An Unexpected Diagnosis

My senses. I take them for granted sometimes. I open my eyes in the morning, and I expect to see the dawning light coming through my curtains. I fix my husband’s coffee, breathing in the first earthy smells as I grind the fresh beans. The early sun through the window feels warm on my face as I stand there watching the birds, listening to the news on the TV. My breakfast of fresh farm eggs and bacon with toast from fragrant, homemade bread tastes delicious. I just didn’t count on the damage to one sense affecting the others.

Four years ago, I noticed that sound was beginning to bother me. Things seemed unusually loud to me, and I was glad, because I thought, ‘at least I’m not losing my hearing!’ I reluctantly dropped out of singing with the band at church, because the level of sound was so uncomfortable. I  found I could sing in choir with little disturbance, so I kept that up. Since that is the only trouble I had, I thought no more of it.

Then in June of 2015, I began to feel great pressure in my head and in my right ear. Thinking it was a middle ear infection, my doctor prescribed antibiotics and antihistamines, and then a heavy dose of steroids. If anything, the pressure was worse. I began to feel a little dizzy, stumbling over my feet and losing my balance easily. After 4 months, my doctor sent me to an ENT.

After receiving the results from my hearing test, physical exam, and MRI, the doctor determined with certainty that I was suffering from Endolymphatic Hydrops, or Ménière’s disease, a rare disease with no known cause, and no cure.  A short way to think of it is that there is too much fluid in the cochlea, in the inner ear, NOT the middle ear. If the fluid fills the middle ear, it is usually from an infection and can be cleared with antibiotics or tubes, but the inner ear is harder to access and is difficult to drain. He said in all likelihood, I have had it for four years. He started me on a very low-sodium diet, no caffeine or chocolate (he said it was ok to eat a small piece of dark chocolate!),  one alcoholic drink at a time, no more than three per week (also easy, since I so rarely drink), and set me up for my next appointment.`

There was a learning curve in the beginning, and we did throw out some food because there was just no way to choke it down! I bought some low-sodium cookbooks to help me produce better-tasting meals. It took over two months for our tastebuds to become adjusted. My husband is very supportive and never complains as he eats all the same foods I do-he’s a gem! Salt is present in so many things, so I had to learn to read labels and steer clear of anything above 120mg sodium per serving, which is considered low-sodium. Most processed foods are out, so are nearly all fast foods, and I had to make nearly everything from scratch. I gave away many items in my pantry. I found a few canned foods

that have no salt added, and began to use a variety of salt-free seasonings like Mrs. Dash. To replace that piquant flavor that was missing, I learned to use more garlic or onion, more herbs, and citrus juices and vinegars.

I decided to look into this condition about which I had never heard. The U.S. site for Ménière’s information is http://www.vestibular.org. What I read showed me how blessed I was to have received such an early diagnosis, and I thank God for that. Ménière’s Disease, if left untreated, can literally spin out of control, quickly leading to the destruction of the affected ear, yielding continual severe vertigo and total deafness. I searched out others who also have it, and their symptoms vary. One has a cochlear implant after one year, and has continual vertigo. This strengthened my resolve to do all I could to get on top of this disease.

In spite of the restricted diet, I began to experience sudden attacks of severe vertigo myself. They were terrifying. I experienced severe, sudden loss of equilibrium, extreme nausea and shaking, and I broke out in cold sweats until they passed, anywhere from two minutes to thirty, with fatigue and mild dizziness for the remainder of the day. Some patients learn to recognize triggers and signs vertigo is coming, but I didn’t recognize any yet. I felt paranoid of going anywhere or doing anything, because I didn’t know when the next attack might occur. The thought of going up and down stairs was frightening, for fear I might spin out while on the stairs. My doctor told me of a woman whom he encouraged to move from her two-story house because of injuries she incurred from sudden attacks on her stairs. He added a fluid pill to further reduce the fluid in my right ear and asked me to consider avoiding the stairs if possible in my own home. We live on the first floor, but our wood stove is in the basement. I can go outside and go down a little hill in back to enter through the basement door instead of using the stairs, so for now, that’s an ok solution.

The addition of the fluid pill stopped the sudden and most severe attacks of vertigo; it has been a month and a half since my last spin-out. My hearing is restored, but damage was done from the excess fluid. I still have dizziness and pressure occasionally, and have come to notice some signs that fluid is increasing. Some triggers I recognize are weather changes, high-sodium foods, fatigue and lack of sleep, and dehydration. For me, it starts as too much pressure which leads to dizziness, then vertigo if I don’t act to reduce the pressure. When there is too much fluid in my ears, even my eyes become too sensitive to light, also a helpful sign. I sometimes have blurred vision and will ask the doctor about that at the next visit.

I  find I can no longer tolerate loud sounds. The sudden crash of dropped silverware by a waitress can produce a shock to my whole system. My heart races and I feel extreme panic; everything within me wants to escape it!  If the loud sound goes on for awhile, I develop a migraine that lasts a day or two. I fine that I can no longer attend worship at church, or sing in the choir. I have tried a number of professional earplugs with no success. I am further saddened; on my last visit to the ENT, it was discovered I now have the disease in both ears.

As it stands, I am only managing the disease. It is a progressive disease, one that has no happy ending. Since it has attacked the core of who I am as a musician for the Lord, it has been especially difficult. I can see no good in what is to come, nor in what has happened to others who suffer this disease. I know in my heart that my developing Ménière’s disease is no surprise to God, and that He can bring about good in my life in spite of being in its grip, but I just can’t see it. I am thankful I found an early diagnosis, and I will do all I personally can to forestall the changes that may come. In all the trials I have had in my life, I have learned to trust Him. So I trust Him with this, even if the future looks dismal. The rest is up to God. I just haven’t come to accept it.Yet.

 

 

 

 


					

5 thoughts on “An Unexpected Diagnosis

  1. Carolyn Phillips

    We can pray for a future cure for you. I’m so sorry this has happened to you. I imagine you feel trapped in your own body. What a frustrating disease especially for a vocalist.

    Reply
  2. Danis

    I’m so sorry dear friend!!! Hard to understand! I’ll be praying for you and I’m here if you need anything! Love you!

    Reply
  3. Jean R

    Janet, you know you are in my prayers for a complete healing.
    Thank you for sharing this. Your experience may very well help others to seek and find a diagnosis and to obtain early help. As with any unusual or rare disease, the more that people know, the more that can be done. Just the education is invaluable. And it encourages research and a search for better treatment and a cure.
    I’m sorry you have to suffer from this, but I thank God that your faith is in Him and in His plan for you!
    Much love,
    Jeanie

    Reply

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