Question: Hello! Any neurologists or ENTs out there? I certainly hope you can help!

I am a 38-year old woman, non-drinker, vegetarian, moderate smoker (less than a pack a day), not taking any ototoxic drugs, was a healthy weight and regular exerciser until the following:

Last August (2013), after a night of moderate headache and explosive diarrhea, I woke up to find that I couldn't hear but since I'd been having earache and sinus pressure I thought it was just allergies or a sinus infection. I didn't realize the full extent of the loss until I was on the phone and realized I couldn't hear at all, not inside my body when I coughed or anything external to me either. For three days I took decongestants, drank water, rested, etc., I decided three days was long enough and went to the ER-- at that point my ear was burning so badly inside I wanted to scrape it out with a melon spoon. I was diagnosed with sudden sensorineural hearing loss on the right and middle ear infections on both sides. I was given a Z-pack and steroids and sent home.

Since there were no ENT appointments open, I went in for a follow-up at the ER a week later and was told my infections were gone but my right ear still had no AC/BC. I was diagnosed with viral labyrinthitis despite lacking having no spinny vertigo and given another Z-pack and some ear drops for pain.

Soon after, I lost feeling in the apple of my cheek and under my eye on the same side as my deaf side-- not totally, just like the game "deadfinger" I used to play when I was a kid. I could feel pressure but my face felt alien. The semi-numbness (no tingling) freaked me out because it got bad so quickly, only two days or so. I also noticed that my favorite soda tasted like fizzy water instead of vanilla, but again, only on the right half of my tongue.

I finally got in to see an ENT and told him about the cheek numbness, ataxia, falling, and dizziness I'd been having. Not vertigo! More like an up-down earthquake or wiggly floorboards. He said he thought it was a cranial neuropathy, but a CT scan and MRI didn't pick anything up. He gave me acyclovir and the numbness left my face. I'd been getting back a tiny bit of hearing. Two months after the initial loss I was able to see the audiologist, who told me I had 65% pure tone hearing on the right side but only 12% word recognition, and this was as likely as good as it was going to get. She gave my results to another ENT (it was a clinic). This doctor said it was viral labyrinthitis. I asked if he cold dig out my ear to make the burning stop, but it seems clinics don't go for that. I was trying to be funny but just started sobbing. It hurt so bad and I was always tired and I couldn't hear.

Skipping forward a few months, four more ear infections, a fever, another CT scan for mastoiditis (negative), I gave up. I failed the nose-touching test three times in a row but the hospital's neurologists were never able to fit me in. I did eventually get most of my balance back but my hearing stayed the same.

It's been about six months since I've been in to see a doctor. I have tinnitus severe enough that I just can't hear on that side at all on bad days and I can't distinguish voices if there's background music, but otherwise I adjusted to the pain and inconvenience.

Recently the same ear started hurting really badly again. To be fair, it doesn't feel exactly like my ear-- more like if my ear had a throat? Somewhere in my head. It's hard to pick out where it hurts. It's a shooting, burning, acid pain against a very full feeling of pressure. I can't make out a word people are saying. I can tell they're talking, but I can't even guess at what the words are. When they yell, it just makes no sense at a MUCH HIGHER VOLUME. My cheek is going numb again, the valsalva maneuver is painful and doesn't pop anything, I've been running into walls, furniture, pets ... forgetting keys and wallets, and I can't get my words right. I keep switching letters around, especially in pairs of words, or getting them wrong entirely but sounding close enough. The creepiest thing is that I can't identify what's in my purse by touch at all anymore! I used to be great at that and now I can feel all around an object but unless I look, I can only tell you it's (probably) squarish.

Oddly, the numbness in my left front thigh, foot, and toes from when I cracked my tailbone about two weeks before losing me hearing has been really pronounced as well.

I'm exhausted. I can't sleep at all, or fall asleep really late even if I use melatonin or a sleeping pill, and I'm a math teacher! I could not teach at all last year. I knew I'd be facing a challenge this year, but I am an absolute mess right now and it's hiring time. Please help if you can! I need to do whatever's possible so I can fix this, get a job, and pay off last year's hospital bills.

Thank you for any help you can offer!
XXXX

Dr. XXXXXXX

Thank you for your prompt response. It has certainly given me leads to explore that go beyond simple labyrinthitis.

