Warrior

This blog is named Meniere’s Warrior for a reason. I consider myself a pretty humble individual, but when it comes to Meniere’s it takes a certain kind of person to deal with the daily struggles of what Meniere’s can be. I am a warrior when it comes to my Meniere’s. I feel like it is constantly trying to beat me down, and I am constantly trying to pick myself up. I wake up feeling like a prisoner in my own body. Sometimes I wish I could peel off my skin and it takes a warrior to come back from that in one piece. My family and friends say I am strong, what they do not know is that inside I am two completely different people – one is a little girl hiding under her bed, begging for what is happening to stop, the other is a warrior, willing to fight to the death for a typical life, willing to fight to the death for every opportunity that other twenty somethings have. I have my warrior days and I have my little girl days, and both are fighting for the win. My Meniere’s is my little monster living inside and we all have one in one degree or another. People fighting addiction, cancer probably have this same inner battle and are all fighting for a typical existence. I urge everyone to never stop fighting that monster, reach deep inside to the innermost part of you and pull out your warrior self. Your life should be measured by what you are willing to fight for, to die for. To all of you who are struggling to be typical, or normal, or healthy never stop fighting!

High Prevalence of Symptoms of Menière’s Disease in three Families With a Mutation in the COCH Gene

High Prevalence of Symptoms of Menière’s Disease in three Families With a Mutation in the COCH Gene

Speculation surrounds the discussion of Meniere’s Disease and whether or not there is a link between the disease and one’s heredity. Possibilities that have been discussed is the anatomy of the inner ear being inherited, or certain immune responses that trigger symptoms of Meniere’s Disease. Recent research has shown that a possible mutation of the COCH gene is to blame for heredity Meniere’s Disease. Because of the lack of an M.D. behind my name, I struggle to understand a lot of what my posted article says, however what I gather from the article is that it was proven that a mutation of this COCH gene does prove a link between familial Meniere’s Disease and other hearing/balance problems within families. I urge you to read the article and gather what you can and consult a physician for more information.

The Ups and the Downs

I would say the worst thing about Meniere’s Disease is never knowing when an attack is going to hit. I think as a victim of Meniere’s we try to blame anything and everything on an attack, ate too much salt with dinner, stressing out, not enough sleep – but the reality is sometimes an attack just hits because that is a characteristic of this disease. Over the last month that I have been so sick, I have had few ups, and many downs and sometimes it seems like a good day is a cruel joke played on me by the universe. I try to remain positive and continue to count down the days until my surgery, but it can be very difficult.

The down moments seem to muddy the good ones and that can take a hard hit on anyone mentally. If you are reading this and are having a down day, know that you are not alone! Feel free to comment!

MRI Blunder

Getting an MRI is a popular tool to use before a Meniere’s patient gets surgery. The MRI will rule out any tumors that may be pressing on the middle ear causing symptoms of Meniere’s. I have a difficult time with lie down MRI scanners so I found an open, upright MRI scanner in my area and was still terrified to get the procedure done.

My boyfriend takes me to the appointment and I get my IV port for the contrast that is used for this particular MRI and get in the machine and make strides to get comfortable. My tech strapped me in, turned up the TV mounted on the wall  (major luxury there!), and we began the exam. I have a hard time sitting still, so we had the repeat one set of scans and then the antimetic I had taken an hour prior kicked in and I began to be able to relax in my drowsy haze. We were on the third or fourth set of scans when suddenly, the room, TV, and tech room went dark.

My tech ran to me from her room like it was an episode of ER. She knew I had been nervous for the procedure and probably thought I was having a stage 5 meltdown in the darkness of the MRI scanner. I was laughing hysterically and thought the whole thing was a hoot! The tech felt terrible and it was the first time I felt normal all night after my irrational fear and hysterics over the appointment. They were unable to get the scanner back up and running so I have reschedule and finish my appointment at a later date.

What an experience and a story!

Stress Reduction

image

I have been told by my ear specialist that reducing my stress will help with my Meniere’s symptoms. Everyone has their blissful moments, for me these days they seem to be few and far between with how sick I have been feeling. I just snapped this photo in hopes to remind myself that my blissful moments are sitting in my chair, Cirrus fast asleep on my lap, listening to the thunderstorm outside. The world slows down for a few seconds.

