Thursday, May 28, 2015

The Dream Police

Ok, well maybe not THAT bad. But now that I have that song stuck in your head you have a little understanding of what people who lose their hearing later in life deal with at times.  It's called "phantom music" or "musical hallucinations" or "musical ear syndrome".

It is similar to an earworm (I just gave you one) only, instead of having the song stuck in your head, you actually hear it, sort of.

According to a musical hallucination is:

"the experience of hearing music when none is being played. Hearing sound that no-one else can hear is quite common, but the experience is normally of a simple sound such as a buzzing, ringing, or sizzling: this is known as tinnitus. In a small number of people however, these experiences can be more complex and emotive, and music can be heard.

Musical hallucinations have a compelling sense of reality and are often mistaken for real music until it becomes clear that none is being played. This is especially true when MH are experienced for the first time. The sounds are typically heard as short fragments of simple melodies - often from music heard regularly and familiar from youth and especially from hymns and carols. Individuals with hearing loss sometimes notice that the music in these hallucinations sounds as it did when it was first heard and not how it would with their current level of hearing problems than the sound of tinnitus."

I may not be able to hear my clock radio anymore when I go to bed, but i still hear it! Worse is when I think I hear talk radio in my sleep!

It isn't necessarily dangerous or even a serious medical problem to have, but it certainly can make it a challenge to try to get to sleep when you are being awakened by it!

If it becomes too bothersome, the good news is you can "change the channel".

Among the pieces of music that Sylvia was hearing in her hallucinations was Gilbert and Sullivan's HMS Pinafore, as well as music by Bach. Amazingly Sylvia found that by playing music herself, she was able to alter the music in her hallucinations.
"I can change the hallucination playing in my head to the music I am practising. This is particularly the case with the music of Bach - the hallucination will pause and then a whole page will start to play in my head, gradually curtailing itself until just a phrase remains and is repeated. That might then repeat a thousand times a day. It is as if I have my own internal ipod."
As Sylvia's hallucinations could be manipulated by playing an external piece of music that allowed the researchers to understand what was happening in her brain during hallucinations. They first identified pieces of music that suppressed her hallucinations and these pieces were then played to her while her brain activity was being monitored using magnetoencephalography MEG), which measures magnetic fields around the scalp as the brain processes information.
During normal perception of music what we actually 'hear' is a complex interplay of the sound entering the ear and our brain's interpretations and predictions. Normally the strength and quality of the input from the ear is so high that it dominates what we actually perceive however the brain fills in the gaps when the ears do not provide enough input.
"With , as in Sylvia's case, the signal from the ear becomes weak and noisy, like a poorly-tuned radio. The brain's predictive mechanisms therefore have to work very hard to make sense of what we are hearing. What we have found is that these processes sometimes end up running away with themselves to cause hallucinations," said author Dr William Sedley also of Newcastle University.
Dr Kumar added: "This also explains why listening to an external piece of music suppresses hallucinations. When external  is playing the signal entering her brain is much stronger and more reliable, which constrains the aberrant communication going on in the brain areas during hallucinations."
It can become quite intrusive in your life, but it does NOT make you mentally ill. It differs from psychosis in that what you hear is just music or people talking, not the sounds telling you to harm yourself or others.
So unless it is interfering greatly with your life, sit back and enjoy the music only you can hear, otherwise, according to  you can turn it off with hearing aids, anti-depressants, and anti-anxiety medications.

'Til next time
The dream police.  Just kidding!
Just a guy trying to live with an invisible, potentially debilitating illness

Friday, May 22, 2015

Grit, or just stubborness?

I have become too much of a thinker. Having extra time on my hands, since I am no longer farming, I find myself thinking about things, trying to understand many of the long held beliefs that people become stuck in, in this life.

One of those beliefs is that farmers are supposed to be farmers until the day they die or they are not considered "true" farmers.  At least that is what I always used to believe.  What other occupation is out there that puts success at the level of needing to work 80 hours a week for 60 years.

