New here and frustrated, scared, etc..............

Discussion in 'Your Living Room' started by DCW6286, Oct 9, 2006.

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  1. DCW6286

    DCW6286 New Member

    Hi everyone. I am so glad I found this forum to speak about my concerns. I have been going through an array of symptoms for over a year and a half now. Been to the ENT, Neurologist, Opthamologist.......and soon a NeuroOpthamologist. Had many, many tests done but of course with no firm results. The only test that came back abnormal was my ENG. Apparently because it was found that I now have Nystagmus in both eyes. I have had many different symptoms.......dizziness (mostly feeling unsteady, wavelike..not the spinning that so many of you describe), fullness and ringing in both ears, tingling and numbness in my face, and most recently difficulty coordinating movements and even difficulty swallowing during attacks. I also occasionally experience stomachaches, shakiness, and rapid heartbeat along with all of this. At first I was told I was having anxiety attacks. I did have them in my younger years, when I was in college. This is much different. It was very frustrating to be told over and over again that this was probably what was happening to me, when I knew it wasn't. And test after test, I hear "everything is normal". I feel like I am going crazy. I know something isn't right. But it is so discouraging when you are told they can't find anything. And why not diagnose me with Meniere's I wonder? It seems that all or most of my symptoms lead back to that?? How long has it taken some of you to be diagnosed? And did you go through every test under the sun prior? I go back to the Neurologist tomorrow morning because of these new symptoms I am experiencing (trouble swallowing and incoordination of movement). I had two attacks during which these things happened. They both lasted about 40 minutes and were gone. I have been more stressed than normal lately. I'm sure that isn't helping. Thanks so much for listening. Any feedback is appreciated!

    Debbie
     
  2. lil_dip

    lil_dip New Member

    Welcome Debbie. I'm sorry you are going through so much. It can truly be frustrating when the "pro's" tell you there is nothing wrong. Some of what you describe could mimic menieres, but the trouble swallowing, is not one I've ever heard anyone share about.
    I've had health issues outside of the menieres that kept me searching for an answer. I finally found one by being persistant, and by not questioning myself. I, too, went through a lot of testing that came back normal, including hospital stays and invasive testing. Finally, when all had been tried by my Doctor close to home, he sent me 5 hrs north to a specialist, and finally got an answer.
    I share that with you to encourage you not to give up. I had periods of wondering whether or not I was crazy, but I knew that what was happening to me was REAL, and that I was not going to stop looking until I got an answer.
    Good luck to you, and remember you are not alone!
    Peace~
    Laura
     
  3. nassman

    nassman Guest


    The reason they are not diagnosing ypu with meniere's is because the ests do not show that you have meniere's. The symptoms of Meniere's disease follow a very definitive path and judging from your description of your symptoms and the negative test results, the docs cannot diagnose you with meniere's. It would be unethical for them to do so.

    Lastly, what good would it do you to be diagnosed with something you most likely don't have? If anything, it would take away the doctors' focus from finding what the real problem is.
     
  4. Linda1002

    Linda1002 New Member

    Hi Debbie and welcome -

    There are so many things it can be. It sounds like the doctors are trying to make a correct determination. You could even have more than one thing. Sometimes we just have to be patient.
     
  5. Bergie

    Bergie New Member

    Hi Debbie...Believe me, you don't want it to be MM!! So much of your story sounds all to familiar with me. Except the swallowing,...but I've had that when I had a panic attack when I got a call that my son was hurt at school and couldn't move. OMG, I couldn't swallow, I couldn't breathe...I was gasping and making these noises...just panicked and started to hyperventilate!!!

    Anyway, This has nothing to do with the swallowing ...but, have you been checked for BPPV? If you have nystagmus you might want them to check you for it. This is a great site to check it out. http://www.vestibular.org/vestibular-disorders/specific-disorders.php

    After a year and a half I was reluctantly dx with BPPV and I went for Vestibular Rehab Therapy that worked..although it was hell getting there!!