I didn't want to be the woman with everything wrong with her so I didn't include a few of my other symptoms in my initial question; I named recurring, severe, or new symptoms. I would like to elaborate a little more and see if it helps to rule out some of the possibilities or open new ones, but first, I would like to thank you for this:

"First of all, we need to respect your symptoms and give them their due. They are significant symptoms and are leading to disability."

When I read that comment I wanted to cry. I have been treated like a malingerer by both hospital staff and family for so long that I believe I am somehow causing these problems, and if I would just man up and fix myself I could somehow win back their respect. I know my family loves me, but I don't think they understand the amount of shame and responsibility I feel over being exhausted or asking them to repeat themselves again and again. I am fairly certain they think I am exaggerating my symptoms for attention and it is frustrating and isolating.

There is medical history that is probably irrelevant but should be included: In 2009 I was admitted to the ER three times in about two weeks for severe abdominal pain. After an MRI, I was diagnosed as having pancreatitis. Just after that, I was re-admitted for abdominal pain again but this time the MRI showed that my gall bladder was severely compromised and the doctor performed an emergency cholecystectomy. I attribute these problems to the 8 years I spent taking Yaz, XXXXXXX and Ocella.

The summer of the following year (2010) I had severe pelvic cramping that was no longer controllable with diet, exercise, and pain medicine. My gynecologist told me it was pelvic organ prolapse and that it was worsening quickly enough that immediate surgery was my best option. I do not plan on having any other children-- one 14-year-old was enough-- so I went through with it. Since then I have not been able to eat without having diarrhea about 30 minutes later.

As I said, I do not believe these to be related to my current conditions but thought I should mention them anyway. Because of the cholecystectomy and the vegetarianism, I am careful with my diet and I make sure to supplement daily with an oral multivitamin.

In editing my message last night, I erased the crucial detail that I experienced total deafness in my right ear only. I could not feel vibration, hear noise, or even really experience thunder. As my hearing began to adjust, I had auditory hallucinations until I regained enough hearing that the tinnitus settled into what it is now-- a multitonal whine or ringing that changes pitch with a constant buzzing background. Sometimes I can tune it out, but I am usually aware of it and frequently overwhelmed by how loud it is. Also, it sets my other ear to ringing sometimes, although I figure this is just my brain trying to cope.

Here is the additional information that may be pertinent:

May 2013 I slipped in a shallow creek, twisted, and landed on my tailbone on the bedrock. After realizing I could stick a pin in my thigh and feel nothing I went to an after-hours clinic. I was x-rayed and the doctor said I had cracked my tailbone; then he changed his mind, said I just had a very curved tailbone, and the surrounding area was bruised. The nerve damage seemed limited to my left leg, heel, and toe as well as my perineum and the left side of my outer labia. I could not tip-toe. The areas I named had partial loss of sensation and pins-and-needles except for a strip running from my inner left thigh to the outside of my knee, which had no feeling at all, and all healed after a few months except for the numb part which took much longer. This is the injury I was referring to that has been acting up in conjunction with all of the sensory problems on the right side of my body.

While getting x-rays for my butt-bone, I elected to have a tetanus booster. Since I was raised in the military I've gotten one every decade: this was the fourth. I'm no stranger to the feeling of mild flu, sore arm and shoulder, redness, swelling, and bunching, but two weeks after the booster shot, the symptoms had gotten worse. My left arm was hot to the touch, my shoulder knotted and corded, the needle mark was bright red, and I couldn't move my arm. I went back to the same doctor who said I'd probably just gotten a staph infection during the shot and gave me a round of antibiotics. I was vaccinated about eleven weeks before losing my hearing.

And here are symptoms that are more alarming to me:

I went to visit my daughter at university in January. Her roommate was gone so I stayed in my daughter's dorm room. She was talking to me from the other bed and the next thing I knew, a man was saying my name very loudly while my eyelid was pried back and a light shone in it-- the room was crowded with six uniformed men and my daughter was very pale. I was groggy, confused and irritated. I snapped that I could hear them and demanded to know what was going on, which is understandable, but I am generally very polite. My daughter said she was talking to me and between one sentence and the next I was out cold. She was annoyed, called my name loudly, and finally came over to shake me awake but I was unresponsive no matter if she pinched, shook, or slapped me. She called her dorm's desk, they sent campus police, and the campus police called EMS. When EMS woke me up, my vitals were on the low side of normal; they asked if I wanted to go to the hospital but I refused. I don't know whether or not campus police tried to wake me up first... just my daughter talking and then a penlight shining in my eye.

