Greetings from Houston, Texas

Greetings fellow musician. I've just now read through your post. A while back I started this thread with resource information for people wanting/needing to avoid wheat and/or gluten. It may be helpful to you. http://www.menieres.org/forum/index.php/topic,22760.0.html
Best of wishes in your quest for better health.

 

Thanks, guys.

I've been going to the ENT/OTO Clinic at Baylor for a couple of years now, as it turns out. They are absolutely certain I do not have a virus in my ear and will not prescribe an anti-viral. I was almost convinced until this latest round, which appears to have been made worse by the onset of colder weather. Not sure if that is a clue or not, but if my ear gets a blast of cold air - then it starts to act up.

The gluten-free diet seems to be working best for me. If I have a minor episode, as was the case last week, I can trace it back to something I've eaten that is outside my normally restricted range of low salt, no wheat, no sweeteners, etc. For example, if I eat too much salt it will normally affect me within 12-24 hours. Any sort of wheat will do the same.

Appreciate the helpful suggestions and links - thanks!

I'll be posting here if anything changes as a result...

 

Welcome aboard!

Besides for checking out the link in my sig, below, you might be interested to learn that B12 deficiency symptoms include:
tinnitus
dizziness
hearing loss
headache
tingling of extremities (don't know if you have those last 2 symptoms).

Sound familiar?

IN ADDITION, there was a study of people with noise-induced hearing loss, where 84% were B12 deficient.

In other words, there is a B12 deficiency factor in noise-induced hearing loss.

If you play steel guitar, you are almost certainly subject to decibel levels that are known to cause hearing loss and other neuro-oto issues such as tinnitus.

If you don't already have them, there are special earplugs designed for musicians that are custom-molded to your ear. They are expensive, but worth every penny. They come with several inserts, so that you can control exactly how many decibels to block--6, 15, or 25, and you can still hear conversation and hear if you are in tune.

If you have an iPhone, you might try one of the decibel monitor apps, and set it up at your next gig or jam session, to see just how many decibels you are being subjected to.

To give you an idea, an un-miked symphony orchestra can reach 80-90 decibels. They usually don't--but for modern classical music, calling for extra brass, percussion, piccolos, etc, they do. Anything over 85 is considered to be able to cause permanent hearing loss.

About gluten intolerance--by any chance, do you have acid reflux problems? That is a common symptom of gluten intolerance/celiac. And if you are on an acid blocker, such as Prilosec, that is actually the #1 cause of (drum roll, please) B12 deficiency, because the acid blocker blocks the acid needed to properly process the B12 in your diet or in your vitamin.

Another possible piece to your puzzle just might be a systemic candida infection. There are a quite a few people here who have found that to be the case--and if you go on the celiac forums, it seems to be seen quite often WITH celiac. Perhaps it is a result of the typical high-carb, high sugar diet, or perhaps it is a result of the last few decades' trend of antibiotics being prescribed so frequently.

At any rate, you might want to greatly decrease sugar if you haven't already done so, just to see if it helps...

 

Imasteeler, since we last talked I'm almost 100% cured after diet modification and taking extended courses of anti-fungal medications. Let me know if you want to try that approach.

good luck
Papa Joe

 

What kind of anti-fungals are you taking, Papa Joe?

I have a weird intermittant fungus amungus on my toes on both feet that baffles rheumatologists and dermatologists alike. I've used all kinds of otc, homeopathic and prescrition creams, to no avail. When I take prednisone for an attack, it goes away right away. Otherwise, it comes and goes.

Although Famvir and Plaquenil are by far the most effective treatment I've had, I'm open to other things as well.

 

Currently I'm taking nystatin and fluconazole, but the whole process is best described as a "journey". Acyclovir helped me some, but not as much as the anti-fungals. My doctors (my OTO, and my ENT/Allergy doc) and I have considered the idea that it may be a combination of fungus and virus. Systemic yeast suppresses the immune system. Viruses can then become active (and there are suspicions that many auto-immune problems might be yeast driven).

Do you have dietary triggers? The first step in treating yeast is starting a low-carb candida diet and taking probiotics and eating probiotic foods. Of course, even if yeast isn't your problem, a low carb diet and probiotics are generally healthy and help improve your overall health.

 

They were absolutely certain that anti-virals would do me no good at Baylor as well. Glad I finally sought other opinions.

 

Re: Greetings from Houston, Texas (Valtrex update)

My full post got erased by a time-out....

