A New Low and a New Decision - Gent Injections

Sooooo, I've had Meneire's Disease for 10 years. In that time it has been unilateral (only affecting my left ear). The first 4-5 years I had 4-5 hour long rotational vertigo attacks every 3-4 months with almost no symptoms in between. Then I started having them more often, about every 6 weeks, and my balance really began to go wiggy. I had an ENG in 2005 and it showed 96% measurable loss. Now an ENG only measures a portion of your balance function, there is no test for all of your balance function...

After i hit that I place, I stopped having the big knock down attacks. Sure I'd have attacks, but it was more like really bad carsickness instead of the rotational vertigo. I couldn't go to work, but the vomiting stopped. I felt like that should kind of be considered "burnout." Then in the last 6-7 months things changed again.

Now, I almost never have long bursts of rotational vertigo or MM symptoms. Instead I have "quick hits" of various types.
All of these seem to be most common when I have eye strain - like when I'm using a computer to much (which is all I do in my job, so good times for me!)

The types are:
Nystagmus burst: this terrific little # is a quick hit of nystagmus (uncontrolled eye jerks) for anywhere from 10-40 seconds. During these I can't see clearly or walk, but am not having rotational vertigo. Afterward my eyes are sore and I am nauseous.

Rotational Vertigo Burst: Rotational vertigo AND nystagmus for 30 sec to 3 minutes. That causes me extreme nausea and I usually have to go close my eyes someplace for 30 minutes. This has actually happened when I was driving a few times and that is scary.

A Rotational Vertigo "Jerk": Rotational vertigo that seems somehow involved with the saccule that causes me to almost fall or stumble. There are rotational vertigo symptoms but they only last a few seconds, but I have like half a drop attack, I am jerked toward the ground.

A True Drop Attack: This has happened once. I was walking along... and then I wasn't. I fell backwards hard. There was no rotational vertigo. I just fell. Hit my head too.

At this point this super fun stew of symptoms has finally pushed me to the edge where I am willing to address it through destructive means. At first I tried all the other standard treatments I am aware of : diuretics, allergy shots, lifestyle changes, trigger avoidance, Meniett Device. I have not tried sac shunt or decompression, or have i tried antivirals. I wish I had tried antivirals, but that time is in the past now.

My right ear continues to be fully functional. At first I panicked and wanted to do a VNS RIGHT NOW... but my Dr talked me down and I've decided to do a course of low dose gent injections over the next few months to do a chemical laby. My first injection is scheduled for 2/5.

More Pics

Pics from my visit to House Ear clinic in 2005

These cases hold inner ears donated for science
On the wall in a hallway
Dr Derebery and Me
Front of House

Meniett for Sale/ WARRANTY Info

HI THERE - I have SOLD my Meniett Device

The email exchange is posted below. Based on this info I am dropping my price and being a bit more realistic here...

Price
Meniett as is with no warranty or service (which seriously the thing has had very little use, I think it is in great shape!) - $900 OBO

Price with me getting a warranty, then selling it to you, then if there is ever a problem you mail it to me, then I mail it to Meniett, then they mail it back to me, then I mail it back to you (I would really do this!) is $1200.

Email exchange:
----------------------------
Chad,

No, if you sell the unit to another patient it will void the warranty and we will never service that unit again. We do not recommended selling the unit to another patient due to we have to have a Rx on file for every patient that gets a unit. If you have any questions about this please contact me at 877-966-3350.

Thanks,


Chris


From: Chad [mailto:chadmad@gmail.com]
Sent: Monday, March 10, 2008 12:07 PM
To: , Christopher
Subject: Re: Meniett Contact Us Submission

- Hide quoted text -
Christopher,

One last question. Lets say I extend the warranty. After that, I am considering giving the Meniett another try for six months. If after that time I decide the device is not a good fit for me and I choose to sell it to another individual can that individual use the warranty for repairs until it runs out in six months? Can they then renew it?

Thanks
Chad

On Mon, Mar 10, 2008 at 6:55 AM, , Christopher @medtronic.com> wrote:


Chad,

Yes you can still purchase the extended warranty on the unit. Please
give me a call at 877-966-3350 and I can get that set up for you.

Thanks,


Chris
Meniett Customer Service

-----Original Message-----
Subject: Meniett Contact Us Submission

From: Chad
Email: chadmad@gmail.com
Comments:
I have a Meniett that I purchased in 2005. It is no longer under
warranty. Can I buy a new warranty for it now, even though its old
warranty expired?

