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I don't know how much information you have been given already about this disease but there are many websites with very useful information that have helped me cope with this disease. Here are 3 of them: There are some very good online support groups where you can post messages and receive information - one is at. You will meet all sorts of people who are coping with this disease. There is some relief in being able to communicate with others who have this disease. I have been diagnosed with it 4 years ago thought I suspect I have had it much longer than that. I know it is difficult to deal with when you probably have never even heard of it before. While they don't seem to know what really causes it and there is no cure, there is some relief in knowing that it is not life threatening and medications, etc which helps bring symptoms under control to some degree. I hope you have a good ENT Dr. because that is essential. Good luck to you.