I hope my fellow Meniere’s sufferers find these tiny moments of bliss.

Haute Meniere’s

Fun facts – famous individuals who suffered from Meniere’s.

  • Vincent van Gogh – artist
  • Alan Shepard – first American in space and fifth to land on the moon
  • David Alstead – pianist
  • Emily Dickinson – poet
  • Peggy Lee – singer
  • Steve Francis – Basketball player
  • Dana Davis – author and ghost buster
  • Mike Reilly – umpire
  • Katie LeClerc – actress
  • Andrew Knight – editor and journalist
  • David Copithorne – PR and marketing
  • Les Paul – guitarist
  • Lisa McDonald – politician
  • Jonathan Swift – cleric
  • Martin Luther – monk and professor
  • Jessica Williams – pianist
  • Kristin Chenoweth – singer and actress
  • Tim Conley – golfer

Who any other ones, post here!

Meniere’s Disease and Weather?

The weather has always been a fascinating thing for me. My dad and I share a passion for weather and have become trained weather spotters together. On top of being something we love to do together, I think weather effects my Meniere’s symptoms. When there are high and loss pressure symptoms moving through our area I can always tell because the fullness and pressure in my ears is more apparent. I know that many Meniere’s sufferers have frequent pain in the ear and temple area. I pause to call them headaches because they are more shooting or sharp pains for me, rather than the ache of a headache. The reason I bring this up is because this also happens more frequently with barometric pressure changes.

If you have experienced these symptoms please comment here and share your experiences.

School Debacle

I am a student. I have always been really good at school. I often say, I am bad at working and great at school. I have a passion for learning and have always excelled in school. I am currently a Master’s student at a private university in the Twin Cities, MN area. I have three courses to complete before graduation. My 4.0 GPA speaks to the kind of student I am. My school’s mission statement boasts it’s passion for it’s students and commitment to helping students grow through learning.

This spring I signed up for two courses to take over the summer. One is a 15 week course which is a blended format, meaning the course has components both online and in the classroom. My other course is a 7.5 week course which is an all online course. My 15 week course began at the beginning of May and things were going fine until this attack happened Memorial weekend. Not being able to safely drive the hour commute from home to school I had to call my advisor, who is also the professor for this particular course and chair for my program. Her and I have a wonderful relationships and I have shared with her my Meniere’s Disease story as there have been times in the past two years were the commute has been difficult because of my Meniere’s. She has always supported me in doing what I think is best for the safety of myself and others.

We decided that what would be best for me is withdrawing from my 15 week course which included the commuting because of my upcoming surgery and recovery time. The only problem was that my financial aid requires me to take 6 credits in order to receive my aid. You have the option of only taking 3 credits, but the school will still charge you as if you are taking the 6 credits. Keep in mind, each 3 credit course costs roughly $2,000. So, even though I withdrew from my 15 week course due to a medical issue, and will be retaking this particular 15 week course in the fall, I will be charged twice for the course.

Even after filing a letter to the appeals committee, the school deemed this double charge as policy. They offered me to take another 7.5 week course. The problem with that, is then I am taking two courses beginning June 28th with surgery only a few weeks into the course. One course is going to be difficult enough to maintain while I am recovering, let alone two.

When my advisor called to tell me my appeals letter was denied and I would still get charged for the 6 full credits I was stunned, upset, and angry. How can they do this? It would be different if I was just dropping the course because I got a new job or didn’t want a heavy load in the summer months. It would also be different if I was dropping the course and planning to not take the course again. I have this disease and come to the understanding that this is my lot in life, but what I refuse to understand is why anyone would discriminate against me because of something I did not choose to have. I would much rather be working on school than being a prisoner in my own home, my own body, my own mind.

I am extremely angry and disappointed in an institution that claims it is a forward thinking university and cares so much for it’s students. I feel sorry for the individual who calls me after I graduate and begs for an alumni donation because my response with be, “I already gave you a $2,000 donation. Do not call me ever again.”

