1. Community
  2. Ears, nose, throat and mouth
  3. Meniere's Disease

It must be Meniere's Disease, We have ruled out everything else

Posted , 5 users are following.

Bertman
Bertman

Hello Group, Just wanted to chime in with yet another thought, With all the technology in modern medicine, the NASA space program and all the research facilities a person would think they would have a definitive test for meniere's. Instead of ruling out all other possibilities for the cause of symptoms and finally settling with whats left, they should have a test or procedure that would determine the problem. We would love it, the insurance companies would love it. It would help prevent us from having to go through all that relentless testing and exams to determine they can't cure your issue anyway. Sadly enough I was once told by a medical professional that Meniere's is not wide spread enough to warrant the attention of most research hospitals. So hear we are! walking the endless road of discomfort. We must look at the bright side, we could be worse! much worse! So even in all madness I still feel blessed. 

Bertman   

0 likes, 8 replies

8 Replies

  • daniel_43572
    daniel_43572 Bertman

    Posted

    Good evening Bertman!! 

     It sure makes you wonder I know I have over the years after all I been through with this told by two ENTs that they didn’t see any signs of MD but the Shea ear clinic said I had it so go figure here I am pretty much home bound most days if I try to go somewhere the anxiety kicks in big time so I turn around and come back home! Hopefully one day they will make a pill to make us all better and back to normal. 

    • Bertman
      Bertman daniel_43572

      Posted

      Hello Daniel, Thank you for your response, I agree I would love to have a medication to combat meniere's symptoms, Unfortunately I take 23 different meds everyday for meniere's and other issues. and none of them are what I would call effective in controlling the issues. Of course if I didn't have them the symptoms would only be worse. Bertman 

  • diane04068
    diane04068 Bertman

    Posted

    rolleyes  Totally agree with you. The inner ear and brain are so complex I believe we are still trying to figure out how to get in there to help.
  • mary16977
    mary16977 Bertman

    Posted

    I say it all the time Bertman...they can put a man on the moon and put a computer on something the size of a credit card... but nobody can fix why my ears ring so loudly and I can't lie flat anymore. lol smile And you're so right, it could be much worse. I'm slowly acclimating to these hearing aids and do enjoy being able to hear better, even though it's not perfect and some things sound funny. smile

    The more we keep the conversation going with our medical providers the more exposure this condition gets, so let's keep talking!

    All the best,

    ~Mary

    • Bertman
      Bertman mary16977

      Posted

      Hi Mary, You gave me an easy task "keep talking" this is easy for me to do. I have always felt that Nasa can send people to the moon and back, just like you stated, But here we are with tinnitus. I have been told in the past that menieres is not a widely known illness and just misses the research dollars. I guess more people will have to it have before research facilities will take us serious. Anyway I must step down from my soap box and encourage the next member of this group to join in. 

      Bertman 

  • jim79476
    jim79476 Bertman

    Posted

    Bergman,

    You stated that even though you take many meds that they are not effective at controlling the symptoms. But if you did not takes these meds things would be worse. And this could very well be true but what if it isn’t. As I am sure you are aware, meds have side effects, sometimes many. Could these meds also be contributing to your symptoms? I am in no way advocating an anti medication position, but I am concerned that doctors are quick to prescribe medications that may or may not be needed. 

    Life style changes are sometimes very inconvenient when we are dealing with all our other issues and it is easier to just take a pill. I hear people saying all the time they don’t want to give up salt, coffee, wine, smoking, sugar, etc. They don’t have time to exercise, meditate, track their triggers, etc. I believe if we want to take control of Meniere’s syndrome we have to do the work. 

    Please, please, do not read this wrong. I am in no way saying you are not doing all of these things. I just wanted to get yours and others ideas as part of a continued conversation on this forum. I am not advocating against any of the treatments  Meniere’s suffers are getting trying to combat this debilitating syndrome. I just want us the suffer to be in control. I hope this makes some sense, as I am a bit foggy today. If it does not, then just disregard. 

    Best set to you. 

    Jim

    • Bertman
      Bertman jim79476

      Posted

      Hello Jim, I think what you say makes great sense. Unfortunately most medications have side effects, It becomes a choice of the side effects or the benefits of the medication. My prescription regime was established at the Mayo after all testing was completed. I was sent to Mayo after not responding to multiple treatment options. Anyway I am quite sure that some of my meds worsen a specific symptom, but helps with other symptoms. I also discovered several allergies at Mayo, one being botox, widely used for the treatment of migraines. I am hives prone, I see a dermatologist for this very issue. Anyway, I am always glad to hear from you. And I do believe that most doctors will pounce on a medication that is stated to treat a specific illness an individual might have. I feel that most doctors get frustrated when treating a menieres patient, There is typically no quick and easy fix such as a broken bone. They see us time after time and the outcome is usually the same, We still have the symptoms!  Have a great day Jim and thanks for posting 

      Bertman  

    • jim79476
      jim79476 Bertman

      Posted

      Bergman,

      This syndrome is so complicated. So many variables. It sounds like you have dealt with a lot. 

      I am am just trying to see what we can do for ourselves in both understanding the complexity of Meniere’s and our own self help. Like you I have gone though the myriad of medications, non of which helped. I know that is not the case for some as they say a certain medication is helping. I have had Meniere’s go away, for not a reason I can understand, and then return year or years later. If I would have been taking a medication at the time it stopped I could have continued taking the medication thinking it was helping. This is very confusing to me so I decided to make major life style changes and stick with them regardless. I still have attacks but they are fewer and less intense. But I feel more in control.  I have had Meniere’s since 2000 and I am 72, so I am not new to the process. I hope they do come up with a medication that can really address the over all conditions we face. In the mean time I will continue to educate myself and keep my life style changes in accordance to my triggers and take medication that are needed. Passing on information is one of the true values of this forum as well as the camaraderie. 

      Take care,

      Jim

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.