Meniett for Sale

Meniett Device for Sale, 900 OBO See other post on warranty info

First, the question you are probably asking yourself!

Why did you stop using it and what is your opinion of the device as a treatment for Meniere’s Disease?

First let me offer my opinion of the Meniett Device. In my opinion the Meniett will help a large group of patients (see Medtronic’s studies, I believe they are a good representation of effectivity). I see it as a symptom control device, not a cure. The Meniett uses air pulses applied through a tube in the ear drum to try and apply pressure to the inner ear in order to reduce and push back the fluid issues caused by the disease. Let me give you an example: Lets say you have Meniere’s attacks every 3 weeks. I believe the device can help move that out to every 8 weeks or more and the attacks may be lessened. So, some of the attacks will be avoided, or their severity will be blunted thanks to the device. It works best for people early on in the disease.

In the early part of 2005 I was having violent Meniere’s attacks every 4-6 weeks. They would last hours. After talking to my Dr (I was at the House Ear Clinic in L.A one of the top centers in the country for Meniere’s) they recommended I either have shunt surgery or try the Meniett. I chose to try the Meniett. At this point an ENG revealed a 94% loss of measurable balance function in my Meniere’s affected ear. I am unilateral.

I tried the Meniett for close to a year. I noticed a change that summer in the nature and type of my attacks. They would no longer cause rotational vertigo. Even when I hadn’t used the Meniett for several months, when I had an attack no vertigo was present. I would get EXTREMELY dizzy and be out of commission for several hours, but I would rarely throw up as the spinning sensation had stopped being present. Basically I had achieved what is sometimes called “burnout” where the disease is advanced enough that while you still get sick the severity of the attacks is lessened. I tried to the Meniett too late, if I had been using it a few years before it would have been much more useful for me.

Right now I am taking a diuretic and doing allergy shots as my main forms of treatment. I have a MM attack every 4-6 months. I need to watch my sodium intake and avoid caffeine, nicotine, and not getting enough sleep.

So basically after 8 years with the disease I am at a point where I feel I can part with the Meniett and be just fine.

The other details:

For sale: One Meniett Ear Treatment Device, manufactured by Medtronic. www.meniett.com The device is used for treatment of Meniere’s Disease.

Purchased – January 2005, Prescribed by Dr Jennifer Derebery at the House Ear Clinic in Los Angeles

Used how often? In May – Nov 2005 the device was used a total of 200 times or so (that is not very much). It has not been used since then. It has one set of ear plugs to go with it. Different sizes can be ordered from Medtronic.

http://store.meniett.com/customer/home.php

What has it been doing since 2005? Sitting in safely and quietly in my closet waiting for you to buy it.

How much did it cost new? $3500

Did you pay for it or did insurance? I paid for it with a loan, I did receive some money for it eventually from my insurance company, but it wasn’t very much and took months.

How much are you selling it for? $1800 OBO

Is it under warranty? No it is not. But a one year warranty can be purchased for it I believe, I am trying to confirm that with Medtronic.

http://store.meniett.com/customer/home.php

What else should I know: The Meniett is the only FDA approved medical device available for treatment of Meniere’s Disease. There are other hand pump devices available overseas, but none of these devices have been vetted in the US and approved by the FDA.

Thanks!

Chad M

chadmad at gmail.com

PS, I’ll post pictures later this week!

Hi there! This is kind of a standard message I post for new members at www.menieres.org. I thought I'd repeat it on my blog as a helpful post about Meniere's and finding out more about it.

I’ve added links throughout the post to threads on the forums there elsewhere on the site that I think may be of interest. I’ve also added a few links of my own to documents and other sites throughout and at the bottom.

If you are newly diagnosed with Meniere’s Disease, or I have questions about whether my symptoms match the disease, there are three questions I imagine are foremost in your mind. 1. What the hell is Meniere’s Disease 2. Are they sure I have Meniere’s Disease? 3. Ok, so what are my treatment options?

Let’s take these questions one at a time.

In response to question 1, Meniere’s Disease (also called MM or Morbus Menieres) is a general term describing a condition of the inner ear that causes episodic rotational vertigo, fluctuating tinnitus (ear noise), hearing loss, and ear fullness and pain. If you have traditional MM you will show all four of these symptoms at some point in the first few years you have the disease. Not all four will hit at once and some may be more common than others, but you will have all four. The gang over at http://www.menieresinfo.com describe the disease really well. Read their description by clicking here By the way for online research on Meniere’s you can do NO better than their site. They have link to everything you can think of. You can spend days learning about this disease by reading their site. Also, never underestimate the value of the "search" function on this site right here!!

