Virus? Meneires? Something Else

Woke up the next day, Friday, feeling sub-clinical flu-ish.  achey, sore throat, no energy.   Went to work and my throat was hoarse, losing my voice.   Home early and napped.

Valentines Day, we slept in.  Felt rested and enjoyed a quiet morning at home.   We went out for a few errands and that little bit of activity just wiped me out.    No Vertigo just weak.  
Could be over-diuresing.  I lost 11 lbs of weight over a week.  Added in the HCTZ and made sure to take the afternoon doses.   Doubled up on my KCL when I noticed I was having fasiculations in my calf.

Here it is Monday.  Still extremely weak with a head fog.  No vertigo or nausea.

Beginning to believe the Gluten sensitivity science.  Found some articles from a researcher at House Ear Institute that supported an auto-immune cause.      Calling Dr Brown to get my annual labs and discuss Functional Medicine.

Really tired of this vertigo

Went and saw Dr David Levin on Monday.  A young doc with the latest info.  Introduced me to a drug called betahistine.  It acts to dilate the vasculature around the middle ear and increase flow of the endolymph.  He gave me information but didn't give me a script.   Put me on prednisone 3x a day for a week.      My Diamox prescription went up to $125 a month.  He switched me to HCTZ but said that Diamox is the standard treatment for Meniere's.   I looked into Canadian pharmacies on-line and found that I could get 100 for $55.  

Had one good day Tuesday without symptoms.
Yesterday was Wednesday and I had the onset of vertigo around 1pm.  Sweats and gait disturbance.
The symptoms intensified and I took a meclizine around 2:30.   That gave me some relief for a while but driving home, the vertigo returned.  I had to stop and rest for a bit and then proceeded.  Just about a mile from home, I had a sudden a sudden nausea attack and had to pull over to barf on the side of the road.  Went to bed for two hours then felt better.

Today is Thursday, 2/12/15.   Working at my desk and had another sudden onset of symptoms.  Vertigo & sweats. No nausea yet.  

I'm frustrated with this.   It is effecting the quality of my life and ability to work.   I need relief.

The week wasn't over.

Last entry, I thought my symptoms had passed.  On Friday, I had another severe attack at work on Friday.  Just sitting at my desk, turned my head wrong and set it off.   I tried to sit with my eyes closed but it didn't help.  The nausea kept building.    I had to call Annie to pick me up.  It was bad enough that I couldn't drive.  I came home and went to sleep until the next day.   Wonder if I picked up some virus that was causing these attacks.  

Vertigo & vomiting

I don't know exactly what was different.   We ate Mexican on a Saturday.  The carnitas seemed salty. I worked out in the yard on Sunday and didn't drink enough water.  That's all I can come up with.
At work on Monday, I was out for an afternoon walk and had a sudden onset of vertigo.  The kind where the landscape moves left and right.  I was near my car anyway and sat in it for a bit with my eyes closed.  It passed temporarily but hit me later in the day.  I drove home with it, not turning my head, just focusing on the horizon.  Laid down on the couch and slept for hours, then went to bed.
On Tuesday morning, I woke up with it.  That's a new one.  Usually, sleep will reset the symptoms.
I tried to muscle through it.  I ate some breakfast but the room kept moving left to right, back and forth.  I decided to call in sick and went to lay down.  Just a few minutes of lying there and I got a sudden nausea attack and lost my breakfast.  
Haven't had an attack of this severity since living in Colorado.  I slept until 1pm and felt better but washed out.  No vertigo or nausea but tired, weak and hungover.
Maybe it's time to go back to the ENT.

Persistent Vertigo

After a trip to San Diego 9/6/14 and a couple of restaurant breakfasts, I had the onset of vertigo on Monday.  Out of the blue.  I was at work, sitting at my desk when the room started to spin.  It passes if I rest with my eyes closed.    I drove home to visit Mom mid-day and on the drive out, the spinning returned.  I had to have Holly drive me back to work.
The symptoms have returned without warning on & off all week.  I turn my head too rapidly and it spins.  Just walking and I get a spin.  Walking to work this morning and got some symptoms.  Not enough to disable.  Hasn't been that bad. Just bad enough that I notice and have to take precaution, grab a wall or stop walking.
Sitting at my desk today and spun my head to look at something.  Now the symptoms are moderate. No nausea but definite dizziness & spinning.     I can't take a nap under my desk like I did before with my new office mate.   Seems like I am becoming unstable.  Maybe its time to kill the ear.

