Cures I have tried- new member

Long time lurker (or avid reader, I should say), first time poster.

I have waited so long for several reasons. One, heretofore I haven't wanted to admit or face up to the diagnosis. And second, I was not going to post my "sob story"; I was positive I was going to post my success story to share with everyone and hopefully provide some help and guidance to those suffering. How arrogant and supercilious, isn't it? I realize it now, and am greatly humbled by this disease.

Anyway, 39 years old, and "only" over a year into this hellacious world of MM. I won't bore everyone with the details- the waking up one day with the hearing loss, the progression of tinnitus, the vertigo, the final diagnosis of MM. Everyone knows the story to differing degrees, as I know from reading so many of your stories.

It has been especially hard for me as I spent 10 years as a touring audio engineer. I used to get paid for my hearing, and have always been especially sensitive to ANY sounds. Music has been my life- so now living with this tinnitus (bilateral), the hyperacusis, and not being able to hear the doorbell ring has driven me to the depths of depression.I used to not be able to sleep with a window open because the birds chirping would wake me up; now my room sounds like a 747 on takeoff with the fans to cover up the tinnitus.

But the most depressing aspect of all of this is the list of remedies I have tried over the course of a year (and over $30,000 out of pocket), all of which have failed to slow the inexorable progression of this wretched affliction:


The usual round of "top" Dr.'s: 27 year ENT, a couple of highly rated neurotlogist's in San Diego, visits to The House Ear Clinic, head neurotologist at UC Irvine, two Osteopaths (DO's), MSO from John's Hopkins, and a partridge in a pear tree.

Steroids, Anti-virals (acyclovir and famvir), two kinds of diuretics (diazides and HCTZ) with and without potassium supplements.

MRI, of course, all negative, evaluated by four MD's, including John's Hopkins

Currently have scripts for Zanax, Ativan, and Valium just to sleep or take the edge of a particularly bad day. but 90% of the time just to sleep.

Changed to a completely Vegan diet (to eliminate nearly any food allergies), after cutting out carbs as well for about four months. I subsequently lost 30 pounds (6'1", down to 185 pounds from 217)- I guess something "good" came of this whole thing.

Joined gym and started regular exercise routine

JOH regimen for three months

Dr. Strand's supplement regimen for three months

Yet another supplement regimen recommended by some other users (Usana)

A HOST of homeopathic remedies prescribed by my DO's

Four different chiropractors: Blair (Meniere's "specialist"), maximized living, traditional, and NUCCA Dr (I traveled far for some of these). I was officially declared subluxation free after several treatments, and thus my problem apparently is not structure oriented.

Chinese Acupuncturists and Chinese herbs (four different Chinese Dr.'s in total)

Integrative Medicine Dr (more acupuncture with electrodes this time) and medicinal salves

Hypnosis

Several alternative "healers", including:
- A published and practicing energy healer
- Two metaphysical healers
- Two Christian Science practitioners

Had ALL amalgam fillings removed, full deep cleaning- $4000 worth of work (due to Martin Zander testimony).

Allergy testing and shots for four years. My MM started DURING allergy treatments. I can't say if there's any correlation, of course.

NAET (allergy elimination technique)

TAPPING (EFT)

Essiac tea (I mean, why not, right?)

I contacted the clinic in Germany where Dana White had his procedure, and was told they could not help me (why, I don't know- I'm willing to fly to Germany and spend the money if only for the hope).

CURRENT: 250 MG Verapamil and 25 MG nortriptyline nightly (update: changed from nortriptyline to 250MG acetazolamide on a gradual upward taper.) This is a Migraine treatment protocol, and acetazolamide has been used to treat Meniere's since 1958 (http://journals.cambridge.org/action/displayAbstract;jsessionid=0EE4D703B8651102E542FBF12D9D16EE.journals?fromPage=online&aid=945316). Who knows, it's worth a shot, right?

Considering starting:
- Hydrogen peroxide therapy (35% food grade ingestion- tapered).
- Chelation therapy
- ANYTHING else that anyone has had success with (or not!)