I had two frightening incidents last month that I spoke to my doctor about:

1. I was driving home from the grocery store about 1 1/2 miles from my house. It was early afternoon, but I was paying close attention because I was driving down a stretch of road that frequently has deer crossings. I don't know what happened, but it's as if there was a skip in time because I went from watching for deer to being about 30 seconds past that area with no recollection at all of the elapsed time. I panicked, thinking I must have fallen asleep, but I wasn't sure how I could have piloted down a twisting road for 30 seconds while asleep -- some part of me had to have remained conscious because I was still driving, still in the middle of my XXXXXXX not weaving. I refused to drive for three days until after I talked to my doctor about it. He shrugged, said I was probably just tired, and tried to put me on Lunesta. To this day I have no recollection of those thirty seconds. It was terrifying, much worse than leaving work and not remembering the drive home. When I push myself to think about it, there's nothing there, just ... black. I'm still afraid to drive because I don't feel the issue was addressed.

2. About a week later, I'd slept on the couch that night, not unusual for me. I woke in the early afternoon when my daughter and her boyfriend came back from lunch. I hadn't seen him in a while and greeted him enthusiastically, but what came out of my mouth was a stream of pure gibberish. I stopped, paused, and said, "That didn't make any sense at all, did it?" "No," he said, laughing. I kept talking, this time in what my ears recognized as English, and told myself sternly that it was just a weird parasomnia that I hadn't experienced before, but it scared me. Despite describing both incidents to my doctor in the same session, he did not seem concerned.

(I've had plenty of experience with parasomnias: I grind my teeth at night and have had months of frequent sleep paralyses both falling asleep and upon waking up, although they're not frightening, just painful like a pins-and-needles electric current over my whole body. It's been a long time since I remember having an episode.)

Over the past couple of months, I wake to blinding headaches and severe pain in my shoulders, hips, back, and knees, once bad enough that I had to call my boyfriend to help me bathe and relieve myself. I considered sleep apnea and asked my boyfriend, an early riser, if I snore and how loudly. He said I did, but only moderately loud. I also asked if I ever stopped breathing while asleep and he said no.

Two days ago I lost my car keys in the park. When the police stopped to help, I lost my phone, but one pointed out that it was sitting on the seat next to me. I went back yesterday and left my lighter and pack of cigarettes after looking at them and thinking, DON'T FORGET THOSE. I can't seem to recall tasks I'm doing, where I'm going, or words or phrases that once came easily to me. I’ve been getting turned around very easily lately: I’ll bend to look at something outside, and when I stand up, I think I’ve discovered a trail I never noticed before and it takes several seconds for me to recognize where I am.

I have considered that this may be Lyme disease, despite not living in an "official" Lyme area. I have considered sleep apnea and parasomnias. I've thought about dental problems. I've thought maybe it's nothing more than a sleep deficit or possibly narcolepsy. I had chicken pox twice as a child and shingles when I was sixteen, so maybe another flare-up of shingles (at least that explains the persistent burning in my ear). I've even thought I could be having sleep seizures or experiencing side-effects of the tetanus booster. Of course, it could be a series of unfortunate events.

I do not wish to black out in class or while driving. I am very concerned with how this is affecting my daughter, who is worried about me and has noted enough change in my recent behavior to ask if I've changed my medication. She says I act drunk and it's embarrassing her, and that I'm irritable or asleep all the time and that she doesn't want to come home from school over holidays.

I realize this is a lot of information and I'm still leaving a few bits out, but I'm trying to sort out what's important for the doctors to know. Please let me know if any of this helps you narrow down what the problem might be, and be assured that I will continue to bear in mind your initial assessment.

Thank you so much for the respect, professionalism, and consideration you've displayed.

XXXX

Over the past year, I’ve gained sixty pounds and pushed my family's patience to the limit. I feel isolated, my self-esteem is shot, and I am tired of apologizing for not remembering conversations or not being able to hear.