Getting Better in 2017

I don’t have many close friends that suffer from Meniere’s disease.  When I hear of one of my acquaintances getting diagnosed with Meniere’s, my heart sinks.  I hope that their first year with the disease is nothing like mine.

I was diagnosed with Meniere’s 23 years ago.  I don’t know if the general public is more educated now but when I mentioned it back then, I was met with blank stares.  I felt so alone as the only ones who seemed to know about it was my ENT and my family who got to witness it first hand.  Any attempts to explain to people what I was going through was a disaster and I quickly stopped trying.  I didn’t leave the house much as  I never knew when the next time “it” was going to hit.  It was an awful, awful experience that I don’t wish on anyone.  All I could think of at that time was that I could not go on living like that.

If you are brand new to this site and have been recently been diagnosed with Meniere’s, let me point out a few things

  • There is hope.   Many people including myself have figured out how to manage this and lead normal productive lives.
  • Learning how to manage Meniere’s is possible but not always easy.  You may need to go through several doctors and try many things to figure out what your triggers are.  You may need to try alternative treatments or things that don’t always make sense to you.
  • Meniere’s seems to affect everyone a little differently.  I personally think that Meniere’s disease is an umbrella term to cover many inner ear disorders that doctors do not understand.  Because of that, what works well for one individual, may or may not work well for others.  Back when doctors determined that scurvy was caused by a lack of vitamin C, the cure was simple.  Give all who suffer from scurvy some citrus fruit and the symptoms went away.  Meniere’s disease is no where near that simple.
  • You will need to become you own best doctor.  Treat doctors as tools you can use to help you get better but understand that there is no one on earth as motivated at getting you better than yourself.  Take full responsibility for your own health.

To all my Meniere’s friends, if you do not already have this condition under control, I hope that 2017 is the year you  conquer this beast.  I wish you the best.

 

First Steps in Meniere’s Disease Management

Okay, so life was sweet.  Everything was rolling along just fine when BAM! you got broadsided by the beast. The room started spinning and you started throwing up and you didn’t know quite why. After a trip to your doctor and some tests by the ENT, you were diagnosed with Meniere’s disease–something you had possibly never heard of before.  After your second attack, you started to lose hope thinking, “I can’t go on living like this.” That point could very well be one of the lowest points of your life but take heart, there are things you can do to manage this.

Your first step should be to seek out the best ENT (Ears Nose Throat Specialist) and follow his or her advice.  If you find relief via that path, Congratulations.  I am very happy for you. If you do not get the results you were looking for, read on.

The nasty virtigo attacks that come with Meniere’s disease are usually triggered by something. Common triggers include

  • Ear infections
  • Head trauma
  • Allergies
  • Stress
  • Fatigue
  • High sodium foods
  • Sexual intercourse  (yeah, sorry, noone likes to hear that)
  • Caffeine
  • Alcohol
  • Changes in barometric pressure
  • Menstruation

Your top priority will be to determine your trigger or triggers.  I need to quickly note that everyone is different and your recipe for managing Meniere’s will be different.

Get a notebook and start recording what you eat, specific activities, amount of sleep, etc. Make daily entries and record anything that you did that might be a little unusual that day.  Also record your Meniere’s disease symptoms.  What you are trying to do is determine the cause and effect.  You want to isolate what sends your world spinning.

Once you isolate your trigger, then you do what you can to reduce or eliminate it. That may not sound simple and it typically is not. For me, the trigger is stress–stress from a stressful job. I have not been in a position to just quit my job when it gets stressful so I had to learn stress coping techniques like deep breathing and meditation.

One thing that your doctor should recommend is the CATS lifestyle.  CATS stands for caffeine, alcohol, tobacco, and stress. And you should remove as much of them from you life as you can. Again, you may have stress that comes from a job or a family situation and you cannot remove yourself from those. You will need to learn stress coping skills to deal with those stresses that you cannot reduce or eliminate.

