too many ear symptoms when it began, to just forget about that.
I actually thought of perilymph fistula at one time. (Still might)
Doesn’t mean someone can’t also have MAV or MdDS though.

Heather

After reading some horror stories I doubt I will do balance testing like ENG and rotary chair, I am too motion sensitive to take that nightmare on.

Talked with a couple Docs, one thought migrainous, another thought Middle ear, another thought menieres. Lol. Typical.
My problem started with riding elevators with sphenoid sinusitis, then grabbing my nose and blowing hard to open my ears.
Then hell would break loose. I actually thought I gave myself a fistula. Bending the head forward was particularly problematic.
Ears felt sore like earaches.
Huge loss of hormones.
Felt weird sitting on a toilet and bending forward to get up. (Still do)
Started feeling like I was “floating” all the time. Couldn’t feel the ground.
Couldn’t ride the elevators anymore.
Then took a long-distance car ride (DUMB)
Flo light, and visual symptoms, motion sickness and sensitivity, and a host of other problems all started .
Ground was bouncing under my feet, or feeling like I was walking on a trampoline.
Even standing can be problematic, my legs shake a lot trying to keep myself steady. Knee joints are starting to bug me.
Sometimes I can feel something draining in my right ear.
Only time someone looked for nystagmus was a DIX Hallpike which was negative.

Although an optometrist noticed GEN (gaze evoked nystagmus) however, I had popped a Xanax before seeing him and Benzos can cause nystagmus.
So who knows if the gaze evoked was because of the drug or because of a balance disorder. I say the Xanax did it.

By the way, I never said you couldnt have MAV and an inner ear problem.
Even Dr. Zee at Hopkins said you can have more than one problem at the same time.

Rich-
What tests did you have done that confirmed Labrynthitis???

HEY RICH- What test did you have that confirmed Labrynthitis???

— Begin quote from "Rich1975"

Any increases in symptoms during the ENG ALWAYS, and I do mean ALWAYS, go away. They are short-lived. They are very scary because you get faced with a situation where you feel you are out of control. Basically, the ENG elicites a “spinning” vertigo for about 1 minute in each ear, twice! So that’s 4 minutes of spinning vertigo. I put up with violent spinning vertigo for 4 straight days lol with the labrynthitis, so 4 minutes was no big deal for me. But for those who haven’t had that, it can be VERY scary. But it DOES go away. Plus, it gets easier with each repetition. Once you know what to expect, you feel much more confident that the spinning stops, and you are normal again (or as normal as you were when you went in lol).

— End quote

Heather,

I am by no means saying you shouldn’t have an ENG, but I thought I should respond to Rich’s description of his experience so you are aware that not everyone gets over an ENG so quickly. In my experience, it got worse with each of the four repetitions. There seemed to be a cumulative effect. I vomited on my way out of the doctor’s office and was sick with constant rotational vertigo for four days after. It took another ten days after that to get back to the state I was in before the test with one additional symptom. I have had tingling on my face and arms since the ENG in January. I know this is a symptom of MAV, but I didn’t have it until immediately after the ENG. And of course, the results of the test were normal.

Marci

— Begin quote from "MarciM"

— Begin quote from "Rich1975"

Any increases in symptoms during the ENG ALWAYS, and I do mean ALWAYS, go away. They are short-lived. They are very scary because you get faced with a situation where you feel you are out of control. Basically, the ENG elicites a “spinning” vertigo for about 1 minute in each ear, twice! So that’s 4 minutes of spinning vertigo. I put up with violent spinning vertigo for 4 straight days lol with the labrynthitis, so 4 minutes was no big deal for me. But for those who haven’t had that, it can be VERY scary. But it DOES go away. Plus, it gets easier with each repetition. Once you know what to expect, you feel much more confident that the spinning stops, and you are normal again (or as normal as you were when you went in lol).

— End quote

Heather,

I am by no means saying you shouldn’t have an ENG, but I thought I should respond to Rich’s description of his experience so you are aware that not everyone gets over an ENG so quickly. In my experience, it got worse with each of the four repetitions. There seemed to be a cumulative effect. I vomited on my way out of the doctor’s office and was sick with constant rotational vertigo for four days after. It took another ten days after that to get back to the state I was in before the test with one additional symptom. I have had tingling on my face and arms since the ENG in January. I know this is a symptom of MAV, but I didn’t have it until immediately after the ENG. And of course, the results of the test were normal.

Marci

— End quote

Agreed. I have read many ENG journal entries and instruction sheets and have talked to a number of super-specialists and/or their assistants and not once was I told anything but the dizziness caused by the ENG goes away **for most people **in a short amount of time. It would be highly irresponsible for anyone to claim anything else. In addition, anecdotally, I have heard stories such as Marci’s. Heather can tell you about what happens after being told about statistics and that everything should be fine.