First things first: please note that the above only represents my own personal experience. I learned of most of these treatments from the kind and sharing people on this forum. So if anyone new to this nightmare condition is reading this, I encourage you not to be dissuaded from trying anything and everything for yourself. I hope that anyone who has a suggestion or recommendation will feel free to reply as well, of course.

Anyway, after having spent so much time and energy and finding no relief has left me rather hopeless and despondent. I will keep going so long as my will to live is stronger than my desire to succumb and acquiesce to the disease; unfortunately my tendency toward the latter grows stronger with each passing day.

In closing, all I can think about is what a joyous day it will be when this forum doesn't ever have a new member join, and ceases to even exist because they've found a cure for this terrible affliction. Thanks for listening (or reading, as the case may be), and thank you all for this forum and all the postings, thoughts, musings, and suggestions. I apologize if I come off as overly negative, but I'm sure many (if not all) of you have been (or are) there.

 

That is an amazingly dedicated attempt to address this dreadful affliction. After all that you surely deserve to have seen some improvement. "Its just not fair" is what comes into my mind when I allow it to.

Apart from sending best wishes in your direction I offer the following modest contribution-

1. Tried Serc? Not a cure but it might reduce symtom severity or frequency

2. I strongly recommend trying just one "cure" at a time. This of course requires incredible patience.

Hang in there. I find that it really helps my mental state to consciously focus on the things I can do in my life rather than the things that I cannot.

 

Wow ... That's commitment to a cure.

I am so sorry that up until this point none of it has proven successful for you

 

Thanks for sharing (venting?) and you have my sympathy.

I find it interesting that you are taking acetazolamide (diamox). I almost blame acetazolamide for my MM... I have migraines (since I was 18), and then had BPPV which may have been MAV. Went on acetazolamide to prevent the MAV, then stopped due to kidney stones - but it DID prevent the MAV. After that I started having the hyperacusis, hearing loss, tinnitus and eventually was diagnosed with MM. Who knows, it may have been just a normal progression, but I still blame acetazolamide.

Best of luck to you, and if I've learned anything from reading the stories here, it's patience. It may take time for any or all of the various methods to work, so don't give up and please let us know how it goes.

 

Thanks you for the responses- and yes, it is venting I suppose. And yes, I have been pretty committed to a cure...although my patience is waning (yes, even after "only" one year-the longest year of my life).

dizzyggrl: Thank you for the input on the acetazolamide! This is VERY new addition (so new that my first dose is tomorrow!). So I don't know what to expect, but at least I've found a Dr. that has a protocol that he follows. And who knows, it very well may be another road to nowhere, but as they say, a road not taken....

Anyway, your responses are much appreciated. Thank you.

 

raemit- Sorry, I missed your reply!! I did try Serc, albeit only for about 6 weeks, after which I quit because I noticed no improvement. I still have quite a bit of it, and refills, from a prescription which I received from House Ear Institute (and filled at a compounding pharmacy).

And yes, I have had a problem doing only one "cure" at a time; seemed to me that changing my diet, losing weight, exercising, taking supplements, while also going heavy on the antivirals/diuretics couldn't hurt, but I probably am too aggressive. I guess maybe the desire to preserve what hearing I have (had? ) left is so overwhelming that I wanted to get everything in as quickly as possible. At this point, I may just revisit some of the other remedies again (i.e. JOH).

Thanks for the suggestions and kinds words: I certainly should be focusing more on what I can do instead of what I no longer can. I realize I've been far too spoiled for far too long.

 

GF,

When you tried my regimen, did you use the older (but still posted by others in the Internet) version of the regimen that uses just 1500 mgs of lysine, or the newer, much more effective version using 3000 mgs of lysine (here: http://www.zoominternet.net/~kcshop/JOH.pdf)?

Form many, three months can be enough to determine that the regimen doesn't work; but many have gone that long without any relief, but chose to continue the regimen until all the stuff was used up. Then, somewhere between the 4th and 6th month, symptoms finally began to subside.