One other thing to immediately consider is to reduce your sodium intake.  There is plenty of information on this site and others to help you eat a low sodium diet. This has helped many people with Meniere’s Disease.

For me personally, the three most helpful things in helping me keep the symptoms of Meniere’s disease away are acupuncture, meditation and supplements. While that is my own personal recipe, it may or may not work for you. What you need to do is try different things to find out what works for you.

At this site, you can learn what works for me and others with MD. Above all, remember that Meniere’s disease can be overcome. Do not listen to anyone who tells you to just “live with it.” No one that has told me that has been diagnosed with this ailment. Just “living with it” is not living at all.  Know that you can and will overcome.

 

For more help, see the following posts

Your First Imperative: Take Personal Responsibility

Using Your Journal to Help Manage Meniere’s Disease

How To Survive a Vertigo Attack

Managing Meniere’s Disease: CATS and SPADE

Another Musician with Meniere’s Disease: James Day

Meniere's Disease Success Story: Musician and Sheet Music

 

I previously wrote about the Meniere’s disease success story of the musician, Joe Bongiorno.  I have since learned of another musician, who has faced and learned to live with Meniere’s disease.

James Day is a successful R&B songwriter who’s work has appeared on albums with Luther Vandross, George Benson and Earth, Wind & Fire. His music career seemed quite promising when, in his 20’s, he was diagnosed with Menieres and eventually lost hearing in one ear.  Like many of us, he withdrew a little from normal life.  In his own words, “At first, I wanted nothing to do with music, it was too painful. I covered all my albums with sheets so I didn’t have to look at them. My mother called it a graveyard. But soon I began to listen to them and eventually I built a home recording studio and started writing songs.”

At that point, he evaluated his talents and decided to focus on his strengths. With his hearing loss, it became more difficult to sing in tune so he has others sing on his albums. He became a non-performing songwriter and producer releasing a number of albums including a holiday album at the end of last year.  Singers for his projects include Lalah Hathaway,  Audrey Wheeler and Gavin Christopher  You can support his current project here.

Everyone loves an underdog and I am no exception.  I love to learn about people who succeed against the odds.  I am especially impressed with these musicians who press on in the same field despite suffering from hearing loss even though the sense of hearing is so important to their careers.  They have accepted their fate, adjusted and moved forward and in some cases even excelled.  Good for them.

 

 

 

 

Meniere’s Disease Success Story: The Musician

Here’s a success story that I really like for a number of reasons.  First, it reinforces a number of principles I have been advocating for the last few years.  Second, it is especially encouraging because it is about a guy whose livelihood depends on having functional hearing.

Joe Bongiorno is a musician who was diagnosed with Meniere’s disease and suffered from the same unpleasant symptoms that we have.  Through trial and error, he discovered what was causing the problem and has systematically overcome Meniere’s disease.

I have always emphasized the importance of reducing stress in one’s life especially those motivated to eliminate the effects of Meniere’s disease.  Joe had several stressors in his life that he attributed to compromising his immune system and making his body vulnerable to Meniere’s attacks.

He also is a great example of what I call “personal responsibility.”  By that I mean that you are ultimately responsible for your good health and well-being.  Relying solely on one doctor’s advice can be a long fruitless path for someone suffering from Meniere’s disease.  You are the one ultimately responsible for getting yourself better and frankly, no one should be more motivated than you to get yourself better. You must take the lead in figuring out your path back to better health.

Joe took a very scientific approach to determine what was affecting him. He declared it was a fungal infection of the inner ear.  His suggestions for those suffering from Meniere’s disease include

  • Get blood work done. Test for food allergies.  Get Candida and Herpes virus testing.
  • Ensure that your prescription drugs are not harming your inner ear
  • Don’t use Q-tips. Have a professional ear cleaning done regularly.
  • Exercise–something else I have always emphasized
  • Drink plenty of water–64 ounces a day.
  • Avoid ear surgery
  • Try only one treatment at a time to isolate what works and what doesn’t
  • Be patient

One thing that was re-emphasized when I read Joe’s account was the return of his hearing function. After my first bout with Meniere’s disease, I suffered great hearing loss. But my hearing fully returned after a few months. I now suffer from hearing loss and am encouraged at the thoughts that I can run my own experiments and possibly recover.

