1.What coping skills have you come up with?
2.Do you take medication for it?
3.Do friends and Family support you?
4.How long do your spells last?
I have M茅ni猫re's Disease and have a wonderful support system at work as well as home. I am curious about how others get along. I was DX'd with Meniere's Disease in 1988. I have been lucky so far. I have had several bad spells, but each time friends and family have been understanding and have helped me get to a safe place to lay down, mainly home.
As to coping skills? I have done vestibular exercises, walk slowly and carefully if I feel "out of balance." Don't eat extra sodium on food, stay away from diet sodas and soda of any type. No caffinated drinks, including coffee and tea. I stay away from flashing lights and sudden moving objects, things etc.
I take the occassional Mecclazine or dramamine. Allergy tablets help a lot too, such as Benadryl or the Equate version.
I take extra vitamins and minerals, exercise daily, and make sure I get plenty of rest.
It has taken my family nearly fifteen years to accept my medical problem, since they have now seen me in a bad vertigo spin several times.
Friends have long accepted my limitaions and are willing to help when I need it.
My spells last anywhere from five minutes to a month or more, but on average about three days. They range from severe to moderately mild. I feel light headed a lot and have very little balance, although I am now working on that with a bicycle.
I am also a member of an online support group at yahoo groups.
My hearing is gone in one ear and is virtually nil in the other, so I have learned sign language and how to read lips a little.
Hope this answers your questions!
Good luck! I have not come up with any coping skills other than Meclizine which I take as soon as possible. Reducing the exposure to sounds/noise and light having my head face down & horizontal minimizes the intensity of the vertigo. I can at times feel the event coming on 5 to 15 minutes before the vertigo, cold sweats and nausea start. Other times it hits so fast that there's nothing I can do to prepare. One time while talking to a co-worker, it literally hit me in mid-sentence.
There's no consistency to the frequency of the attacks other than once I have one, I will usually have one or two more within a 10 to 14 day period and the first being the most intense. Over the last 5 or 6 years the duration of the attacks seems to have decreased but, that may be attributed to the Meclizine. Normal time frame runs about 1-1/2 to two hours of intense vertigo and then the coma sets in. Sweet, beautiful sleep- relief. The coma period varies from 10 to 16 hours and I feel hung over for a day or two afterwards
I am curious of how family and friends support you-you are truly blessed in that aspect. Over the years, when I was working and I had an attack there, it was extremly disruptive and nobody knew what to think of it and I felt at times that they thought I was a hypocondriac or drunk or on drugs. Living alone and no longer working now, I'm starting to have panic attacks at the onset. I have menieres disease. I finally reached burn out.
I used to have to go into a room by myself with the door closed and lights off to lay down while I waited for the episode to stop or for the antiverts to work.
I would wear cotton in my ears to help block out sounds that could trigger the rotational vertigo.
I found that keeping my eyes closed could sometimes stop a vertigo episode .
My case was severe, and I have come to learn that sometimes menieres is related to allergies. I am allergic to virtually everything. So I always suggest that people with menieres be allergy tested.
I was on a constant dose of meclizine. I havent had an episode in several years. (YAY ! ) I try not to worry about it becoming bi-lateral.
Friends? They abandoned me when I couldnt control what was happening to my body. I couldn't go to the places they went and they couldnt see my problem so they didnt understand. Its not like you have a part of your body fall off or something. Also my hearing became very bad and the ringing in my head was horrible. There is an odd thing that happens when things passing by your vision can cause you to have vertigo episodes also. Menieres is an unseen problem. Its rare and people dont have a clue how to deal with people who have it.
I had virtually no support from anyone. My husband saw me going through it but he was angry that I couldnt control it. My mother didnt realize how sick I was, and I think she didnt believe in how seriously sick I was. My children were very young, and it scared them to see mom like that.
As it progressed my episodes got longer. In addition to the vertigo I was having less dramatic "dizziness" between vertigo attack. I was very unsteady on my feet. Of course I got severely depressed. I had no control over my life. We had no insurance and one income , so surgery was out of the question. It was a bleek time in my life. I had episodes for close to twenty years of my life. I couldnt go anywhere alone and I definitely couldnt drive. I was lucky if I got through the grocery store without having a vertigo or drop attack.
Im glad to hear that you have support. I would have given anything to have support back then. One of the best places in the world to treat Menieres is the House Ear Institute in California.
http://www.houseearclinic.com/
PS - I now have fibromyalgia. Even though its a painful disorder I consider it to be a piece of cake compared to the menieres. There are lots of people with fibro who also have menieres. Odd huh? Yes, but only a mild case, and in answer to your question...
