Sunday, May 29, 2011

How do you explain Meniere’s disease?

I really dread having to try to give a definition of what Meniere’s disease is or at least say it in a way that doesn’t sound too confusing. Like most of you I had never heard of it before I was diagnosed with it so it is relatively new to me too.  The bad part is that at times you have to talk about it, especially with family, friends and anyone that might have seen you have an attack.
As many of you know I have applied for social security disability and that has brought on more than a few conversations about what exactly happens to you during a meniere’s attack and what are your restrictions because of this disorder.  Folks will look at you when you aren’t in the middle of an attack and think that there is nothing wrong with you.  They don’t often realize how bad an attack is till they see one. Usually that’s all it takes to understand the severity of this disorder.
After you explain about the spinning, vomiting and being worn out for a few days, you will probably hear the question, “what’s the cure?”  And you tell them there isn’t any, which is still baffling to me and other Meniere’s disease sufferers as to why there isn’t a cure.  There is a cure for vertigo, why not one for Meniere’s disease?  Hopefully with all the research going on that will change in a few years.
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  1. I think the understanding about this disease has more to do with what age we are. My family has always been understanding and concerned about what I have been going through for the past 2 yrs. And the friends I have seem to know someone who has suffered with Menieres or they have had had some form of it themselves. I think it is hard to understand someone in their early twenties and into their 30's having this and also when I was younger I had never heard of Menieres. And I think what makes it even more difficult, is our doctors can't even give us satisfactory answers and solutions most of the time. When the medical community doesn't even understand it any better than they do, then I can understand why everyone else struggles with it. But the internet has really been the best support I have found since being diagnosed two years ago. I haven't commented in a while, We lost our oldest son,(age 39) to liver cancer in Feb. and I know there are worse things than Menieres to deal with in life now. But I am still free from vertigo attacks with the Mucinex. I know the heat we are having in Georgia will not be easy to deal with this summer, hope have a good summer, and stay well.

  2. Sherry, I'm so sorry to hear about your son. And you are right that something like cancer puts Meniere's in a different perspective. But I don't believe you should compare the two, even though it's hard not to. What you are going through with Meniere's is real, and it's painful. It turns lives upside down, sometimes literally.

    I think the only people who truly "get it" about Meniere's are those who have seen an attack in someone they are close to. I think of it in much the same way I think about a condition like epilepsy... unless someone has a seizure, you wouldn't know they have it.

    Also, as with any other disease, information has to be distributed for people to understand, and Meniere's is uncommon enough that a lot of people have still never heard of it.

    It's an uphill battle. I wish more doctors and researchers were working on this, but because it's not fatal and because there are no magic drugs that a pharma company can get rich developing to treat it, it is largely ignored by the medical community except for ENT specialists. If more was known, and the pharmaceutical companies would put some research into finding medications that would genuinely control this, a lot of people would feel much better.

    Good luck with the heat and humidity. Even in New Jersey, I'm already more dizzy because of the rain we've had lately and the heat that followed it.

    Again, my condolences on the loss of your son. I'm so, so sorry.

  3. This made me think of the time when my Meniere's started and I was in a relationship. Mostly the attacks happened at home and I would just say I was feeling unwell and needed to go to bed. I'd stay there until I was able to move around reasonably well again (at that time between 8-24 hours later).

    One time I was out at a conference when the attack came on. After spending two hours in the toilets I called a friend to pick me up. He drove me home (not a comfortable ride I can assure you!) and my girlfriend was at home when we arrived. Seeing me shuffle up to the door, supported by my friend and not being able to do anything with my head apart from stare down at the ground, she said I looked like a different person.

    Another time she had a dizzy spell one morning, probably something to do with blood sugar. She said "I couldn't live like this", and I think she was a bit shocked when I said it could be like that a lot of the time with Meniere's.

  4. Jeff, it must be a really sobering moment to see someone have one of these attacks. I had my first "drop attack" in front of my husband, mother, brother, sister-in-law, and nephew. They knew I had the disease, but until that moment none of them knew the full extent of what that meant for me.

    It was a heck of a shock for me, too. I'd never before seen trees and furniture jump up and down like mad things. Thank goodness my husband and family have stood by me throughout it all.

  5. When I describe Meniere's to someone, I tell them there is retention of fluid in the tissues of my inner ear- much like swelling of a sprained ankle. Then I tell them it creates multiple symptoms but the best way for them to relate is much like a ride on the tilt-a-whirl with severe motion sickness. Most people have instantly gave me an empathetic look. These are usually friends and coworkers- who have seen me have an attack. My family, however, seems to be less responsive to the severity of the disease and are not as supportive. I've been asked by people young and old, it depends on whether the person is willing to listen if they are going to understand MD basics.