 In researching why it is so hard for farmers to retire surveys revealed the following:

"When asked about what they would miss when they retire or semi-retire, the most common responses are connected with lifestyle, described in several different ways. Iowa, Wisconsin and Australian farmers all noted the loss of an active lifestyle, open spaces, and the independence that farming allowed them to experience (Baker and Epley 2009, Barclay 2006, Kirkpatrick 2009). Another element of loss mentioned in the Wisconsin study was the loss of control, with one farmer saying it would be hard to give up control. One respondent said that he would miss “….breathing” because he’ll be dead when he gives up farming, which is the embodiment of the “dying with your boots on” creed of many farmers worldwide." From

After I decided to leave the industry, the response I received depended on the background of the person I was talking to.  From fellow farmers, in general, I would get a look of disappointment and asked, "so you quit, huh?". From non farmers, "you retired? Good for you. People retire from things all the time to do something else."  The first depicts failure, the second, at minimum,an acknowledgement that there is always a time to move on, and at best, a hearty congratulations on your past success, and encouragement for a bright future.

This was brought even clearer recently when a successful athlete decided to hang it up rather unexpectedly. I don't know him, I don't live in the area that his team played, I have never cheered for him.  What he said as his reason for leaving hit home anyway.  He said that the simple fact that he was thinking about his retirement, to him, meant it was time to move on.  I can appreciate that.

What I am having a hard time appreciating is people, for whatever reason, just won't move on.  We have all seen it, again, in athletes.  Just one more season, one more game, one more match, tournament, meet, and worst of all, fight.  I am sure it is the competitive spirit that drives most, but usually what happens is the throngs of adoring fans, who cheered the athlete so many times, just end up feeling sorry for them when they competed one time too many.  Instead of all the glory they should be remembered for, they are instead remembered for the beating they took.

The same can be said of us in our everyday lives.  I have heard it said about small business owners when they finally retire, or lose the business late in life. "They used to have such a thriving business."  Almost in pity.

I have come to the conclusion that I would rather change careers on my terms instead of my departure being dictated by something else.  Like the first athlete I mentioned, just the fact I was considering it probably meant it was time.

I realize you are wondering what any on this has to do with Meniere's disease. It has nothing, yet everything to do with it.  If you are at a point where you wish your life were less stressful, your career more fulfilling, perhaps it is time to look beyond just what you know.  You may not need a wholesale change, and certainly don't go quitting your jobs because of this, but maybe it is time to make some type of change. Further your education, get some type of accommodations at work, do something to change your perspective.  Life is too short to do what you have always done and be miserable. There really is no honor in "toughing it out."

'Til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Friday, May 15, 2015

Tinnitus: It's a brain thing

Insidious would be good way to describe it. Some hear cicadas, some a freight train, some can't describe it other than annoying.  I am not sure how to describe what I hear, but I sure wish it would go away!

Of course I am talking about tinnitus.

This is not a unique symptom to Meneire's disease. according to, 25 to 50 million Americans suffer from it to some degree.  Up to 16 million people will seek medical advice on their tinnitus.

There many causes of tinnitus, from excess noise exposure, to medical pharmaceuticals, to diseases, such as Meniere's. Often times, it is the first sign of hearing loss.

Many people falsely believe they are hearing it when in reality it is a result of false information in the brain.

 The exact biological process by which hearing loss leads to tinnitus is still being investigated by researchers. However, we do know that the sensory loss of certain sound frequencies leads to specific changes in how the brain processes sound. In short, as the brain receives less external stimuli around a specific frequency, it begins to adapt and change. Tinnitus may be the brain’s way of filling in the missing sound frequencies it no longer receives from the auditory system.

It is this fact that confuses many people when I tell them I am deaf but have ringing in my ears 24 hours a day to a varying degree. "How can you be deaf and still hear ringing?" Because it's a brain thing, not an ear thing.

It can become quite a menace in a person's life as well.

