Being Bionic

Welcome to my LVAS and Meniere’s Disease page. I have dedicated this page to educating those who visit my site about these little-known diseases to the best of my knowledge.

Please Note:

When I first wrote this article, it was believed that the set of symptoms I suffered was Meniere’s Disease. However, at the beginning of 2004, CAT scans were done of both my ears as preparations for a Cochlear Implant. It was then found by my doctor that I have a birth defect in both inner ears called Large Vestibular Aqueduct, or LVA. Since then, I have learned that this has been the cause for all of my problems and is known as Large Vestibular Aqueduct Syndrome, or LVAS, and that I do not have Meniere’s Disease.

My doctor explained that the symptoms and problems associated with LVAS are very similar to those for Meniere’s Disease with a few minor differences, and that is why I was misdiagnosed as a child, since my birth defect hadn’t been discovered yet. Both conditions are headquartered in the same area of the inner ear, but they are different mechanisms. It has been said that the difference between the two is that LVAS has physical evidence and Meniere’s Disease doesn’t. Neither condition has a cure.

From talking with others with both conditions, I have come to the conclusion that the story below is still relevant for those with either condition, and people with these two conditions deal with very similar struggles in life. So nothing has changed for me personally, my symptoms just now have a different name, and a much better understanding and explanation of how it has made me so sick all my life. I also learned an interesting fact from my doctor, that only one in 10,000 people have Meniere’s Disease and only one in 10,000 people have LVAS. So it is not surprising that it is not very well known.

The following was written before I was implanted with Cochlear Implants in both ears. However, at this point in time, the implants have not affected the LVAS except for maybe making it a little better, so this page is still relevant.

My Story

I remember my first attack. I was only four years old, but I remember it as if it were yesterday.
I was walking down the hallway to my mom, who was standing in the kitchen, when all of a sudden, I couldn’t see. Everything was swimming around me, like I was on a Merry-Go-Round gone horribly wrong. Before I knew what had happened, I was flat on my back on the floor. I cried and cried in fear, I had no idea what was going on, only that I couldn’t move, couldn’t see, I felt so very sick.

I don’t remember much after that. I vaguely remember going to the doctors, and all the tests they had run on me. But I DO remember constantly struggling with sudden bouts of nausea/vomiting, dizziness, lack of balance, pressure in the ear, lightheadedness and the general ill feelings that accompanied the attacks, which came so often over the course of my life, and still do.

It was shortly after my first attack at age 4 that it was determined that I had progressive hearing loss, and ended up using hearing aids in both ears. My hearing continued to worsen over the next few years, gradually. The cause of my hearing loss was, and still is, unknown, but the doctors guessed that I was born with it. It is also suspected that the Meniere’s Disease may have caused it.

When I was 9 years old, I fell and had and attack which left me unable to attend school for three months. This is when I was diagnosed with Meniere’s disease, and it was determined that I had been suffering from it since age 4. It was also in this year of 1989 that I had an endolymphatic shunt surgery, which I was told would “make me feel better”. It was supposed to stop the dizziness, and to a degree, it did, but only in my vision. My eyes were no longer blurry or dizzy or jolted during an attack, but I still FELT the dizziness, and all the other symptoms were still present. I didn’t feel the surgery helped much.

Then, I fell and hit my head again; only this time I heard a loud pop and lots of ringing. I couldn’t hear anything else; my ears were ringing so badly! Only, at the time I didn’t know it, but I had lost every bit of hearing I had from that fall. It never came back, except for very little in my left ear. I now only wear a hearing aid in that ear, and with the hearing aid, I only have 20 to 30 percent hearing.

I continued to suffer attacks often, but they seemed to lessen in frequency and severity over time. By the time I was a junior in High School, I was able to attend school without missing as many days due to attacks as I had previously. I only had attacks maybe once a month to once every 3 months. The attacks only consisted of tinnititus (ringing in the ears), dizziness, pressure in the ear, lightheadedness and nausea, and occasional vomiting.

By the time I graduated high school I was pretty normal. I didn’t struggle much with Meniere’s Disease as much anymore, I had a full-time job as a veterinary assistant, and was attending college full-time as well. Then I got married, and worked in a warehouse pulling orders for Hobby Lobby stores. I was enjoying life to the fullest. Then in December of 1999, I lost that job due to missed days because of an injury. I decided to take a month off to enjoy life for a bit before working again, since we were going to travel that February for my brother-in-law’s wedding.

In February, I joined my husband and his family on a long car trip from Oklahoma City, Oklahoma to Huntington Beach, California. We were gone for a little over a week. While we were in California, my husband became very ill with a mystery illness that left him with vomiting among other things for an entire night. It only lasted for 24 hours, thank goodness. We figured there was something in the water or maybe he caught a bug from someone.

On our way back home, we stopped for the night in a little desolate town in the Arizona desert. I became very ill that evening, as my husband was only a day or two before. We thought that I must have caught the bug from him, and it left me with vomiting also. But, unfortunately, I was unbearably dizzy as well as a few other symptoms that my husband didn’t have. And mine didn’t stop. It got so bad, that by the following morning, I had vomited so much I was now dry heaving or vomiting bile every minute and couldn’t stop. I was getting worse, and much more miserable. I knew something was very very wrong and I wasn’t going to get over it like my husband did. I begged him to take me to the hospital. He resisted at first, confidant that I would get over it soon, and not wanting to inconvenience his family by messing up their plans. But finally I got him to agree, and he asked his father to drive us to the hospital, which seemed to be miles and miles away. He had to carry me out of the hotel; I couldn’t even walk because I was so weak.

