New Treatment for hearing loss and maybe MM?

Rich,

Thank you for posting this; I just came across it today, and is something I am going to follow up with my doctor about. I have long suspected a hormonal cause for my symptoms, and much of what you describe makes a lot of sense to me. When my symptoms started my doctor did an initial hormone screen at my request - in looking back over my test results, I don't see aldosterone listed, but did test for extremely low levels of DHEA-S (and in doing research, see this is also produced and regulated by the adrenal gland). Does aldosterone require a special test, endocrinologist, etc?

BTW, any news to report?

Also, amberini - for women, what time of month is best to be tested? Or is it just important to get tested at various times to see how they fluctuate?

Thanks again for sharing!

 

ABC123, here is the info and site from where it came:
Yes, monthly cycles are important, wonder what that means for those who don't have it any more...hmmm?
I am sure it doesn't matter as I appear beyond hope and have confounded any and all doctors to date. So, I begrudingly live with it. Yeah, I am in a mood!! But there is always tomorrow............I may get lucky and it could be a good day.
Mind you, its not MM stuff acting up, just life is very heavy right now.

http://www.stopthethyroidmadness.com/aldosterone/

HOW DO I TEST FOR ALDOSTERONE? Testing for aldosterone will be either a 24 hour urine test or a blood test–the latter which is more highly recommended. It may also be important to avoid all salt for 24 hours before the test. It’s worthy to note that aldosterone levels can be doubled if you are pregnant, and are normally a little higher in children than in adults. For a complete picture, ask your doctor to include your renin for a complete picture, as well as sodium and potassium. You can test the latter two without a prescription here: www.healthcheckusa.com But doing an aldosterone and renin test is highly recommended for a full picture.

IMPORTANT NOTE FOR WOMEN: it is strongly recommended to test your aldosterone in the first week of your menstrual cycle and not later. Just as in pregnancy, higher progesterone levels especially around mid-cycle and later can drive your aldosterone up, since aldosterone is made from progesterone.

 

Thanks for the note! It's funny, when they did my hormone screen the first time I don't remember them asking me to come at a certain day or time of the month. I will be sure to ask about it my next doctors appt.

I hope you are having a better day today!

 

I'm going to talk to my family doc about this, too. It sounds like something worth pursuing.

Bob

 

Hi,
I suspected this connection some time ago and did a lot of research. I have read that the typical menier's patient is type A person. That would be me! My sudden hearing loss started during an unusually stressful time in my job, and I recall at the time thinking that this "stress is killing me". Then my nephew, who had been addicted to drugs, came to live with me and the vertigo started. I seemed to be starting to recover when he went into another rehab program, but then he sadly passed away from an overdose, and it came back with a vengeance. So, I am a firm believer that stress played and still plays a huge role in my disease and we know the stress/adrenal connection.

To make a long story short, I did a lot of testing, including adrenal (low per a blood test done my naturopath), and took my theory to my ENT (Otolaryngologist, who is supposedly nationally renowned for his work). He said that if Menier's was caused from low adrenal function, why wouldn't it always affect both ears?

I couldn't dispute his argument, but maybe one of you can. There is such a connection between the adrenal gland and the relationship between salt and potassium. I just think the medical community is missing something.

By the way, before Menier's, my diet was pretty low salt and for months after being diagnosed I stayed between 500-1000 mg of salt without much relief. I have other signs of low adrenal (low blood pressure, frequent urination, and hypoglycemia), items that may warrant more salt in my diet. I have had complication taking a diuretic and firmly believe that I feel better with a little more salt - maybe 1500 - and have actually gotten improvements in my hearing when I increased my salt. Sadly, the improvements don't last. I keep going back to the diuretic because my doctor is insistent and I fear losing my hearing completely. Anyone else have a similar experience?

I am anxious to see results from those of you who are pursuing relevant treatment. Thanks for your posts.

Kathy

 

Hi folks, I am now on day 9 of aldosterone supplement. On average, I would say I am better, but I am not ready yet to say this is "it". I started last Friday, May 16. Nothing noticeable through Monday. Tuesday some improvement; Wednesday was a very good day. Thursday was good most of the day, but I had a dip mid afternoon and recovered. Friday and today are not as good as Wednesday, but better on average than I have been over the past 8 months or so. Still ringing on both sides. But, I have been holding a phone receiver to my ear (left, not right) much more the past few days than I have in months (been using the speakerphone only). Fullness virtually gone on Wednesday, but it has been in and out the past few days. I've had no distortion this past week at all. It (distortion) has been very bad the past few months, popping up every few days and lasting a day or two. I plan to get to two weeks, then have sodium/potassium checked, then at 4 weeks do another aldosterone check. Also have been checking my bp and not seen any change.

