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Another happy customer...

Discussion in 'Your Living Room' started by DavidK_nc, May 2, 2019.

  1. DavidK_nc

    DavidK_nc New Member

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    May 2, 2019
    Hello,

    Had my first bout of symptoms January 1 last year. Woke up and when I got out of bed I felt like I was drunk. It didn’t subside so I went to the urgent care where they manipulated my head, monitored my eyes and said ‘Vertigo’. Went to my primary care doctor that Monday who proceeded to refer me for an MRI brain scan, a heart stress test, and physical therapy. Brain scan showed nothing, heart perfectly healthy for my age (61) and physical therapy and daily exercises did nothing.

    Four weeks later when I went to the dentist and told him what was going on he said ‘TMJ’ and sent me to a TMJ specialist (actually it’s TMD). She fitted me with an appliance to wear at night and my symptoms disappeared in a few weeks. There was no connection between the TMD and the Vertigo attack as it came back in October. This time though with a high pitched ringing in my right ear. The symptoms that have continued from then to now are, constant feeling of fogginess - like being drunk. Off balance when walking, lack of being able to focus and concentrate, and memory issues, particularly short-term.

    I’m a software architect and I do a lot of programming. Programming requires being able to think about a lot of things at the same time. It’s now taking me about 40% more time to do the same tasks that I was able to do before. I went back to my TMD specialist and she referred me to a Neurologist. He did a bunch of exams and was confused as to why nobody sent me to an ENT, so I have an appointment with one in a few weeks.

    The Neurologist is about 70% sure it’s Meniere’s and after reading several articles and finding this site, I’m convinced he’s correct. So…I’ve been hydrating excessively, reduced any unnecessary salt intake, cut out the alcohol, and am trying to cut down on the stress.

    What really really bothers me is the lack of support and understanding from those that should be there for us….our healthcare providers. I take their responses as “did all we can, don’t know what else to do, and we’ll just keep looking at you like you’re crazy”.
     
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  2. Rgv

    Rgv Member

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    Agree on the doctors, they have no clue what to do with it so they send you off to other doctors who also have no clue
    Complete waste of money
     
  3. Robert Wilson

    Robert Wilson Member

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    Yup. Wasted a lot of money and lost a lot of faith in our healthcare system while dealing with this one. I'm probably just more realistic now. You've got to take ownership of your own health and realize those guys are trying to make money. They're not malevolent at all, but they're profit oriented, don't want to spend a lot of time on any one patient or anything that is super complicated, and if it is outside the box you're more or less on your own.
     
  4. Fisherman42

    Fisherman42 Active Member

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    I’ve had doctors who wouldn’t give me the time of day but also I’ve found a few that have listened to my problems and worked with me to improve my health in good ways. When I first started going to doctors I wanted them to “fix” me. It wasn’t until I realized that I needed to be educated about my disease that my interactions began to be more beneficial. I knew what to ask for, I knew how and when to push for what I needed. Only then did doctors begin respect what I was trying to do based upon the knowledge and effort I was showing. I have no problem saying “thank you but that isn’t going to work for me I’m going to another doctor” and waking out. These medical experts work for you and sometimes you need to fire a few to get what you need. Take no prisoners. This is a battle and to win it you have to be bigger and badder than what you are fighting.
     
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  5. Tess72764

    Tess72764 New Member

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    Davidk_nc — Please research Vestibular Migraine before your ENT appointment and talk about both Meniere’s and Vestibular Migraine.
     
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  6. Clare

    Clare Active Member

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    Doctors are trained to treat illness, and they don't get trained in conditions for which there is no treatment. Most really would like to help us, but there's nothing in their toolkit. Also, we are not large in our numbers, and doctors just don't come across us often enough to dig deeper. That's why it's important to see a neurotologist, whose training is most likely to include something about Meniere's. But still, they have no good treatments without serious side effects.
     
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  7. zotjen

    zotjen Member

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    The problem is also that Meniere's is not easy to diagnose. Technically, it can't be diagnosed. There is no test that can be given that definitively says you have it, so it becomes a matter of ruling out other possible causes of your symptoms.
     