You can read Joe’s full account here.

Iy Yi Yi! My Fourth Round with Meniere’s Disease

Sadly, there is no cure for Meniere’s disease. It can go into remission but is never completely gone. Once diagnosed with Meniere’s disease, a patient has it for life. When it does go into remission, it can stay away for a long time and be forgotten. When my Meniere’s disease goes into remission, I often forget its devastation and I forget the healthy habits that keep it away. This happen last year.

in 2013, my workload grew to almost twice its normal size and there were constant pressures that built on me daily. Like, the proverbial boiling frog, no internal alarms went off. I  just kept at my work, plugging away, trying desperately to reduce the work load that was crushing me. I was not successful and one day, BAM, everything went loopy. You know the rest of the story there.

There is nothing like a solid vertigo attack to get your attention.  Overnight, I adopted the healthy habits that had served me so well in my past.  The most important steps were to

  1. Begin meditating again. Stress has been a constant Meniere’s trigger for me.
  2. Ensure that I get at least eight hours of sleep
  3. Visit my acupuncturist

Each round with Meniere’s disease gets shorter and shorter as I have learned what works for me.  This was no exception. My Meniere’s went dormant again after a few weeks but it still has my attention and I hope to  keep up with those habits that keep it away.

Whenever I go through this, I always reevaluate all my health practices and typically make improvements.  If there is a silver lining to having Meniere’s disease, it would be that it regularly forces me to live healthier.  The two areas that stood out in my mind this round were not drinking enough water in a day and not eating enough fruits and vegetables. I will continue to press on in those areas.

Meniere’s disease seems to affect each person a little differently. Unfortunately, what works for one person is not guaranteed to bring results with another. Your task is to find out what works for you and to stick with it–even when your Meniere’s is dormant.

Good Luck!

I wish for you a Meniere’s-free 2014

 

With Hope, The Odds Don’t Matter

I’ve got a guest post I’d like to share.  Some may think that it is a little off the topic of Meniere’s disease but the message is right on the mark of what I am trying to accomplish with this blog.

I was first diagnosed with Meniere’s disease back in 1994.  I went to the doctors and learned that this ailment was incurable.  I also learned that few people knew how to get relief from it.  Luckily, after a absolutely terrible year, the disease went into remission.  During that year, I lived in constant fear of when the next attack would hit.  I was without hope.  My Meniere’s disease has come out of remission three times since then, the latest just a few weeks ago.

My most current experience with Meniere’s is so drastically different than the first round because I now have hope.  During my first year of Meniere’s, I thought that it would be a constant companion my entire life.  I knew that I could not live like that.  Since I have been able to drive it back into remission, I have hope and confidence.  Each succession round of “active” Meniere’s gets shorter and shorter. That is because I have learned what to do to manage it and also because I have the confidence that in the end, I will get the best of it.

But let’s get on to the main event.  Let me turn the time over to Cameron Von St. James.


 

I’ll never forget how my life changed drastically seven years ago. My wife Heather and I celebrated the birth of our first and only child. We named her Lily, and she was a dream come true. About three months after she came into our world, we found out some unfortunate news. Heather was diagnosed with malignant pleural mesothelioma. It was something that shocked my family and ended the whirlwind of happiness that we had been living in.

I started my journey as Heather’s caregiver from the moment I entered the doctor’s office. When you go through something so traumatic together, your bond strengthens because you are tested in such a way that only you two can know that feeling. The doctor diagnosed her with mesothelioma, and she was incapable of speech, too shocked to respond. I was in disbelief. I kept thinking to myself how did this happen and why was it happening to us. However, we really didn’t have time to waste. Heather likely only had 15 months to live without treatment. There was no waiting on this. I looked to Heather as the doctor suggested different treatments, from local hospitals to regional hospitals. There was also a mesothelioma specialist in Boston who had a lot of experience in treating this disease. To me, the choice was clear, and we made immediate plans to go to Boston to see the mesothelioma specialist.