Double Carl

Treated myself to a fast food burger on a Friday.  Sunday morning, woke up with vertigo.   Not out of control, vomiting vertigo, just a constant feeling of spinning and dizziness.   Tried to get up and function but couldn't shake it.  Had to go back to bed.  Slept about four hours and still had it when I woke up.
Figures it was a day when Mom was out of control.   Annie had to go over there and take her to the ER for a possible UTI.  I had to crash on the couch.  

Caught a Cold-Hearing Gone

Traveled on a plane for a diving trip.  Lady a few rows up kept sneezing.   I had a premonition that she was going to get everyone around her sick.  Came down with the cold at the end of the trip and had to cancel the last day of diving.  My hearing was immediately effected and I attributed it to the congestion and swelling.   Now, I am almost two weeks out and my hearing has not improved.  Taking Sudafed daily with little, and only temporary, improvement.   Starting to worry that this might not get better.  Having trouble understanding Annie in the same room.  Going to call my ENT for an appt on Monday.  Give it one more week to improve.
Just reviewed an old post, "and now allergies".   I talked about having the same fullness in both my ears like a normal person gets with altitude changes.  Used Claritin with some relief then.   Maybe I should switch from Sudafed to an allergy med?

Vertigo kept me in bed

All the holiday eating caught up with me this morning.   Got to admit, I felt symptoms coming on for a while now.  An occasional moment of spinning.  Tinnitus getting louder.  Hearing not as good for several days.    Then this morning, woke up to go pee and the room was oscillating back and forth. The ceiling light was moving right and left.   I tried to get up and had to hold onto the walls.   The waves of nausea caused me to sit on the edge of the tub waiting to puke.  It never came.    Got back to bed and closed my eyes.  Relief with my eyes closed and motionless.   Fell back to sleep until noon.
Drank four liters in the afternoon, trying to flush out.   Must have been really dehydrated because my urine production hasn't met that.    Remember I didn't drink my usual amounts while at work recently.  Have been out of my routine since going on to San Diego.  
Got to get back into my hydrating starting at work tomorrow.

deterioration

I suppose the natural course of the disease is going to have it's way.    My tinnitus has been bad for a while. Last week, I started having some mild vertigo symptoms.  I got in to see Dr Stewart locally for a steroid injection but did not have the improvement in symptoms that I had with previous injections.   I can tell that my hearing is worse lately.  I'm playing with the adjustments on my HA more.  Might be time to go in to have them adjusted again.
Still have some very mild vertigo symptoms.  If I turn my head, sometimes it keeps turning for a second.  Never had it so bad that I had nausea or was incapacitated.  What is really annoying is the ringing.  the constant ringing.  I think if that went away, I would hear better.  It really is the volume of ringing that keeps me from hearing things under that volume.
Hearing test this week.  It's been almost a year since the last one.   Fearful of what it will show.

Stable?

Had the audi and dr visit today.   The diagram is pretty much the same as a year ago-within 5db.  Discussed with Dr Stewart that the vertigo symptoms I was having led me to call for an injection and those are better.  The tinnitus is constant and fluctuates in volume.  The ringing is the worst hindrance to hearing.  When it is loud, I have trouble hearing speech under it.  
So, things seem to be stable objectively.  Dr did restate that the long term course of this disease is continued hearing loss and they have no way to stop that.   Oh well.   At least, it's not cancer.  

Temporary results

The success I had with the steroid injection has nearly completely worn off.  Tinnitus is back & constant.  Worse is that the hearing in my left ear is diminished again.  Not quite as bad as before but certainly down.   The hearing aids work to compensate.  Don't know if I can have another injection or if its even worth it for the temporary improvement.