Loss of Control

The most difficult thing I believe a Meniere’s patient must go through is the loss of control of their life. Many of my close friends would probably say that I am a control freak. They are certainly correct. I justify this by feeling like a majority of my life is out of control. The only thing I can control in my life is my relationships, and if I lose that control I push people away because it is one less thing I have the ability to control. This may be the answer to the demise of some of my relationships, certainly since my diagnosis and firm understanding of my world. I am unable to get up and drive to the mall alone. I am dependent on the people in my life. My relationships are my lifeline. When someone lives with little independence, all they have to control is the external factors that influence their lives i.e. relationships. Losing control of one’s body is the most frightening feeling in the world. I fear going sleep, I fear waking up, I fear getting up to go the bathroom, I fear going to the grocery store because I never know when the little monster (how I refer to my Meniere’s in my head) is going to pop up. I have to work close to home because driving long distances, especially alone is difficult. I have little control of what I do, where I go.

Loss of control leads to a burning anger. I want to get in the car and go to the mall by myself, I want to jump on a plane and visit my best friend in Denver, CO where she recently moved, and I want to be able to go biking, swimming, hiking, and traveling with my boyfriend Matt. Few of those things I would feel confident doing even on a ‘good’ day.

The last month has been the most difficult for me with my Meniere’s. The anger and sadness I feel is almost unbearable at times.

If you are reading this and feel that anger or that sadness please know that you are not alone. This is a safe place to vent your anger, your sadness. Leave a comment and if you want me to keep it private (not shown publicly) please mention that and I will not approve it for the website.

Starry Night

Starry Night

One theory about Vincent van Gogh is that he had Meniere’s Disease. When he cut his ear off, many believed him to be crazy, schizophrenic, or depressed. However, based on my experience with Meniere’s Disease, the depression and anxiety that accompanies Meniere’s attacks, I can understand why he cut his ear off in hopes to rid himself of the horrible symptoms accompanied with these attacks. Also, the way this painting is presented, along with many other works from Vincent van Gogh, I think Meniere’s Disease is a viable theory.

Meniere’s Disease 101

All the information provided in this particular post is provided from the Mayo Clinic. This is a comprehensive explanation of Meniere’s Disease.

Definition:

Meniere’s disease is a disorder of the inner ear that causes spontaneous episodes of vertigo — a sensation of a spinning motion — along with fluctuating hearing loss, ringing in the ear (tinnitus), and sometimes a feeling of fullness or pressure in your ear. In most cases, Meniere’s disease affects only one ear. People in their 40s and 50s are more likely than people in other age groups to develop Meniere’s disease, but it can occur in anyone, even children. Although Meniere’s disease is considered a chronic condition, there are various treatment strategies that can help relieve symptoms and minimize the disease’s long-term impact on your life.

Symptoms:

The primary signs and symptoms of Meniere’s disease are:

  • Recurring episodes of vertigo. Vertigo is similar to the sensation you experience if you spin around quickly several times and suddenly stop. You feel as if the room is still spinning, and you lose your balance. Episodes of vertigo occur without warning and usually last 20 minutes to two hours or more, up to 24 hours. Severe vertigo can cause nausea and vomiting.
  • Hearing loss. Hearing loss in Meniere’s disease may fluctuate, particularly early in the course of the disease. Eventually, most people experience some degree of permanent hearing loss.
  • Tinnitus. Tinnitus is the perception of a ringing, buzzing, roaring, whistling or hissing sound in your ear. With Meniere’s disease, tinnitus is often low-pitched.
  • Aural fullness. Aural fullness is the feeling of fullness or pressure in the ear.

A typical episode might start with a feeling of fullness in your ear, increasing tinnitus and decreasing hearing followed by severe vertigo, often accompanied by nausea and vomiting. Such an episode might last two to three hours, after which signs and symptoms improve. Episodes often occur in clusters, with long periods of mild or no symptoms (remission) between. Still, the severity, frequency and duration of each of these sensory perception problems vary, especially early in the disease. For example, you could have frequent episodes with severe vertigo and only mild disturbances in other sensations. Or you may experience mild vertigo and hearing loss infrequently but have frequent tinnitus that disturbs your sleep.

