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Depressed New Guy

Discussion in 'Your Living Room' started by Brian G PDX, May 1, 2019.

  1. Brian G PDX

    Brian G PDX New Member

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    May 1, 2019
    Greetings everyone,

    Since being diagnosed with Menier's disease two weeks, I have been a bit of a causal observer, on this message board, but finally decided to take the plunge and jump in.

    Here is my story: I am 44 years old and my Meniere's story started off with a vertigo attack back in January of this year. It came out of nowhere as I was walking up the steps from our basement after doing some laundry. I had no idea what was going on, but I made way to my bed and laid there until I fell asleep. I don't recall feeling any pressure in my ear and I've always had a low volume tinnitus from playing in rock bands for years without wearing ear protection. I saw a doctor the next day who checked my ears and vitals and she said I was fine. She said it could have been a number of things, but unless I have another attack in a week or so, i shouldn't worry about it. A week or two later, I started to notice a low grade pressure in my left ear. It would come and go sometimes lasting for an hour or two and then just kind of fading away. It didn't hurt, so I didn't think much of it. I just thought that it was allergies or something trivial. I let it slide for a few months. Finally about three weeks ago, I noticed that the pressure not only wasn't going away, but my already existing tinnitus was louder and now I was sensitive to even everyday noise. As a musician, I could no longer play music without experience some sort of ear pain. I finally made my way to an ENT who said that he was 90% certain that it was Meniere's. I had never heard of it before so I looked it up and was horrified by the description of the progression of this disease and the hopelessness and mystery that surrounds it. Since my diagnosis, the pressure in my ear has been constant. I'm a musician, a marathon runner, traveler, BMXer and hiker. I am terrified that this disease is going to take all of those things away from me. I was in denial for two weeks until last night when I finally just felt hopeless and broke down a cried. It seems like nothing short of a miracle is going to help.
     
  2. Rich

    Rich Member

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    Brian, Your story is all to familiar, I've had it for 12+ years. When the ENT told me I had it I was like you and had no idea what it was. Looked it up on the Internet and like you got scared to death. But you have to remember that there are thousands and thousands of people who still live full lives with MD. The Internet has a tendency to lean toward the worst case scenarios. There are many who successfully manage thier MD and I see no reason why you can't be one of them. It doesn't always progress and sometimes just disappears as suddenly. Try not to worry about 5 or 10 years down the road just try and deal with today.
    This forum has helped me ,read,read,read. The b6 and b5 regiment with lysine has helped me. Get plenty of rest, MD has a tendency to flare when your stressed and tired. Wish you well, there's a lot of good stuff on this forum. We're here for you Brian. I'm kinda of wondering if playing hard rock might have something to do with it. There some other people on here who used to jam and have it..
     
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  3. Clare

    Clare Active Member

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    Brian, as you know from this forum, you're not alone.

    I think one of the worst aspects of this disease is the fear that it instills. The anxiety about when the next vertigo might hit is what kept me from making plans, going places and doing things I enjoyed. That anxiety produced stress, which made me susceptible to more attacks, auguring further into the disease. Once a vertigo attack came, I knew what to do (get horizontal and take diazepam), and I knew it would knock me down for several hours and wipe me out for a couple of days. In a way, I could deal with the actual vertigo much better than I could the pervasive anxiety that colored every day and didn't stop.

    Accepting the disease is easier when you know more about it; knowledge is a great antidote to fear. Researching the condition on reputable websites helped me to understand what was going on inside my head. Unfortunately, because the disease flares up randomly for unknown reasons, it is very difficult to study its cause and treatments. The medical doctors think there's a connection to buildup of fluids in the ear/endolymphatic sac, so they commonly recommend a low sodium diet and prescribe a diuretic. When I checked into reputable published studies about the low-sodium approach, only half of patients seemed to find it a factor in their symptoms. I think I'm one of those that do; maybe you are too, or maybe not.

    There is anecdotal discussion here and elsewhere about other triggers being viruses, allergies, vitamin deficiencies, cervical misalignment, auto-immune disorders, and more. The random nature and duration of Meniere's symptoms, flares, and "burn-out" can make coincidence seem like connection as we try various and multiple treatments. We may never find out for sure what works, but we keep looking. We're pretty sure there isn't a single cause or treatment for everyone. Meanwhile, we make room in our lives by reducing stress, carrying rescue medicines (e.g. valium), getting plenty of sleep, adjusting our work as necessary, avoiding driving during times of flare. We do the best we can with what we have, and we share our experiences here and support each other.
     
