Does this sound like Vestibular Neuritis?

Hello Kevin I've been doing a lot research on all types of vertigo for the last two years the canker plays a major part in vertigo other things that offsets vertigo are chocolate caffeine (coffees sodas etc)these are some things you should stay away from...when you start to feel your eyes to shift take a meclizine over the counter 25mg you can take it up to 3 times a day I hope this information help you on your journey to feeling better

Hello everyone, I am the original poster who started this thread in 2015. Sorry I haven't been around to give updates, but I'm going to make up for it right now with one gigantic update, some 18 months after my sudden onset. Hopefully my story and advice can help a lot of you.

First, let me go back to the beginning; on a fateful day I ate a very small salad from a health food grocery store here in Columbus Ohio. It gave me food poisoning, and my life was forever changed. At the time I was 40 years old.

I had the “normal” food poison symptoms that we all know about, and recovered a few days. This was June of 2015. However, a few days after recovery, I entered into a vestibular downward spiral. My consistent symptoms were:

-Fear of heights

-Susceptible to dizziness/disorientation when on the computer, watching TV, doing quick head turns, being inside stores, seeing patterns in the carpet, being inside doctor's offices

-High-pitch ringing in my left ear

-Fullness in my ears that varied in intensity every day

-Difficulty concentrating

-Unsteadiness as I moved. Sometimes it felt like my head was on a string other times it's like I was leaning in one direction or another, even though I wasn't

-Missing my mouth when I would take a drink. Had to hold my head to realize where my head was.

-Feeling that my body was floating, when stopped at a traffic light.

-Sensitivity to sound, like the bath water running

-Difficulty navigating past other people (ex., walking past people on the sidewalk)

-Difficulty going up and down curbs

-misidentification of sounds. I sometimes thought the garbage truck was outside, only to figure out it's our air conditioner coming on.

-Eye darting. I would try to look at something, but my eyes were pressing to look in another direction. This caused my eye muscles to feel exhausted as I fought to focus on certain things.

-occasional symptoms: heart palpitations, hot flashes, foggy vision (especially when look at moving objects)

Rock bottom was a couple of days straight days I became a “vegetable” This was in the evening; just sitting on the couch, unable to watch TV, unable to have any activity in the room, all while my brain was swirling with disjointed thoughts. I think my mind was confused about the signals it had been receiving during the day, like when a computer become unresponsive when you've given it too much to do.

The impact to my job and life was tremendous. I had to go on leave from work, and had to stop driving. This made me dependent on my wife, and on myself.

I entered into the medical world for help, and got very little in the way of answers. This included two hospital visits, many primary care visits, a neurologist, ENTs. Eventually I saw a “dizzy doctor,” more on that later. It was all one disappointment after another, with appointments that felt like they were just way too far apart given how serous my condition was.

After about a month and a half, things started to turn around! The first help I got was from the Internet, specifically, I learned about how the vestibular system worked. I studied the different vestibular disorders that can happen, and eventually came up with a plausible theory about what had happened to me. I concluded that the food poisoning had awakened a dormant herpes virus in my inner ear, which in turn caused damage to the nerves in one ear. Throughout life, I had experienced a sore on my tongue that would last a few days, so I knew I had herpes (this is the kind that 70% of the population has, HSV-1; it's usually acquired during childhood). Researchers have found that this virus can reside in the inner ear, in additional to the tongue or gums, where most people have their symptoms.

Yeah, it was just a personal theory, but what helped the most was the vestibular exercises I found on the Internet. I just started doing them on my own, without any advice from a doctor. I saw no drawback to doing simple exercises. I was at rock bottom and I needed to do something to fight this condition.

So every day, I was doing the exercises. I also incorporated “normal” exercises like walking around the neighborhood. I looked like a fool, because I would walk down the sidewalk, turning my head from side to side. My symptoms began to gradually improve. They work by training your brain to deal with the confusing information it is receiving. It also helps make you immune to your own dizziness.

At one point I began seeing a vestibular therapist, who mostly gave me the same exercises I was already doing. I eventually stopped seeing her. I did have a couple of recurrences, where my symtoms increased again, but I bounced back faster each time.

Back to the doctors, I had mentioned a “dizzy doctor.” He was neurologist at Ohio State University named John Oas. My rehab and recovery had already been going on for the months of July and August 2015. It wasn't until September when I finally had an appointment to meet Dr. Oas.

The appointment was unlike any I had every had. His style was off the wall (practically unhinged), but his knowledge was way, way more than the doctors I dad previously seen (many years ago he worked at NASA, dealing with spaceflight dizziness). After an intense examination, and an intense interview where he got me to spew every detail of my symptoms, he came up with a theory of what had happened. What he told me stunned me. He said that the food poisoning had weakened my body's immune system, allowing a herpes virus to damage one of my inner ears. I had NOT told him my own theory. I felt relived to know that he came up with the same exact theory as me. That's clarity!

He told me more, he said I'm walking around with my head tilted. What? How did none of my other doctors notice this? That's when it hit me how severe my condition was. Dr. Oas then told me something brutal. “You will be dizzy every day for the rest of your life.” Wow. But he did follow up with, “you'll learn to deal with it though.” Before leaving, I asked him what is the one thing I can do that can help the situation. He said, “make yourself dizzy.” He ordered a battery of tests for me, and suggested that I start rehab again, but with his own assistants this time.

In the meantime, I continued to rehab on my own, making myself dizzy as much as I can tolerate. When it came time for the tests, that was another day I would never forget. Dr Oas was not there, but his assistant strapped me into a chair that was sitting inside a dark closet, basically. The chair spun me around like a carnival ride. I would occasionally be asked to perform tasks. There was one where I had to use the controls to rotate lines until they were vertical.