At the hospital, they ran every test possible and didn’t find a single thing wrong that could be causing my illness, not even an infection or virus of some kind. They gave me medicine to help me not be nauseated, but it only worked for a short time and they couldn’t give me anymore after a while. I was severely dehydrated. So finally they put an IV in me to replace the fluids in my body, and sedated me. I started to feel better once I was able to keep some food down, although I was still very weak. It was obvious my body was in serious disrepair and needed a chance to recover, so the doctor recommended that I stay another day in the hospital before continuing the road trip back home to Oklahoma. I begged my husband to allow me to do this, because I knew I would not do well in a long road trip through the desert after everything I had just gone through, but to no avail. He did not want to inconvenience his family, and I had already held up his mother by several hours off the schedule by now. His father and brother had already left to continue the trip back home that morning. So, they packed me up in the car, and it was a miserable trip back home.

That was the worst attack of my life, and I haven’t been the same since. I didn’t realize it at the time, because it seemed too horrible to be an attack, but it was. I haven’t been able to hold a job for more than a few days since that happened, due to being too sick to make it to work. I have an attack everyday, if not several. They vary greatly in the severity, duration and number of symptoms present. Now, not only do I suffer from tinnititus, dizziness, pressure of the ears, lightheadedness, and nausea/vomiting, there’s a whole new boatload of problems that I have. Other symptoms include fatigue, weakness, and temporary “brain fog” which consists of forgetfulness and inability to focus, hot/cold flashes, shortness of breath, blurred or spotty vision, and my arms and legs falling asleep. I may only have one symptom during an attack and I may have several at once. The attacks usually last 30 minutes, an hour, or a whole day. Sometimes they last several days or a week. All I know, is when I’m having an attack, I feel awful.

Now for the technical stuff: Meniere’s disease is not contagious. It is a vestibular disorder, which means it’s in the inner ears. It’s still being researched in medical fields, and there is no cure, and only occasionally relief. Everyone with Meniere’s disease is different, and they suffer different symptoms. Mine is one of the more rare and severe cases of Meniere’s disease. It can vary greatly from just being an annoyance to being debilitating. Attacks can come at random, or can be brought on by triggers. Triggers can be just about anything, and vary from person to person. My triggers are injuries to the head, physical and emotional stress, certain foods, such as any kind of grain, potatoes, or other particular food, and certain sounds, particular loud and droning sounds such as a vacuum cleaner, or a computer humming. I’ve even had situations in which certain kinds of lighting (usually fluorescent), smells, or sights triggered an attack. Riding in a car for too long can trigger one too.

Meniere’s Disease can hit a plateau, in which it doesn’t get any worse, or it can continue to worsen as time goes on. Meniere’s Disease can hit at any stage of life, although most often it hits during adulthood. It can be caused by disease, injury to the head, or other unknown factors. One can be born with it, or one can acquire it very late in life. Attacks come randomly, and are not easily controlled, nor easily relieved. One may have an attack only once a year, once a month, or once a day. One may only feel ill during attacks, or they may feel generally ill in between attacks as well.

Although I have been told I have one of the more severe cases, there are still people who suffer worse than I do. However, from what I have gathered from talking to others with Meniere’s Disease, I believe the majority of people with Meniere’s Disease don’t suffer nearly as much, fortunately. The people with severe cases like mine are a very small percentage.

Life with Meniere’s Disease is very hard, especially for those with severe cases. It is difficult for the person with the disease, but it is also difficult for those that love them. When someone with Meniere’s is suffering through an attack, so are their loved ones suffering by watching them go through it. Many people with Meniere’s feel that life isn’t worth living this way. Living with Meniere’s Disease can bring on a variety of emotional, psychiatric, or psychological problems, such as depression, anxiety, suicidal tendencies, anger, bitterness, and many others. Many times, these problems in turn trigger more attacks, and it’s a vicious cycle that is very hard to break.

It causes breakups and losses of friends, lovers, and families. It can often prevent the person with the disease from enjoying life as their peers do, unable to participate in many activities so vital to their well-being. They can only wistfully watch from the sidelines. Many times, it takes everything they have just to make it through the day-to-day activities, such as sleeping, eating, showering, dressing, and paying the bills.

Worst of all, the disease is not very well known, and because of this others often think that someone with Meniere’s Disease is “making it up”. There is very little support to be found for someone suffering Meniere’s Disease. Worse yet, there are very few doctors that know of it well enough to help those suffering from it. Many people, including myself, cannot work because of it, but can’t get social security disability either, because it’s so misunderstood. People with Meniere’s can feel as though they are trapped all alone in a never-ending hell, and most people either don’t understand or don’t believe them. Caring, understanding, and support mean so much.

This is my reason for sharing my story. I hope to educate as many people as I can about Meniere’s Disease, to further raise awareness and pave the way for others who suffer from it as well. It is my hope that one day Meniere’s Disease will become very well-known, and life for those who suffer from it will be easier, since those around them would be more understanding. Perhaps there will even be foundations built and funds created for the research of Meniere’s Disease, and someday, a cure.

LVAS and Meniere’s Disease Links

http://oto.wustl.edu/men/ – Detailed Information about Meniere’s Disease

http://www.vestibular.org/menieres.html – Brief overview of Meniere’s Diseasewww.menieres-disease.ca/ – Lots of information about Meniere’s Disease

http://www.menieres.org/ – Coping support site for Meniere’s Disease

http://www.med.umn.edu/otol/library/menieres.htm – Information about Meniere’s Disease

http://www.menieresinfo.com/ – Information about Meniere’s Disease. A little hard to navigate, but full of information.

http://www.earsurgery.org/meniere.html – More information about Meniere’s Disease

http://www.theearfound.com/ – Another Meniere’s Disease coping site

http://www.hearinglosshelp.com/articles/lvas.htm- Lots of information about LVAS