Through my 7 months MD journey I had visited many doctors, many of them were the best in the class in our country. But the last one Otonerologist, I knew, was special, because she recently defended a dissertation about MD! I thought - Bingo! Finally I will get all the answers about my disease and with her help I will find the cause of my MD! So, in the beginning she made a videonistagmometry test and had found that my affected ear is overreacting to vestibular provocation by blowing cold and hot air in my ears. Then she suggested the Temporal Bone 3T MRI test with gadolinium contrast. When the results were available, she just called me on the phone and said that they had found initial changes in endolymph hydrops and said that I probably have MD. Then she suggested making the same MRI test in 8 months to check changes. When I asked her, are there any new solutions to make my symptoms less, she just said, except Betahistine I am taking and less salt, there is no such and our conversation ended. I thought how is that so, why to spend 8 years of studying MD and to say only a few words to a freshly diagnosed Menieres patient by phone and not to offer any help, nor to say there is some hope?! To put it mildly I was in shock! Then I wrote her an email by writing this: According to the info I had found on the internet - Endolymphatic hydrops is referred to as primary or secondary. Primary idiopathic endolymphatic hydrops, known as Ménière’s disease, occurs for no known reason. Secondary endolymphatic hydrops occur in response to an event, such as head trauma, allergy or an underlying condition, such as an autoimmune disorder. Treatment of SEH has five goals: to stabilize the body’s fluid and electrolyte levels; to identify and treat the underlying condition that is driving the SEH; to improve daily symptoms; to manage persistent symptoms and changes; and to maintain quality of life. Who can help me to identify and treat the underlying condition that is driving the SEH? Unfortunately, I didn't get any answer.. Besides, no one from the doctors, even professors, did not mention that could be the underlying cause for my MD symptoms and we need to find them first, no one, and that MD disease and MD sindrome is not the same! So now I am completely disappointed with the doctors that they are not helping with their knowledge and experience they have for those who really need help. Now I am forced to postpone my job and other daily activities by studying MD disease myself. Now I am wondering who the doctors are for?
Do you experience vertigo &/or drop attacks? Does your hearing allow you to carry conversations with others in real time?
No rotational vertigo, nor drop attacks. The hearing is quite good, no problem to understand others, not even close, but I can feel it is fading little by little and I can't stop it. Here is more about my situation: Has anyone tried to get Ebselen (SPI-1005) online?
Two meditation techniques known as vipassana & samatha will help you cultivate a quality of mind that will allow you to concentrate on your job, & do your daily activities, despite the raw sensations & psychological byproducts of your symptoms. I mention this because "being forced to postpone your job & daily activities" insinuates that you in fact want to work & do your daily activities, & I want you to be able to do the things you want to do. Hence you could, for example, work & do your daily activities & study Ménière's disease during your discretionary time. Granting your symptoms, & the availability of meditation techniques such as vipassana & samatha, the above perception becomes an either/or fallacy, or false dichotomy. That said, there's nothing wrong with choosing one over the other, however this option prevents you from being forced to sacrifice one, in order to pursue the other.
This excerpt from the book tells a lot why still there is no ultimate cure for Menieries and why we feel disappointed when we desperately seek help from our doctors: As with all ‘idiopathic’ conditions, the medical community has its hands tied to an extent. Waiting for the ‘definitive’ cause to be published in medical literature or a ‘definitive’ cure to be announced is futile when there are clearly so many causes and each case may be very different in each of us. In the current system, doctors will always find themselves simply identifying a set of symptoms with a ‘label’ (as with Meniere’s disease) and prescribing the recommended drug or treatment according to what they have ‘learned’ at medical school or if you want to be more cynical, what the drug companies dictate. As you will read later, herein lies a very large part of the problem. Doctors are trained to identify a set of symptoms then recommend a ‘treatment’. Treating the symptoms rather than dealing with the cause is the basis of modern western medicine. But nothing within the body just happens; there has to be cause. Cause and effect is an undeniable fact of nature.
I completely understand your frustration but Doctors are not God. The truth is we have a condition for which there is no known cause and no known cure....arhat is not the Doctors fault.....Lots of people have conditions that there is no cure for. My friends 7 year old son has type 1 diabetes and it has been tough at times. The truth is we will all succumb to a disease or condition that has no cure let’s be thankful our disease does not kill us and we have options. God Bless
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I agree that doctors and medicine are not Gods, not yet. But I don't agree when doctors don't help finding ailment cause. Even worse, after diagnosing they are saying there is no known cause of this disease and that they can't help. But doctors know for sure that MD symptoms can cause a lot of things and if you find that cause you can control the disease symptoms! There are a lot of published studies in pubmed about what could cause meniere's symptoms, a lot. So why don't they say this to the patients?! Instead of saying you need to learn to live with that, they could say - now you need to check first your jaw, cervical, virus probability and so on. So this kind of help is missing from the doctors! It is good when you don't trust doctors and you are trying to find help on the internet by oneself like on pubmed or forum like this, but not all people are the same and some are condemned to suffer the rest of their lives not even knowing that there is some help and hope.