The next months were spent getting ready for Heather’s treatment while also trying to put our affairs in order. I’ve never felt so many emotions on a daily basis. Going to work was the absolute worst part. I always felt that I needed to be somewhere else than where I was. I needed to be by my wife’s side or taking care of Lily. I didn’t want to be anywhere but with them. On some days, all of the emotions compounded with doubt and fear and created some serious breakdowns. I found myself sobbing on the kitchen floor one night because I had been overcome by the thought of losing Heather and all that we had trying to save her. It was unfair. I thought that things were going to be so different and I never expected for anything like this to happen. Despite those feelings and the chaos sweeping over my family, I knew I needed to be their rock. I could not be anything else but a strong, caring husband and father. I never showed what I was truly feeling to Heather because I needed to be greater than that. The last thing she needed was to see my fears.

Even though I thought I could handle it all, that was my first mistake. I didn’t want to accept help from others at first due to my stubborn pride. However, people were just so compassionate. Friends, family, neighbors and even strangers just wanted to help Heather see this thing through. They gave in little ways and also huge ways. They offered us everything from kind words to financial help, which was something that I didn’t want to admit to needing. This is just my advice to others in similar situations. When people offer you help in a crisis like this, just accept the offer and show your appreciation however you can. There is simply no room for pride in a battle like this. I don’t think that I can ever thank those people enough for what they did for my family. They were the heroes for my wife, my daughter and me.

At a certain point, Heather started rounding the corner in her recovery. She had been through an intense, major surgery called an extrapleural pneumonectomy that removed one of her lungs. She had gone through chemotherapy and radiation. She had spent months in treatment, but despite everything that she faced, she got through it. I helped her in whatever way that I could. Those moments spent in darkness were the toughest, but I’m glad that we got through it together because it has made us stronger as human beings, parents, spouses and friends to one another.

Today, Heather is cancer free. While mesothelioma takes 95 percent of the people it infects, it didn’t take my wife. We have a beautiful family together, and we could not be more thankful for the blessings we’ve been given. Now, we wish to give back by sharing our message of hope and success against cancer, in the hopes of inspiring others in their own battles today.


 

Thanks to Cameron for sharing a winning story.  You can visit him at http://www.mesothelioma.com/blog/authors/cameron/

There is a great video of this story that is well worth checking out.  Find it at

http://www.mesothelioma.com/heather/#.Ubp-bfk3uSo

 

May is Better Hearing Month: Children and Hearing Loss

May is Better Hearing month and the following is a guest post from John O’ Connor.

 

Menires Disease : May is Hearing Awareness Month

In the past 30 years, the number of people suffering from hearing loss has doubled.  There are 738,000 people in the U.S. who have experienced significant hearing loss.  Hearing is something that people often take for granted.  When people think of hearing loss, they often think of it as condition that only affects the aging population.  People aren’t always aware that the condition can affect toddlers, babies, teenagers and adults.  People can be born deaf or develop hearing problems as they age.

Children of all ages can suffer hearing loss.  Approximately, 15 percent of children between the ages of 6-19 years have suffered some form of hearing loss in at least one ear.  Depending on the severity of the hearing loss, a person can either wear a hearing aid or learn sign language.  A hearing aid allows sound to enter through a microphone and the sound is amplified with a processor, which redirects it into the user’s ear.  The sign language option is for those who are hard of hearing and cannot hear others from any distance.