When to see a doctor
See your doctor if you experience any signs or symptoms of Meniere’s disease. Because any one of these problems may be the result of other illnesses, it’s important to get an accurate diagnosis as soon as possible. Vertigo is an uncommon but possible sign of other disorders, such as stroke, brain tumor, multiple sclerosis, or diseases of your heart or blood vessels (cardiovascular disease). See your primary care doctor immediately if vertigo is accompanied by any of the following signs or symptoms:

  • Headache that is unusual or severe for you
  • Double vision or loss of vision
  • Speech impairment
  • Leg or arm weakness
  • Loss of consciousness
  • Falling or difficulty walking
  • Numbness or tingling
  • Chest pain
  • Rapid or slow heart rate

Causes:

The cause of Meniere’s disease isn’t well understood. It appears to be the result of the abnormal volume or composition of fluid in the inner ear.

The inner ear is a cluster of connected passages and cavities called a labyrinth. The outside of the inner ear is made of bone (bony labyrinth). Inside is a soft structure of membrane (membranous labyrinth) that’s a slightly smaller, similarly shaped version of the bony labyrinth. The membranous labyrinth contains a fluid (endolymph) and is lined with hair-like sensors that respond to movement of the fluid. In order for all of the sensors in the inner ear to function properly, the fluid needs to retain a certain volume, pressure and chemical composition. Factors that alter the properties of inner ear fluid may help cause Meniere’s disease. Scientists have proposed a number of potential causes or triggers, including:

  • Improper fluid drainage, perhaps because of a blockage or anatomic abnormality
  • Abnormal immune response
  • Allergies
  • Viral infection
  • Genetic predisposition
  • Head trauma

Because no single cause has been identified, it’s likely that Meniere’s disease is caused by a combination of factors.

Complications:

The unpredictable episodes of vertigo are usually the most debilitating problem of Meniere’s disease. The episodes often force a person to lie down for several hours and lose time from work or leisure activities, and they can cause emotional stress.

Vertigo can also increase your risk of:

  • Falls
  • Accidents while driving a car or operating heavy machinery
  • Depression or anxiety in dealing with the disease
  • Permanent hearing loss

Preparing for your appointment:

You’re likely to first see your family doctor or a general practitioner. Eventually, however, your primary care doctor may refer you to an ear, nose and throat (ENT) specialist, or otolaryngologist; a hearing specialist (audiologist); or a nervous system specialist (neurologist).

Because appointments can be brief, and because there’s often a lot of ground to cover, it’s a good idea to be well prepared for your appointment. Here’s some information to help you get ready for your appointment, and what to expect from your doctor.

What you can do

  • Write down any symptoms you’re experiencing, especially those you experience during an episode, and how often your symptoms come and go. Make a note of how frequently episodes recur.
  • Write down key personal information, including any major stresses or recent life changes.
  • Make a list of all medications, as well as any vitamins or supplements, that you’re taking.
  • Write down questions to ask your doctor, such as what’s the best next step in your diagnosis or treatment plan. Also, don’t hesitate to ask questions during your appointment.

What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to spend more time on. Your doctor may ask:

  • When did you first begin experiencing symptoms?
  • Have your symptoms been continuous or occasional?
  • How severe are your symptoms?
  • What, if anything, seems to trigger your symptoms?
  • What, if anything, appears to worsen your symptoms?
  • Does anything seem to improve your symptoms?

Tests and Diagnosis:

A diagnosis of Meniere’s disease requires:

  • Two spontaneous episodes of vertigo, each lasting 20 minutes or longer
  • Hearing loss verified by a hearing test on at least one occasion
  • Tinnitus or aural fullness
  • Exclusion of other known causes of these sensory problems

If you have signs or symptoms associated with Meniere’s disease, your doctor will ask you questions about your sensory problems, order tests that evaluate the quality of inner ear function and order other tests to screen for possible causes of the problems.

Physical examination and medical history
Your doctor will conduct a physical examination and ask questions about:

  • The severity, duration and frequency of the sensory problems
  • Your history of infectious diseases or allergies
  • Medication use
  • Past ear problems
  • Your general health
  • History of inner ear problems in your family

Hearing assessment
A hearing test (audiometry) assesses how well you detect sounds at different pitches and volumes and how well you distinguish between similar-sounding words. The test not only reveals the quality of your hearing but also may help determine if the source of hearing problems is in the inner ear or the nerve that connects the inner ear to the brain.