Kathy,
Here is my take on one ear vs two and adrenal connection. It is likely that as you consider different folks who are diagnosed with Meniere's, that while the symptoms may be similar, the causes may be varied. Those with bi-lateral are certainly candidates for adrenal issues. Easy to answer this question--the doc should test adrenal function on bi-lateral patients. If there is a pattern, he/she should see it. I also hypothesize that maybe the range of acceptable aldosterone level is too wide. Maybe the bottom end should be up a bit. Instead of a range of 2-20, maybe it should be 8-20 or something like that. These levels rise and fall during the day, so it seems the 24 hour urine collection would be the most accurate, and I suspect larger scale testing is not particularly convenient. Since levels rise and fall, the blood test would naturally have a higher variation since it is a point in time measurement. The urine collection can be inconvenient for many, and generally that has to be sent out, while the blood check can be done at many labs. The urine collection gives a 24 hour total, so a number at the low end of the range on that would logically be even lower at certain times on a blood level check. As you mention Kathy, stress and diet pay a role as well, so those variables need to be captured too and that is difficult to quantify. Docs in clinical practice would have a hard time relating these numbers, but a controlled study might yield some interesting information.

I'll update here into next week and beyond. By the way, my Dad was just diagnosed with acute leukemia and is in week 3 of a 5 week hospitalization and just finishing his second week of round the clock chemo. If ever there was stress, now is it, and I am doing pretty darn well. Aldosterone would be dropping with high stress, so maybe the supplement is keeping mine up enough...so you see stress may not be causing Meniere's, but the stress may be dropping aldosterone levels to the point that the low aldosterone begins to affect hearing in those of us that have sodium/potassium channels that otherwise need just a bit more aldosterone to function than the next guy (hence my comment that maybe the low end of the acceptable aldosterone range needs to be bumped up a bit, at least for the 40+ crowd). I am not suggesting that this is a panacea for anyone or everyone, but it may be a big part of what is going on in some of us.

It is my humble opinion that the endocrinologists could take some business from the otologists on this one. Time will tell. This all may amount to nothing if we get my aldosterone levels up and I still have problems; but it sure seems to add up in my mind at the moment. Of course, I am not a doc who has spent half his career studying this; I am just a guy in south Mississippi who can't hear too well and is looking for relief.

 

I'm planning on being tested, as advised by my ENT, to have my Aldosterone levels tested. If it is low I plan to take Aldosterone to see if it has any effect on my meniere's disease and hearing loss which is servere. I would like to hear any updates on the your progress of this treatment

 

I also found another web site that is interesting since it mentions "their first human patient has experienced cessation of further hearing loss plus a total stop of his vertigo (from Meniere’s)."
The web site is at http://hearinglosshelp.com/weblog/?p=282

 

Hi everyone. Long time lurker, first post...

I just came across the aldosterone information and I am very intrigued as my hearing loss/tinnitus are currently the dominating symptoms of my Meniere's.

Rich904: Would you mind posting any sort of update in regards to your aldosterone results? Are you still taking the medication?

 

Hi. Been off a long time. Lots has happened since I was last on. I my last post I mentioned that my Dad had leukemia. He passed away on July 24 after having a massive stroke on July 3. Needless to say, the stress has been at an all time high. I actually got better in the spring and was almost clear of symptoms, except for substantial hearing loss in the r. ear. Just in the past few days I have noticed a bit of a dullness, and today I have lots of pressure, sounds are loud inside my head and I am just ever so slightly unstable. I worked through the period of incredible stress with the loss of my Dad, taking control of our family business, financial stresses, giving the proper attentioin to my wife and two kids and helping my mother through this difficult time (they were married 51 years and did EVERYTHING together). I do not buy the stress trigger argument in that I have dealt with all of this for 6 months and am past the worst of it. I had almost decided that I had this thing whipped until the last day or two.