UPDATE: I am 30-days into a 90-day course of Valtrex now - after some recurrence of symptoms earlier in the year and another week of steroids. The episodes were not as severe, but my hearing is down significantly, and my balance and concentration are affected more now than ever before. I do not expect to be cured by the Valtrex, but if it makes a difference I would indeed be happy.

I've gotten to where I don't expect to feel good any more - and this is the most troubling development for me. If I am feeling good when I wake up, I take this as a good sign that I should enjoy the day and the good feelings while they last.

Sometime in June or July, after the 90-days has passed, I will be heading out to L.A. to see Dr. Derebery for a 3rd opinion.

Will post any significant changes here....

 

Have been on the 1G Valacyclovir daily for 3 months.... So far, no appreciable difference in daily symptoms, i.e., tinnitus still raging, ear pressure still moderate, and hearing still off. Wondering if 3 months is enough to make a difference, or do I need to give it a little more time?

I did have one sort of mini-episode about 5 weeks ago, which lasted for approximately 2 hours at work. Staggered into the "quiet room" and called my buddy for help, he brought me a big trash can and some cold water to put on my forehead. The vertigo dissipated slowly, and was much less severe than what I've been used to during a full-on attack.

Since then, just maintaining and waiting to feel a difference from the Valacyclovir.

Been able to keep up with most of my other activities, so I am fortunate in that regard.

Happy 4th of July to all!!!

 

I had the shunt surgery in December and haven't had a vertigo attack since. However, I still experience the hearing loss, fullness, tinnitus on and off. Many of this board are not fans of surgery (who is?!), but this particular surgery has helped many, many people.

 

I'd strongly recommend that you hike the vitamin D3 to 5000 IU/day. 2000 IU simplly can't get your serum vitamin D above 50 ng/ml, where it can really do some good.

Read all about this at: www.vitamindcouncil.org.

--John of Ohio

 

Imasteeler,

I'm from Houston also. Glad to meet someone on here from H-town. recently diagnosed, so alot of this is new to me. Have you found a good doctor in Houston?

Thanks

Keith

 

Hey Keith:

Sent you a message with some details... Dr. Vrabec at Baylor is my doctor for the Meniere's... I've just finished a 90-day course of Valtrex, with mixed results. It is frightful ordeal at the outset, let me know if I could help you in any way.

Good luck !!...

Hi John: Have boosted the D to 5000/day, thanks for this info..!

JMC

 

Re: Greetings from Houston, Texas Anyone had a steroid shot to the ear??

Hi All:

I went for a follow-up visit with my ENT this week... A full hearing test reveals a further loss in the 2K range, but otherwise approximately the same as my first hearing test (at this clinic) over 2 years ago.

We reached a firm conclusion that the 90-days treatment of Valtrex did not make any appreciable difference to my version of the Meniere's - because I had the minor attack after a few weeks of it, and then another more severe medium-level attack 2 days after going off of it. And the Tinnitus, fullness, and minor dizziness has been with me all along. We examined my diet, sleeping habits, exercise, stress levels, and other day-to-day habits - but we could not identify anything specific to pin it on, EXCEPT for much higher salt than average meal immediately preceding the minor attack, and several days dehydration/exhaustion preceding the more severe one.

The next step (it is up to me to decide when to take it) will be a steroid shot through the eardrum and directly into the middle-ear. The idea here is to fill up the middle ear with the medicine, and that some of it should be absorbed through the membranes through to the inner ear, thereby going directly to the source of the problem and hopefully, providing some relief.

In the meantime, I am more tired and out of focus now than ever before - despite taking up a much more disciplined approach to fitness and diet in the last few months. We walk 2.4 miles every morning - with very few exceptions. If I miss the morning walk, I take a 30 minute treadmill walk in the evening. I am also doing a medium weight training 3x weekly. Maybe all this fitness hasn't taken root yet, I only boosted to this level in mid-May.

All that said, today I feel pretty good - all things considered. So there's at least some hope for tomorrow!!! But I am wondering if anyone has had the steroid shot through the eardrum, and if so, what was your result?

Best wishes to all, and thanks for your continued help!

JMC

 

Hi Neighbor. Nawlins here. Sorry you're still having issues. I have recently been diagnosed myself, but had had the symptoms for a very long time.