Tinnitus can be a debilitating condition, that negatively affects a patient’s overall health and social well-being. Even moderate cases can interfere with the ability to work and socialize. People with tinnitus often experience:
  • Distress
  • Depression
  • Anxiety
  • Frequent mood swings
  • Sleep disturbances
  • Irritability or frustration
  • Poor concentration
  • Pain (particularly when tinnitus is accompanied by hyperacusis)

In 2014, ATA conducted a survey of its membership, to evaluate how ATA members experience tinnitus. Over 1,100 people responded to the survey, providing perspective on how the condition affects their lives. Results of several relevant survey questions are included below.
On a scale of 1-10 (1=low; 10=high) how much does tinnitus impact your life on a daily basis?

On a scale of 1-10 (1=low; 10=high) how much does tinnitus impact your life?

What BEST DESCRIBES how tinnitus affects your day-to-day life?
What BEST DESCRIBES how tinnitus affects your day-to-day life?

Do you have any of the following associated health conditions?
Do you have any of the following associated health conditions?
Of course, the human impact of tinnitus extends beyond the patient. Family, friends, and coworkers may also be affected as they attempt to support someone with tinnitus. Loud ringing and a sensitivity to noise can make it difficult for tinnitus patients to socialize and communicate normally with others — even with spouses, children, and close friends. As such, supporters often have their own feelings of irritability, frustration, and confusion as they struggle to understand and help the tinnitus patient.

There are ways to attempt to lessen the impact of tinnitus in your life, but similar to Meniere's disease, there is no cure.  

To treat your tinnitus, your doctor will first try to identify any underlying, treatable condition that may be associated with your symptoms. If tinnitus is due to a health condition, your doctor may be able to take steps that could reduce the noise. Examples include:
  • Earwax removal. Removing impacted earwax can decrease tinnitus symptoms.
  • Treating a blood vessel condition. Underlying vascular conditions may require medication, surgery or another treatment to address the problem.
  • Changing your medication. If a medication you're taking appears to be the cause of tinnitus, your doctor may recommend stopping or reducing the drug, or switching to a different medication.

Noise suppression

In some cases white noise may help suppress the sound so that it's less bothersome. Your doctor may suggest using an electronic device to suppress the noise. Devices include:
  • White noise machines. These devices, which produce simulated environmental sounds such as falling rain or ocean waves, are often an effective treatment for tinnitus. You may want to try a white noise machine with pillow speakers to help you sleep. Fans, humidifiers, dehumidifiers and air conditioners in the bedroom may also help cover the internal noise at night.
  • Hearing aids. These can be especially helpful if you have hearing problems as well as tinnitus.
  • Masking devices. Worn in the ear and similar to hearing aids, these devices produce a continuous, low-level white noise that suppresses tinnitus symptoms.
  • Tinnitus retraining. A wearable device delivers individually programmed tonal music to mask the specific frequencies of the tinnitus you experience. Over time, this technique may accustom you to the tinnitus, thereby helping you not to focus on it. Counseling is often a component of tinnitus retraining.


Drugs can't cure tinnitus, but in some cases they may help reduce the severity of symptoms or complications. Possible medications include:
  • Tricyclic antidepressants, such as amitriptyline and nortriptyline, have been used with some success. However, these medications are generally used for only severe tinnitus, as they can cause troublesome side effects, including dry mouth, blurred vision, constipation and heart problems.
  • Alprazolam (Niravam, Xanax) may help reduce tinnitus symptoms, but side effects can include drowsiness and nausea. It can also become habit-forming.

Before going deaf, I had good success in masking my tinnitus with the use of either white noise or a simple fan running in my bedroom to help me fall asleep. Now that I am deaf, it is much less noticeable when wearing my Cochlear implant processor than when I am not wearing the processor. Not gone, but tolerable.  Some days it isn't very intrusive, others it is just miserable. It is something I had to learn to live with, but it is always there.

Of course, if it does indeed become a major nuisance in your life, seeking help is a good idea.

 Tinnitus doesn't always improve or completely go away with treatment. Here are some suggestions to help you cope:
  • Counseling. A licensed therapist or psychologist can help you learn coping techniques to make tinnitus symptoms less bothersome. Counseling can also help with other problems often linked to tinnitus, including anxiety and depression.
  • Support groups. Sharing your experience with others who have tinnitus may be helpful. There are tinnitus groups that meet in person, as well as Internet forums. To ensure the information you get in the group is accurate, it's best to choose a group facilitated by a physician, audiologist or other qualified health professional.
  • Education. Learning as much as you can about tinnitus and ways to alleviate symptoms can help. And just understanding tinnitus better makes it less bothersome for some people.

