Tuesday, May 31, 2011

Diagnosis: Meniere's Disease

At the end of March I got dizzy. Laying down seemed to help --- it almost made me feel normal again. About four days into this, I laid myself down on the living room floor and willed the phone to come to me. What is wrong with me?!?! After, several minutes I willed myself to the phone, which worked mildly better than the phone coming to me. I returned to my previous spot on the floor as I dialed my husband's cell. "I can't do this anymore," I wailed. He said to make a doctor's appointment and he'd be able to come home to take me. Relief! (Often, he's an hour away for work.) But, that meant I would now have to get the phone book. A doctor's visit was motivation enough to crawl myself back into the kitchen.

Fortunately, by the time of the appointment, the worst of it had passed. The doctor asked so many questions. Many seemed repetitive. One was if I had ringing in my ears. I said I didn't. Each time I turned to look at my husband, I would get nauseous again (poor guy : ). The doctor did a bunch of test in which I had to follow his finger with my eyes. Finally, he concluded that I had Vertigo and eventually it would just go away on it's own.

Vertigo, in very simple terms, is when some of the "gravel" in your ears gets out of its spot and ends up in different parts of your ear, causing you to feel unbalanced or dizzy.

So, he had me lay down with my head just hanging off the end of the table(?) and turned it just so. I stared at his fingertip until the dizziness went away. Then we repeated it on the other side.

When I stood back up --- I was BETTER! I wanted to laugh right out loud. It seemed so humorous that I spent 4 days at home trying to get over this, and then to lay down in the doctor's office and get immediate relief! Why had I waited so long? He told me that I could do that exercise at home and prescribed meclizine to help reduce the dizziness. Unfortunately, the medicine didn't seem to do much for me.

I was so happy to feel good again until it returned. I tried and tried to do that exercise on my own bed. My husband tried to help too, until I vomited. We just couldn't get it to work. He and his friend gave me a priesthood blessing of which I was very grateful for. I wanted to be told that I would heal quickly. Instead, I was told that this would bring me closer to the Lord and to not be ashamed to ask for help from members in our ward. Ok...

I spent the weekend lying down again. I did have good moments though, sometimes even a day or two where I almost felt back to normal. I managed to get through the next week well enough. Then it was suggested that I see a certain chiropractor. I did with the help of my visiting teacher who was so kind to drive me --- 3 times a week sometimes. The chiropractor would reset my ears. It helped a lot. Every now and then a little wave of dizziness would threaten worse to come, but it didn't and life seemed manageable. I felt sure the whole Vertigo thing was going away.

Then came the neck pain. Terrible neck pain. (I blamed it on the chiropractor.) Soon after that came the migraine, only on the left side, but constant, unless I laid on my back and kinked my head to the left just so, it would go away, then I felt well again, as long as I stayed in that position. Anyway, having the chiropractor move my neck around to reduce the dizziness didn't work very well anymore and the dizziness got worse again. The chiropractor prescribed muscle relaxers and pain killers for the migraine and sent me back to my doctor. Those two were now talking about me seeing a neurologist and having an MRI done. That scared me.

About that time, I realized that the high pitch beeps I'd hear in my ears from time to time is was "ringing" in the ears. I also noticed that that was happening more often. This is called Tinnitus. My chiropractor said that when you have Vertigo and Tinnitus as the same time, it is called Meniere's Disease.

And that's all he said about it. But, he, and the doctor and the neurologist, still wanted to have a couple MRIs done, one on my neck, one on my brain. Fortunately, the MRIs didn't find anything. Still, that was a miserable week. One good friend brought my children home from school several times. Another came to pick me up so that I wouldn't have to walk there in the rain. Thankfully, the ward brought dinner over 3 times one week. I felt extremely grateful that they cared enough to do that, but my husband said he could fix dinner (which he was, and doing wash, and cleaning the house, and sometimes even making breakfast, and going into work early so that he'd be back in time to pick up the kids when he could, and running me around). He stepped right up to what needed to be done and did a great job. I was so grateful for him. He needed a break! Even if he didn't think so, and I was so grateful that a prepared dinner would give him that break.