  6. I find it VERY difficult to explain to people about Meniere's,(even the Doctor's!) and have them understand the full scope of what we go through.
    I think most can only imagine bad dizziness..not violent rotational vertigo.
    Add to that the feeling of extreme "fullness" and pain in the ears,squeezing headache,loud tinnitus roaring away at you,feeling freezing cold-then burning hot, sweat pouring off of you, your eyes jerking back and forth...and it is incomprehensible.
    During some of my worst attacks I honestly questioned if I would live through it w/out having a heart attack.
    I do have & experience Meniere's and still can't believe it or fully describe the horror.
    Sometimes I feel like it's probably the closest one can come to a fully conscious seizure.
    My worst attacks ( before surgery) were that bad, and would last for 5 hours.
    Until Valium! That could shorten it to 2 or 3 hours if I could take it fast enough before I began throwing up.
    Hopefully someday there will be more help for Meniere's sufferers..or at least a well set-up network for support.
    Thanks to you David for providing an excellent Menier's blog for us all!

  7. Lauri, your description nearly brought me to tears, it was so accurate. And I wish so desperately that someone would provide more real help or support. It's a terribly thing to go through alone.

    Thank goodness for this blog.:)

  8. "Sometimes I feel like it's probably the closest one can come to a fully conscious seizure"

    This is the best description i've heard yet. I went into work late this morning due to having trouble getting going because of dizziness and a headache/fullness on the left side of my head. As I was walking into the building, the surreal feeling of dullness and lack of concentration led me to start wondering if this is how people feel after a seizure.

    It was just interesting to me that I was thinking about the possibility of comparing it to the after affects of a seizure this morning, and then I log on here and find someone else describing it the same way.

  9. Lari,
    Bless your heart. I think I will begin quoting you from now on " it's probably the closest one can come to a fully conscious seizure." That is hence forth my description of MD to everyone who is exhausting me asking what's wrong with my ears.

    Is it just me or does everyone have at least a dozen folks who ask what MD is every time you see them??

  10. Oh, I resolved that problem. I started a blog on a local message board, and nearly all my friends participate on that board. I've chronicled every step of my MD journey, so none of my friends have any excuse for not know what it is and what the symptoms are. ;-)

    However, that didn't help with my last employers, who didn't get it, didn't WANT to get it, and didn't want to continue employing me when they realized I couldn't keep up the pace they demanded. *sigh*

    It's not easy.

    1. PEGGY .. I feel your pain when it comes to work ... I know my boss doesn't CARE to get it ... I come in everyday spinning ,, off balance ,, sick to my stomach and have never missed a day at work and give a wonderful service to boot and I ask him to please book me accordingly with spaces .. I cut hair .. working for him 12 years ... im a 1099 ,, so technicly am also my own business and he thinks I read to much !!!!!!! another words im CREATING MY SYMPTOMS IN MY HEAD .. if only he could be in my head for ten minutes .. he would give me a metal !!!!!THANKYOU FOR LETING ME VENT XO

  11. Hello everyone .. I feel for all of you .. I was diagnose 2 years ago with ,MD .. however it was by my regular medical doctor ruling out everything else .. ms ,, brain tumor etc ...I do not get drop attacks and I don't have any hearing loss however I have a constant dizzy foggy brain feeling all day everyday .. depending on how much I do that day can trigger a BAD DAY . WEATHER FOR SURE EFFECTS ME .. storms etc . going into bright loud stores such as home depot can send me in a spinning motion to were all concentration is taken .. sometimes trying to pick out a simple greeting card is too much .. being a mom of 2 small kids at age 42 this disease has come at the worst time .. as kids are ALL nonstop LOUD and continual motion .. it pains me that simple things like keeping an eye on them at the park can make me wanna vomit ;( so my question is can you have md without ever having a drop attack ? I have walked into walls being off balance but never the drop attacks people speak of .... sorry if this seems as a rant im just at wits end ...

    1. hello anon
      not having hearing loss and having md is not the norm.
      check the crystals in your ears
      also check for migraines
      manage your stress, do tai chi

    2. You are new to MD. I didn't have them until nearly 8 year into it. How do you not have hearing loss?
      MD is hearing loss (low tones first), tinnitus, aural fullness, and vertigo.

      Go to a neurotologist or good ENT with an Allergist. That's where I would start....good luck!

  12. Anonymous, you can absolutely have MD without drop attacks, but I'm not sure it's really MD if you don't have any hearing loss. That's one of the essential symptoms, from all I've read.

    The rest of what you describe sounds very familiar to me. I have come to hate shopping of any kind, because of the bright lights and constant movement of the head as I look back and forth at merchandise. Home Depot is horrible for me now. Loud noises bother me enormously, too, and if I'm in a loud environment I can't tell what anyone is saying.

    It's awful. Even now, several years after the labyrinthectomy surgery, I feel far from normal. I don't have full-fledged attacks, but I am dizzy most of the time, especially if the weather is bad. Recently we have been preparing to sell our house and buy a new one in CT to be near my mother, and dealing with that stress has confirmed for me that I'm not able to go back to a full-time job yet. Maybe not ever.

    What does your doctor say? I hope after two years of this you are trying some of the classic treatments and getting SOME relief. You should probably see an ear/nose/throat specialist, if you haven't already done so.