As with Meniere's disease, becoming an expert in it yourself is a huge step in being able to live with, and manage it.

'Til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Friday, May 8, 2015

Going bilateral with Meniere's disease. Say it isn't so!

Think having Meniere's disease is difficult? Try having it in both ears. This is the reality I have been living with since 2005.

When I was diagnosed in the early 1990's I was made aware of the possibility of going bilateral from the very start. It is believed that somewhere between 10-40% of us will develop it in both ears. Pretty low odds, but I never have been much of a gambler.  My thoughts, right away were "great, now I can sit around and wait to get it in the other ear."

Meniere's is just such a difficult beast. Not only is there no known cause or no known cure, there is also no way of telling who or when a person may develop it in both ears, or to what extent each ear will be effected.

Life had been cruising along fairly well following the Gentamicin injections in my left ear, from 1995 until 2005, then one day I couldn't hear. Not just a little, I mean put on the closed captions, because I cannot hear the TV even turned up as high as the volume would go.  Given my experience with my left ear, I knew what was going on and mentally prepared myself for the onslaught of attacks. They never came. For 3 weeks my hearing was all over the map. Some days the sounds would be excruciatingly loud, the next I could hear very little, and what I did was distorted.

I knew I had become bilateral but sought confirmation. Another round of the full range of testing and a consult made it official.  The only bit of encouragement I received was the Dr. telling me that just because one ear behaves a certain way does not mean the other will behave the same. For 8 years that was true.  It was at this diagnosis that I first heard, as a passing comment, about cochlear implants, with the Dr. simply stating that IF I  were to lose the hearing in my right ear as well, they could restore it with one. At that time, my hearing had returned to normal.  I was once again put on oral steroids, low salt diet, and sent on my way.

Eight years passed with no major attacks. Just long enough for a person to think you were out of the woods. It was still there, and I knew it, but it really wasn't on my mind. The only lasting evidence was tinnitus.  Life was good.

Then in June of 2013 all the misery I had experienced way back in the early 1990's returned. With vengeance.

The second Dr. I saw upon returning to Mayo this time was a Phd from the Otorhinolaryngology department. Following my hearing and balance evaluation, I spent over 2 hours being interviewed by this Dr.  There was very few health subjects left open. It was during this interview, and his questions about my specific attacks, that I blurted out, somewhat out of desperation, "I wish I could have an attack in your office so you could see what is going on." His reply was that it really wouldn't tell them much. Other than seeing the eye movements, they have no way of telling which ear is causing the problems. Yay! Now, not only can it not be cured, they can't even be sure which ear is the problem, so they don't know which one to treat! Oh, the joys of being bilateral!

I was asked many questions concerning headaches, both regular and migraine. Many of his questions seemed way off course, but it was definitely the most in depth interview I have had.  His conclusion, after the interview and the results of my audiology/balance testing: bilateral Meniere's, active in the right ear, with severely compromised function in the left, and all current issues coming from the right because of the level of damage to the left.

This, for my case, is a backhanded blessing. It means that all treatment can be focused on the right because there is nothing left in the left. It also means that treatment options are limited for fear of permanent damage to the right balance function. My hearing, as I write this, has already been destroyed in both.

The only thing I can now hope for is that the disease will not destroy my balance on the right side as well. Maybe it already has. I am not too eager to find out what the future may look like without any balance system.  For now I am living my life to the fullest knowing that more challenges may be on the horizon.

'Til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Friday, May 1, 2015

He Who Has Ears: Part 3: Ear 2, Day 3

I'm in love.

I never realized just how much I was missing the last 20 years. Having one ear was all I knew.  Hearing since getting the second processor activated has been nothing short of Wow! moment after Wow! moment.

Even though the sound quality isn't as good in my new ear as my old, when you put the two together, the things I hear are so much better than either of the ears alone.