If you have non traditional Meniere’s Disease it means you may have one or two of the four or a slight variation on the four but that your ear acts unique from the majority of Meniere’s patients. Why is it still called Meniere’s Disease? Because the other founding principal of a Meniere’s diagnosis it that your condition is [b]idiopathic[/b]. In other words the doctor’s can’t explain the cause. Meniere’s is by definition considered to be an idiopathic disease. Because it is idiopathic there is no currently accepted way to “cure” the disease. There currently is no cure for Menieres. There are many ways that doctors try to manage the symptoms of the disease however.

As to question 2, Meniere’s Disease has many mimics – or diseases that at first appear Meniere’s like, but that are actually caused by something else. Examples would be true BPPV, MS, and a tumor of the ear or brain. This is why many tests are required to rule out all the mimics before a Meniere’s diagnosis is given. We have to be sure that the cause really is idiopathic.

Here is a MAJOR POINT. It is imperative that you see the right kind of doctor for your disease. Meniere’s Disease should NOT be treated by just a regular ENT if it all possible. There is a type of specialist who is an expert in Meniere’s and dizziness disorders. They are ENT’s who’ve done extra training in that area and are called neurotologists or oto-neurologists. There are lists of them in various parts of the world at http://www.vestibular.org . If you look at the top of this forum you will find a link to the Meniere’s Database where threads covering common topics are kept. There you will also find the doctor list and many posts of reviews of individual doctors to give you a more personal flavor for them.

Finally we get to question 3, what can I do about it? Note, most of my post is directed at “traditional” MM patients, but non traditional patients can benefit from this information as well.

Because Meniere’s is idiopathic, there are many theories and treatments out there. It is actually difficult to find standard agreement among doctors as to what steps should be taken with the traditional MM patient. For a good list of every treatment available (just about) try once again menieresinfo.com and their treatment page.

My own doctors have primarily been affiliated with the House Ear Clinic (see: http://www.houseearclinic.com) and House Ear Institute in Los Angeles. My doctor there was. Dr. M Jennifer Derebery House is one of the leading research centers on Meniere’s Disease and AIED in the country. I have created a document that covers the traditional “ladder” of treatment that House tends to follow for traditional MM patients. Click here to read it . It is a PDF file. I recommend printing this resource and looking over the treatments at menieresinfo.com and asking on this board about others impressions of the treatments listed. You treatments may be slightly different if you are non traditional or bilateral, but many of the same treatments will still apply.

I realize I’ve already gone on too long…so I’ll cut it short. But basically, if you look over those links you will have a great deal of information to start with. I also recommend Patty Haybach’s book “Meniere’s Disease, what you need to know” available at http://www.vestibular.org .

There are many other topics you need to look over. Most of them have long posts about them in the Meniere’s Database which is in the main forum at menieres.org . Topics include allergies, SERC or betahistine medication, steroids and MM, gentamicin injections, shunt/endo sac surgery, and VNS surgery. Plus don't forget about the search function, or feel free to start a new thread.

If you have any lasting vestibular damage from the disease or a treatment then you should also get vestibular rehabilitation therapy from a licensed physical therapist.



Other Links:

Dr Timothy Hain’s webpages, very good info, including descriptions of procedures.
The webpage for the Meniett device
http://menieresandme.blogspot.com – My Meniere’s blog
My doctor in Portland, OR – Dr Wilson

SERC - Betahistine Hydrochloride as a treatment for Meniere's

What is it?
Serc is betahistine hydrochloride. My doctor's (Dr Wilson in Portland, OR and Dr Derebery in LA) both believe you should try and maintain histamine in your blood stream. They recommend you do this by either injecting histamine a few times a week or taking Serc (betahistine hydrochloride). They believe it acts as a vasodilator and helps your inner ear reduce the hydrops that they believe cause many of our symptoms. It is a very, very common first line treatment for Meniere’s Disease in other countries.

Serc is histamine but it is a type of it that does not increase allergies in most people. In fact, Derebery says that it can theoretically cause your body to produce less histamine related to allergies, and even help your allergy symptoms slightly. Because of the way it acts according to these doc's, they say antihistamines and other anti allergy med's are allowed as SERC acts on a different receptor.