I opted to not have an ENG, not because of what I said above, but because the results, either way, would not have impacted on my treatment.

Julie

Never said it wasn’t safe - Please educate JH about that next time you’re down there - set them straight on their trumped up claims.

When my daughter saw the head of neurology at Children’s Hospital for MAV–she had an ENG pending, ordered by her neurologist who was unfamiliar with MAV. She was strongly advised not to have the test.
Also, she was advised to avoid any head and neck surgery that would involve activating the cranial nerves (her symptoms started after a “routine” tonsillectomy")
As people with Mal de disembarkment syndrome, which overlaps with MAV, can be triggered and symptomatic for long periods of time after vestibular stimulation, each situation needs to be evaluated individually.
As in any medical test–will the results change treatment? Will they confirm or exclude a diagnosis? Can the diagnosis be made on clinical history? If so, why is the test necessary.
Kira

— Begin quote from "Rich1975"

— Begin quote from "AZdizzy"

Rich-
What tests did you have done that confirmed Labrynthitis???

— End quote

Plenty of tests my friend. Not every test done is necessarily a direct test for something like labrynthitis (which can’t be tested for directly as you already know), but just like a diagnosis of “the common cold”, labrynthitis can be diagnosed quite easily with the presenting symptoms, history, and onset. But you knew that already.

Rich

— End quote

Rich, sudden onset of vertigo can be labrynthitis, or it can be a stroke or MS or acoustic neuroma. The common cold can not be tested for–we don’t have simple in office tests for it.
Facts are facts, opinions are opinions: we are dealing with vestibular issues that are still being defined, and the treatment is still in its infancy.
MAV can not be tested for either.
The current theory about MAV–from a recent national meeting, is that a multitude of vestibular disorders overlap.
Kira

or it can be cardiac in origin. One of the warning signs preceding eventual sudden cardiac death is dizziness.

Of course they do them, unless, as Kira pointed out, they are deemed not to be safe in an individual situation. but none of them claim that they are without risk - that’s all I’m saying, nothing more, nothing less. EOM.

Quote from your earlier post - this is a false claim:

“Any increases in symptoms during the ENG ALWAYS, and I do mean ALWAYS, go away. They are short-lived.”

— Begin quote from "Rich1975"

The symptoms ALWAYS go away, even if some people take a little longer. It Marci took 4 days, but it went away. Nobody here can claim that an ENG permenantly injured them.

— End quote

The bad vertigo went away in 4 days. It took another ten days to be functional again, and after four months, I still have the tingling in my face and hands that was definitely triggered by the ENG. It may not be permanent, but only time will tell.

Yes, tingling in the face, arms, and hands is a migraine symptom. The ENG triggered the symptom for me and it has yet to go away. I’m sure of this because I did not have it going into the test, but I had it coming out. The ENG might not have affected me if I didn’t already have migraine symptoms, but it definitely made my some of my existing symptoms worse (vertigo, phonophobia, ear pain, nausea, etc.) and added the new tingling symptom to the list. It was so strong and scary at first that I went to urgent care afraid that I had a stroke. They were concerned too and did an immediate MRI, which of course was normal…

Marci,

you’ve been through the mill Marci - sorry that you had to suffer so much. I decided going in, based on what the people at Johns Hopkins told me, that i would not have the rotary chair - Cr. Carey said it was tortuous to the patient and gave little information, same with posturography. ENG I would have accepted if they thought it would make a difference in my treatment, but they did not, so why have it.

Did your ENG give you any useful results?

I hope your symptoms calm down soon. It’s real scarey when symptoms get worse instead of better. Thanks for sharing your experience.

Julie

— Begin quote from "Julie"

Did your ENG give you any useful results?

— End quote

The ENG came back normal just as the CT, MRI, MRA, hearing test, and of course the myraid of blood tests did, so whether it was useful is up for debate. I guess you can say it helped rule things out. With everything coming back normal, my neurologists diagnosed MAV, although he doesn’t call it that. He said he doesn’t typically use the term migraine because of the common misconceptions, but confirmed we were talking about the same thing when I mentioned MAV. I am now waiting for the results of an echocardiogram with bubble study, although I doubt the results will change my course of treatment either way. At least that test didn’t cause me any difficulties. The one thing the ENG did for me was instigate my trip urgent care where I saw an nurse practioner who didn’t know very much but was very compassionate and determined to get me into the right doctor. She recognized that the ENT was probably not going to be able to help me and sent me to a good neurologist who started me on the migraine diet and Verapamil.

My neuro-oto didn’t require an ENG - he was able to diagnose with history and physical findings, with the only confirmation being (as Buccholz says) my positive response to medications. I’m glad that something good came of the ordeal and I wish you the best with your ongoing search for the right doc, the right dx and the right treatment.

Good luck and thanks again for sharing your experience - it’s been helpful to all of us.

Julie