I feel guilty though --- letting people help so much. I did my best to walk down and pick up my kids from school when I could and it felt good to do that. One day, I felt a little off to start, but figured a walk would do me some good. We only had a couple houses to go before we would be back home when I got really dizzy. I had to yell at my son to run and catch up, but I couldn't wait, I was going to be sick. I don't know how, but I managed to make it to my own toilet. : )  I can't tell you how paranoid I was to do anything for a week after that, but I simply could not let my kids miss out on their life because of it. (Everywhere we went I would look for the nearest trashcan or bathroom, just in case... sometimes I'd carry plastic bags with me.) I so wanted to take care of my responsibilities. After all, I am healthy!!! I just have a little ear trouble that's causing a BIG mess.

One Thursday the dizziness came back and my chiropractor was not in his office. On Friday, I waited to go until my husband could take me after work. The office had closed at noon. Desperate to not spend the entire weekend in bed, my husband's grandma sent some exercises for Vertigo that her doctor gave her. They were the same ones I couldn't make work. Eli searched the internet for some new exercises and had me try some. No luck. Later, I tried one called Brandt-Daroff Exercises. It works! (At least most of the time.) I felt empowered that I no longer would have to rely on my chiropractor to make the dizziness go away!

So, to finish my story, I got medicine for the migraine and about the time things started to feel good again, the pain in my neck began on the opposite side. So, it was not the chiropractor who had caused the pain on the left side after all. I was aghast. I just could not start over with that pain again. Especially if it was going to mean another month or more of pain! I began taking the pain pills again and fortunately, I don't think it even lasted a whole week. That made me happy.

Last week was good. In fact, I felt good enough to get back on the internet and read! I could focus on words again! I could concentrate again! I love to research stuff on the internet and was finally able find out what it had to say about Meniere's Disease.

After reading many sites (finding the same information on multiple sites make the repetitive information more valid to me) I came across two sites that I like. One is by a man who tells about his personal experience with Meniere's Disease and the other is a compilation of easy to read facts.


Meniere's Disease -- An Overview

Meniere's disease is a disorder of the inner ear that can cause severe dizziness, vomiting, ringing in the ears, and can disable you for the better part of a day or more.  It is a non-fatal, non-curable condition.  Non-curable?  Well, think of it like having an allergy to something...  nothing they can do will make you no longer allergic to whatever it is you're allergic to...  but once you understand the fact that you do have this allergic condition, you can find ways to avoid triggering it.

My personal battle with Meniere's

...  I had a total of about a dozen severe attacks over six months or so.  During an attack I would get extremely dizzy within a matter of 5 or 10 minutes.  Sometimes I would begin vomiting.  During an attack I was too dizzy to walk or do anything except lie down.  ...   I usually still felt pretty lousy, or as Meniere's sufferers often say "out of sorts", for about a day after an attack.

The severe attacks … were triggered by the stress…

One frustrating aspect of dealing with Meniere's disease, or any inner-ear disorder, is that you don't generally LOOK sick to other people.  Your friends and co-workers may think you are making the whole thing up, or that you're a little crazy…

How I Beat Meniere's Disease

… An MRI of the brain and ear was performed to rule out the possibility of physical damage including a brain tumor…

One doctor … suggested I keep a log of my attacks.  I wrote down when they occurred, and anything unusual I had eaten or done in the day or two prior.  (He suspected I was reacting to salt in my diet.)  Once I did this, it became totally obvious that my attacks had nothing to do with food, and everything to do with stress and disturbances to my sleep schedule… (Hmmmm, I did notice I felt the worst when I was working, but seriously, I live fairly stress free, unless there's a deadline to meet... Logging my food? What a tedious and loathsome way to spend my day, however, it may help me keep the symptoms away, I should make a sincere effort --- especially being the mom of two little ones.)