How to get it.

It is not available in the US under it's brand name – which is why it is not often prescribed here in pill form - but it is legal for a compounding pharamcist to make it for you from scratch in generic form.

I get my SERC from a compounding pharmacy in Pasadena, CA and they have it covered by my insurance I have a $10 copay each month.

They didn't know what it was so I had to print a little FAQ about it off of a link I found on this website:

Go to http://www.menieresinfo.com/serc.html

The pharmacy found it pretty quick from a supplier.

On this webpage you will find links to find a compounding pharmacy, and faq's on serc you can print out and give to the pharmacy so they know what it is made of. There is also a link to a US pharmacy that will sell it you via the mail. Look for the link part way down the page to Heights Pharmacy in Needham, MA. They have the FAQ and have a new pharmacy that does the mailorder.

I take 16mg 3 times a day.

If your ENT gives a bunch of guff about it not being legal (which isn't true if you get it compounded) or if your still not sure and are uncomfortable ordering it from a pharmacy, my ENT, Dr Derebery, also does histamine shots 2-3 times a week instead as a replacement for SERC if her patients have trouble getting it. So either way the treatment is the same and she provides it. The shots are more of a pain (literally) though and I don't know about you but I'd rather just take a pill.

As to SERC's legality in compounded form - If a doc with Derebery's pedigree in MM, who is giving lectures at MM conferences, tells me I can legally order betahistine hydrochloride from a compounding pharmacy and WRITES me the prescription herself, I believe it is a legal! Plus the pharmacist was able to order the stuff with no problem, AND he got my insurance to pay for it!! So Blue Cross doesn't think it is illegal either.

Effectiveness:
As to whether it works... well... it is one of those drugs that the jury is kind of still out on. Dr Derebery and Dr T Hain - both famous MM doc's - prescribe it for Meniere's Disease, and both aren't sure why it works, or if it even does in most cases. Dr Hain posted his whole thought process on his website (link is below). Now he says that meclizine and serc aren't compatible, Dr Derebery says they are, since she is an allergist I go with her opinion, but that is just my opinion to go with her opinion.

Long story short... take it, and see what happens. It, generally, won't hurt you.

Chad

Links:
Drug facts on SERC
Dr T Hain's opinion on SERC
Link to the House Ear Clinic where Dr Derebery is at: http://www.houseearclinic.com

Update since Starting Meniett

Since May 9th I have began the following treatments: Started doing the Meniett device at least twice a day, started taking 16mg of Serc (betahistine hydrochloride) three times a day, started allergy densensitization injections on a weekly basis.

Since around May 15th, I have had one Meniere's attack that was brought on by my bad behavior - I drank coffee, even though I know I'm not supposed too!

Other than that attack, I have had no Meniere's symptoms in my bad ear related to hydrops and my tinnitus has improved drastically to the point where it is barely audible and my hearing has gotten quite a bit better.

The Meniett seems to help keep a general state of equilibrium going in the ear and I believe the Serc is helping with excess fluid as well and is a big part of the tinnitus improvement. I don't know how long this will last or whether or not for sure which treatments are helping most, but I thought this update may be helpful.

Treatment Steps for Unilateral MM - A Summary

The PDF file located HERE is intended as a basic summation of the traditional steps of treatment for unilateral (in one ear only) Meniere's Disease. The steps included do not list alternative treatments such as accupuncture etc...

This resource is intended as a discussion point you can bring with you to your doctor, and is not intended as a complete list of ALL available treatments, just the most common.

Visit www.menieresinfo.com for more information on Meniere's and the steps presented here. Visit www.menieres.org to find a community of folks to discuss these options with.

Bilateral patients may also follow many of these steps, but their path of treatment may vary depending on the severity of their symptoms. I feel bilateral patients will still find a lot of value in reading and considering the steps presented.

This document is open to discussion. I'd love to hear feedback on it so I can improve it. Is there something you consider crucial that is missing? What is it? Do you think something shouldn't have been included? Why?

Please share your thoughts in the comments section of this post.

Vest Rehab making a difference

My Vestibular rehab exercises are making a huge differnce in my ability to cope with the loss of my balance center on my left side. The more I challenge it and practice the easier it is for me and the less dizzy and naseous I feel. I can't recommend this enough for Meniere's patients that have had some of there vestibular function permanently destroyed.