Balance assessment
Between episodes of vertigo, the sense of balance returns to normal for most people with Meniere’s disease. But there may be some degree of ongoing balance problems.

There are several tests that assess function of the inner ear. Some or all of these tests can yield abnormal results in a person with Meniere’s disease. The evaluation most commonly used for Meniere’s disease is electronystagmography.

  • Electronystagmography (ENG). This test evaluates balance function by assessing eye movement. Balance-related sensors in the inner ear are linked to muscles that control movement of the eye in all directions. This connection is what enables you to move your head around while keeping your eyes focused on a single point.

    In an ENG evaluation, electrodes are placed on the skin near the eyes and on the forehead. Then warm and cool water, or warm and cool air, are introduced into the ear canal. Measurements of involuntary eye movements in response to this stimulation are performed. Abnormalities of this test may indicate an inner ear problem.

  • Rotary-chair testing. Like an ENG, this measures inner ear function based on eye movement. In this case, stimulus to your inner ear is provided by movement of a special rotating chair precisely controlled by a computer.
  • Vestibular evoked myogenic potentials (VEMP) testing. VEMP testing measures the function of sensors in the vestibule of the inner ear that help you detect acceleration movement. These sensors also have a slight sensitivity to sound. When these sensors react to sound, tiny measurable variations in neck muscle contractions occur. These contractions serve as an indirect measure of inner ear function.
  • Posturography. This computerized test reveals which part of the balance system — vision; inner ear function; or sensations from the skin, muscles, tendons and joints — you rely on the most and which parts may cause problems. While wearing a safety harness, you stand in bare feet on a platform and keep your balance under various conditions.

Tests to rule out other conditions
Other tests may be used to rule out disorders that can cause problems similar to those of Meniere’s disease, such as a tumor in the brain or multiple sclerosis. These tests include:

  • Magnetic resonance imaging (MRI). This technique uses a magnetic field and radio waves to create images of soft tissues in the body. It can be used to produce either a thin cross-sectional “slice” or a 3-D image of your brain.
  • Computerized tomography (CT). This X-ray technique produces cross-sectional images of internal structures in your body.
  • Auditory brainstem response audiometry. This is a computerized test of the hearing nerves and hearing centers of the brain. It can help detect the presence of a tumor disrupting the function of auditory nerves.

Treatments and Drugs:

No cure exists for Meniere’s disease, but a number of strategies may help you manage some symptoms. Research shows that most people with Meniere’s disease respond to treatment, although long-term hearing loss is difficult to prevent.

Medications for vertigo
Your doctor may prescribe medications to be taken during an episode of vertigo to lessen the severity of an attack:

  • Motion sickness medications, such as meclizine (Antivert) or diazepam (Valium), may reduce the spinning sensation of vertigo and help control nausea and vomiting.
  • Anti-nausea medications, such as promethazine, may control nausea and vomiting during an episode of vertigo.

Long-term medication use
Your doctor may prescribe a medication to reduce fluid retention (diuretic), such as the drug combination triamterene and hydrochlorothiazide (Dyazide, Maxzide). Reducing the amount of fluid your body retains may help regulate the fluid volume and pressure in your inner ear. For some people a diuretic helps control the severity and frequency of Meniere’s disease symptoms.

Because diuretic medications cause you to urinate more frequently, your system may become depleted of certain minerals, such as potassium. If you take a diuretic, supplement your diet each week with three or four extra servings of potassium-rich foods, such as bananas, cantaloupe, oranges, spinach and sweet potatoes.

Noninvasive therapies and procedures
Some people with Meniere’s may benefit from other noninvasive therapies and procedures, such as:

  • Rehabilitation. If you experience problems with your balance between episodes of vertigo, you may benefit from vestibular rehabilitation therapy. The goal of this therapy, which may include exercises and activities that you perform during therapy sessions and at home, is to help your body and brain regain the ability to process balance information correctly.
  • Hearing aid. A hearing aid in the ear affected by Meniere’s disease may improve your hearing. Your doctor can refer you to an audiologist to discuss what hearing aid options would be best for you.
  • Meniett device. For vertigo that’s hard to treat, a fairly new therapy involves the application of positive pressure to the middle ear to improve fluid exchange. A device called a Meniett pulse generator applies pulses of pressure to the ear canal through a ventilation tube. The treatment is performed at home, usually three times a day for five minutes at a time. Initial reports on the Meniett device show improvement in symptoms of vertigo, tinnitus and aural pressure. A disadvantage may be the cost of the device.

