Meniere’s Disease – My Story
After many tests and some rest, the doctor said I had a bad case of Vertigo, which is basically a bad sensation of spinning or whirling. He gave me a prescription for a motion sickness patch and sent me on my way. For the next few days I wore that patch and felt drunk the entire time.
For the next 4 months, I was in and out of the hospital with severe and debilitating vertigo attacks. Along with that I also had a ringing and a fullness sensation in my ears. I lived in a constantly spinning and whirling world. I lost my job. I couldn’t drive. I became very depressed. For the most part I was unable to even get out of bed every morning. When I did get out of bed I had a really hard time walking or moving around. I fell over frequently but luckily never really hurt myself too bad.
During all of this the doctors simply kept filling me full of Valium and sending me on my way. The only time I felt normal was when I was sleeping. This affected my family and friends as well. They didn’t understand this anymore than I did. Unfortunately the doctors didn’t understand it very much either. I even had one doctor say that I was making everything up just to get attention.
It is terribly hard to actually put into words what I went through for those 4 months. It was the most miserable time of my life. I felt utterly useless. My husband and I began having marriage trouble. My daughter had no clue what was going on and was always wondering why mommy couldn’t do the things she used to do. My personality changed and I became a negative person. I didn’t know what to tell people when they asked what was wrong with me. Vertigo just didn’t cut it. There was so much more going on but I didn’t know what it was.
Then finally, one day after many tests and MRI’s to rule out other possibilities a doctor diagnosed me with Meniere’s Disease, which is a progressive but non-life threatening permanent condition. The cause is officially unknown but many researchers believe that the symptoms are caused by an imbalance in the fluid in one of the inner ear canals, but what causes the imbalance is unknown. There is no cure since it is hard to find a cure when there is no definitive cause.
There are four main conditions of typical Meniere’s Disease which are fluctuating hearing loss, fluctuating ringing in the ears called tinnitus, fluctuating vertigo and fluctuating aural fullness meaning feeling pressure in your ears when there really isn’t any. There are also two atypical forms in which the patient only experiences three of the four main conditions of typical Meniere’s Disease, however the fourth symptom almost always shows up later.
Meniere’s Disease is classified as an episodic disease meaning that patients experience attacks that fluctuate in severity and duration. This disease also affects each patient differently. Some, like me, may have severe vertigo attacks that last for days, weeks or even months, while other may only experience slight vertigo that lasts a few minutes but have a constant ringing in their ears.
Even though there are only four symptoms of Meniere’s Disease there are many consequences of those symptoms like nausea, vomiting, personality change, depression, memory loss, and forgetfulness to name a few. Not every patient experiences all of these consequences but it is common to experience at least two.
I experience the vertigo quite regularly and it usually takes me a full week to recover from the attack. I do have the ringing in my ears but those attacks are spread out much farther than the vertigo. I only feel the fullness occasionally and am now noticing the hearing loss.
I have constant nausea, forgetfulness and memory loss. When I am having a vertigo attack I have the personality change and depression. The four months I spent before being diagnosed actually sent me into a serious depression, which is now another thing I must struggle with every day.
Over the years I have done a lot of research about the disease since it is pretty unknown even by the doctors. I have learned to spot triggers that will bring on vertigo attacks and try to avoid those things. Even still the vertigo can hit with no rhyme or reason just like the other symptoms.
I have found out that here in Arizona people with Meniere’s Disease can not get a commercial drivers license since vertigo can happen without warning. I have been lucky enough to have never had a car accident because of this disease but many are not so lucky.
It is vitally important to learn your triggers and to be able to spot an attack before it hits big. You should also research Meniere’s Disease as much as you can. Keep in mind that information changes daily since this is a fairly unknown disease. Even though there is no cure or real treatment be sure to disclose the disease if you are getting Health Insurance. Most companies will write it off if you tell them but there could be penalties for not telling them.
The U.S. Social Security Administration has finally recognized Meniere’s Disease as a potentially disabling condition. It is possible to get on disability because of Meniere’s Disease but it is not easy and only the most severe cases will get accepted. It usually takes a minimum of two years to be considered for disability.
It is always best to try and find a treatment program that can work for you. There are many different approaches and you must seek to find the one that works best for you. It is a trial and error process but you must do it since you are going to be saddled with Meniere’s Disease for the rest of your life. It is not an easy disease to have and live with, but with over 4 million people in the U.S suffering from it you are not alone. There are a lot of Meniere’s Disease support groups that can be found with a quick search online or in your local phone book.
Most of all remember that you are the one who has to be in charge. The best way to get help is to speak up. Doctors are very busy, see way too many patients, and probably don’t know as much about Meniere’s Disease as you will after a little research. Be sure to get those multiple opinions. Don’t be afraid to ask for tests. Take charge of your disease and treatment.
Be sure to let the other people in your life know what Meniere’s Disease is and how it affects you. Learn together and you will have a built in support group. It is an ongoing education and I still struggle with it, as do my friends and family. I cherish every moment that I am not having an attack and then just accept the attacks when they come and let them run their course.
Most of the time, lying down and resting really helps the vertigo. When having a vertigo attack be sure to focus on one thing and one thing only. I actually usually fall asleep and when I awake the attack has calmed down. When looking for treatment options break down your symptoms and find treatments for those. I have centered my search for treatments around vertigo since that is my most persistent symptom. Try and try again until you have found a treatment that works for you.
Meniere’s Disease is not life threatening. It is not the end of the world. Yes, it is a struggle but with time and knowledge you can learn to live with it. Be patient with yourself and others as you all try to understand the disease you have. Don’t try to go it alone, because you don’t have to. Accept it, understand it, then do what you must to live with it.