    Good Luck!
    Bergs
     
  6. Gwendelyn

    Gwendelyn New Member

    Welcome Debbie;

    It can be very frustrating but it is better to make sure it is menieres and not something else, which may be treatable. A menieres diagnosis simply means the doctors don't know what's wrong with you. Here's a link which explains all about menieres and the tests required to rule out other conditions that mimic menieres.

    http://www.menieresinfo.com/diagnosis.html

    I have been waiting since 2003 for a diagnosis and it has been frustrating but I know that the doctors have investigated all possibilities and when I get a diagnosis it will be the correct one.

    I hope you will stick around while you wait for the doctors to figure it out. This forum has been a great source of information and support for me and I'm sure it will be for you too.

    Gwen
     
  7. rev

    rev New Member

    Welcome Debbie,

    I hope that what you have is something more manageable than Meniere's. Make yourself at home with us until you do find out what is taking place.
     
  8. cowcollector

    cowcollector Don't hug a tree, hug a cow!!

    You are welcome here whenever you want to "talk"
     
  9. Amethyst

    Amethyst She believed she could, so she did.

    Hang in there Debbie - Nassman's right, it's best to let the docs test for everything than jump to a quick diagnosis. You want the right treatment, not the quick one.

    Welcome to the forum!
    Amethyst
     
  10. Robyn

    Robyn Russell the Wombat

    Hello Debbie and welcome to the forum. :)

    It may seem that the doctors are mucking you around a bit, but they are trying to determine what is exactly wrong - it is frustrating playing the waiting game, but hopefully they will be able to give you a correct diagnosis at the end of it all.
     
  11. TracyInIndy

    TracyInIndy Guest

    Debbie,

    Welcome to the forum. I must agree with the others, it doesn't quite sound like you have meniere's. The thing is there is no actual test for Meniere's. They have to test you for every possible alternative and then only if they find nothing else and your history and symptoms match would you get a Meniere's diagnosis.

    No matter what's wrong with you, you could benifit from a symptom journal:

    Record:
    When you eat
    What you eat
    What meds you take
    When you take the meds
    Your symptoms and changes thru the day (times)
    Stress levels
    Menstruation

    If you have Meniere's (MM) you should be able to find some things that make your symptoms worse. Food allergies are a fairly common trigger for MM especially gluten (wheat & other grains) and dairy. If your symptoms usually get worse after eating the same type of meal then you can try eliminating that food from your diet. If you eliminate an allergen it should give you some relief with in a week or two at the most.

    Common triggers:
    Sodium
    MSG
    Stress
    Fatigue
    Wheat
    Dairy

    Less common but reported triggers:
    Nicotine
    Seasonal allergies
    Hormones
    Alcohol
    Caffeine
    Other inhalant allergies
    Other food allergies
    Weather

    Good luck, Tracy
     
  12. 2DAMNDIZZY

    2DAMNDIZZY New Member

    Hi Debbie and welcome.

    Glad you found us. You said you have been more stressed lately, well that is one of my biggest triggers. When I am stresssed out I dont feel good at all!!!! :mad:

    Maggie
     
  13. Goomeri Spinner

    Goomeri Spinner New Member

    G'day Debbie and welcome :) You have come to the right place for support and knowledge until they finally discover what is wrong.

    We are all dizzies on here :D

    Maggie is right....stress is a biggie trigger for spins and the like so try hard not too ??? I know its not easy but try and not focus on the what ifs until it happens :)

    I was very lucky :-\ :-\ in that my diagnosis was fairly quick for both my ears though (and yes I was tested till the cows come home)

    I do so hope that it is not MM as it is a mongrel :mad:

    read, read and read some more, but try not to get to freaked out by what you read as often they are worse case senario's, but you need to be informed so you can work with your docs...I hope they are understanding ones ::)

    The database and what many have said to you already are great starting places.