Middle ear injections
Medications injected into the middle ear, and then absorbed into the inner ear, may improve vertigo symptoms:

  • Gentamicin, an antibiotic that’s toxic to your inner ear, reduces the balancing function of your ear, and your other ear assumes responsibility for balance. The procedure, which can be performed during local anesthesia in your doctor’s office, often reduces the frequency and severity of vertigo attacks. There is a risk, however, of further hearing loss.
  • Steroids, such as dexamethasone, also may help control vertigo attacks in some people. This procedure can also be performed with local anesthesia applied by your doctor. Although dexamethasone may be slightly less effective than gentamicin, dexamethasone is less likely than gentamicin to cause further hearing loss.

Surgery
If vertigo attacks associated with Meniere’s disease are severe and debilitating and other treatments don’t help, surgery may be an option. Procedures may include:

  • Endolymphatic sac procedures. The endolymphatic sac plays a role in regulating inner ear fluid levels. These surgical procedures may alleviate vertigo by decreasing fluid production or increasing fluid absorption.

    In endolymphatic sac decompression, a small portion of bone is removed from over the endolymphatic sac. In some cases, this procedure is coupled with the placement of a shunt, a tube that drains excess fluid from your inner ear.

  • Vestibular nerve section. This procedure involves cutting the nerve that connects balance and movement sensors in your inner ear to the brain (vestibular nerve). This procedure usually corrects problems with vertigo while attempting to preserve hearing in the affected ear.
  • Labyrinthectomy. With this procedure, the surgeon removes a portion or all of the inner ear, thereby removing both balance and hearing function from the affected ear. This procedure is performed only if you already have near-total or total hearing loss in your affected ear.

Lifestyle and Home Remedies:

Certain self-care tactics can help reduce the impact of Meniere’s disease. Consider these tips for use during an episode:

  • Sit or lie down immediately when you feel dizzy. During an episode of vertigo, avoid things that can make your signs and symptoms worse, such as sudden movement, bright lights, watching television or reading.
  • Rest during and after attacks. Don’t rush to return to your normal activities.
  • Be aware of the possibility of losing your balance. Falling could lead to serious injury. Use good lighting if you get up in the night. Consider walking with a cane for stability if you experience chronic balance problems.
  • Avoid driving a car or operating heavy machinery if you experience frequent episodes of vertigo. Doing so could lead to an accident and injury.

Dietary changes
Modifying your diet can reduce your body’s fluid retention and help decrease fluid in your inner ear. Your doctor may suggest you follow these dietary changes to lessen the severity and frequency of Meniere’s disease symptoms:

  • Eat regularly. Distributing evenly what you eat and drink throughout the day helps regulate your body fluids. Eat approximately the same amount of food at each meal. You may also eat five or six smaller meals rather than three meals a day.
  • Limit salt. Consuming foods and beverages high in salt can increase fluid retention. Aim for an intake of 1,500 milligrams (mg) or less of sodium each day.
  • Avoid monosodium glutamate (MSG). Some prepackaged food products and prepared restaurant foods contain MSG, a type of sodium. MSG can contribute to fluid retention. Check ingredient labels or ask your restaurant server if the food you’re considering ordering contains MSG.

Other lifestyle changes
Some evidence suggests that lifestyle factors may worsen symptoms of Meniere’s disease or act as triggers for the onset of symptoms. Your doctor may recommend the following changes to alleviate symptoms or help prevent the onset of symptoms.

