Greetings from Houston, Texas

A measured improvement in my hearing... but a new symptom

Follow up visit to the ENT clinic Tuesday confirms what I have been experiencing myself and measuring non-scientifically with my headphones: An improvement in hearing for my affected ear. As compared to my last test, I am showing 20-25% improvement in the 250 - 2K frequency ranges. As compared to the first test I had when the Meniere's was originally diagnosed, I am showing slightly above those levels.

So that's good, right?

BUT, I complained about a new symptom - A constant pulsing tinnitus in my affected ear, and what feels like a dense, thick sort of sensation inside my head but localized behind the affected ear. Not the fullness in the ear, but a different sensation that feels more like my ear got hit by a baseball or a hard snowball. This comes and goes, but is always made more pronounced if I get a blast of cold air in the ear. I had first reported the pulsing tinnitus about a year and half in, but it was not constant at that time.

Now he wants to do a CT scan....

I'm trying to find out from the hospital how much something like that costs, since I am on a very high deductible HSA plan - but in general, I am thinking it is NOT necessary.

Does anyone have a similar pulsing tinnitus?

Thanks!

 

Feliz Anu Nuevo

Heading into year 5 of this increasingly maddening condition with some renewed sense of balance and perspective.

If I eat right, watch the caffeine and salt particularly, stay disciplined with the red wine, keep up the supplements, exercise and drink plenty of water - but not too much - and get the proper amount of rest....

Then I can count on about half of my days working out to be relatively symptom free, except for a constant high-pitched tinnitus and about 60% effectiveness and ability to concentrate as compared to what I was used to prior to the onset...

So that's no so bad, I guess?

We went to Costa Rica for a vacation over Christmas. We stayed at the Los Suenos Marriot Resort in a condo, and visited some of the local beaches and parks, hung around the pool, kayaked around the bay, and did a lot of nothing for a few days. Aside from driving through the mountains and up and down constantly to get to the resort, it was a relaxing trip.

Except for one side trip up the side of a cliff to visit a restaurant that is literally perched on the side of a mountain – about a mile straight up from the beach. http://www.villacaletas.com/the_hotel

The road to the place took many sharp turns and was at a 30-35 degree slope in places, with sheer drops right off the edge of the road, no protection or guard rail whatsoever… Our tourismo driver was familiar with the road, but it freaked me out. This problem in my inner ear makes this sort of thing extremely uncomfortable for me. By the time we sat down at the restaurant, I was in a state of panic and I felt the vertigo starting to kick in. I had to leave immediately or fall over and wait for it to hit – so I left the family sitting there and walked down the cliffside road, clinging to the branches along the mountainside for stability and trying not to look down or over the edge. I made it about 1.5 km down before the tourismo bus came along with the rest of the crew and picked me up. I was sweating profusely and my heart was pounding like mad and I was wobbling like a drunken sailor muttering to myself the whole way ... but the rotational vertigo never hit me with full force. Only the vertigo that causes my sense of balance to go missing, my stomach to churn, and my head to throb and feel like it’s full of cement... Once we got back down closer to sea level I was ok again after about an hour.

But I learned not to go up steep hills…!! Haha.

The rest of the trip worked out great and we’re all home safe and sound, ready for the New Year.

Happy New Year to all !!!

JMC

 

I'd say that's the secret to to long lasting health for just about anyone

Congratulations! I wish you continued success with your treatment plan. Costa Rica is a lovely place. Stay well y un feliz año nuevo a usted también!

 

;D

 

Another year gone by... It surely seems to drag on at times !!!

Today for the first time in as long as I can remember, I actually heard bass frequencies in my affected ear through my earbuds while I was on the exercise bike. I took the earbuds out from each side one-by-one, just to make sure it was really there - and sure enough it was.

Now, I am not declaring victory by any means - but this is clearly a marked improvement year-over-year.

Happy Christmas to all!!!

 

Glad to hear you are doing well! You may want to check out an app in Apple's app store called uHear and do your own hearing tests.

 

Another year, going on 6 years now? since the ENT told me a majority of cases that present like mine would dissipate in 2 years or so.

I was doing so well in June that I decided to cut the direnium in half. This seemed to be working, so ...

I gave up the JOH regimen in early November. I did not taper off, I just stopped taking the supplements. Bad idea, as it turns out. Along about the same time, although I did not recognize the connection until last week, I found a great new source of fresh roasted Costa Rican coffee, and also traveled made 2 separate times back to back for business. All very stressful, and probably doubled up my caffeine intake at the same time.

Net result - smack down came the day after Thanksgiving while on my daily walk. Tinnitus had been getting progressively worse since early October, still I refused to see the connection. I spent last week in a stupor, not able to hold my head up for longer than 30 minutes at a time, and weathering frequent bouts of vertigo and nauseau. Not as bad as the initial attacks, but still...

Bottom line - I am back on the JOH supplements now, and almost feeling about half ok. I missed my gig Saturday night, though. Could not possibly drive safely to and from...

Back to square one!

Best wishes to all for a happy and safe holiday !!!

JMC

 

In Houston, you should be close to a Neuro/ent doctor who has experience in treating Meniere's. So many good suggestions here on this forum--and much encouragement. I would encourage you to find the above mentioned doctor--because there are procedures that can help get rid of the 'vertigo', like the Endolymphatic shunt (which I have had) and no more vertigo. I do continue to deal with dizziness and nausea that I'm sure is partly due to the Meniere's but also due to other issues. Best of luck in dealing with this.

 

Tlhinking we can "thumb our nose" and just be "normal" is human. "Gotta test your limits"
So you know why you are "flat on your back" but we all hold our hand out to help you back up. The pieces of each of our life's puzzle may not be what we want but hang onto the pieces that fit together. They are so precious, but you know that now right!

 

Re: Greetings from Houston, Texas (Merry Christmas!)

Well....

I am back on the supplements fully, and I was feeling better all around - except for another notch down in hearing, and a little wobbly still on my feet.

I felt well enough to attend 2 holiday parties last week, and even better, I felt well enough to work my final steel guitar gig of the year last Saturday night. It was a club gig in Texas City, well attended, and we had a good night. Even though I could not hear at all from my right ear, and I was drenched with sweat and exhausted by the end of the night.

but then... I did not sleep so well Sunday, and I threw all dietary caution to the wind to cook Sunday night dinner for my lovely wife and 2 daughters, just home for the holidays. Filet Oscar, twice baked potatoes, asparagus, fresh greens for a salad from the garden, jalapeno sausages, and red wine. It was exceptional..!

Net/Net - I suffered another self-induced smack down yesterday... I should probably have learned by now where to draw the lines around my diet - but no!

It started with a light spinning sensation in the afternoon Monday, fleeting but a clear warning shot. I skipped a 2nd family dinner that night and slept it off - or so I thought.

woke up yesterday with a screaming tinnitus, a fully blocked ear, and what felt like a head full of cement. I could do nothing but lay on the couch and wait for the next phase...

Along about 2 o'clock, a full-on vertigo attack knocked me out for about 4 hours. Although intense and disconcerting, it was not as bad as my first 2 episodes way back at the beginning of all this madness - so, I'm thankful for that.

Ginger Ale and tea only today - so far I am upright and ambulatory...

Merry Christmas to all !! Hope your holiday is peaceful and serene.

Regards,
JMC