Dr Gopen UCLA & Success w Steroids

Getting to the UCLA medical campus is an adventure all by itself.  Crowded freeways and streets.  Garmin got us to the building.
Dr Gopen met with us for 20 mins, I guess.  I didn't keep track but I talked a long time of where I have been since first developing tinnitus,  Dr Hegarty and the ENT I tried in SLO.  He discussed Meniere's disease at length, giving more detail than Dr Hegarty did.  Subgroups, new imaging revealing new anatomy that is insignificant in actual treatment of people and he discussed my audiogram in detail that Dr H never did.   Overall, he didn't have anything new to offer me and besides much more detail, he didn't tell me anything I didn't know.  Meniere's is a mystery, treatment is a guess and when I am dead, my temporal bone can be donated for research.
He offered the steroid injection and I said yes.  It was what I came all that way for.   That sucker hurt more than when Dr H did it.  I believe he put an extra volume in.  I never tasted it when Dr H did it, either.  I laid there with the ear up for thirty minutes and then walked out.  Just like that.  He had already moved onto his next patient.   He gave me his card with an email and said that if I wanted another injection, to email and he would squeeze me into his clinic.
By that evening, I had a large improvement in my hearing and turned off my aid.  I didn't notice until after that the tinnitus was gone.    So, apparently, I am in that subgroup he talked about that responds to steroids.   Lucky me!
Being in San Diego and visiting, we ate out a lot.  I know I had some meals that went way over my salt allowance.  I took double diuretics and flushed with a gallon of bottled water.  The tinnitus is back at a low volume 36 hrs after the injection but I think the hearing is still good.  No hearing aids all day.  I turned them on for a bit today and it was just too loud.  
I'm going to contact the SLO ENT one more time and see if he or one the partners will reconsider doing the injection here in SLO and save me the drive to LA.

UCLA is a long way away

My insurance plan authorized me to see a Neurotologist at UCLA.  I looked up Dr Gopen, both his website at UCLA and on Healthgrades.  He gets high marks.  A young guy who somewhat resembles Dr Hegarty.  This will probably be ok but it is nearly 4 hrs away.  I have a 9am appt so I will either have to get up really early or drive down the night before. My hearing has been down.  I  had a little improvement with the steroid blast/taper but the last couple of days have been poor.   I went to Costco to get my HA adjusted.  Added a program with just a little more volume.  I'm having trouble hearing a few people at work.    This is frustrating.

Dr Sajjjadi-Neurotologist

From: Hamed Sajjadi [mailto:drsajjadi@earandsinus.com]
Sent: Saturday, August 04, 2012 5:50 PM
To: Muratet, Alan - AGCH

Cc: Leslie Gutierrez; Vanessa Castro; Azar Sajjadi; Ali Sajjadi
Subject: Re: Urgent

Dear Alan,

I'm a Board Certified Neurotologist with special interest in Meniere's Disease and over 20 years of experience. I do give Intratympanic high dose steroid perfusion for Meniere's Disease. Our office is located in San Jose, near the city of Los Gatos. You could call our office and make an urgent appointment to see me this week.

However, as you may have been told in the past, there is no guarantee that steroid perfusion will restore hearing in Meniere's patients. I offer this method frequently to our patients, but data on it's efficacy is not conclusive and experts differ on it's value. Even though it seemed to have helped you in the past, it may not work for you this time around.

Meniere's disease is a very unpredictable disease, with natural fluctuations in hearing. Often times, one treatment or another may "coincide" with a hearing gain or drop, even though it may not have been a cause and effect relationship.

Having said that, you could receive ITT Dexamethasone at my office this week if needed. You would have to do the following:
1. Call 408-358-8507, after 9 am on Monday and ask for an urgent appointment with Dr. Sajjadi
2. Bring all your old records dealing with Meniere's Disease, i.e., any Hearing tests, CT or MRI's, ENT/Otologist office notes, etc.
3. Purchase high concentration Dexamethasone at our compound pharmacy, Silicon Valley Pharmacy on Winchester Ave, in Los Gatos. The pharmacy would charge you about $200 for a multidose vial, which would be good for at least 6 injections.
4. If you have no insurance, then be prepared to pay cash for the office visit and any perfusion sessions.Please discuss the cash price with my office when you call on Monday. You would need to ask the cost of a new patient Consultation, Audiogram and Middle ear perfusion. The first visit would take you 2.5 hours. Follow up visits are shorter and less expensive. Each follow up perfusion session lasts 45" or more.

I hope this information helps. Please let us know what we can do to help you.

