Tag: Meniere’s Treatments

Cochlear Implants Are Different

On By WendyIn Chronic Illness, hearing loss7 Comments

Most of us have seen the videos of a someone who has been deaf their whole life who  receives a cochlear implant and can suddenly hear. (or maybe people just send those to me)  The wonder on the their face is very touching and can be described as miraculous.  I will not get into the debate over whether or not a child, a person who has been deaf since birth, or a person who has lost their hearing should be implanted, that is a very personal decision that I have no right to weigh in on.

I do want to talk about how not everyone with a cochlear implant hears the same.   Recently I read an article that talked about having a cochlear implant, the person writing the article has been deaf his whole life, does not have a cochlear implant, and has chosen not to get one, I respect that decision.  Many of the commentors did not.  The comments on that article were argumentative and down right rude.  I found it very interesting, and a bit disturbing, that so many people assume that the experience they have with their cochlear implant is the same experience everyone would have. That simply is not true.

Yes, it is a miraculous thing to suddenly be able to hear.  (for some for the first time, for others to hear again, like me.)  The thing is, we have no idea what those people are hearing.  It could be words, or it could be clicks and whistles or a combination of many sounds.  If you never heard a sound before, would your face not show amazement?  We cannot judge what they are hearing by a simple video.  My audiologist told me that they she cannot understand what I hear, because she doesn’t have a cochlear implant and if she did, it could be totally different.  Some people who only hear little bits might be able to hear more later, some will not.  I met a lady at the Hearing Loss Association meeting who has cochlear implants and she can hear very little.  She cannot hear speech.  Her cochlear implants allow her to hear emergency signals, and not much else.  I am amazed at how well she gets by with reading lips, but she does get lost, and I do wonder how much she misses.  Often she simply smiles and nods, something I find myself doing way too often.  But she is very grateful for the hearing she has. I can’t imagine.  There are some people who hear almost as well as a normal hearing person, I can’t imagine that one either. 

So many people assume that cochlear implants are like hearing aids,  They are not!  Hearing aids amplify sound, but the person can still hear the way they are supposed to, just not as well.  In other words, no one had to implant something in their head to help them hear sounds.  “a cochlear implant bypasses damaged portions of the ear to deliver sound signals to the auditory (hearing) nerve.” (WebMD)  I have a device that was surgically implanted in my head and through the cochlea of my ear to deliver sound to my brain.  I do not hear with my ears.  No matter how high I put the volume on my cochlear implants it will not improve my hearing.  I know it’s confusing, but trust me, I’ve had both, a hearing aid and a cochlear implant, they are not the same in any way.

With my hearing aids I could turn up the volume and hear, no they were not perfect, I still had trouble with wind, noisy situations….all kinds of things.  The point is that the only thing that a hearing aid can do is amplify sound, if that will help you, that’s great.  I honestly wish I could still be helped with hearing aids.  I was not deaf without them, without my cochlear implants I hear nothing.

When I started losing my hearing I asked my doctor if I should learn sign language, he said, “You will never be deaf”  I realize now that he meant that even if I lost my hearing, he would simply give me a cochlear implant.  Which he did.  In hindsight I should have learned ASL (American Sign Language) before I started needing it.  I do not believe he understands the limits of the device

My audiologist warned me that some people do not hear speech with their CI’s, some only hear arbitrary sounds (clicks, whistles…)  She told me that people who have had hearing often do better than those who have never heard.  Their brains simply do not have anything to relate the sounds to, that isn’t always the case though.  (again, I know it’s confusing, we’re just different)  I heard speech immediately, but it sounded strange.  Everyone sounded like Mickey Mouse, luckily I like the Mouse, but it did get a bit annoying.  Gradually I began to hear people the way I remembered they sounded.  It’s a little funny that still sometimes when I meet someone new they will sound a bit like a cartoon.  And do not ever ask me to understand an accent.  