When I got out, the guy told me I had failed every single one of the vertical line tests. When the results came back, Dr Oas's conclusion was still the same as before. I started rehab at Ohio State. However, at that point I had recovered so much. I ended up doing a couple months worth before telling her that I didn't feel it was necessary anymore. At that point, I was already working again, and felt life was normal enough to move on. Besides, the medical costs were adding up, and I felt they could better use the facilities for people who needed them more than I did.

Happy ending, right? Not really. Here's where I stand today.

-The vestibular damage is still there. My brain has compensated by increasing its reliance on my eyes. I use vision to dodge people and objects by looking at them, as opposed to using my inner ear to “sense” my way around them.

-I have to walk carefully in icy conditions, and where there is uneven ground. In those situations, I walk slower, look at the ground, while feeling things with my hands whenever I can. I have not fallen down, but I do occasionally stumble over a hole in the ground and look like a drunk for a couple of seconds as a re-situate myself.

-I have an extreme fear of heights on the right side of my body. A bridge is a nightmare if I look off the right side. (any car bridge, or walking bridge)

-The world feels different. I can't explain it very well, but every single moment is different.

For the most part. the symptoms I listed at the beginning of this post are gone. I do have a little bit of susceptibility to dizziness. However, I routinely go to work, go into malls, drive etc, with zero dizziness. So glad I can live a normal life again. The prediction that I would be dizzy every day for the rest of my life wasn't true.

In this update I left out other medical issues that came about in 2015 and 2016, because I don't think they have anything to do with the dizziness, and I don't want to make things confusing in this thread. Many of those things resolved on their own. I don't think they were connected directly to my dizziness; but may have been connected to the food poisoning.

My advice to everyone who goes through a similar battle:

-Do vestibular exercises! Make yourself dizzy. I still do them, just to keep my vestibular system strong. I've even created some of my own. I've gotten to the point now where I spin myself around like 25 times and still be able to walk a straight line directly afterward. I've become almost dizzy immune, more so than I was before I was sick. In fact, I think non-dizzy people should do the exercises from time to time. Crazy huh? I believe that having a healthy vestibular system is important for everyone.

-Find your way to a “dizzy” doctor as soon as possible, especially once the regular doctors had ruled out things (like stroke).

-Your improvement may have some setbacks along the way. This is normal.

Well, that's the update.

Nikki.

Kevin I have many of the same symptoms. About 8 years ago I was having month long bouts of dizziness where I couldn't turn my head. It would go completely away and then my right ear started plugging. Never affected my hearing. I was dx with vestibular neuritis. My dr did nothing for it. Then 3 plus years ago I was dx with MS and the swimmy, foggy, feeling in my head became chronic. I've had that feeling for almost 4 years. I have been dx with jumpy vision oscillopsia. I've been through 3 rounds of Vestibular rehab. I am now on home therapy but need to be better about doing it. My neurologist told me that the therapy isn't as effective for people with ms. You definitely need to get into a neurologist and have another MRI. If this is only coming from the inner ear/peripheral dizziness. PT/rehab is quite successful. They will give you exercises for your darting vision called gaze stabilization. My phone number is if you want to discuss this on the phone. 

Caroline

Moderator comment: I have removed the phone number as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

Here I am 3 years later with an update.  My life is normal, but I still have a permanent vestibular disability.  Although I think about it, I don't worry about it.  For the most part it does not interfere with my life, and people around me don't notice anything odd (at least I don't think they do).  I have had a consistent job for five years.  I drive, I go into places, I hike, I do yardwork.

So what kind of difficulties do I still have?  Pretty much two: Unsteadiness when walking in certain situations, and difficulty processing too many stimuli at once (in certain situations).  Here's some examples.  I feel the need to walk very slowly when I'm walking on something slick, like snowy pavement.  When I watch busy movies, I have to "block out" some parts of the screen (with my mind).  I still enjoy movies, but can no longer "take it all in."

Occasionally I suffer eye fatigue.   Not the dry eye or soreness you feel after a long day.  This is eye muscle fatigue.  I believe this is caused by my eyes wanting to "dart around," and me having to hold them back from doing so. 

Occasionally, I go through periods of time where the all the symptoms mentioned above become elevated (eye fatigue, unsteadiness, stimuli fatigue).  I'm not sure if it means I've lost a little more vestibular function, or my brain has decompensated.  Either way, I do some vestibular rehab exercises at home for a couple of days, and then things get better.    

I am never dizzy, I don't have any ringing in my ears, I can still do complicated balancing, like walking on logs (though I rely on sight), I have perfect hearing.  I'm happy with how this ended up.

In the end, my brain has rewired itself to compensate for it's missing abilities.  It may sound odd, but I think I think my brain may be better at certain tasks than it was before, in some ways.

My advice for those who are going through a vestibular challenge:  

-Have an exercise regimine (vestibular exercises, but also regular exercise for the whole body)

-Expose yourself to busy environments

-Don't get carried away with supplements.  Just take a multivitamin.  There's a lot of voodoo science out there (rubbing stuff on you feet doesn't help your vestibular system)

-Play video games.  I don't mean phone games.  Big, complicated games on the TV.  There are cognitive benefits for your eye and brains, even if you don't have vestibular issues.  See link:  https://www.scientificamerican.com/article/video-games-for-better-brains/

I'll continue to update as the years go on, assuming this site will be maintained.  The best thing I got out of all this is a greater understanding of what others with vestibular issues go through.