Have you tried hyper-dosing with vitamin C, which has brought relief to those for which nothing else has? Read about it here: http://www.menieres.org/forum/index.php/topic,28889.0.html

Our best wishes, of course.

--John of Ohio

 

gfsound,
You weren't based in NYC before were you? I knew a sound engineer who was on the road doing concerts,etc.

That being said I am really impressed with how you have tackled this stupid condition.I though I had tried a number of things.Like Caroline said sorry that you have not gotten any relief yet.

What seemed to help me was the Verapamil 240mg and Amitriptiline was up to 50 mg, but have tapered down to 25mg. I know Verapamil has helped others,Sirlanc being one.
I think there is a neurologic componet as so many of us also have migraine and or mav issues.I hope this one works for you.

You haven't tried the Vitamin C,that Solari the owner of this site says cured him.There are numerous threads in the data base.
I am also taking high levels of C,was up to about 12 grams a day and have reduced it to around 5-6.The thing with this routine is that you take it until you reach bowel tolerance,something that is difficult to do when on Verapamil as it is constipating for many.

I wish you luck and hope you can save what hearing you have.

Your contribution to this forum is greatly appreciated!

 

Hi i'm not 100% sure what a vegan diet would contain but its worth cross checking your diet with the "heal your headache diet" by David Buchholz. Buchholz maintains that menieres is migraine and you mentioned migraine medication in your post.

I have had ( and others have had ) great success by eliminating certain foods and drinks and following the heal your headache diet. I lead pretty much a normal life with no attacks since aug 2009.

Best of luck

Frank

 

It's hard not to grasp at straws in dealing with Meniere's. We all want relief and healing and yet it is very elusive. Some find it, some do not. There are no easy answers.

 

I too, denied the fact I had Meniere's. After all my reading I still ignored it thinking it was the latest virus going around. And being a nurse, well we love to ignore symptoms and ESP love to self diagnose. I'm not much into anything holistic. I totally believe modern medicine is here for a purpose. Even my own ENT told me I did not have MM. So glad I dropped him and found a neurotologist to aggressively treat me the way I want. After 2 Gent injections, I'm headed to a Laby. But I don't care, I'm ready to move on. If that is what it takes, then giddy up !! And yes, I am going to write a very long letter to my ENT. It will give me something to do while I recover.

 

gfsound, maybe it is time for surgery.

 

Thanks for all the helpful responses!

@JOH: I would have to look back at my paperwork, but I think I tried the 1500MG Lysine, not the 3000. For sure worth trying again w/ 3000. I DID read about the high dose Vitamin C, and admittedly tried it only halfheartedly- meaning I got to about 4000MG a day, nowhere near BT. To be honest, I had read some conflicting information, and since I was on JOH and doing about 10 other things including a greatly modified diet and exercise routine, and juicing LOTS of raw vegetables, I was already at BT from my diet alone! Now that I'm back to a more sensible diet, I will give the new JOH and hi-dose C a chance.

Question for you (and to everyone, really): my Dr. who also insists that Meniere's is migraine has me on 800 MG of Magnesium and 200 MG B2 (which I failed to mention), in addition to the ever changing regimen of pharmaceuticals. This is why it is so hard to try just one solution! I mean should I try JOH and hi-dose Vit C while doing everything else? The question always becomes "what is working?" And my response has always been "WHO THE HELL CARES?? I'd rather be on 742 supplements/drugs and have relief, and then back off one at a time, slowly, instead of living day in and day out with symptoms."

@James: Never based in NYC, but spent as much time there I did at home- certainly a frequent stop for almost every band. Love the city and still have lots of friends there. Interesting that the Amitriptiline worked for you, and my Doc took me off the Nortriptyline (same class) so quickly (not even one week) and switched me too this Acetazolamide (completely different animal). Like Lorrie says, it often feels like grasping at straws, and I'm probably not being as methodical as I should be since I'm so panicked by the rapid progression of symptoms.