The day after activation of ear 2 was a busy day. Some happy things, some sad, sometimes both at the same time.  I was in attendance at the funeral of my fathers first cousin. Her husband passed just 6 days earlier. A sad, trying day for the family. As I sat in the church pew, I was smiling. Why? Because for the first time since getting an implant 2 years ago, the organ sounded like an organ, not just noise.  The church is equipped with a room loop system for people with hearing aids and cochlear implants, so the can you a feature called T-coil to send the sound directly to their hearing aid/implant. Side note- A room loop is a wire placed, usually under carpet, which emits a magnetic signal from the sound system, which is picked up by the T-coil, a magnetic coil, in the aid/processor, bypassing the microphones. It send a crystal clear signal to the aid/processor.--The Pastor is the only thing transmitted through this loop. In the past, with one processor, the loop worked good, but I still needed to concentrate and maybe bump up the volume to understand. During the funeral, with 2 processors, it was so clear, I found myself checking the remote to see what I changed.  At the graveside, I heard the pastor, outside, in the wind, about 30 feet away. That was special.
The dynamic range of my "ears". Right ear is on the left, Left ear on the right

That same evening I attended a banquet in a noisy bar/restaurant and could easily hear the other people talking at my table.  It has to be having 2 ears.

A second map session is scheduled for a short time after activation. Mine was 2 days after.  The dynamic range I spoke of, in the new ear, went from 50 points to near 80.  My audiologist was more than a little surprised. Pleasantly so.  It changes the whole game plan. She said she usually, after the second session, adds 1 or 2 new programs, each progressively louder, to encourage people to push the volume they can tolerate.  She asked what I thought she should do. I said I felt there was no point in that and she agreed. We treated this programming like a full functioning map and I left with all 4 program slots full of 4 different type of programs to use in life. Not training programs. I still have rehab to do, don't get me wrong, but I am several weeks, if not months ahead of the "normal" plan of action.

Me with my surgeon, Dr. Colin Driscoll
I also had a follow up post op appointment with the surgeon.  I was surprised when he was the first one in the door. Usually I see the residents first.  After talking about my A-day number 2, I think his smile was as big, or bigger, than mine.  My surgeon is the chair of the department at Mayo-Rochester. He said he may not get to see me much for the implant anymore, and hoped he didn't get to see me much for my Meniere's disease, so I was more than welcome to just stop in and say "Hi". Now that is pretty neat. He is a super Dr. and a decent guy besides.

We even chatted a bit about Meniere's. I told him that I was not thrilled with the reason I went deaf (Meniere's), but thrilled with the technology to regain my hearing.  I asked him if I was correct in the fact that the implant will have no effect on the vertigo and other symptoms, that they were not related. He said I was correct. They are only related in that they are both issues with the ear. 2 different organs, 2 different nerves, 2 different purposes.  I also asked if it would be of any value to donate my "ears" to science after I am gone.  He was deeply touched that I would even consider such a thing and said, yes, it would help, and they would be of value.  We also discussed the report I had read that said the only way to be 100% certain that a person had Meniere's disease was post mortem. He said MRI's are getting close, but, as of now, post mortem is the only way to see the damage done.  It is just difficult to see inside of bone.

I have downloaded the donor forms to donate my temporal bones after I am gone.  My reasons are fairly simple. I have Meniere's disease. There is no cure. There would be no cure for many other diseases had people not donated in the past. We cannot hope for a cure in the future if no one donates today. I know how miserable this disease can be.  As a cousin of mine told me, perhaps my suffering today can help someone avoid it in the future.  I am quite positive the forms will be filled out and mailed.  If you are so inclined also, please check out the Temporal Bone Registry website at and download the forms yourself.  This won't benefit me or other Meniere's patients today, but may lead to one less miserable, incurable disease, in the future.

I now have three weeks to work with the programs I was given today before going back to the audiologist. A lot can change in the first three weeks. The first six months are the time of greatest improvement.  I am looking forward to one incredible ride!

'Til next time


Just a guy trying to live with and invisible, potentially debilitating illness