Children with hearing loss can have a hard time mastering grammar, vocabulary and other communication skills.  Children can be victimized through bullying by their peers in school for having to wear a hearing aid.  Children who have to wear these hearing aids may shy away from pursuing their goals as a result of the condition.  Children may be empowered by stories of people with hearing loss who have gone on to do great things despite their condition.  Musician Pete Townshend was an accomplished songwriter and guitarist for The Who.  He suffers from partial deafness and tinnitus caused by constant exposure to loud music.  Tamika Catchings suffered from hearing loss as a child.  She went on to become an Olympic Gold Medalist and secure multiple WNBA titles as a basketball player.

EarQ, a supplier of hearing aids, has developed an awareness campaign aimed at helping people suffering from hearing loss.  The “HearStrong Champions” campaign looks for people doing great things despite their limitations and hearing problems.  These people represent the campaign, acting as role models in the community.  They encourage people to pursue their dreams and goals in spite of their condition.

Children with hearing loss can enjoy a perfectly normal lifestyle despite having a hearing condition.   Parents must be proactive and seek routine screenings for their children to protect their hearing.  A parent must also be prepared to openly discuss the condition with the child and assure them that their condition won’t affect their quality of life in anyway.  Technology, knowledge and perseverance can help anyone overcome any challenges they face as a result of the condition.

Hi my name is John O’Connor, I am a father, outdoorsman, sports enthusiast and passionate about living a healthy lifestyle.  Check out my new blog at bloggingwjohno.blogspot.com

Meniere’s Disease and Ginger Root

Meniere's Disease and Ginger Root

A reader asked me about the effectiveness of using ginger root to manage Meniere’s disease.  I haven’t used ginger root to help with Meniere’s disease specifically but get plenty of it in my diet as my wife tends to use it frequently in her cooking.

Despite not taking ginger root myself for Meniere’s, I can still share three points

  1. The first is that both my wife and my daughter are susceptible to car sickness. One thing they do to effectively combat car sickness is to chew ginger gum.  It works quite well for them.  Another substance often used to help car sickness is Meclizine which is often prescribed for Meniere’s disease patients.  So I think ginger root is worth a look if you are still seeking something to help you.
  2. There are plenty of studies which indicate that ginger is effective at reducing the ill effects of vertigo and nausea — both companions to those who struggle to control the symptoms of Meniere’s.
  3. I’m a huge fan of Dr. Weil and he is a big fan of ginger.  In his book, 8 Weeks to Optimum Health, he suggests that the reader take ginger during week 5 of his regimen.  He puts ginger in the class of tonics and suggests that you take it to increase your overall wellness.
Ginger can be taken in three different forms: candied, dried root and as a tea. The candied (or crystalized) form is easy to find in health food stores and can be eaten like…well, candy.  No one in my family likes it that way but there seem to be plenty who do as it is easy to find in that form.  Ginger taken as dried root can be found as supplements in the health food store.  Although ginger is non-toxic, taking the supplements on an empty stomach may cause heartburn.  Ginger tea is made pretty easily from grated ginger root, honey, and some hot water.  Do a quick internet search if you need help with the quantities.
If you have found success using ginger root to manage your Meniere’s disease, please leave a comment below.

Presenting the Final Results of the Meniere’s Disease Survey

In this final installment of presenting the results of the Meniere’s disease survey, I will cover gentamicin, low-sodium diet, acupuncture, exercise, homeopathy, and the meniett device.

Gentamicin

I haven’t had any experience with gent injections and don’t know much about them expect that they are painful to receive.  This is something that you must get from your doctor so they will not be self administered. Results show that some people have received some help from them.

Results of Meniere's Disease Survey: Gentamicin

Low-Sodium Diet

Based on the survey responses, a low-sodium diet is the most helpful for people who have tried it.  From the raw data, 46.6% of the people who have tried a low-sodium diet have benefited from it.  And noone complained that it made their condition worse.  If you remove the 16.7% of people who haven’t tried it from the group and combine the slight improvement group with the great improvement group, you get 44% seeing no improvement from adhering to a low-sodium diet while 56% have benefited.  While these are not overwhelming odds, they indicate that you have better than 1 to 2 odds of seeing some relief and this is the best odds of anything from the survey.

