Sunday, May 3, 2009

Keeping your hope up with Meniere’s disease

When I had my first meniere’s attack I couldn’t believe that I could be so out of control of my body. I also couldn’t believe that it was happening to me. I was in a car accident, not a bad accident someone hit me from behind. I believe that was the cause of my MM. I know that the doctors that I have seen don’t necessarily agree with that, who knows it could be something else. I thought that it would just go away and everything would be okay.

But the worse was to come.

As I explained in many of my posts my attacks got worse and more numerous. As all this was going on my emotional state was taking a dive. I knew there was no cure and the thought that the rest of my life was going to be this way scared me. How can I live like this?

And it wasn’t any picnic for my family either. My wife was scared that I was going to hurt myself by falling or by being in a car wreck. My son who was 4 at the time didn’t know what to think seeing his father in the emergency room or seeing his father throwing up violently at home.

I had to get in the right mind set about MM and how it was controling my life. Instead of accepting that thing were always going to be this way, I decided that I would go from doctor to doctor until I got some relief. And after 5 years I think I have. But if I get another round of bad attacks I will be back at the doctor’s office trying something, anything to control this awful illness.

I know that it is difficult, very difficult, but you must keep trying to control this thing. Don’t let it control you.

6 comments:

  1. David,
    I understand how MD takes over and takes away your quality of life. Just remember that you are still David, who happens to have MD and not be defined by your illness. My close friends were able to see past my illness and reminded me that I was still the same person that had an illness to deal with.
    Remember who you are and try to live your life as normally as you can for your own sanity and your loved ones.
    Best,
    Ray

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  2. Thanks Ray I appreciate the kind words.

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  3. I have just had my most severe attack ever. It lasted off and on for 2 days. I came out, and went right back into another attack. The second day was worse than the first as I lost total function of my arms and legs ... they were like rubber. This one sent me to the hospital to make sure there were no strokes. I constantly had dry heaves .... it was terrible. I am now at the point that I am afraid to go anywhere. I need to drive here and there and am just scared. I have noticed that they come on when I am in grocery stores.... I think it is while going down the isles, the peripheral vision sees items on the shelves passing by fast thus causing a vertigo effect. Maybe sounds crazy, but this is what I can see since the Meneires has been diagnosed. I was diagnosed about 10 years ago and the attacks get worse and worse. I have been afraid of the injections, but think I will go thru with them. I need some releif and to get back to being confident about myself. I also have ringing in the ears and have had epilepsy since '73. My epilepsy has been controlled, so hopefully the meneires will be too. Of course there are breakout seizures .. I had my first in 17 years. (wish the meneires attacks were that far between). Of course I was terminated from work because of it ... should have sued. I feel like there is a double whammy ... Meneires and epilepsy. Need to gain my confidence back. Thanks so much for your info and post.

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  4. I am so sorry to hear about your meniere's it sounds like one of the worse cases that I have read about. and to have epilepsy on top of that! I would definitely seek as many doctor's opinions as you can get, the more information the better. I has some success with gent injections, but everybody is different.
    I also hate to hear about the raw deal that you got at work. I don't think that it is legal to fire someone because of a disability.

    Good luck and please keep in touch
    David

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  5. The gentamycin injections are definitely worth trying. For me, it made the difference between having attacks and not having attacks. I have not had an all-out attack in probably four months now, since we began the injections. However, my balance is impaired, and I have mild to moderate dizziness 24/7. I'm not out of the woods yet, and I'm still afraid to drive long distances, but I don't have the same kind of attacks as before, with the extreme vertigo and nausea. Another thing to consider for the person who has epilepsy: Have you used diazepam (valium) for seizures? I have used it to cut short a Meniere's attack, and sometimes it works. You can't use it constantly, as it reaches a plateau and can be habit-forming, but it's very useful at times if you feel an attack coming on.

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  6. I hope that you have continued success with the gent injections. The good thing about them is that the side effects are minimal. You might lose a little hearing, but in my own case I didn't lose any.
    Valium seems to work for a lot of people, like you said it probably isn't a good idea to use it all the time.
    Stay in touch
    David

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