Best wishes,

Hamed Sajjadi, MD, FACS
Clinical Associate Professor,
Otology / Neurotology - Skull Base Surgery
Stanford University School of Medicine
President, San Jose Ear & Sinus Medical Center
408-358-8507
Fax: 408-358-8506
hsajjadi@ohns.stanford.edu
www.earandsinus.com

On Fri, Aug 3, 2012 at 2:46 PM, Muratet, Alan - AGCH <Alan.Muratet@dignityhealth.org> wrote:

I am recently relocated to the San Luis Obispo area.  I have had intratymp injections of dexamethasone from my former Neurotologist and I had improvement in my hearing.  I saw a local ENT on my insurance this week and my audiogram is way down from the last time.  The physician I saw does not do IT injections and I have not been able to find one in the area or on my health plan that does. 

I was receiving great care and preserved my hearing up to this point.  I am only 52 and still need to be able to hear.   I called my former physician in Colorado and he agreed to order a Prednisone blast/taper over the phone.    He has had me on Diamox and Lasix for 6 months. 

Can you provide IT steroids and care for my Menieres?   I am willing to be a cash pt initially. 

Please get back to me as soon as possible.  I fear that if my Menieres is left untreated, I will certainly go deaf in that ear. 

Alan Muratet

RN, Clinical Documentation Specialist

Arroyo Grande Community Hospital

Dr Stewart

    Went to seean ENT on my health plan.  I had my doubts going in.  Dr Stewart said plainly on his website that his interest was neck surgery.  I called every ENT doc on the central coast, including some that were not on my health plan, to verify if they offered the services I was receiving from Dr Hegarty.  None of them did.   But, I gave my insurance plan a shot.

Dr Stewart didn't even look at my audio until I brought it up near the end of the visit.  He had his agenda and it didn't include treating me with an  aggressive bent towards preserving what function I had.  In fact, he suggested we go ahead and do the Gent injection to kill the ear.  He focused on my least problematic symptom, the vertigo.  He said that IT steroid injections are not proven to work (inconclusive results
on that one.  It did work for me so that is 100% success rate).

New audiologist

New doc had me test with office audi.  Routine.   Not impressed by her.   My take on the test is that I am bad off.  I had a lot of quiet on the left side.   MD tomorrow.

Steroid blast

It's been a week on the prednisone and I think there is some improvement. However slight and subjective. Tinnitus is slightly better (something I noticed is a fluctuation in the frequency of the ring-that's new). Vertigo has been controlled. Audio appt tomorrow and see the new doc in two days. I went on the new doc website, there was a contact us button and sent an email to my new Dr explaining my acute change. He wrote back the same day and got my initial appt moved up three weeks. Appreciate that.

Dr Hegarty

Desperate and scared that I am suffering more permanent damage to my hearing, I took a chance and called my old doc in CO. Surprisingly, he called me back personally. He was concerned that I might need a steroid injection in the ear but he agreed to fax an rx for prednisone. My own, unmeasured assessment of the hearing in my left ear is that it is at its worst. Constant, loud tinnitus and when I plug my right ear, I cannot hear any high freq. I'm really worried.

Instability

I've been following my diet well and drinking plenty of water and yet, I'm still having problems. I have had some brief episodes of motion sensitivity the last few weeks; mostly just a fleeting feeling of dizziness when I would change position. I always recovered in an instant. My tinnitus has been worse recently too; loud and high pitched. Today, I had a sudden onset of dizziness after turning my head. It lasted more than an instant and in fact, progressed to nausea. I sat at my desk for a few minutes but it wasn't passing so I took some meclizine. The med knocked me out for 30 minutes. My first ENT appt isn't for another two weeks. I hope I'm not losing ground w my hearing and vertigo.

Another Vertigo

I had some bad diet choices at work last week.  Pizza & baked treats.  It was a party at work and I skipped my home made salad for the goodies.  The next day, there was an open forum and the hospital provided more pizza.  By Thursday, I was spinning.  Standing next to someones desk and all of a sudden, the room shifted left, then right.  I had some prodromal symptoms of low energy and no appetite.  Thought I was getting a bug.  Didn't put those symptoms together until I had the vertigo.  
I had to sit down and conclude the meeting in a chair.   Limped back to my desk and popped the Meclizine. I was tired the rest of the day.    Flushing out with water and diuretics.
I was hoping to back off on the diuretics some but it doesn't seem like I will be able to.  My insurance is active now and I have an appt with my PCP next week, then I will get a referral to ENT.