Has Anyone Heard of This?

I have tried the Meniere’s & Hyperacusis forums to see if anyone has heard of my symptoms. The responses I got led me to this forum. I would appreciate knowing if any of you think this sounds like MAV. I’m desperate for some help.

In October of 2007, I began having a “static-like” noise in my left ear. The noise would be faint at some times & at others it would gradually go from faint to extremely loud & crackling. When it reached its loudest volume, I would experience a “jolting” sensation as though someone stuck a stun gun in my ear & fired it. When the shocking sensation hit, the world around me would jump up & down making me very dizzy. The episodes continued on an irregular basis until 12/31/07 when they abruptly stopped. In February of 2007, my B/P shot up & I began taking Dyazide. Then, in May of 2008, the tinnitus returned along with the “jolting” episodes, & they have continued ever since. Some days I only experience 3-4 attacks. Other days, the attacks can be continuous with only a few minutes between each one.

Medical History: I have never really suffered from chronic headaches, although I have had a few bad sinus infections with headache over the past 2-3 years. I have been seen by 2 ENT’s, an allergist (allergy testing done), my PCP numerous times, & finally had 3 inner ear perfusions at Shea Clinic in Memphis. I have been on multiple medications-- antihistamines, diuretics, antibiotics, sedatives, anticonvulsants, steroids, & a round of Valtrex. 2 ECOG’s were positive for Meniere’s. In addition, I have had negative blood work (all kinds), CT scans, & an MRI. Nothing has given me any relief. I haven’t been able to work since June of this year. I’m beginning to wonder if I’m being treated for the correct disorder (Meniere’s).

Do my symptoms sound familiar to anyone? So far, nobody has acknowledged having or knowing someone with similar symptoms. Any info would be appreciated.

Hi Dizzyrn-

Welcome.

Do you have progressive hearing loss typically associated with menieres? Do you have any other symptoms, other than the auditory and dizziness that comes with it?

Along with the million and one symptoms I have due to MAV, I have alot of crazy stuff going on with my hearing. Its all very fleeting stuff, thankfully, but its there nonetheless. I’m not sure if its anything like yours, but I’ll quickly describe it.

Occasionally, I will get something that feels like a freight train going through my head. Its loud and frightening, but I feel it more than I hear it. It knocks me unsteady on my feet, only lasts a couple of seconds before it disappears, and I would have to describe it as being one-sided. It leaves me feeling very unbalanced and dizzy.

I also at times, get (what you might describe as normal tinnitus ??? Again, thankfully, it only lasts a minute or two, and disappears). A loud pitch squeal sound. It starts off loud, and slowly lets up over minute or so. For some reason, it affects my balance.

I also, have on occasion distorted hearing. My own voice sounds like its vibrating in my ears as I’m speaking. Very annoying, and once again, thankfully, its gone very quickly.

I don’t know if you are suffering from MAV, but I’m sure you will get enough information here to be able to make an informed decision about whether you should pursue the MAV thing or not. I know of others here who also experience strange auditory stuff, so hopefully you will get some feedback.

Kim

I have no hearing loss & only the symptoms I’ve described. My symptoms are somewhat similar to yours in that they are transient most of the time. However, for the last 2 weeks, the episodes have been almost continuous & even wake me up at night.

If it is any help, I get two different type of “attacks” similar to what you describe. I get the high pitched squeel that Kim described, but I don’t get any type of vertigo with it. I also get a low pitched hum that I can actually feel: my ear seems to vibrate with the hum and gets warm, almost a glowing type sensation. With this, the room tilts or shifts to one direction, but then it is all over in less than a few minutes, and the room goes back to normal. The second sensation that I describe is often, but not always followed a few hours or less by a dizzy spell, usually low level, nothing I can’t handle.

What you describe does not sound like meniere’s, especially since the tinitus goes away and your hearing returns.

What is your vertigo like. Usually, most people define it as a spinning sensation only. I have never experienced the spins unless I had to much alcohol to drink before going to bed. What I experience is a floaty sensation, like walking on a giant waterbed, with the room rocking back and forth, sometimes tilting one way or the other, sometimes taking a giant shift in one direction on me. The later can knock me on the floor.

Anyway, I hope that something here helps,
Brian

The vertigo is an “up & down” motion. The room & everything in it jumps up & down, kind of like a TV where the picture is rolling. I do have Meniere’s as confirmed by 2 positive electrocochleographs & 4 physicians, although all admit my symptoms are very unusual.

— Begin quote from “dizzyrn”

The vertigo is an “up & down” motion. The room & everything in it jumps up & down, kind of like a TV where the picture is rolling. I do have Meniere’s as confirmed by 2 positive electrocochleographs & 4 physicians, although all admit my symptoms are very unusual.

— End quote

The “vertigo” you describe does sound like what is sometimes described on this board. With meniere’s, the vertigo is spinning. I too have meniere’s, both ears if I were to believe the local ENT’s. I also have an ENT with higher credentials than the locals and a nuerologist who say I don’t have meniere’s. Since the local ENT’s don’t understand why migraine preventative treatment has worked for me, I tend to go with the second two doctors.

My point is you can’t always go by what the doc’s say. Heck, not all doctors have heard that there are more types of migraine than just the classic extremely painful type.

The problem with meniere’s is that there is no way to truly diagnose it other than an autopsy. There are a lot of other deseases that mimic meniere’s and they have to be ruled out first and can lead a doctor to surmise that it could be meniere’s.

The problem with MAV is very similar. There are no tests to truly diagnose it, not even an autopsy. :lol: The only way to diagnose MAV is to take a look at the symptoms, after everthing else has been ruled out. If the symptoms look like the could be MAV then start a migraine prevention plan, usually including meds. If the symptoms start to decrease, then chances are that it’s MAV. IF not, then it is probably time to move on, and look for another possible cause.

With meniere’s, there is no treatment plan, just prepare your life for the unexpected vertigo attack, and wait for your hearing to slowly fade away to nothing.

OK, I have ranted about meniere’s long enough. :mrgreen:

I did want to get back to your original question. The tinnitus and jolting sensations you describe do sound vaguely similar, but not quite a match to what most of us describe as soom of the weirder things we experience. Try doing some research on vestibular migraine, and see if anything comes up that looks familar to you. If you haven’t done so already, you may want to talk to a nuerologist.