  8. Robert Wilson

    Robert Wilson Member

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    I think the problem goes even farther. Meniere's doesn't really mean anything from a causal perspective. They dn't know a pathology. They're just observing symptoms. People can have "Meniere's" with totally different causes.
     
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  9. DavidK_nc

    DavidK_nc New Member

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    May 2, 2019
    Thank you.
     
  10. Jedirusty

    Jedirusty New Member

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    I feel your frustration Davidk, going on over 3k worth of dr bills since my first sign of symptoms and still have no relief or answers. Just saw a TMJ specialist that poo poo'd me at the first mention of MD. Yet he happily offered a CT scan and several follow up visits to support his boat payment I assume?
     
  11. Bulldogs

    Bulldogs Well-Known Member

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    Hate to defend Doctors but we have a disease that they have no known cure for!!! Lots of people have diseases that have no cure.

    We can’t look at doctors as Gods, All I can ask of my Doctors is to be honest and tell me the truth.

    The two best doctors I ever saw Dr.Mattox at Emory and DR. Rauch at MEEI/Harvard told me there is no cure but you have options that will allow you to love a normal life...I am glad I listened and got the laby and now I am as normal as any other 49 year old man walking the earth except I am deaf in my rt ear.

    Don’t blame your doctor for your disease or that there is no cure, blame researchers and pharma companies....you have options.
     
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  12. sjw111

    sjw111 Member

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    Ditto Clare and Bulldogs. Everyone is different with MM. Some say you can “cure” it with different regimens. Unfortunately I was not one of those. So like many had to slog my way thought it. Good docs and taking charge of my own healthcare got me to the finish line. (Well I guess there is never a finish line). But at least now feel its fully managed. Had to make the laby choice along that road....best decision I ever made.....and now a cochlear implant....second best decision I ever made. Names of great providers sound something like House, Mattox, Hain, Haynes. All great places to go. The question you have to ask continuously....what is my next step?...that’s how they diffuse a bomb. One wire cut at a time. Keeping taking the next step. Never give in. My life has been full and rich. And I have had over 100 violent barf your guys out attacks. And can show you my bruises from my drop attacks. And many dizzy days. But I learned how to manage those and when I could not stand it then its time for medical intervention. Yes try all of the vitamin and holistic remedies. You have nothing to lose. If placebos at least it buys you a little time because indeed as the years pass things calm down a bit. Menieres has to be tackled by an NFL linebacker. You are that player. Do what you have to to bring it to the ground. Keep asking what is the next step. Keep Dr Hains flow chart of treatment in your back pocket. Work the plan. Good luck to all.
     
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  13. June-

    June- Well-Known Member

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    You will find the right answer but you are correct, you will have to do a lot of research and self referring. I might add, i know from personal experience this is not the only disease where it is necessary to do a lot of work to get the right medical help. As long as we are healthy, we can enjoy the myth of Dr Welby but in fact many disorders are vexing to the doctors and our medical system is one of silos of medical expertise an inch wide and a mile deep. Once you get to the right place, the doctors have a lot to work with but it is hard finding the right doc.

    Since you are doing all you can in terms of lifestyle, try also eliminating caffeine. It is the only lifestyle thing that helped me.


    I am one of many here who benefitted greatly from antivirals. I suggest giving that a try.
    I also suuggest finding an inner ear specialist, a neurotologist. Dr Derebery at House Ear Clinic in LA restored my hearing. I live in pittsburgh and it was worth the travel. Good luck.
     
  14. AnneT

    AnneT Well-Known Member

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    Sjw
    I love love love your concept of focusing on what’s my next step for dealing with MM. It’s worked so well in many other areas of my life.

    I’ve been pushing for The Fix that’ll fix it forever... but of course every treatment, medication, procedure, hearing aid or device, surgery has its process. And then there will be finding out if it’s helped, and getting used to the trade offs. I suppose I will always have the tinnitus, hearing loss and disequilibrium- so every day will be an exercise in “what’s next”.

    Thanks for the reminder!
     
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