In the comments connected to this article people talked about how they could talk on the phone, play music, go to plays….and they spoke of them as if everyone with a cochlear implant can do those things.  I can’t.  I cannot talk on the phone, and those caption phones are a joke.  They don’t keep up with the caller and they get a lot of stuff wrong.  It’s more annoying than simply saying, “I can’t do it”  and that’s sad.  I miss music.  I miss music so much.  I am literally tearing up just writing those words.  I sing often, but I can’t remember the words to many of the songs, so I make them up.  I want to be playing carols this time of year, but alas it will not be.  I can’t hear it.  I can hear the melody, but the words, nope.  And that makes it just sound garbled.  I do so miss music.  I have been able to go to the movies thanks to the caption boxes, but it is difficult.  There is one theater close to me that is looped, (A  hearing loop (sometimes called an audio induction loop) is a special type of sound system for use by people with hearing aids and cochlear implants. The hearing loop provides a magnetic, wireless signal that is picked up by the hearing device when it is set to ‘T’ (Telecoil) setting.)  So the sound is piped right in my ears.  You would think this would be perfect, but it’s not, I still needed the caption box, but I didn’t use it near as much.  It’s an independent theater though, so I’m still out of luck when I want to see a popular movie.  I cannot imagine going to a live event that has not captions. 

Being deaf is very isolating, even with a cochlear implant.  It’s very hard for me to go out alone, to attend a party, to take a class, go to a restaurant, or…well, so may things.  I’m lucky I have a husband who helps keep me active, and understands my fears, many people do not have this.  If you know someone with hearing loss, reach out, they need all the friends they can get who understand their challenges.

This post got to be a bit longer than I intended, but I hope I’ve helped some of you understand a little bit more about how differently those of us with cochlear implants can hear.  Just because you know me, and my struggles doesn’t mean that the next person you meet with a cochlear implant will have the same issues I do.

 

If you’d like to know more about me and my cochlear implants you might enjoy this post  What it’s like to have a cochlear implant  Just remember, it’s only my story.

*The photo above is of me with my CI taken a couple of years ago.  Yes, it really is orange

Meniere’s Disease Update

On By WendyIn Chronic Illness, Meniere's Disease7 Comments

menieres-drunk-cartoon
cartoon source here

Over on Hearing Health and Technology Matters’ Dizziness Depot, Alan Desmond has been discussing Meniere’s Disease.  He published a 10 part series in 2012 on this subject but decided it was time for an update.  No it’s not going to take 10 parts.  Maybe half as many.  🙂

The first part discusses the use of Betahistine as a treatment.  Meniere’s Update #1  Betahistine.  Betahistine is frequently used in the UK but is not approved by the FDA for use in the US. There has been one important study that has shown that while harmless Betahistine it probably does little to treat Meniere’s.

The second part of the series focuses on Diet and Diuretics. There is a lot of good information in this section.  In the summary Desmond states “it appears the general sentiment is that it (a low sodium diet and diuretics) might help and it will do no harm.”

Part 3 discusses the use of the Meniette Device.  I had a guest write about her experience with the Meniette device, you can read about it here.  Desmond summarizes his write up saying, “the evidence keeps building that the Meniett device is a plausible idea, with little evidence of clinical effectiveness.”

Part 4 focuses on Endolymphatic Sac Surgery.  I had Endolymphatic Sac Decompression surgery, you can read about my experience here.  I was unfamiliar with some of what Desmond discusses in this section.  I found it very interesting.  I wish I had read it before I had my surgery.  As he said in the last paragraph,  “All of the procedures discussed have similar impact on control of vertigo symptoms, and that effect is not terribly different than the natural course of Meniere’s disease in patients that do not undergo any of the mentioned procedures.”

Part 4.5 Middle Ear Muscles and Meniere’s.  This part talks about something I’ve never heard of before.  It was mentioned in part 4, and it is expanded on here.  There is a procedure where you sever certain muscles in the middle ear to control Meniere’s symptoms.  You must read this part of the update to get a clear view of this procedure.  It’s very interesting.

Part 5, discusses the Natural Course of Meniere’s Disease.  So does it help to do destructive surgeries or would it be the same as the natural course of the disease?  If you look at percentages it’s about the same.  However, if you are having vertigo on a regular basis you are pretty desperate to do anything to stop it, so when a doctor tells you that a surgery may help, well you jump on it.  I know I did.  But I also know, in my case, that it didn’t really help in the long run.  If you have Meniere’s in one ear, the chances are your symptoms will greatly reduce in 2 years and will mostly go away in 8 years.  There is a small percentage where this is not the case, these people will continue to be symptomatic.  This does not include patients who are bilateral.

Meniere’s Update Finale – In the finale Desmond discusses the proposed causes of Meniere’s, and goes into detail on the migraine variant.