Ménière's disease is a condition of the inner ear. About 1 in a 1,000 people develops Ménière's disease. … The disease is named after a French doctor called Prosper Ménière who first described the disease in the 1860s.

Symptoms that 'come and go'

Ménière's disease typically comes in attacks (episodes) of the following symptoms:
  • Dulled hearing in the affected ear(s). The degree of hearing loss varies.
  • Vertigo. This is dizziness with a spinning sensation. It can be quite severe and make you feel sick or vomit. Vertigo can develop with little or no warning. You may feel very dizzy and ill. You may need to go to bed until it passes.
  • Tinnitus. This is a noise such as a ringing, roaring, or buzzing noise which you can hear from inside the affected ear.
  • Ear pressure. You may get a sense of fullness or pressure inside the ear.
  • Loud noises may seem unpleasant and distorted.
An attack of Ménière's disease may last from 20 minutes to several hours. The average is 2-4 hours. Many people feel quite sleepy after an attack. Slight unsteadiness may last a day or so after an attack --- sometimes longer. (This helped me to understand what was happening.)

Attacks may be frequent, or occur only every few months or longer. Sometimes they come in clusters of several attacks in quick succession. For example, you may have an attack every couple of days or so for a week or so. Some attacks may be so close together that it may seem that one attack lasts for several days. On average, you may get 6-11 clusters a year. (Hopefully, I don't get cluster of attack 6-11 times per YEAR!)

An uncommon symptom is to have sudden unexplained falls (drop attacks). These are falls without losing consciousness. Drop attacks last just a short time with little associated vertigo. They occur in about 1 in 25 people with Ménière's disease. So, although uncommon, drop attacks can be alarming and potentially dangerous if, for example, you are driving or up a ladder when one occurs. (WAIT! What? At least this hasn't happened to me! Talk about making someone paranoid about going out. For the most part, I have a brief period of warning and I have not fallen at all. Whew!)

You may have long periods of time (months or years) between attacks (or clusters of attacks) when you have no symptoms. In about 7 in 10 people with Ménière's disease, the attacks stop altogether within 5-10 years of their starting. This is hopeful! : )

Symptoms that may become permanent

  • Hearing loss. During each attack the hearing loss is temporary at first….
  • Tinnitus. … often temporary at first … eventually becomes permanent in some cases. (and not so hopeful...)

What causes Ménière's disease?

It is thought that a build-up of fluid in the labyrinth from time to time causes the symptoms. The build-up of fluid may increase the pressure and cause swelling of the labyrinth. Also, fluid may leak between different parts of the labyrinth. These effects may cause the inner ear to send abnormal messages to the brain, which causes the dizziness and vomiting. (There's a longer explanation on their site, but I think this sums it up quickly.)

What is the outlook (prognosis)?

The way Ménière's disease affects people can vary greatly. At the outset of the disease, it is not possible to predict how badly it will affect an individual in the coming years. In many cases, months or years go by between attacks. In some cases the attacks are more frequent. Some attacks are minor and don't last long. Some attacks can be very distressing with severe vomiting and dizziness. However, treatments that can ease symptoms have improved in recent years.

There is a good chance that after a while (typically after 5-10 years) the attacks stop occurring altogether. However, you may have developed some permanent hearing loss or permanent tinnitus in the affected ear or ears by this time. This may be only a minor degree of hearing loss, but some people become deaf in the affected ear or ears. (So, I guess we just wait and see...)

So, I'm sure that's more than anyone cared to know. But, that's been my life pretty much for the last couple of months. I so desperately wanted to be done with it by the time school lets out for the summer and it looks like I may have my wish. And, just to note, I've found that a green veggie juice a day seems to reduce the pressure in my ears. One more incentive to eat better.