Dexamethasone shot today...

So, I went through with it after all. I was literally shaking head to toe as he lowered the chair and told me to settle down, it will go much better...

I am happy to say it was much less traumatic than I had imagined it would be - until I saw the bill. Just a slight burn when the needle went in, and then a feeling of icy cold as the dex entered the inner ear. Dr. says it may be 3 or more days before I notice any difference.

After the sticker shock wore off, I realized - I don't want just anybody poking needles through my eardrums. I want someone with experience and expert knowledge. Someone who has been carefully trained, who has a staff on hand in case something goes off the rails, and a nice clean facility with lots of help around to smooth out all the logistics and paperwork, etc. So I reconciled the price to the basic principles of supply and demand. Anyways... it hurt my wallet much more than it hurt my ear (so far....)

But, here's the rest of the story since I last posted....

Last Wednesday morning I woke up, well-rested for a change, and as I prepared for my daily tasks I noticed the distortion was gone, the tinnitus was lower, and the voices on the TV news were actually clear and full sounding. So... I go out to my truck and plug in my favorite CD - and it sounds just as clear as it did before this latest incident. Good separation of tones and instruments, bass notes solid and in tune, no booming rumble from the speakers, and even the piano track came through clearly. This reprieve lasted almost the full day, but then as I went to sleep that night the distortion was back and the voices on the TV were midrangey and harsh again.

Then I am dreading the Saturday night gig, worrying about the dex shot today, and not getting proper rest. So, I set up a prototype headphone monitor system. I run the front of house mix through a cable to a 4 channel mixer, and then I patch in a xlr cable from the back of my amp. Now I have a mix coming through a small mixer to a head phone set, just like I am playing in the studio - except - instead of in-ear or over ear headphones/ear buds, I am using a bone conduction headphone set from AfterShokz. $50, and they worked great! I had to tweak the volume and the mix, but I could actually hear the notes I was playing and was able to distinguish the pitch. A lot of wires to contend with, but a vast improvement over the last gig. Band leader told me I did a great job...

Driving to the gig, nothing sounds even a little bit good on the CD player. At sound check, I hear muddy sounds and distortion on all frequencies - no clear bass, steel guitar sounding harsh and abrasive, Stratocaster sounding completely out of tune no matter what the strobe tuner says... I ask the bass player what she hears, she says it sounds normal to her - actually pretty good, she says. I plug in my prototype headset, and it all works...

That was Saturday night.

Sunday when I wake up, the distortion is gone again and the tinnutis is much lower. I work through the morning able to hear and understand most of what is going on. Early afternoon, I drive around the block to check my hearing in the truck, and it is again much clearer and cleaner - like it was Wednesday.

Then last night I start worrying about the shot again today, even consider cancelling. I don't sleep good, and when I wake up I am right back to where I was 2 weeks ago.

I describe all this to the doctor and to the audiologists. They want to know, what did I do differently prior to those two days of apparent reprieve? I slept better is all I can think of...

Right now, at 7:25 PM CST, my left is feeling full - Dr. said to expect that. I am hopeful, that is the best result so far....

We have another job coming up this Saturday, indoors this time, and early too. I'm cautiously optimistic, and I've got the whole week to fiddle with my bone conduction setup...

If you've made it this far... I'm surprised...!

Will post any updates when they occur...

Fight on...

JMC

 

Thanks - I am going to let this one sink in for a week, then decide if I want another one. ENT is saying I can have 3 or 4 more in short succession, if I can tolerate them.

But to your point - I've got 8+ years of daily metrics with times and specific observations - what did I eat, drink, do, and where was I? Together wtih all MM symptoms metered from 1-10 in severity, etc. etc. Only a few gaps in the 8 year log.

In general, there is no discernable pattern to what precipitates a good day versus a bad day. Somedays I have gone way off the rails diet and otherwise - no problem. Other days I am well rested, gone fishing and relaxed for a day or two, and boom MM symptoms are up.

Only thing I've learned, and I learned it on my own with help and gentle prodding from my wife -

drink enough water - not too much
get good rest - sleep soundly and without interruption for at least 6 hours a night, 8 if I can
do NOT get dehydrated
stick with the JOH
and lastly, do stuff I like to do and let the other stuff slide...

Try explaining this to the ENTs and the Audiologists...!

 

Thanks...

I am hoping indeed that the odds are in my favor... Without being able to hear at least semi-clearly, I am not sure I will want to get out of bed anymore.

So far today things are looking pretty good, all in all. The injected ear does not hurt, and I can hear pretty well considering the last month's worth of trauma to that one.

My original bad ear seems worse now - marginally. But it comes and goes, sometimes ranging up to 25% in either direction (non-scientific measurement only...)

I'm giving this Dex shot one week to settle in, and will post results next week after my weekend gig.

May the force be with you all..!

JMC

 

Re: Dexamethasone shot today... Update from tonight's gig

Woke up 3 times over the course of the night feeling like I might be having a vertigo episode... Each time, the feeling subsided within a few minutes and I was able to get back to sleep.

Then I woke up this morning able to hear bass notes clearly for the first time in weeks... Previously, bass was distorted and muddy making it extremely difficult to play in tune.

Tonight I could hear well enough to play, and my steel guitar sounded right - not all mid rangy and harsh. It was a good night for me, all things considered.

I've learned not to get my hopes up - I know there is no cure, especially after 11 years. I know the symptoms may return tomorrow...

But I'll take it for now...!

We're off for two weeks, during which time I will visit the ENT once again and find out what comes next...

Thanks all for your support and good wishes..!

 

Guys:

Quick update - hearing test today shows that lower range in my left ear is close to being normal again. Highs and mids are still off, but not as badly as it was on my first 2 visits to this ENT.

So, I believe the Dex shot made a big difference.

I also believe the JOH regimen at 3x normal l-lysine and 2x normal everything else made an even bigger difference.

Only the hearing test and what I hear to verify any of this, but... it is genuinely a big deal for me..!!!

JMC

 

Hi Serknor:

I have the sportz titanium model AS401XB, yes. I found that when my ears were NOT working so well, these helped me tremendously to ascertain the pitch of the bass guitar in the mix especially. This is what goes missing first whenever I go off the rails (which hasn't happened since December, thank God...)

One problem I had was distortion whenever I tried to turn them up too high... Our stage volume is normally lower than most gigs I have played on previously, so that also helps.

Since fall of 2018, I have experienced truly amazing results with the B5+B6 vitamin supplements mentioned on this forum. Tinnitus way down, and pitch/tonal distortions virtually gone 90% of the time. On bad days, nothing helps but rest and plenty of cool water...

Good luck! I am amazed that I can even play anymore after 12+ years of this madness... but it is definitely the only thing that keeps me from jumping off the edge...

JMC