@Jaypr: As I stated above, my Dr. also maintains that Meniere's is Migraine, and suggested many of the same restrictions which I follow about 90%. The thing is that I've never ONCE found a "trigger." My most recent good spell lasted 6 weeks when I started Verapamil, and I thought I had found the holy grail. Without any other changes (diet or otherwise) the symptoms came back- so who knows. Very frustrating though.

Ohhhh surgery- to be honest, I don't think my symptoms are bad enough yet to consider that. I'd say 90% of my problem is the progressively worse tinnitus, hearing loss, brain fog, pressure, fullness, etc. I get some dizzy spells, but thankfully have only had one full blown vertigo attack (like the ones described by so many). Therefore, I personally am only considering that only as a last resort.

Thanks again to all. The good folks here and their willingness to help has never ceased to amaze me over the last year that I've been reading this forum.

 

Great post gfsound. I'm sure it has a familiar ring to it for many of us. Very frustrating isn't it. I find it annoying that so many have success with the antivirals, yet I do not. However I have had some success with the Heal Your Headache method as has jaypr. He has had more success than I but, for me, there are definitely diet related instigators so I urge you to grab the book.

The one good thing is that surgery is an option. I can see that in your chosen vocation that certainly is not the solution you welcome. However, many people, including myself, have had several totally different vocations of their lifetime and for me, looking back, I feel lucky to have made the switches, some chosen, some not.

[ you posted above while I was typing this but after all my typing I am going to post it anyway ]

 

BTW, Dana White still seems to be "cured" and it has been quite a while now. Apparently that treatment is available in the US so maybe you should look deeper in to that.

 

The only thing i am wondering is if you tried any or all of these things long enough to know if they would work for you over time. For instance, my allergy treatment took a year before i had a sense that it was seriously makinf a difference, and a couple years to kow, hey, it did work! Likewise the antivirals while, i did see immediate intermittant improvement, were a two steps forward and one step back thing. Now 5 years down the line, my hearing is very good and the disease has stopped the progression to the bad side (knock on wood).

One thing that helped me was yoga. I am an old lady so we are talking very gentle yoga with a lot of very slow simple poses held a long time which helped me slow down my monkey mind- made so much worse by the frustrating battle with relentless distortion, hypercusis, hearing loss, very loud tinnitus and gradual march towards tulios. The daily yoga practice calmed me. It did nothing for my hearing but everything for my ability to think through my situation, work with my family dr and accept what may be. I had a very good yoga teacher and took private lessons. She was also an rn so no worries about anything that was not right for me.

 

The verapamil did the same for me as well,felt great for a while and the ami was the other piece of the puzzle for me.At least for right now.

I think JOH will probably chime in about magnesium,that has also made a difference as well,it should probably be the citrate kind.Co enzyme q10 is another that I take along with a good B vitamin supplement.My understanding is that if you take B2 you need B6 for it to work properly,so I think it is good to take all the B vitamins as a group.

I too believe that MM and migraine are part and parcel of the same thing for many of us diagnosed with MM.You have checked out the MAV website as well?

 

And as June said while I was typing,some kind of relaxation training and or working on the trigger points in the neck and head region.Staying as relaxed as possible.

 

Btw, i have had great success, but cured i am not. Normal hearing, absence of distortion, hypercusis and absence of tinnitus, yes. Cured, no. It is not an off/on switch it is a slow peeling away of things that aggravate the symptoms til there are barely any symptoms there. But cure? Not in my experience. I have to keep my lifestyle and treatments right.

 

Mg is good for most people regardless of illness or conditions. We don't get enough of it from food. I'm skeptical with regard to high doses of vitamin C, but a few people here seem to have had success with it. I take 1000mg (2,000 during the colder months) and it's good enough for me.

Getting on a strict migraine diet, controlling your lysine/arginine ratio in foods, investigating the circulatory aspect of your health, managing electrolyte imbalance, may help.

I tried a bunch of holistic treatments (including howling at the moon) and they never worked for me. Maybe my brain got in the way of that type of mind/body connection.

You still have surgery as an option, as Donamo said. Quality of life trumps everything else.