  • Avoid caffeine. Foods and beverages that contain caffeine, such as chocolate, coffee, tea and certain soft drinks, have stimulant properties that can make symptoms worse. For instance, caffeine may make ringing in the ear (tinnitus) louder.
  • Stop smoking. Avoiding nicotine may lessen the severity of Meniere’s disease symptoms.
  • Manage stress and anxiety. It’s difficult to know whether stress and anxiety act as triggers for Meniere’s disease symptoms or are the result of having the disorder. Some evidence suggests, however, that managing stress and anxiety may lessen the severity of symptoms and enable you to cope with the disorder. Professional psychotherapy may help you identify stressors and develop strategies for dealing with stress and anxiety. Medications to alleviate anxiety also may be beneficial.
  • Avoid allergens. Some reports note an association between allergies and Meniere’s disease. Controlling your exposure to allergens and managing allergies with appropriate treatment may help manage Meniere’s disease, as well.

Coping and Support:

Meniere’s disease may affect your interaction with friends and family, your productivity at work, and the overall quality of your life. You may find encouragement and understanding in a support group. Group members can provide information, resources, support and coping strategies. Your doctor may be able to recommend a group in your area, or you may find information about local groups from the Vestibular Disorders Association.

Diagnosis Bleak

I always knew as a kid that something was up. I was clumsy. When I would stand up I would feel a little light headed and thought I had just stood up too fast, but it happened frequently. I would find myself sitting in class and suddenly the whole room would seem to shift and it would send me into a fit of anxiety so powerful all I could hear was my own heart beating. Everyone thought I had some anxiety disorder or frequent panic attacks.

A couple days before my high school graduation party I woke up in the middle of the night to the whole room spinning. I remember hitting myself in the head to make it stop. My parents (both my mother and maternal grandmother have had episodes of vertigo before) rushed me to the Emergency Room where doctors gave me a high does of Benadryl and sent me on my way with a suggestion to see my General Practitioner. I did as instructed and made an appointment with the physician who had delivered me and had provided healthcare to me for eighteen years. This was a pivotal moment in my life. He handed me a prescription for an anti-depressant and sent me on my way. I was devastated, ashamed, and embarrassed. I threw the pharmacy slip for the anti-depressant away before I even left the clinic. Was I crazy? Was this dizziness really just a panic attack? That was the summer of 2006.

I didn’t stop fighting and searching for answers. We found an Ear, Nose, and Throat doctor who saw me and referred me immediately Dr. Michael Paparella, M.D. at the Paparella Ear, Head, and Neck Institute in Minneapolis, MN. He saw me and suggested some testing be done at the University of Minnesota Balance Center. After a day of dizziness and testing, Dr. Paparella diagnosed me with unilateral Vestibular Meniere’s Disease (VMD) in my right ear. My hearing was still at a normal level, which is why he diagnosed me with VMD rather than traditional Meniere’s Disease. At that time he prescribed a diuretic and advised me to take Meclizine (anti-emetic) as needed with dizzy spells. He also educated me on some surgical options if a combination of the diuretic and some dietary changes didn’t help reduce the number of dizzy spells. One was an Endolymphatic Sac Enhancement which was considered constructive (meaning it would not kill the inner ear completely and had a low risk of complete hearing loss), and two were destructive, where the inner ear would be killed completely, along with a high likelihood of permanent deafness.

What many do not understand about this disease is how debilitating it really is. You lose the ability to do things like driving, brushing your teeth, preparing your own meals, and even getting to the restroom and bathing can be difficult without the help of someone else. About a year after my diagnosis and feeling like I was not able to live a typical eighteen year old’s life, with a lot of consideration I decided to have the Endolymphatic sac enhancement surgery on my right ear November of 2007. The surgery changed my life and gave me the ability to live again.

In 2010 I was diagnosed with bilateral VMD in my left ear. My symptoms were starting to pop up again and the frequency of dizziness attacks were becoming to be more and more. I graduated from college May 2010 and began my M.A. degree that same summer. About  one month ago I had an attack and it has continued until today. I have surgery for my left ear scheduled for July of this year.

If you are reading this and you have Meniere’s Disease you are not alone. If you are reading this and you are my family or friends, it has been your love and support that has driven me to make these decisions for myself, because without you I could not have survived these difficult times.

Meniere’s Warrior

Welcome to my blog. The purpose of this blog is educate individuals around the world of Meniere’s Disease. I will try my best to post a balance of both facts about Meniere’s Disease including different remedies for attacks and also my personal experiences with Meniere’s Disease.

Thank you! I will introduce myself very soon.