Wednesday, August 26, 2015

Is it Hyperacussis or Recruitment?: When Say What? and Don't Yell! Go Hand In Hand

Hyperacussis or recruitment? Which one affects Meniere's patients?

They are 2 completely different things yet similar enough to be confused for one another.

www.hyperacusis.org defines hyperacusis as:

 A reduction of normal tolerance for everyday sounds. 
It is also defined as a collapse of the normal
range of tolerance for sounds that is present 
in otherwise normally functioning ears.

What this means is that normal everyday sounds at the normal everyday volume seem excruciatingly loud. As with Meniere's disease, there is no absolute known cause.  Again from hyperacusis.org:


 It can initially affect only one ear but generally speaking, within a short time, the condition is almost always bilateral. It can be mild or severe. Often, people who have hyperacusis also have tinnitus, or phantom noises in their auditory system (ringing, buzzing, chirping, humming, or beating).  Research has shown that about half of all people who have tinnitus, also have reduced tolerance for moderate or loud sounds, known as hyperacusis. No one is quite sure how many people in the world suffer from hyperacusis without tinnitus.   
Adults and children can develop hyperacusis: certain birth conditions are associated with hyperacusis, including Williams Syndrome and autism.  Since the auditory system connects the outer organs of hearing with the central nervous system, through a complex series of neural pathways, that literally pass through or coordinate with many diverse areas of the brain, there are endless possibilities for dysfunction that may contribute to hyperacusis.

In other words, the understanding of the mechanism of hyperacusis is often extremely challenging and it is yet impossible to specifically locate a single structural change that is responsible for hyperacusis.  There is no objective test for hyperacusis.  

It is a safe bet that during a vertigo attack what we suffer from is hyperacusis, the acute intolerance to sound.

Recruitment is a bit different.

www.hearinglink.org defines it like this:

Recruitment is a large increase in the sensation of loudness with only a slight increase in the actual intensity of a sound.  Even though quiet sounds cannot be heard due to the presence of hearing loss, louder sounds may quickly become uncomfortable to the listener as they increase in volume.  Recruitment is commonly associated with a sensorineural hearing loss and does not vary with emotions. 

Here is how it has been explained to me.

Inside your cochlea are thousands of microscopic hair cells. These cells are aligned in rows for each frequency. As you hear sounds, the first row of hair cells start to vibrate, or bend. As the sound continues to grow louder, the next rows begin to vibrate or bend. This continues until the loudest sounds are engaging all of the rows of hair cells.

When your hair cells become damaged, it is the ones that react to the quietest sounds that get damaged first, hence the reason you can't hear soft noises. As your hearing progressively gets worse, more and more hair cells along the line become damaged.

Now, when you have recruitment, what happens is that the damaged hair cells attempt to "recruit" neighboring hair cells to hear for them in the damaged frequency, as well as it's own, overloading the recruited hair cells. What else happens is that when all the hair cells at a certain volume are damaged, the sounds at that decibel level are skipped. You don't hear them at all. So when a sound reaches the level that you can hear them it gives you the startle effect. But you don't hear it at a soft level, you hear it at the actual volume that it is presented, which may be extremely loud.

For example, if your hearing is damaged to a level of 70 dB, which is a bit on the high side of normal conversation, you won't hear anyone whispering, but when they talk to you it will seem loud because you are missing all the soft sounds. Or if your hearing is in the profound hearing loss range of 90dB, the first thing you may hear is a horn honk, but not the car that it came from.

This also creates a problem when trying to fit a person with hearing aids.  The usable hearing you have between the softest sound you hear, and the loudest you can tolerate is called your Dynamic Range.  The narrower that dynamic range, the less benefit you are going to get from hearing aids because they have to be set at a level you can hear, but stop at a level you can tolerate.  If your hearing is at 80dB and the loudest they will set them is 120dB, you are not going to hear as well as someone who has hearing loss at 50dB.  The hearing aids can't make you hear something you are unable to, and it is almost impossible to compress all of the sounds into a very narrow range.

It is also known that a person with no hearing loss cannot have recruitment, so their sensitivity has to be hyperacusis.

As hearing loss associated with Meniere's disease advances, it is very likely that we suffer from recruitment on a daily basis. I know I did.

So, which is it, hyperacusis or recruitment?

Probably both.

'Til next time

Dennis

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


Wednesday, August 19, 2015

The struggles of being late deafened, and having your hearing restored

I know what you're thinking. "Here he goes again, lauding his Cochlear implants!" Well, maybe a little, but I want to write about some of the struggles that are presented by being late deafened, or losing your hearing later in life after having normal hearing for most of it.