I also read a new study comparing steroid injections to gentamicin injections in controlling attacks of severe dizziness, and preserving hearing loss.  It found that steroid injections are equal in controlling vertigo without causing the hearing loss that gentamicin does.   I found this study interesting.  The study doesn’t mention that you may lose your balance function with gentamicin injections, it only mentions hearing loss as the destructive measure. Regardless, if intratympanic steroid injection are equal in controlling vertigo, then one would not need to resort to gentamicin injections.  This is good news for me, as the next step we planned to take is steroid injections, if it didn’t work we were going to talk about gentamicin (again, if you’ve been reading this blog, you know we’ve discussed it before).  This study changes that thought process.  I do not see the need to even discuss gentamicin if it will not control vertigo any better than steroid injections.

I think I’m caught up on all things Meniere’s for today.  I do think now might be a good time to give an update on me.  Recently I’ve been having a lot more vertigo and over all dizziness.  As the Summer went away so did my reprieve.  I may be talking to my doctor about steroid injections soon, but right now I’m handling things okay.  As I carry on, I’ll talk more about it.

How is everyone out there doing lately?  Check in with me.  🙂

 

#HAWMC Day 26 – Care Page for the Newly Diagnosed with Meniere’s

On By WendyIn #HAWCM, Chronic IllnessLeave a comment

Today is Day 26 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Time to use all your knowledge and experience as an Health Activist!
Create a “Care Page” for newly diagnosed patients.
Pull together 5 of your own blog posts that could help a newly diagnosed patient and
include 5 external resources you find helpful.

menieres-ear

I’ve written a number of blog posts that I think a person newly diagnosed with Meniere’s Disease would find interesting and, hopefully, helpful.  I think the best place to start would be a series on Meniere’s treatments, written by me and a few fellow Meniere’s warriors:  Meniere’s Treatments Part 1 – Diet, Meniere’s Treatments Part 2 – Medication, Meniere’s Treatments Part 3 – Surgery, Meniere’s Treatments Guest Post – Lin, Meniere’s Treatments Guest Post – Suzanna, Meniere’s Treatments Guest Post – Angelea.  And one post I thought might help new patients explain vertigo is, What’s this Thing Called Vertigo Anyway?

5 External Resources that may be helpful:

 

 

I’m participating in WEGO’s #HAWMC, if you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

 

#HAWMC Day 4 – Day of Diagnosis

On By WendyIn #HAWCM, Chronic Illness3 Comments

Today is Day 4 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Do you remember the day you were diagnosed? Perhaps you were scared, felt alone and surely you had tons of questions. Write a letter to yourself for the day you were diagnosed, knowing all you do now.

doctor-563428_960_720
pixabay.com

 

Dear Wendy,

You’ve been waiting for this day for a long time.  You’ve been diagnosed with Meniere’s Disease before, you just didn’t know that the doctor didn’t really diagnose you.  He didn’t know much of anything.  I’m sorry you had to go through that.  He didn’t even put the diagnosis of Meniere’s in your records, he only told you that you had it.  So today you sit there wondering….”Do I really have Meniere’s?  Do I have some brain tumor?  Is there something worse?  Could it be something minor and I’ve been suffering for 7 years because I have been going to a doctor who “doesn’t know much about Meniere’s”?  How could he have looked you in the eye and said that?  After he has been treating you for SEVEN years?  Now that it is in both ears he admitted he didn’t know much.  WTF?

So today you are here at Duke Medical Center to see this new doctor.  The doctor won’t even see you until you have been through a series of vestibular testing and had hearing tests.  Don’t be so nervous.  The tests aren’t as scary as they might be, the people who run the tests on you are very nice.  Don’t get me wrong the tests are intimidating, but the wonderful people there who are taking care of you make it much easier.

After the vestibular testing and the hearing test you go back to meet the doctor and you are diagnosed with Meniere’s.  The tests showed that you have vestibular damage, but there is no cause shown, and you have all the symptoms of Meniere’s Disease.  Unfortunately, you have it in both ears.  That is going to make it more difficult for you, but you are strong, you will be able to deal with it.  The disease is progressive.  You don’t know it yet, but you will lose your hearing.  That is not as scary as it sounds.  You deal with it.  Really, it will be okay.

The doctor is very understanding and doesn’t pull any punches.  He tells you that Meniere’s is one of the worst diseases he knows of that won’t kill you.  There is no cure.  There are some treatments, but not a lot.  He also tells you that it is a disease of random punishment.  He is refering to how the vertigo hits.  He explains it is likened to a soldier at war.  He knows he will be under fire, he just doesn’t know when.  He is always expecting it.  You will always be expecting the random punishment of vertigo.  It’s a horrible thing to live with.  But you will deal with it.  One moment at a time.

You learn all of this in one day.  Some things you were told gave you some false hope.  You will learn there isn’t a “normal” in Meniere’s.  There is a lot you will have to deal with over the next few years.  Know you will be okay.  The more you start to follow a mindfulness mindset you feel better about how things are.

The day of your diagnosis is just the beginning.  You have so many more days that are more important than that first day.  It was just the beginning.  You have no idea what kind of ride you are in for.  Don’t give up, even when it seems like there is nothing left.  (don’t worry I know you don’t give up….won’t give up!)  Focus on each day as it comes, don’t worry about tomorrow so much.  Try hard not to focus on the past.  It is over and you can’t get it back.  Focus on today, right now.  Make today the best you can.  But remember, we all have bad days.  Be gentle with yourself.

If you’d like to read more posts from today please check out WEGO’s Facebook page.  and don’t forget to check out Picnic With Ant’s Facebook Page too.  🙂

What’s it like to have a Cochlear Implant?

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease16 Comments

me with CII got my first cochlear implant (CI) in July of 2011, and my second in September of 2013.  When I was going through that time I wrote some about it but I’ve never talked about what it’s like to live with my cochlear implants (CIs).  A friend of mine asked me a few questions about it recently.  I’m here today to answer some of those questions.

What exactly is a Cochlear Implant? – To put it simply, a Cochlear Implant is an electronic device that can help provide a sense of sound to someone who is deaf or severely hard of hearing.  Let me see if I can explain this in my own words.  There is a part that is on the outside of the head that consist of a microphone a processor and a transmitter.  There is part that is on the inside that is the stimulator and the electrode array.  Sound comes into the microphone and goes through the speech processor to the transmitter  (the microphone and processor are the parts around the ear, the transmitter is the part that is on the outside of the head – it is held on by a magnet connecting it to the receiver/stimulator).  The stimulator is in my head, between the skin and the skull.  When the sound comes in to the stimulator it is then sent to the electrode array it then send impulses to the auditory nerves.  For a better explanation please go here.   (you can see the microphone, processor and transmitter on me in the photo at the top of the post – yes mine are orange -, and in the second photo below)

Cochlear Implant
This is a photo of the receiver/stimulator and the array. The array is the wire it is what goes in the cochlea of the ear and sends impulses to the auditory nerves. The stimulator is right on the inside of my head.  The transmitter connects to the stimulator by a magnet.

cochlear implant 2
This is a photo of a microphone, processor, and transmitter. You can readily see the microphone that hooks around the ear but there is one at the top you can’t really see. Many processors have microphones that are not readily seen.

Why did you get cochlear implants? – I lost my hearing due to Meniere’s Disease.  My hearing loss happened fairly quickly.  I was diagnosed bilateral in November of 2009.  In 2010 I got hearing aids, within 3 months of having my hearing aids I couldn’t understand anything out of my left ear.  That sent me on the tract to getting my first CI. (July 2011) By the time I received my first CI, the hearing in my right ear deteriorated to the point that my hearing aid no longer worked.  It took a little while, but I soon got my second CI.(September 2013)  Why did I get cochlear implants?  because that was the only way I would be able to “hear” anything.

How does a cochlear implant work? – I’m going to quote this straight from the National Institute of Deafness and other Communication Disorders site.  “A cochlear implant is very different from a hearing aid. Hearing aids amplify sounds so they may be detected by damaged ears. Cochlear implants bypass damaged portions of the ear and directly stimulate the auditory nerve. Signals generated by the implant are sent by way of the auditory nerve to the brain, which recognizes the signals as sound.”

Do you hear the same with a cochlear implant as a you do with normal hearing? – No.  Some people can understand words and sounds immediately, other people can only hear clicks and whistles.  It is a completely different way of hearing and your brain has to be retrained.  When I was first activated I could understand a lot of words from the start, but everyone sounded like they had been sucking on helium.  A lot of Donald Duck and Mickey Mouse voices were around.  Soon my brain started to remember what certain sounds sound like and I started hearing things the way I used to, for the most part.  When I hear something I’ve never heard before things can sound very odd.  Sometimes when I meet a new person their voice will get that cartoon sound until I get used to them.  The longer you use your CIs the better you hear with them, so 10 years from now I should hear better than I do now.

Do you now hear like everyone else? or is it odd?  What is your hearing like now? – This is the big question isn’t it? What is my hearing like now?   First I’ll tell you about challenges I have that a lot of people with CIs have, then I’ll tell you about my personal challenges.

I often can’t hear when someone speaks behind me.  If there is noise in the room I have a very hard time hearing.  (the newer CI’s are better for this, even though I have a newer CI I still have a hard time)  In groups it is very hard to keep up with what everyone is saying.  I am much better at conversing one on one.  I find I it is much easier for me if the person is facing me so I can read their lips while they are talking to me.  Between the two of those I do pretty well, but put me in a crowded room, and I’m lost.  Heck, put me in a room with more than one person and I can get pretty lost.

I think I might be able to hear better if I had more practice, I’m not sure.  Most of the time I only talk with Stuart.  I talk to my doctors.  I talk with our roommate, but I have a very hard time understanding him.  His voice is deep and I simply cannot understand most of what he says.  It makes things difficult, and sad.  But for the most part I don’t see anyone else.  Since we moved I haven’t met many new people, it’s hard to get used to groups and hearing other people when I don’t have the opportunity.  However, it’s also really hard to put myself out there in those situations because I get so lost and confused.  It does make meeting new people even more challenging.

Unlike most people with cochlear implants my hearing fluctuates.  Some people with Meniere’s who get CI’s end up still having fluctuating hearing.  Normally this happens when we have vertigo, our hearing will change and we need to get our CI’s adjusted.  My hearing doesn’t fluctuate just when I have a vertigo attack it happens every day.

Let me tell you what an average day for me is like.  I’ll get up and put on my cochlear implants, at first it takes me a little bit to get used to suddenly hearing sound.  Everything sounds a bit loud.  Then things will normally calm down and my hearing is stable for a few hours, but every evening my hearing will change.  It’s hard to explain what it sounds like, it gets hollow sounding and can sound way too loud.  I’m always telling Stuart to please be quieter.    Sometimes my hearing will change throughout the day.  I will often say, “I’m having a bad hearing day.”  I’m thrilled when I can say I’m having a good hearing day.

When I take my CI’s off the world changes.  Suddenly the only thing I can hear is my tinnitus.  (When I have my CI’s on the sound of the outside world helps me to not notice my tinnitus as much.)

I don’t know sign language.  I am working on learning some, but I haven’t been able to take a class.  At times Stuart and I can only communicate by me reading his lips and the little bit of sign language we know.

What is a challenge you wouldn’t normally think about? – This one is easy, having the headpiece suddenly fly off  because I got too close to something metal.  I have a bracelet that I wear sometimes and if I put my arm up around my head the CI headpiece (the transmitter) will jump off and stick to it.  It’s kind of funny, kind of annoying.   Other times when I want to lie down the headpiece won’t stay on.  This is annoying, especially when I’m sick.  I deal with vertigo better when I can hear what is going on around me since I can’t focus on anything, but during an attack I need to lie down, this often knocks my CI off and I can’t hear anything out of one ear.

Does it hurt? – Well the surgery hurt, but it wasn’t so bad.  It is actually an out-patient surgery.  Does it hurt on a day-to-day basis?  Not really.  If the magnets that are holding the headpiece to my head are too strong it hurts, but then I can change that.  I have screws that are very close to the surface right behind my ears.  One ear is worse than the other.  Most people don’t have this problem, normally when it heals fat and cartilage form around the screws and you don’t notice them, for me the screw is right up against the skin.  Sometimes this hurts.  Sometimes my processor and glasses will rub on them.  My sun glass arms are thicker than my daily glasses and they will cause that area to hurt.  If I can lie down on it, it hurts a bit.  Other than that, no it doesn’t hurt.  If I didn’t have the screw issue I really wouldn’t even notice I have them on.

Now I just have to share the funniest thing I’ve misheard due to my hearing loss–  Once I asked Stuart what Jesus was other than seen as a prophet and son of God.  The answer I heard was, “Jesus was Jimmy Buffett”  I busted out laughing.  “Whaaat?  Jesus was Jimmy Buffett??”  What Stuart actually said was, “Jesus was a Jewish Carpenter.”  I still get the giggles when I think about Jesus being Jimmy Buffett!

Update 5.10.2016

On By WendyIn Chronic Illness, Meniere's Disease, Migraines11 Comments

bird on handicap sign.jpg

It’s been a while since I’ve written a simple update about me.  Other than the migraine scenario.

What’s going on right this second?  My head hurts!  Yes I’m still fighting migraines.  I’m also having vertigo again, every day for the past week.  Yesterday I had it all day long!  It would go absolutely crazy, then it would slow to just barely moving, then it would go crazy again.  This went on for 12 hours.  I’m starting a regimen of steroids.  I don’t like being on steroids because they think that may be what caused the Avascular Necrosis in my hip, but I’m desperate.  My headache speicalist and my ear doctor both agree that steroids is the best thing to stop this cycle.  So here we go again.

