Back to "normal"

My audiogram at my appt yesterday showed that the hearing level in my diseased L ear is now equal to the not so great R ear.  The lower tones that are reversible have improved.  The upper frequencies (female) are forever
impaired.  That's what the hearing aids are for. 
I have had a couple of vertigo episodes but I am able to correlate them with a high salt meal eaten out.  So, that's under control too. 
The tinnitus is constant.  Doc says it is permanent, a result of damage that has occurred and is not reversible.  Oh well, it could be worse.
BP was 98/50.  No changes in the diuretic.  Doc commented on how dry my skin was.   I'm an old dried up piece of leather.
Next appt is in 6 months.    That may be my last if we move. 

A Periodic Update

Nothing big to report.   Tinnitus is still a constant.   No incapacitating vertigo.  A few episodes of mild dizziness at work.  The symptoms cleared within about 90 mins and after I went and drank a bottle of water.  I wondered if that might even be related to low blood pressure.  I have been running dry consistently.  dry skin, thirsty, yellow urine.    I drink a liter after taking my morning meds and flush out but by evening, my urine output drops.    The tinnitus never goes away.
Next doctor appt in a month.

Another Episode-where did that come from

I've been good with the diet so I was surprised this morning to wake up with that old vertigo feeling.   Nausea, sweats and then some diarrhea.   I took a phenergan and meclizine and sat for an hour waiting for the symptoms to stop.    I got a flu vaccination yesterday so I wonder if that had anything to do with it.  I've been feeling a little flu-ish today.   Or could it be fatigue that brought it on.  Doing a string of 12 hr days, coming home beat and falling asleep in the chair.   I don't know.   It sure felt like the old vertigo returning.  Like a hangover; nausea & spinning.

Dr Hegarty: slight improvement

Saw the doc today. Audiogram had slight 5db improvement on left. That's good. Told him I had experienced two episodes of symptoms directly related to a meal I ate out. He wasn't pleased about the continued variability. No changes for now. Asked him about caffeine & alcohol. Alcohol has no effect. Caffeine negligible and should be minimized.

and now, Allergies

Back to work for three days and struggling to hear.    Cleaned the aids, cleaned my ears, changed programs but still having trouble.   Took me three days to figure out that I was having popping in my ears like altitude changes.  Then realized that it's allergy season. 
Took some Claritin and had improvement.     Geeez, can I get a break.

Good Burger/Bad Burger

Labor Day.  Went out to lunch with Annie and had a delish burger and fries at Stagecoach Inn.  Sitting out on the patio with the creek.  Nice.
This morning, I paid for it.  Got out of bed and the room was spinning.   As I've said before, it's like a hangover.  Room spinning, nausea and just a foul feeling.  Watered down with about 36 oz of water, took a meclizine and went to work where I downed another liter of water.  Four hours later, the flood gates opened and I pee'd sodium out all day. 
It was a good burger. 
Constant tinnitus remains. 

Hearing aid tune up

The HA specialist at Costco had been programming my device based on past audiograms from my doc.  He wanted to start from scratch with his own testing.   He did the same tests that my dr's office did plus a couple others that were specific for the device programming.  Then, using that data, the computer programmed my device automatically.   It worked well during my test run in the warehouse but performed horribly at work with the noisy environment I work in.  I think the noise suppression software was turning the volume down so much that I couldn't hear anything in the OR.  I worked three days and finally had to get in for a quick appt.
We set it all back to the previous settings but turned up the volume in both ears.  Now that I had a chance to sit in a watch what the programming was, I can say that my favorite is Noise/Traffic and the Focus 360.  I'm going to wear these for a while and really carefully consider any changes.
Back to the Doc in ten days. 
The Tinnitus is constant now.  I wonder if something is changing.  I remember the doc saying the tinnitus is a symptom of irritation.
Also need to clarify the effects of alcohol and caffeine.  read somewhere that they are bad for the ears. 