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  4. Kevinb003

    Kevinb003 Member

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    Brian,
    I too am a musician. I have played guitar for 35 years. I have had menieres for more than 15 years. it sucks. initially I had it in my right ear and eventually had a labyrinthectomy in that ear. that was amazing and I could hear undistorted, un pitch shifting music afterwards. now my symptoms have moved to the other ear and I am struggling periodically as the condition shifts without warning. if you do anything, try to get antivirals. That is really the only thing that has helped me. don't wait! take control of your health and find a healthcare professional that will be your advocate. PM me if you want any further detail regarding ,music. best of luck, Kevin
     
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  5. Fisherman42

    Fisherman42 Active Member

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    Brian, we’ve all been where you are and if anyone says they don’t still get scared by this disease they not being truthful. But as the others have said above learning to manage this disease is where it all starts. Learn as much as you can about this, immerse yourself in all the possibilities for symptom relief. Ask a TON of questions and never give up or take no for an answer. Have bad days, I have them. Get angry, cry, pray and then pick yourself up and move forward one step at a time. Stay strong Bro you got others on your side.
     
  6. AmyLeigh

    AmyLeigh Member

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    Hi Brian. I hear you. This diagnosis/disease can be overwhelming and a little (or a lot) depressing at times, especially in the beginning. But I second everything Fisherman said above. You are definitely not alone. I haven't met any of the people on this forum in "real life" but they are all very important to me - they are a wealth of information and support. This forum is where I've found answers to all of my questions and the emotional support I've needed on the bad days.

    Educating yourself will be the best thing you can do. Look up the JOH regimen - it's helped a lot of people here (myself included). Like people said above, look into getting antivirals (I am now convinced that there is a viral component to this). Find a doctor that will work with you - even a PCP if your ENT ignores your suggestions. Look into anti-fungals, allergy shots, upper cervical chiropractors, hormone/thyroid issues, autoimmune connections, TMJ/dental issues... There are so many things that MD can come from (personally I think it's a mix of factors, which is why it's different for everyone). I started a journal tracking my sleep, stress, food, supplements, etc. and also what treatments I was starting/stopping/etc. Now I think of every 'attack' as a data point. "Ok this didn't work...noted." and I move forward. Eventually I believe I will figure out this complicated disease and how to live my best life in spite of it. It takes time, patience, and occasionally a sense of humor, but you've got this.

    And we're all here - cheering each other on and figuring this out together.
     
  7. Marta

    Marta Active Member

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    Brian, do not give in as the solution is out there in a form of ... a special diet, vitamins/ supplements, lifestyle, antivirals, steroid or gent injections etc OR a surgery. Something IS going to work! You just have to be patient and look for the right answer.
    In the meantime you are in the right place. This forum has been great and it’s members have always been very helpful.
    Stay strong Thinking of you!
     
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  8. Bulldogs

    Bulldogs Well-Known Member

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    Hey Brian.....

    I hear and feel everything you said in your post.

    The psychological aspect is just as important to beat as is the physical.
    You have many options to lead a completely normal life. Reach out if needed.

    I had a laby and am as normal as any other 49 year old man walking this earth except I am deaf in my rt ear.
     
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  9. Jimii

    Jimii Member

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    Brian,

    The internet shows the worst cases. After joining here I went to another forum related to one of my activities.
    Two guys chimed in with Meniere's also and contacted me personally. They have normal lives like anyone else. That was a great uplift for me.
    It seems this forum is for new people (like you and me) and people really suffering. That isn't a bad thing, it is just the way I perceive it. It is a great forum though with a lot of good people!
    Hang in there, it isn't the end of the world. If you can do marathons, this is nothing.

    Those vertigo attacks do suck though.

    Jim
     
  10. Pupper

    Pupper Active Member

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    Sorry about your recent troubles Brian.

    It is very scary at first. Don't let the word "incurable" get you down. There's many treatments to make it tolerable.

    A few treatments to keep in the back of your mind as you figure things out. Anti-virals. Gentamicin injections. VNS surgery. And lastly, Laby.

    Here is an informative website by a Doctor that knows more about all-things-dizzy and Meniere's than just about anyone.

    Meniere's Disease
     
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