We have moved up the complexity of the exercises as well and I am doing some walking and head movement exercises to go with the eye ones I posted previously.

Allergy Testing

As I mentioned below various studies done show that aggresive allergy treatments including desensitization can help reduce the severity and frequency of Meniere's attacks.

My neurotologist is also an allergist and is having me undergo comprehensive allergy testing right now. What does comprehensive mean?
It means:
Over 175 under the skin injections of small amounts of allergin to see if I react (my doc says these injections are the absolutely most accurate way of testing for allergins and that the "prick" tests or blood tests really don't show all allergies present for most people)

Food and inhaled allergies are both being tested

Once they discover what I am allergic to they make up a shot that includes all those allergins that I inject at home once a week. This shot desensitizes my body to the allergens and greatly reduces there ability to affect my body. This reduces inflammation and stress on the inner ear.

My prick tests and blood test showed no active allergies, however when there is a lot of pollen in the air, etc... I DO react so I wasn't sure that was correct. My skin injection tests showed a strong allergic reaction to pollen and certain trees and molds. So I too feel it is much more accurate as a test.

ENG Results and Strategies

My ENG showed that my left ear has lost 96% of measurable balance function. I've only lost 45% of my hearing in that ear however.The doctor said that was very interesting and that she doesn't usually see such a high loss of balance vs hearing.

My right ear is still 100% on both hearing and balance.I was very surprised at how much balance function has been destroyed, as I am really compensating very well and didn't think that much was gone! I am continuing at my vestibular rehab and really hope to strengthen that compensation even more.

The ENG did make me dizzy of course during the test, but I didn't have an attack afterward, I was just generally unsteady for a little while.I got the tube put in my ear for Meniett and I start the device tomorrow morning. Don't really know what to expect. I assume that even though I've lost almost all of my balance function that MM could still cause vertigo attacks in the bad ear, and hopefully the Meniett will help me preserve the hearing I have left.

And of course, I've explained to my right ear that going bilateral, would really not help me out, and have asked it as nicely as possible to try not to do that...

A decision on the next level of treatment Meniett vs Surgery

As I detailed below, the level and frequency of my symptoms increased in Dec/Jan of '04.

When I visited my doctor's they recommended the next step as endo sac surgery (of which there are several types - I'll detail which they thought was best) or they said I could try the Meniett Box. Although they wouldn't make any guarantees about the Meniett and they said they are unsure why it works and don't feel the full weight of evidence is behind it yet.

The endo sac surgery being recommended by the House Ear Clinic was not your typical endo sac decompression or shunt. Rather, they have begun to believe that the sac itself may contain some of the cells responsible for causing the excess fluid build it up that they believe is the cause of symptoms in idiopathic endolymphatic hydrops version of Menieres (which is what they believe I have). As a result, while they do put a shunt in the surgeon told me he also typically scars the endo sac up quite a bit while he is in there in an attempt to destroy the cells he believes are causing some or all of the fluid production.

I had never heard of this version of endo sac surgery before. While the surgeon I spoke to is claiming 75% success rates anecdotally with this approach, he has not published a study on it. If he is right and the offending cells are located in the sac, and destruction/scarring of the sac will destroy those cells that is quite a find! But, at this point I believe it is only a guess (though a highly educated one) on his part.

I also purchased a book that discussed in detail the pro's and con's of endo sac surgeries (published in 1998) called "Treatment Options for Meniere's Disease, Endolymphatic Sac Surgery Do It or Don't Do It" by Arenberg and Graham. Got it for 10 bucks on eBay. The long shot of the book is lots of really smart ear doc's don't agree about the effectiveness of the surgery.

Two studies with in the last year show good results in testing the Meniett device and anecdotal evidence I've collected from menieres posting groups, etc... is also very positive for many people on the device. More people seem to be happy with that vs surgery, at least at first.

The Meniett is not thought to help everyone, but neither does endo sac decompression. I figured if I was going to start something new it should be the thing the doesn't require anyone cutting my inner ear open.

So on May 9th, I am starting the Meniett. I'll post here what I think of it, what it feels like to use it and if I have any correlating increase or decrease in symptoms.

I am ALSO getting thorough allergy testing done and as indicated by my doctor I am going to start allergy desensitization shots. These seemed to help me in the past, and allergy mitigation is starting to show a lot of promise in decreasing the severity and frequency of Meniere's symptoms on patients who have allergies.