That Prime Rib was good yesterday... not so much today

Had a thick piece of prime rib at Dorn's last night.  Nice rosemary bark on it.  An au jus on the side that tasted pretty salty.  Scalloped potatoes and horseradish.     It was tasty.
this morning, felt like a bit of a hangover.   slight nausea and the telltale head spinning.   Not enough to send me to bed but it was there.   Took an extra diuretic and washed it out with lots of H2O.
The symptoms only lasted a few hours.     Freakin Sodium.   You are the enemy.

Freaking Tinnitus

No vertigo symptoms for a while. Tinnitus getting more frequent and louder. I believe that my hearing is diminishing too. I judge that at work. I have been losing comprehension of speech among the noise. My left ear is nearly dead.
I have made an appt w the hearing aid center when I get back from visiting mom (5 days). He plans on a hearing test rather than going on the ones my doc gives me. I hope that it will be a simple adjustment to the levels on the device.
Still no word from HR regarding my ADA assistance.
Have figured out the salt restriction thing. If I try to push the margin, I spend a day or two feeling ill. Haven't had the debilitating vomiting and vertigo but just feel pukey. I have managed to find some decent replacements for the normal tasty food that is killer for me. Mrs Dash is great!

Lesson learned 2.0

My sister is in town visiting her son and grandbaby.   Of course, there was celebrating.  Nick hosted a bbq at his house w brats, burgers and dogs.  
I checked out the package of brats and one contained 800 mg Na.  Wow.   So I stuck with the burger.   While Nick was cooking, I noticed him shaking a bottle of seasonings on the meat.   Never checked it out but suspect it was "seasoned salt".   Even without a salty burger, I did indulge in some chips and a bit of cheese dip.    That was Saturday.
Fishing on Monday and more chips.     Come tuesday morning and time to go to work, I woke up with nausea and a bit of vertigo.   Immediately went to the meclizine and phenergan, then sat in a chair for 45 mins.    The meds worked and I was able to go to work.   A crappy day as I was tired all day from the meds.   Three days later now and I have been flushing with lots of water and my diuretics.   No further symptoms since Tues. 

The meeting with HR and my manager regarding my ADA accomodations went unexpectedly well.   I was expecting a confrontation.  Discussed the ADA process at Memorial and what specific accomodations I might need.   In the end, I really just need an amplified phone.  That doesn't require a federal ADA case.   HR was going to look into what equipment was available that is compatible with the phone systems in the hospital. 

First dr visit since the steroid injection

My hearing has improved since my last visit both subjectively and per the hearing test. I was happy where I was with my hearing. Dr H showed me my initial audiogram from last year and my latest is still not back in the low ranges. He also did some testing w a tuning fork that showed a hypersensitive left ear-a sign that there is still some inflammation. He is having take a second dose of diamox in the afternoon. I'm pretty happy with the results so far but if doc thinks it can get even better, then I am going along.
Meeting this week w HR & my manager to discuss ADA accommodations.

A symptom free vacation

I had a lot of worries about suffering a vertigo attack while in Dominica. It never happened. I was careful with salt intake and my wife & family kept a close eye on me.
I've gotten into routine of the diuretics. This feels like a chronic disease state.

Doing well after steroid injection & HA adjustment

Not a whiff of symptoms since that day after the injection.   That gives me hope.   Saw Dr H at work in the OR and told him about the symptoms I had the day after.   He didn't seem encouraged and called it another failure of treatment.   I don't know.   I've been doing well since so I see it as positive.   The HA tech at Costco added a couple of new programs to my HA and turned up the volume on my dead left ear.    I'm hearing better at work.    If this is what a stable, chronic disease state is, then I could live with it. 