Results of Meniere's Disease Survey: Low-Sodium Diet

Acupuncture

Its no surprise that I am a huge acupuncture fan.  I use it to help with ailments other than Meniere’s too.  It comes as no surprise to me that the majority of people haven’t tried acupuncture.  It is just not a well accepted form of medical treatment.  I wish more Meniere’s sufferers would try acupuncture.

I repeated the exercise I did with the low-sodium diet responses, removing the “haven’t tried it” group and combining the “slightly helped” and “greatly helped” group.  Of those who have tried acupuncture, 77% report that it made no difference while 23% did receive some benefit.

If conventional medicine is not helping you find relief, I would encourage you to try acupuncture.  The real key to getting benefit there is to find a very good acupuncturist.  It will require that you do some homework but the upside is great.  You have the chance to get your regular life back.

Results of Meniere's Disease Survery: Acupuncture

Exercise

Like the low-sodium diet, this one has a strong positive component.  33.3% state the exercising helps their condition but there is also 10% that state that it made their condition worse.

The benefits of exercise are very easy for you to determine.  It doesn’t cost any money, just a little time and effort.  Give it a try for a few weeks and see how you feel.  If you feel better, keep it up.

Results of Meniere's Disease Survey: Exercise

Homeopathy

Its hard to conclude anything from the results of this section.  3.6% of respondents were worse off with homeopathy while 10.7% got a little better.  You can draw your own conclusion.

Results of Meniere's Disease Survey: Homeopathy

Meniett Device

This one was the poorest performing treatment of the whole survey.  Only 7.4% of respondents have tried Meniett devices and the devices didn’t seem to help or hurt.  To clarify further, this section of the survey got the fewest reponses (27) which puts those that have tried the device at only 2 individuals.

Results of Meniere's Disease Survey: Meniett Device

Well, unfortunately, there is no overwhelming evidence about what works and what doesn’t.  Such is the nature of Meniere’s disease.  But hopefully this exercise sheds a little more light on what is working for some people and what is not.   Maybe you got an idea or two of something new to try.

A big thanks goes out to everyone who took the time to respond to the Meniere’s disease survey.

Meniere’s Disease Survey: Supplements

I continue presenting the results of the Meniere’s disease survey.  This post will specifically cover the supplements.

Ginkgo Biloba

Ginkgo biloba comes from the leaves of a Chinese ginkgo tree. Ginkgo biloba is most popular for its ability to improve mental functions. It also works to help circulation related problems. Studies in Europe show that the active ingredients in ginkgo (terpene lactones and flavonoids) make the membranes of red blood cells more elastic and thus improve circulation. This improved function applies to the tiny capillaries in the ears.

For some people, ginkgo biloba has helped considerably.  The percentage is not great but it may be worth a try.

Results of Meniere's Disease Survey: Ginkgo Biloba

Bioflavonoids

I first learned about lemon bioflavonoids from “John of Ohio.”  Lemon bioflavonoids have the bioflavonoid, Eriocitrin, which dilates the small arteries in the ears.  Bioflavonoids have helped me but the survey results don’t make a strong case for them with only 3.4% of the participants claiming slight improvements.

Results of Meniere's Disease Survey: Bioflavonoids

Vinpocetine

Vinpocetine comes from the seeds of the periwinkle plant. It can be very beneficial to the delicate hearing cells of the inner ear. It is used commonly in Europe for Meniere’s disease and is advertised to help reduce tinnitus. It was also used in Russia years ago to help their cosmonauts combat vertigo.  Again, a small percentage of people have found some relief by taking vinpocetine but the results are not overwhelming.

Results of Meniere's Disease Survey: Vinpocetine

Vertigoheel

Vertigoheel (or Cocculus Compositum) is a European homeopathic remedy.  I first found out about it in John of Ohio’s post and tried it.  Like those taking the survey, it didn’t help nor hurt me.

Results of Meniere's Disease Survey: VertigoHeel
In my next post, I will finish presenting the remaining results of the survey.