Vestibular Rehab Therapy

I don't have much to say about vestibular rehabilitation therapy yet, because I just started this morning. However, I am hopeful that it will help me deal with the range of MM issues I deal with in relation to dizziness.

Today was hard though. My therapist was a nice guy named Meynard, who put me through some diagnostic tests and taught me some exercises. The exercises were primarily focussed on the eyes and ocular movement. After I was done my balance system was definitely aggravated! I had a moderate attack this morning I think partially because of the challenges involved. That is no reason to give up though. I assume it will be difficult before it gets better.

Go to http://ourmedia.org/node/7937 to look at a PDF file of the exercises he asked that I do.

A word about doctors

If you have Meniere's Disease your care should be coordinated by a Neurotologist. This is a special type of Ear Nose and Throat doctor who specializes in neurological and ear disorders.

I feel very strongly this is what you should do. Even if you have to travel and can only see them once in a blue moon, you should see a neurotologist. Not a regular ENT, certainly not just your primary care physician - nope - you should see a neurotologist. There are a number of resources on the web to help you find one. Start with my links post below.

I can recommend through personal experience the following two doctors:
Dr David Wilson - Portland, Oregon
Dr Jennifer Derebery, Los Angeles, CA
Second hand I've heard nice things about Dr. Black in Portland, OR as well.

If I experience more doc's and feel I can recommend them, I will post their information.

Why do I like these docs? Because they are neurotologists who are very, very familiar with Meniere's and deal with it every day. Dr Wilson is very up on the latest research in the field and Dr Derebery is actually leading and doing research in the field. I guarantee most regular ENT's do not have this background.

They both LISTEN! Dr Wilson especially will take a lot of time with you if you need it. Dr Derebery is often pressed for time, but if I ask a question or need further explanation, she stays and provides it with no complaints. I've gone out of my way to be very educated on this topic. And although I am a layperson I can put a doc through their paces with my questions. Both of these folks don't mind, and answer quickly and authoritavely with answers that reflect their opinions of the latest info out there. I also bring my wife with me to these appointments. She is a Registered Nurse and works in a complex clinical setting at a major hospital. She agrees with my opinion of these docs.

I have had a few experiences with traditional ENT's who were not this way at all and were complete jerks to me. I won't name them here, but they weren't neurotoligists anyway, and I think I've established my opinion on that!

My current diagnosis/state and treatments - read this first

I have unilateral (in one ear only) Meniere's Disease in my left ear. I had my first Meniere's (Meniere's is referred to as MM from now on, not MD, because then you'd think I was talking about a doctor :-) attack in November of 2000. I had severe rotational vertigo for about 6 hours and vomited so hard and so often that my eyes turned red due to blown blood vessels.

What causes Meniere's Disease? Read this link for an excellent summary. It is my own feeling that I have traditional endolymphatic hydrops - but that is just a guess.

About every 4 or so months after that I would have another bout of attacks, they usually only lasted one day, but sometimes more. In late 2001 tinnitus and accompanying gradual hearing loss began.

In 2002 I began getting allergy shots to desensitize myself to allergy, since it seemed that allergies made my symptoms worse. This is now a fairly common treatment to try and control MM symptoms, or at least reduce them in MM patients who have allergies. (See Dr J Derebery's study on this treatment).

As many MM patients do, I went into remission for a year and a half. I DO NOT know if the allergy treatments helped cause my remission, but it seems likely they at least helped. There is no proof of that though.

In 2004 my symptoms starting coming back more frequently. In August of '04 and then again in December of '04/Jan '05 I had very severe attacks with accompanying rotational vertigo, and nystagmus of the eyes. My hearing continued to decline in my left ear and is currently at about a 50% loss.

After the attacks in Jan I became sicker on a baseline basis. In other words I am now at least a little dizzy every day. I am having light to moderate attacks more often. These attacks do not disable me too badly and do not have rotational vertigo, but they are very very uncomfortable (imagine spinning around 15 or 20 times and then trying to walk a 1/2 mile. That is how it feels for hours at a time) and they make walking difficult.

For the last year and a half I have not been on allergy shots because I moved to California and left my regular doctor in Portland, OR where I am from. As allergens have become frequent in the last two weeks I am having allergy symptoms - stuffy nose, sneezing, etc... - and my MM symptoms have kicked up so that I am having moderate attacks almost every day in afternoons.

So - What am doing to address all this?

TREATMENT

* First - I started with the typical stuff for MM patients: started a low sodium diet and began taking a diuretic (dyazide). I have also had to stop any use of caffeine and nicotine. (I REALLY miss caffeine... sigh...)
* Then I started allergy shots because I have moderate allergies. As I mentioned above I have ended those, but am now going to start them again in the next few months. I hope they have somewhat of the same mitigating effect that they did before!
* I take meclizine (also known as "antivert") and occasionally xanax as recommended by my doc's as a method to try and control the dizziness and attacks. Meclizine helps, but it has become less effective since January due to the ongoing damage in my inner ear.
* I am trying to lose weight and exercise more - who isn't right? :-) - but in my case I really feel these things will help me feel better on a daily basis. I feel the more I challenge the disease the more I will grow used to it and be better able to handle attacks.
* In the same vein I have started (just today in fact) vestibular rehabilitation therapy. This is a form of physical therapy that teaches people with constant dizziness exercises they can do to help them cope with the sensations and to help them challenge their systems so they can become more functional. See my next post for my first impressions of this.
* Finally I am currently taking SERC (betahistine hydrochloride). I take 16mg 3 times a day. It is theorized that taking or injecting histamine can help the inner ear deal with excess fluid. SERC has been approved for use in Europe and Canada for a number of years and is actually the first level of treatement along with a low sodium diet in those countries. SERC is not legally sold as a brand name drug in the US due to a squabble between the main manufacturer of the drug and the FDA over paperwork. Britain, France, Canada, etc.. have all found the drug to be safe - that is good enough for me. It IS legal in the US to buy SERC if a compounding pharamicist makes it for you from scratch. This is what I do, and my pharmacist has even talked with my insurance and arranged to have it covered! CLICK here for more SERC info.
* I am carefully considering the Meniett Device, but am leaning towards not trying it. I can explain why, but it would be in another post!

Since January I have seen my doctor (Dr Jennifer Derebery at the House Ear Clinic) and she has recommended I start to consider some more extreme options because it seems my MM is progressing quickly right now. Her first suggestion is shunt surgery. On May 9th I am having an ENG test (look up more info on this test at menieresinfo.com) to determine the full extent of the damage to my balance currently to help me determine if I am a candidate for this surgery. See a separate post on this surgery above.

The surgery decision will be quite momentous and I'm not sure how to feel about it, but we'll see.

That is a basic description, I'll edit and update this post if necessary.

First Post = Links!

Here is a post of something I posted elsewhere... but it has my favoirte Meniere's links on it.

I have Meniere's Disease in my left ear. This is a disorder that causes me to have attacks of dizziness, and to go gradually deaf in the affected hear. Right now I have about 5 - 10 severe attacks a year that cause me to be unable to walk for a few hours because I am so dizzy and often cause vomiting as well. They pass, and then I am vaguely back to normal, but I am now about 50% deaf in my bad ear. I have light to moderate attacks occasionally as well.

So here you go. My favorite general Meniere's sites where you can learn what the disease, current treatments etc is http://www.menieresinfo.com/ - Truly one of the best sites on the disease around. GREAT LINKS to every possible avenue of research and treatment currently being tried. They can lead you to research articles, books, and other resources as well. This is THE place to start if you have the disease.

http://www.menieres.org/ - Good site, good message board.
http://www.vestibular.org/ - Organized non profit for vestibular disorders. Good resource for ordering printed literature regarding Meniere's, including low sodium cookbooks.
http://www.lowsodiumcooking.com/ - Good recipes
http://www.meniett.com/ - More common but still controversial treatment for Meniere's. Go to menieresinfo.com above for links to research papers on this treatement.
http://www.houseearclinic.com/dereberyJ.htm - My doctor, plus a good link to look over the House Ear Clinic, which is a major research site for Meniere's.

And of course http://health.groups.yahoo.com/group/MenieresDG/ THE discussion group for Meniere's Disease :-)Feel free to contact me through posting a comment to ask any other questions you may have.

Thanks
Chad

Purpose of this blog!

I've been communicating some things with fellow Meniere's Disease sufferers and thought I'd add a blog that charted my journey with the disease and allowed me to post some resources for people to view.

This is by NO MEANS intended to be a comprehensive source of info about Meniere's Disease, but hopefully people looking for info on this topic will find some helpful resources here and be directed to other places to get help. Feel free to email me your questions about Menieres I will set up a new email address on gmail or yahoo and post it soon.

Thanks
Chad