One more step along

Dr not pleased that I had two vertigo attacks since starting on the big diuretics.  My BP is down to 104/50.  Not a lot of room to go on further diuretics.  Got the steroid injection into the inner ear.  Not a severely painful procedure but left me with a headache all day.  Hopefully, this will calm any inflammation in the vestibular body and completely stop the vertigo.  Next step in the treatment, surgery to implant a shunt so to allow the endolymph to flow.    Gentamycin is not a good option.   It will kill the balance problem but also has a 30% chance of killing the hearing function in the left ear.
Asked about the sodium connection.   As my experience showed, there is a direct connection between salt intake and symptoms.    An overindulgence in pizza = a return of symptoms within 24 hrs.
Got the HA reprogrammed with latest audiograms.  5 programs now to try out in the noisy OR.   Will keep notes and see if this latest adjustment will help me keep my job.

The day after the injection, I had about 90 mins of mild to moderate vertigo.  Never got to nausea and resolved itself.   that's an improvement.

Dr tomorrow, Vertigo today

got home from work early.  planned to do some yard work but I'm having a moderate vertigo attack.   sudden onset, no nausea(yet).  Every time I try to get up and walk, my head spins and I go sideways.
Looking up more info on Meniere's online.   Maybe I need a steroid injection into the ear or some gentamycin in there to kill the ear.   The diuretics aren't holding me stable.  At this point, I would give up the hearing in my left ear to stop the vertigo and tinnitus.

Tried to tough it out but 30 mins after writing that, I had to go to bed and sleep it off.   That's 3 hours I will never get back.   All better now, though.

Hearing poor but no Vertigo

Always on guard for any sign of the spinning returning.  Nothing since my last attack that sent me home from work.   I have noticed that I am having more trouble hearing at work.  I'm now having trouble understanding male voices.  troubling.
Seeing Dr Hegarty in 4 days and have an appt to get my HA adjusted after that.   If my hearing is still deteriorating, then I may be needing a new earpiece for the HA.   and if my hearing is still deteriorating, I may need a different job.  

Another Bad Day

Was doing well and hopeful for a stable chronic disease state on the Lasix and Diamox.   My hearing was subjectively better and had no more vertigo.  Until two days ago.
At work, about 9:30, and had a sudden onset of dizziness.  Mild at first but worsened to full spinning.   Went and laid down in the locker room.  By 10, the vomiting started.  At that point, there was no going back.   Any time I tried to get up, my head spun.  I had to hold onto the walls.   I had to call Annie to come pick me up.  Went home and went to bed.   Feel really bad to skip out on work too.  
I know Dr Hegarty said to avoid the Meclizine but I let that one get out of control before I took it and couldn't get back.
This morning, I am having some mild dizziness.   Took some Meclizine as soon as I felt the symptoms.  I am visiting CA and can't be laid up for a day w a vertigo attack.
I need to ask the Dr about the sodium connection.  The day before my last bad attack, I ate some Dominos pizza.  Didn't know until later that it was packed with over 4 gms of Na.   I wonder if there is that direct connection.  And on the diet thing; I am finding that my new disease life is going to severely limit my foods.  No pickles or olives.  No fast food or mexican food.    Just about everything that I eat now has to be fresh and homemade.   Not a bad thing but adds a burden to my schedule.  It's not always convenient to cook fresh and pack a lunch for work.  No more stopping on the way home for a take out meal.    This disease really sucks.

Another appt w Dr Hegarty

Finished the steroids and had a couple of good days-adequate hearing, no vertigo and little tinnitus.   Then, I didn't.  I had a whole range of those symptoms changing over the course of a day.  Very frustrated with the whole thing. 
Dr Hegarty spun the variability with some hope.   He said the fact that it varies from good to bad means that there is some repairable function.  If it ever deteriorates and doesn't come back, that's a bad thing.   The goal is to find the treatment that stabilizes my function.   The diuretic he had me on was a just a starting point, the small guns.   Now, he is starting me on the big guns-Lasix w KCL and Diamox.   I'm going to be peeing a lot.

The instability is maddening

Back to baseline this morning with adequate function to be able to work. So, I cancelled my appt. Just like yesterday, wait a bit and things will change. Now having roaring Tinnitus in my left ear and can barely hear out of it.