About the aldosterone. I had an appointment with the endocrinologist while my Dad was in the hospital. Interestingly, his office was in the same complex as where my Dad was, and it was a closer walk to the docs office from the parking garage than it was to my Dad's hospital room. Thankfully it was convenient during that troubling time. Anyway, he listened to my story and acknowledged that he knew little of Meniere's, but he is very experienced and did understand the idea. He told me that he doubted that the aldosterone would have any effect, as the body reduces its production if you replace it. He was not sure, but was suspicious that what I was taking may not be the real thing, though I differ with him on that. He felt that the artificial hormone, fluorinef would work if the real thing would, and it is available here and much cheaper, plus the insurance co will pay for it. BC/BS denied my claims. He said that he would advise the kidney doc that referred me to prescribe fluorinef and monitor monthly if I would llke. I have not followed up on that. I still have plenty of the aldosterone on hand, and may start them again if I do not get relief from this episode quickly. Here is what I am doing right now about it:

I had a swollen gland under my r. ear in the spring and the doc gave me acyclovir as he thought it may be shingles. This was during the early part of my Dad's trials. Within a few days of taking the medicine the gland went down and my Meniere's symptoms improved to better than they had been in probably 8 months, and up until this week (almost 6 months) have remained at bay. So, I am trying another week of that med. I guess I am more comfortable with this approach because it is "mainstream", but I will certainly pop the aldosterone again if nothing improves by mid next week.

So you can see why I have been off the board. Today I got the meds and came home to try and rest and get back on top of this beast and decided to see what was happening on the posts while here on the couch. Hopefully the dizzies will not make a visit this go around.

 

Here's a followup article on the one I posted this Spring.

"Aldosterone Revisited"

by Neil Bauman, Ph.D.

In the March, 2008 issue, I reported on an interesting
treatment for hearing loss. There has been a fair bit of interest
in this treatment as evidenced by the various comments on
the HearingLossHelp blog. You can read the original article
and comments at http://hearinglosshelp.com/weblog/?p=282.

In part, here is Rick Walter's comment (#15) on what has
been happening with his ears since he began taking
Aldosterone two months ago. He writes:

"I've been taking Aldosterone therapy for about 2 months
now. My hearing loss came from many things. Much came
from loud noise over my lifetime, but I came down with
Meniere's disease about a year ago, and the hearing loss
greatly accelerated.

The Aldosterone gave me back CLARITY OF HEARING, but
only a LITTLE VOLUME. Make no mistake any improvement
is huge when your ears are as bad as mine are. Also my
DROP ATTACKS AND WEIRD DIZZINESS ARE
COMPLETELY GONE!"

Obviously, Aldosterone is not a complete cure for hearing
problems, but just improving clarity of hearing (improved
discrimination) is a wonderful blessing in itself.

Also, it seems that Aldosterone can help fix a damaged
balance system. For example, reducing the frequency of, or
totally eliminating, drop attacks is certainly another blessing.
(Drop attacks are where, without warning, you suddenly lose
your balance and fall to the floor. This typically happens in
people with severe cases of Meniere's disease.)

If you are interested in Aldosterone therapy either contact Dr.
Jonathan Wright (see above link) or work with your doctor
while you are on this therapy so bad things don't happen to
you. With Aldosterone, as with other body hormones, too
much of a good thing can quickly become a bad thing.

 

That is interesting in that clarity of hearing more than volume is what I got with the steroids and additionally with allergy shots.

I wonder if to some degree they are doing the same thing in the body in the way they take pressure off the immune system.

 

I would be cautius with experimenting with aldosterone. Although it has shown efficacy for the protection of HEARING, aldosterone (injected into the ear AND oral) has been used for some time to CAUSE endolymphatic hydrops in animal models. One research project showed it caused the over-activation of the marginal cells of the stria vascularis (which are thought to be involved with the production of endolymph).

A number of the studies cited in the above article show that corticosteroids (dexamethasone, prednisone) compete with aldosterone, which might explain their helpful effects (if the receptor site is bound to dex, it can’t bind to aldosterone).

Just food for thought before people start taking a hormone that might make the overall symptoms worse...

 

Thank you for posting this.


Hugs Ruth

 

...I found this interesting as I also got the "clarity" (no distortion) back in my hearing after I was on the GI diet for a while. I did a little googling and saw there's a relationship between Potassium, insulin, and aldosterone. I didn't have time to investigate, but saw enough to convince me that both of our cases could have been attributed to adrenal exhaustion caused by metqabolic syndrome. Taking aldosterone would only replace the aldosterone because of the adrenal exhaustion but the GI diet allowed my adrenal gland to recover and make sufficiant quantities of aldosterone.

...But just seeing that aldosterone can affect potassium levels tells me that it's very likely that it could also effect Meniere's or BPPV just like insuylin levels.

Rick

 

I would caution you all as well on this. I'm not a doctor, but I am a medical student who has studied all of this for two years now. Aldosterone is a hormone your body secretes to RETAIN more sodium from your urine. Obviously, if there is a legitimate medical trial going on in this country, there is some promise, but I have not yet had time to read the research and reports. Messing with steroid hormones is serious business, so please make sure if you're taking a supplemental steroid hormone that you're doing it under the supervision of a doctor who knows what he/she is doing.