I think the struggles and challenges are significantly different for those of us who lose their hearing later as compared to those who grew up with hearing loss. Here's why:

When you grow up with a loss, it is just part of your life. You learn early on how to deal with it. Maybe you learn sign. Maybe your entire family and circle of friends learn it as well.  Maybe you use hearing aids , maybe not. Whatever you do, it is just who you are and it's all you know.

Now consider the late deafened.

You don't know sign. No one around you does, either.  You don't know what accommodations are available, or even where to look. One day you can hear, the next you can't. You don't know how to react. Fear? Anger? Disappointment?  You may begin to isolate yourself from your own life. Most of the time, you don't have time to ease into this new life, it is thrust upon you whether you are prepared for it or not. What about my career? Family? Friends? How patient are any of these going to be?  You don't always have time to just shut your life down and immerse yourself in change needed.

It is difficult to explain to friends you don't see often that you are deaf, and in my case, how I went deaf. There are a lot of people that never knew I was deaf and are confused as to why I have Cochlear implants. It also doesn't necessarily help that getting my implants had such an immediate positive response. Many never saw me struggle the way I did for nearly a year. They never saw me unable to use the phone. They never saw me refuse social engagements while my family went without me. They never knew the internal battle I was having.  All they saw was me as a hearing person, then a person with Cochlear implants. They missed the whole time in between.

And there are still challenges. While most I talk to don't notice or say anything to me, there are those that go out of their way to treat me different, and not in a good way. I have some that like to accuse me of still not hearing and use it as an excuse to get upset with me.  The thing is, I miss very little, and I usually hear the entire rant.  Sometimes it gets to me, sometimes I can let it slide.

I still have some who refuse to call me despite the fact that with the technology I have at my disposal I hear very well on my cell phone now. Some very blatantly make a point of letting everyone within earshot know that "he can't hear on the phone", which is simply not true.

It is also a challenge for me to talk about my success with my implants. I always have to either start or end my discussion by saying that my results are not a normal response. Again, people didn't see me struggle, and in most cases I am the only one they know with an implant, so the results they see with me are automatically considered normal.  The truth is, I am a rare exception to the rule when it comes to implant recipients.  The vast majority take 6 to 12 months to retrain their brain to hear again. That is normal. Pushing the button to turn them on and hearing, albeit a little weird sounding, is not the the norm.

Typically when a new recipient is activated, or switched on, the first few programming sessions are used to get people used to more volume. My audiologist, at the second programming session even mentioned that. Then she followed it up by saying that that seemed rather pointless in my case and sent me home with a completely functioning programmed processor.

The success I have had also makes it a challenge to help those who are struggling more to regain their hearing. I never experienced it, how can I understand?  I was at a meeting for implant recipients recently and everyone was to introduce themselves and tell their CI story. When I told mine, I said I was a rare exception to the rule. I was a racehorse right out of the gate.  During a break a man came up to me and said he would give anything to trade places. He was out 2 months from activation and his word scores were only at 45%.  At 3 weeks, I was over 80%. For him it is hard work to rehab his hearing. For me, I struggled to find a reason to do rehab.

It can also be a struggle to watch people who can benefit from this technology reject it outright. I know the positives, not just my own, but of hundreds, if not thousands, of others that I have been in contact with in one form or another. I don't fault people for looking at it and then deciding it isn't for them, that's their choice. But to just dismiss it without any thought or consideration?

Some may accuse me of being overly upbeat about my results. At times I will plead guilty to that charge. I am getting better, I think, at not sounding the trumpets every chance I get. In reality, though, it has given me back my life. Maybe even improved upon it beyond where I started.

'Til next time

Dennis

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


Thursday, August 13, 2015

Progress

Better, Definitely better.

Things appear to be on the upswing again.

I don't wish this disease on anyone. The ups and downs that are associated with it are brutal. You can go from feeling very well to the lowest of lows overnight, or quicker, sometimes.

For a year I was doing very well. Hardly an attack. Then it starts to creep back. A dizzy spell here and there followed by ear fullness, headache, maybe some nausea.  You hope it's a blip. You pray it's a minor setback. Then it's all on. 14 attacks in a week. At least this time they don't put you down for the count.

The mind starts playing it's tricks again.

What did I do? What did I eat? What brought this on?

Even a bit of self loathing creeps in. Not again? I can't deal with this. It just isn't right to have to deal with this. Why fight it.

That's when you need the strength to stop, look at yourself in the mirror, and make the call to the doctor.

I was hoping for a quick trip in for another round of Dexamethasone injections in the ear to calm it down, but schedules just didn't work in my favor.  My doctor was in surgery that week, not the clinic.  So instead, we decided to attempt another round of oral steroids-prednisone.  That drug bothers me. The side effects I have had in the past have never been good but it was either that or nothing, short term. So I embarked on a 9 day course. 60mg for 3 days, 40mg for 3 days, 20mg for 3 days.

The last time I was on the stuff was for my second cochlear implant surgery. 60 for 7 days. I didn't sleep for 4 of them. I was so wired, that when I did lay down it was more a state of animated suspension than sleep.

This time would be no different.  After 1 day, I had my wife pick up some OTC sleeping aids. I am not sure they were completely helpful. It sure took a long time to get drowsy but I took them, and I slept.

About five days into the course, a team member from my doctor called to see how I was coming along, if the prednisone had done anything. Well, maybe.  While on the 60, the pressure in my ear greatly reduced. All but for 1 day, a day in which I had 4 small attacks, my birthday.

We discussed my symptoms on the phone, as well as my history. Along with Meniere's disease, I was diagnosed as having BPPV in March 2015.  He told me, that had I had no history of Meniere's, he would diagnose me with active BPPV and have me do the exercises again. My mini attacks fit that profile better. The kicker was the ear pressure. The fact that the prednisone lessened it showed him there was something going on in regards to Meniere's, but he asked me to try the exercises again as well.

We also discussed any possible links that may have occurred. This time I might have one, I thought.  The week before this whole mess started back up, I was bitten by a summer bug. I don't know what it's called, but they are common around raspberry plants. A big black ant like bug. I saw it bite me. 3 days later, my forearm looked like a war zone. I had nothing short of 20 to 25 infected pimples on my arm.  The interesting thing is, within 36 hours of the first prednisone tablet, they were healing, and by the end of the course they were gone.

Coincidence?

He didn't come right out and suggest a link, but he didn't dismiss it either. He just chuckled and said it was interesting they solved a problem they weren't intending too.

As for me, I can't help but think there was a link and I will be watching for reactions like this in the future. It may be time to keep antihistamines on hand for it.

As for the attacks, I am back to feeling well.  I did not notice any vertigo while doing the BPPV exercises, but did them for 3 days anyway.  I am back to virtually attack free.

That's the kind of progress I like to be part of.

'Til next time

Dennis

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

Thursday, August 6, 2015

Hitting the reset button



Sometimes you just have to do it. Push that reset button and go for a clean start.  You just need to let go of everything you have learned in the past and start fresh.

I am doing that, you can too.

I am in the process of getting information on a return to school to change the direction of my life.  I know I can no longer handle the hard, physical demands of a career that I have done in the past, so I need to look at what I can do in the future.

That is not the easy part. The easy part is knowing what I have no interest in.  I would not be good in a direct care of another person type career. I would not be a good mechanic, or tech repair. I just don't have a mechanically inclined mind. Art? Please. I have trouble drawing stick figures.

I also know what my physical limitations are. Being in situation where all my time is spent on a phone may not be the best choice. I can hear with my Cochlear implants, but it may be wise to not push my luck with tech failure, and people with an unfamiliar accent.  I have balance issues, so careers with lots of bending and twisting would wear me out. Been there, done that.  And I still have and will always have the risk of sponateous vertigo. Despite the fact that people have asked me if I was going to get a truck driving job, I think that would be a really, really bad idea. (seriously, I have been asked that!  I think to myself, "do you want to be the one in the car next to me at 65 MPH?!?!?!?")

I like numbers. Always have. I like working with computers, analyzing things. I like having things organized and easy to read and understand. It makes life simpler for everyone involved in looking at things.

So, as uninteresting as it may appear, I am pursuing a degree in accounting. It is not a huge leap for me. I have been the bookkeeper for my former business for over 25 years. I have used the latest and greatest computerized bookkeeping software for over 20. I have some formal training in accounting, and I have been building spreadsheets for many years as well. I know my way around. Plus the fact that I have 1 year under my belt as a paid tax preparer, and always done my own return, I think I can handle the coursework.

There is also an important issue involved in this that has to do with Meniere's disease.

I need to do something important, everyone has that underlying need, but not vital.  What I mean by this is, if you have a job where if you can't afford to miss a day or two, now and then, that is a job that is vital.  If it is something , that if you need to leave early, or miss a day or two, while important, it is not vital that you be there.  I believe accounting fits that better.  Yes there are report deadlines and meeting deadlines and such, but, if you miss it, the world is not going to end.

In my former career, I was vital.  If I didn't feel up to doing the work, chances are it didn't get done, or done correctly.  When that involves the feeding or care of livestock, you can't miss. And when you depend solely on family to cover, it becomes stressful, so you push yourself, even when you shouldn't, because you have no other option.

We all know vital careers. Doctor, nurse, power company line worker, police, firefighter.  I would also hope that the people involved in those careers realize the importance of being vital.  Most of these are life and death. You just can't miss.

I appreciate them. As a livestock farmer I was one. My animals depended on it.

And now it's time to hit the reset.

'Til next time,

Dennis

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