 

Hey, Imasteeler,
How's Houston? I lived there for a total of 7 yrs,at 2 different times, and met my husband there. Ironically, one of my twins is there now, Chem Eng for Exxon Mobile, and my sister-in-law and mother-in-law are there also.
Yes, I've had the dex perfusions several times over the years, and they gave me relief for 18 months to 2 1/2 yrs at a time, and I mean almost total relief from symptoms,just the tinnitus remaining, usually mild. As I've told others, you can get a lot of good living in that length of time! For some reason, this last one in May didn't 'take' as well, and it's the first time my symptoms continued.
It is not a particularly painful procedure (the deadening of the eardrum with a cotton swab before inserting the needle is the most uncomfortable to me) FYI, try not to look at the needle, it'll freak you out because it is being inserted so deep..looking at the outside of your face,it is going in approx. as far as the middle of your cheekbones to reach where you need it to. I don't know about your first procedure but my OTO always does the original in out-patient surgery, because some people have some differences in anatomy and he wants to be in that setting, just in case. In that scenario,he actually "lifts" the ear drum and looks inside,places a tube that disintegrates or falls out on its own, and replaces the ear drumafter he has the "lay of the land" so to speak, it's done in comfy recliner-type chair that will let down immediately afterwards, you then lie on the opposite side for a few hours while it gets in really good.
When I first started these almost 10 yrs ago, the norm was a series of 3 in a 3 day period. A few years back I went expecting to stay 3 days, and found that they only do 2..research had shown the relief from the 3rd as opposed to 2, wasn't appreciable enough to justify the 3rd one. He would see me 6 wks later, and if I didn't get complete relief, he sometimes did one more at that time, but that only happened once, and the drum didn't close, so I had to have a skin graft on my eardrum to close it. Oddly enough, since that procedure the right ear has stabilized and the hearing actually improved to just "mild" hearing loss and hardly ever any tinnitus! I became bilateral 2 yrs later, and just had the 2nd round of dex tx on that ear in May..it has moderate to severe hearing loss.
Don't be alarmed if you have vertigo right afterwards..until the dex is absorbed, it's just like putting any extra fluid in there, it will affect you,but passes within several hours.
Sorry, if this was TMI, but if you're like me,it helps to know what to expect. I would highly recommend them if you are suffering vertigo or being unbalanced frequently.
My husband and I are probably going to visit my son this fall, so if you want to discuss it in person then, you can PM me with your number, and I'll be glad to meet you and try to answer any questions you think of meanwhile..

Best of luck to you!
Bryn

 

October, 2011 Update:

Feeling a little better each day since failing the anti-viral test in July...

I have continued my daily regimen of supplements:

1x 5,000 Vitamin D
2x Omega 3
1x 1,000 sublingual B12
2x 500 Niacin
2x 8 Betahistine
2x 1,000 Vitamin C
1x 50 Dyrenium
6x 500 L-Lysine
2x 10 Vinpocetine
2x 1,000 Lemon Bioflavinoid

And I continue to eat absolutely NO wheat of any kind.

I try to watch my salt, caffeine and alcohol carefully...

Other than that, I am leading a relatively normal life... My ear bothers me a little, but not anything I can't live with, the tinnitus is not currently oppressive, and I can get out a little more to play steel guitar gigs without so much discomfort now....

I have also maintained so far a program of daily exercise in July, which I feel is making a difference to at least my outlook and energy, if nothing else... Every morning at 6:30, we put in a 2.4 mile walk around our block at about 15 min/mile, and 3 times a week I am doing a 60 minute weights program at the Snap Fit.

That's it for now - no further attacks (since the last one), and feeling a little stronger daily. That's an improvement !!

Best wishes to all..

JMC

 

That is a wonderful improvement! Keep it up and I wish you much success.

Keep posting updates.

 

Great news!!! Continuing my lysine along with other JOH and Vit C, but had stopped the antivirals after 3 months and had another attack! Did you take antivirals at all?

 

Hi:

I did a 90-day trial of Valtrex, yes. This was at my insistence, my doctor did not recommend it. The conclusion was that it did not make much difference to my case. He says that if the MM is caused by a virus, it must be an intra-cellular virus. But Valtrex is not an intra-cellular drug, it can only be in the blood. To make any difference it has to be in the blood stream when the virus becomes active and releases more of itself into the blood.

During the 90 days, I had 3 minor attacks which lasted a few hours each - these were without the severity of vertigo that I was used to, but no less upsetting. Two days after I went off the Valtrex, I had a more severe attack that lasted almost 6 hours. Since then, no symptoms.

It is important to mention that so far in 2011 I've had at least 6 minor episodes and 2 severe episodes. Most of these were earlier in the year during a few months period of higher than normal stress. The valtrex was a last-ditch sort of attempt to knock the frequency of episodes down. But, it did not work. They did not relent during the 90 days.

I stopped the valtrex test on July 05... since then, I've been doing the exercise mentioned above in addition to the supplements. This seems to be making the difference - at least for now.

JMC