    Come here and vent and ask as many questions as you need to. Mind, we give our opinions and advice but we are not MD's, so all should be run past them as well :)

    The fact that something was wrong with the ENG suggests that it is something vestibular but it may not be MM :(

    Hang in there and please keep us updated :-*

    Maggie (another one :D)
     
  14. Leon

    Leon New Member

    Debbie,
    Welcome. I know it's hard to deal with the doctors not being able to give you a diagnosis. As rev said, I hope you have something more manageable than Meniere's. This beast can be nasty. I hope you get a diagnosis real soon. Meanwhile, feel free to join us with posts. I think I would be safe in saying that most, if not all, of us have been scared and frustrated not knowing a name for our problem. Naming the beast is the first step in controlling it. Hang in there. Looking forward to hearing from you with a progress report.
    Leon
     
  15. saltlesstears

    saltlesstears New Member

    hello Debbie and Welcome.

    Hope you get some good news soon. THis diagnosis takes time and it can change. Hang in there.

    Best of luck and kind wishes!- Yvonne
     
  16. thornapple

    thornapple New Member

    One of the most frustrating things about vestibular disorders is that tests can show nothing amiss, and of course, you look perfectly normal. Nobody can hear the screaming tinnitus or know how nauseated and tired you feel all the time; nobody else can feel the "earth move". Nobody else can hear the distorted sounds, or understand that you cannot hear what people are saying even if your hearing tests "normal". Even doctors, who should know better, will accuse one of malingering or a vivid imagination.

    But don't let them. Stand firm, and insist that you get the help you need.

    I have had this off and on for decades until it has become chronic. Now they are saying it is vestibular migraine, so that is at least helpful; now there is something to treat. I know it's frustrating after a year and a half not to have answers, but it took me over six years of chronic problems to actually get an accurate diagnosis. And I went through three GPs, four ENTs, an otoneurologist, and a neurologist. So I guess the point is---don't let the buggers get you down. And guess what? Vestibular disorders make you anxious. So do mitral valve problems. It comes with the conditions, and I have both conditions. Ya think I might have some anxiety?

    Don't let them blow you off.

    And the anxiety makes the vestibular disorder worse, so while you don't let them tell you it's all due to anxiety, get some help for that, too. It may ease your symptoms. Anxiety is a legit problem they can help you with. Take the help and thank them. But stand firm on getting to the bottom of the vestibular problem as well.

    All the docs I have been to have tried to help me to the best of their ability, but these things are very very difficult to diagnose and treat. It helps to understand their dilemma. They can't document anything wrong, and they only have your word for it that you have a problem. IT DOESN'T MEAN YOU DON'T HAVE A PROBLEM. Stay grounded, and don't give up.

    By the way, I have trouble swallowing, too. Some of it seems due to reflux disease, but some may be due to anxiety; and I don't rule anything out, because I get spasms in the back of my neck when I have trouble swallowing. It could be something else, who knows...it could be related to migraine. I'll find out and let you know.

    Do you get migraine headaches or symptoms?
     
  17. old timer

    old timer Guest

    If you do have meniere's, it's not necessarily the end of the world. For some of us, Meniere's can be managed. I think it affects us all differently and because we are individuals that react to circumstances in all sorts of ways, we are going to have different experiences with Meniere's.

    I have had this for 9 years and can say with all honesty that I am managing quite fine, now. I didn't always manage. I look back and think I was my own worst enemy. I have the odd day where I am having vertigo and must remain bed ridden until it passes. I have way more good days than bad. I have learned to accept the vertigo when it hits, I don't fight it or rail against it anymore and now it doesn't seem as bad as it used to. I tell you this so that you will know that some of us can live relatively good lives in spite of the hearing loss, tinnitus and vertigo. If you do have meniere's, do everything in your power to manage the symptoms so that they don't manage you. Good luck!
     
  18. Linda1002

    Linda1002 New Member

    Ditto!
     
  19. VickiS

    VickiS New Member

    Hello, until you can get a definite diagnosis (if at all....) do a search on this forum and on the internet for MAV, which stands for Migraine Associated Vertigo. This causes dizziness and many other symptons you describe but usually without typical headache pain.

    It is treatable with medication and some diet changes.

    I have MAV which took many years to get diagnosed. There's no set tests you can have for it, it's mostly a process of elimination by various specialists.
     
  20. tucker

    tucker The Meniere's DVD Guy!

    welcome Debbie

    Tuck
     

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