Bad day

At work and having troubl functioning. Tinnitus is loud today and hearing is down. I have full ess again too. My HA is on full loudness and I'm still not able to understand what is being said in the OR today.
A few hours later: Had some mild vertigo symptoms that have passed and now my ears are clear and hearing is back to baseline. I'm very confused about this whole process.

ASL class

A year ago,when I began to notice that I was having trouble hearing, I began to look into learning ASL. I also wanted to be able to sign with Jeri. I came to find that there were no opportunities for me, even in a city that had a school for the deaf. I looked into Internet classes and books. Found that learning a language is best in immersion. Never got beyond learning the alphabet. Well, after meeting with The Indepedence Center, I now have two resources for local classes and one of them is at the School.

Accessibility to assistive devices is poor

Have been trying to reach somebody at my work to help me in getting an amplified phone in the OR. Not having a lot of success. Contacted Bill Allen twice and was only referred to Diane Garten in HR. She never answers her phone. Took the initiative and called Telecommunications myself. Talked to Dale Cordova who said that the hospital does not have amplified phones available. Kind of hitting a wall here. Frustrated and scared about losing my job.  What steps next?    Vocational Rehab at the state level?   I just don't know where to turn right now. 

Not so fast there... symptoms return

After being on the higher dose of diruetics for a while and having subjective improvement in my hearing, as well as an absence of vertigo, I had a sudden worsening in my hearing, followed by some mild vertigo.  Called the doc and got in the same day. 
A hearing test confirmed that my hearing had degraded from the last appt.
Dr Hegarty wasn't happy about it.  Called it "a failure of treatment".   He had me double the diuretic and gave me a prescription for Prednisone, if the diuretic didn't help.
The vertigo resolved but my hearing didn't improve so I started on the steroids.     Seems better after two days of the steroids but that damn Tinnitus is persisting. 
Very sad today over the death of our schnauzer last night. 

New doc and a diagnosis

What a difference a new doc makes.     A younger guy who isn't just phoning it in.  

He looked at my tests from the first doc and a new hearing test his office did and his immediate diagnosis is Menieres disease.

He spent 30 minutes with me explaining everything.  Said my hearing loss pattern is typical of Menieres.  There is no cure but it is treatable with diuretics and salt restriction and we can stop any further degradation of my hearing by treating it.   Kicked up the dose on the diuretic I'm already taking.   He said the goal is to stop the vertigo from happening rather than treating it with meclizine.  each episode of vertigo is a few more cells dying permanently.   Either it will stabilize or will continue until all the vestibular cells are all gone, and then the symptoms will cease.  right now, I am at 70%.  

I asked him about an auto-immune component to this and he denied it.  Said it was "glaucoma of the ear" where the pressure inside the hearing and balance organs is too high-for whatever reason.   The science isn't clear about what causes it. 

As you said before, at least it's not cancer.       If I can stabilize where I am now, then I can stop worrying so much about the future. 

alan

Vertigo

Had a disabling bout of Vertigo a week ago.   Came on suddenly and within an hour, I could not walk.  Vomited.  Bad motion sickness.    Sitting in the locker room at work, unable to go home and hoping it would get better, a doc walked in and found me.   He gave me a ride home.   Had another onset a few days back, also at work.  Not debilitating but bad enough.   Went straight to the drug store and got some Meclizine.  Got to carry that with me now at all times.    A few weeks back, I started having this feeling of plugged ears, like bad allergies, but my nose and sinuses were fine.   Took a decongestant with some relief.  also have to carry that with me. 
I fear that my condition is getting worse in a hurry.    I am now thinking about what happens if I cannot work as a nurse.   Scared.   I have been looking into the ADA and Vocational Rehab.    Jeri was completely deaf less than two years after her first symptoms.   I'm seven months in.  
I don't know if I should be open with this problem or hide it from my employer.   This problem has the potential to severely change my life.  I don't know what I will do if I am forced to retire now.  I cannot. 
No resources for late HOH persons in this town.  
Going to see my doc in two days.  Made the appt the day after that disabling vertigo.