New Posts  All Forums:Forum Nav:

Dealing with Meniere’s disease

post #1 of 4
Thread Starter 

I lost the hearing in my left ear November 1st and felt really crappy all of November, December and January. Underwent an MRI in December to rule out nasty stuff, like a tumor (acoustic neuroma). All of this time I experienced intermittent light headedness and fullness in my ear. In February, I had my first episode of severe vertigo while driving to Golden for a ski weekend. It seemed like there was nowhere to pull over while going down the mountain pass as the whole world was spinning, and then I puked for three hours once to the motel. Had three more “bad” episodes across the next few months. One episode that occurred when going for a run with my daughter was so severe that I fell several times and could not walk straight. Scared my daughter but she was a trouper and got me home. Each of these episodes lasts 2 to 3 hours, and includes severe nausea and puking. After the bad episodes, I feel “beat up” for a day or two.

 

So far, I’ve been able to continue skiing and biking, but have had to take an occasional day off when feeling the “warning signs” that an episode might be coming on, which occurs about every week or two. That is, I have mild episodes fairly often that do not get “bad”, and have been able to continue skiing or biking with some negative effects such as poorer balance and generally poorer performance. However, I always have the potential of bad episodes and of being incapacitated in the back of my mind, especially when going into the backcountry, either biking or skiing, or when planning a big trip, like biking the French Alps this summer. BC skiing, in particular, is a concern because an episode could place me or my friends at more serious risk, especially on multiday trips.

 

On the continuum of Meniere’s, so far my symptoms are not horribly severe (some people can’t get out of their house and have vertigo throughout most days), but my symptoms are not mild either. There is not any treatment, although I seem to be able to influence my symptoms by avoiding salt, caffeine and alcohol. I also manage my reaction to having to deal with this by appreciating what I can do (I think that I’ve gotten more competitive).

 

Anyway, this sort of feels like a whine session and that is not my intention. I’d like to know if others have had to deal with this disease and also try to maintain an active lifestyle? How to find the balance between safety and participation? By the way, I have communicated to my skiing and riding friends about these issues, and for the most part, they have been supportive and understanding when I elect to no do a trip, and watchful when I choose to go on a trip when I have mild symptoms.

post #2 of 4

My sister has it, and in her case, it's thought to be associated with her M.S., although she is quite high functioning.  She's stubborn and simply lives life just about as actively as she did before.  The low-grade MS is more physically limiting for her than the Meniere's.  Your degree of Meniere's sounds similar to hers.  

 

That said, attacks clearly suck for her and are truly incapacitating.  I suspect her advice would be to plan activities that you typically would anyway, but have an immediate "out" available in order to recover from a sudden attack.  For expensive trips, trip insurance is your friend.

 

In the past, she's been generous about discussing her experience with others who are recently diagnosed and asking questions similar to yours...even with people she's never met.  If you want, I can ask her if she would be willing to share her experience with Meniere's with you and PM you if she is.

post #3 of 4

My friend and colleague has been diagnosed with that and had a season of episodes like the one you described including being hospitalized a couple times. It was all pretty scary. He had some treatments and tried some lifestyle changes involving diet, some visual things like computer use, but my sense is he got better on his own. He's living a very normal and active life now, a couple years down the line, running marathons, etc. Hope this helps. 

post #4 of 4
Quote:
Originally Posted by prickly View Post

My friend and colleague has been diagnosed with that and had a season of episodes like the one you described including being hospitalized a couple times. It was all pretty scary. He had some treatments and tried some lifestyle changes involving diet, some visual things like computer use, but my sense is he got better on his own. He's living a very normal and active life now, a couple years down the line, running marathons, etc. Hope this helps. 

This sounds very similar to my sister-in-law; I'm not sure of everything she did, but I know at first there were definitely dietary changes. She too has it way under control, I almost forget about it now.

New Posts  All Forums:Forum Nav: