So yea, I have it.
Unless you have Ménière’s you won’t know what it is. It’s not common and is very confusing. Wikipedia can explain it a lot better than I can.
To make the story short and sweet: I was diagnosed with Ménière’s disease in February 2001. I was 14, almost 15. I suffered for about a year and then I stopped experiencing symptoms and thought I was over it. Fast forward to November 2009 when I got what I thought was just a extremely bad ear infection. Two months later I started having classic Ménière’s disease symptoms again. Oh joy. To rule out infection I was put on antibiotics for a month. No relief.
Monday night my mom and I drove to Memphis for a Tuesday morning appointment at The Shea Clinic which ended up lasting all the live long day. 9:10am to 3:15pm to be exact. They ran a total of 5 tests on me, sticking tubes and ear buds in my ears and electrodes on my head. It was interesting to say the least but all of those tests and their results were explained in great detail to me by Dr. Paul Shea at the end of the appointment.
This is what it boils down to:
- All the results show that I have mild to moderate Ménière’s disease.
- To the doctor’s knowledge, I am the youngest to have ever been diagnosed (at age 14) with Ménière’s disease.
- I have 88% hearing in my left ear (which is the ear that I have Ménière’s disease in) and 96% in my right. With most Ménière’s disease cases it usually starts out in one ear and over time spreads to the other ear. I am not yet completely bilateral but I can tell, it won’t be long.
- I will have to get hearing aids some point in the future for my left ear for sure because even with treatment I will never regain any of that lost hearing and my hearing will progressively get worse. Yay.
- Dr. Paul Shea wants me to have a procedure done where they sedate me, cut a tiny hole in my ear drum with a laser, and inject a cocktail of drugs into my middle ear that will be absorbed into my inner ear. These injections are given in three rounds in three days. He wants me to have this done as soon as possible because yet again I am so young and already at stage 2 of 4.
- I have to make a huge lifestyle change: a low sodium diet. Salt/sodium makes you retain water/fluid and the basis of Ménière’s disease is the retention of fluid in the endo-lymphatic sac in the inner ear. So, I will be on this diet for the rest of my life.
- I also have to take a diuretic for the rest of my life. This drug will decrease the amount of fluid my body retains and in turn make me have to pee like every hour so. I’m not kidding.
I don’t know if you are aware of this or not but everything, and I mean EVERYTHING, has salt in it. In fact, more food than you could ever imagine actually has medium to high salt content.
Do you understand what this means?
No fast food.
No eating out period really.
No processed foods.
Well then, what CAN I eat? Fruits, veggies, and everything else has to be homemade so I can control the amount of salt in the foods.
You think I’m exaggerating? Believe me, I wish I were.
Not only can I eat hardly anything but what I do eat I have to be SO CONSCIOUS about. You think counting carbs is hard? Try counting sodium and staying between 1,500 mg and 2,000 mg when EVERYTHING has sodium in it! I didn’t realize this until now either.
Earlier tonight, while talking to my mom on the phone, I was reporting in to her (it’s great that she’s a dietitian!) what I’ve eaten today and how much sodium each item contained and I mentioned in passing “I don’t think I can keep this up for long”. My mom’s reply? “Well, do you want to go completely deaf?”
Uh no. I don’t.