So below is a modified version of the post i used to post a LOT right here on this forum maybe 10 years ago. I've updated it a few times, including last year. I hope some find it helpful and also I'd love any suggestions or critiques you may have to make it more useful. Especially on the summary document here (sorry about the long link!). This photo is repeated at the bottom: http://3.bp.blogspot.com/-zek-1fwGzSE/VFfKF6qhhmI/AAAAAAAARl8/IY7ctGaQaZM/s1600/Unilateral%2BMenieres%2BTreatments%2B9-14-Image.jpg Introduction to Meniere's Disease and Treatments Updated September 2014 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 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. I have created a document that covers the traditional “ladder” of treatment that House tends to follow for traditional MM patients. I've added at the bottom as an image or it is here: If you are newly diagnosed with Meniere’s Disease, or 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. 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 idiopathic. 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 . 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. It is attached below as an image. I can email it to you in other formats. I recommend printing this resource and looking over the treatments at menieresinfo.com and asking on the board at menieres.org or on a meniere's group on fbook about others' impressions of the treatments listed. Your 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 at menieres.org, or there are now many support groups on Facebook at which to ask questions. Topics include nutritional supplements or alternative therapies, 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. http://menieresandme.blogspot.com – My Meniere’s blog My doctor in Portland, OR currently is Dr. Anh Nguyen-Huynh at OHSU.
Already updated it!! Here is new version with new language about antivirals: Hi there! This is kind of a standard message I post for people new to Meniere's. I’ve added links throughout 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. I have created a document that covers the traditional “ladder” of treatment that many tend to follow for traditional MM patients. I've added at the bottom as an image. If you are newly diagnosed with Meniere’s Disease, or 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. 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 idiopathic. 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 . 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. It is attached below as an image. I can email it to you in other formats. I recommend printing this resource and looking over the treatments at menieresinfo.com and asking on the board at menieres.org or on a meniere's group on fbook about others' impressions of the treatments listed. Your 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 at menieres.org, or there are now many support groups on Facebook at which to ask questions. Topics include nutritional supplements (including the "John of Ohio regimen), antivirals, or alternative therapies, 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. http://menieresandme.blogspot.com – My Meniere’s blog My doctor in Portland, OR currently is Dr. Anh Nguyen-Huynh at OHSU.