M茅ni猫re's disease is an abnormality of the inner ear causing a host of symptoms, including vertigo or severe dizziness, tinnitus or a roaring sound in the ears, fluctuating hearing loss, and the sensation of pressure or pain in the affected ear. The disorder usually affects only one ear and is a common cause of hearing loss. Named after French physician Prosper M茅ni猫re who first described the syndrome in 1861.
What causes M茅ni猫re's disease?
The symptoms of M茅ni猫re's disease are associated with a change in fluid volume within a portion of the inner ear known as the labyrinth. The labyrinth has two parts: the bony labyrinth and the membranous labyrinth. The membranous labyrinth, which is encased by bone, is necessary for hearing and balance and is filled with a fluid called endolymph. When your head moves, endolymph moves, causing nerve receptors in the membranous labyrinth to send signals to the brain about the body's motion. An increase in endolymph, however, can cause the membranous labyrinth to balloon or dilate, a condition known as endolymphatic hydrops.
Many experts on M茅ni猫re's disease think that a rupture of the membranous labyrinth allows the endolymph to mix with perilymph, another inner ear fluid that occupies the space between the membranous labyrinth and the bony inner ear. This mixing, scientists believe, can cause the symptoms of M茅ni猫re's disease. Scientists are investigating several possible causes of the disease, including environmental factors, such as noise pollution and viral infections, as well as biological factors.
What are the symptoms of M茅ni猫re's disease?
The symptoms of M茅ni猫re's disease occur suddenly and can arise daily or as infrequently as once a year. Vertigo, often the most debilitating symptom of M茅ni猫re's disease, typically involves a whirling dizziness that forces the sufferer to lie down. Vertigo attacks can lead to severe nausea, vomiting, and sweating and often come with little or no warning.
Some individuals with M茅ni猫re's disease have attacks that start with tinnitus (ear noises), a loss of hearing, or a full feeling or pressure in the affected ear. It is important to remember that all of these symptoms are unpredictable. Typically, the attack is characterized by a combination of vertigo, tinnitus, and hearing loss lasting several hours. People experience these discomforts at varying frequencies, durations, and intensities. Some may feel slight vertigo a few times a year. Others may be occasionally disturbed by intense, uncontrollable tinnitus while sleeping. M茅ni猫re's disease sufferers may also notice a hearing loss and feel unsteady all day long for prolonged periods. Other occasional symptoms of M茅ni猫re's disease include headaches, abdominal discomfort, and diarrhea. A person's hearing tends to recover between attacks but over time becomes worse.
How is M茅ni猫re's disease diagnosed?
Based on a recent study, NIDCD estimates that there are currently approximately 615,000 individuals with diagnosed M茅ni猫re's disease in the United States and 45,500 newly diagnosed cases each year. Proper diagnosis of M茅ni猫re's disease entails several procedures, including a medical history interview and a physical examination by a physician, hearing and balance tests, and medical imaging with magnetic resonance imaging (MRI). Accurate measurement and characterization of hearing loss are of critical importance in the diagnosis of M茅ni猫re's disease.
Through the use of several types of hearing tests, physicians can characterize hearing loss as being sensory, arising from the inner ear, or neural, arising from the hearing nerve. Recording the auditory brain stem response, which measures electrical activity in the hearing nerve and brain stem, is useful in differentiating between these two types of hearing loss. Electrocochleography, recording the electrical activity of the inner ear in response to sound, helps confirm the diagnosis.
To test the vestibular or balance system, physicians irrigate the ears with warm and cool water or air. This procedure, known as caloric testing, results in nystagmus, rapid eye movements that can help a physician analyze a balance disorder. Since tumor growth can produce symptoms similar to M茅ni猫re's disease, an MRI is a useful test to determine whether a tumor is causing the patient's vertigo and hearing loss.
How is M茅ni猫re's disease treated?
There is no cure for M茅ni猫re's disease. However, the symptoms of the disease are often controlled successfully by reducing the body鈥檚 retention of fluids through dietary changes (such as a low-salt or salt-free diet and no caffeine or alcohol) or medication. Changes in medications that either control allergies or improve blood circulation in the inner ear may help. Eliminating tobacco use and reducing stress levels are more ways some people can lessen the severity of their symptoms.
Different surgical procedures have been advocated for patients with persistent, debilitating vertigo from M茅ni猫re's disease. Labyrinthectomy (removal of the inner ear sense organ) can effectively control vertigo, but sacrifices hearing and is reserved for patients with nonfunctional hearing in the affected ear. Vestibular neurectomy, selectively severing a nerve from the affected inner ear organ, usually controls the vertigo while preserving hearing, but carries surgical risks. Recently, the administration of the ototoxic antibiotic, gentamycin directly into the middle ear space has gained popularity worldwide for the control of the vertigo of M茅ni猫re's disease. |