I finished my Vestibular Rehabilitation Therapy.  It was a great experience.  I hope it did a lot of good.  I say hope because I wasn’t having much vertigo when I was going through therapy.  I was amazed at how well I progressed through the exercises.  On the last day, I had a vertigo attack start right there in the exercise room.  All I could do was hold on to Stuart and my therapist and squeak out, “I want to go home.”  A wonderful way to close out an otherwise great experience.  Since that last appointment I haven’t been able to do any of the exercises without falling.  I’m sad and pissed.

I’ve decided not to do the gentimicin injections.  There are so many risk.  When I’m at my worst I will think I don’t care about the risk, I’m willing to try anything, but I just went through a month of very little vertigo.  If I have the gentimicin injections I may never have good days.  I might not be able to learn how to balance without my ears.  And it does nothing to stop the vertigo caused by migraines.  What if most of my vertigo is migraine related?  I would still have vertigo and have to fight having no balance system in my ears.

My new ear doctor is thinking about trying steroid injections in my ears to see if it helps. (one ear at a time) But we will wait until I’m really bad again.  (If things keep up like this past week, we’ll be talking about this fairly soon.)  Steroid injections don’t carry the risk that gentimicin does.  It wears off, so if it works it often has to be repeated every 3 months. Since they think my Menerie’s is autoimmune, this is a good diagnostic tool, and if it makes me feel better, great.  Therefore, this is a good thing to try before deciding on gentimicin.  My new doctor is not a fan of gentimicin, but did not say he wouldn’t rule it out as a very last resort.

I’m sad right now.  Things aren’t going well.  Too many times I feel I’m saying, “I’m having a bad day.”  There have been days I’ve been so angry I felt like I didn’t know myself.  For the first time in a long time, I feel handicapped.  I hope all of this is part of my health not doing well, added stress and maybe menopause.  Not my bipolar medication taking a nose dive.  We’ll have to wait and see.

I have a couple of questions for those of you who have seen a naturopath or holistic doctor; Did seeing one help you?  How did you chose which one to go to?  I’ve been thinking about seeing one to try to get my over all health better, but I have no idea how to figure out who to pick.

As always thank you for supporting and caring about me.

 

Update On My treatment

On By WendyIn Chronic Illness, Cochlear Implant, Deaf, Meniere's Disease, vertigo, Vestibular Illness14 Comments

dandilion flower

My treatment for vertigo as laid out by the doctor at John Hopkins was to continue working with my migraine doctor to get my migraines and migraine associated vertigo (MAV) under control, go to vestibular rehabilitation therapy, and to have gentimiacin injections (a medication intended to purposefully damage the inner ear to stop dizzy spells in Meniere’s disease).

As you might recall I wasn’t thrilled with the doctor I saw in our city, and was not going to allow him to do the gentimiacin injections.  However, he did send me to vestibular rehab.

I’m still seeing my migraine doctor (a neurologist who specializes in headache pain), we are working on getting the migraines under control.  I can’t say I’m having fewer migraines but they do seem to be less intense.  It’s hard for me to tell if my vertigo is caused my MAV or if it’s a Meniere’s attack.  (If the vertigo is caused by MAV then  gentimiacin will not help.)  You may recall that I had seizures in February that caused me to be hospitalized.  My neurologist told me that one of my medications, Topamax, which is actually used to control seizures, can sometimes cause seizures.  It appears this may have been my problem.  I’ve since stopped taking Topamax and the seizures have subsided.

The vestibular rehab is going well.  I haven’t been to a lot of sessions yet, but so far so good.  When he did the initial intake exam he found I have still been having symptoms of Benign Paroxysmal Positional Vertigo (BPPV), and he treated it with the Epley maneuver.  This is something that the doctors I have seen ignored, the nystagmus (involuntary movement of the eye) is very slight, and the doctors didn’t see it, however, I felt like they didn’t believe me.  (I can’t remember if I mentioned these symptoms to the doctor at John Hopkins so I can’t say he ignored them.)  After this treatment I have had very little BPPV symptoms.  On the way home from the first visit I had a bad vertigo attack that last hours.  Since then my treatments haven’t caused an increase in my symptoms after leaving. During the treatments I often get a bit overwhelmed and wonky, but Ryan watches out for this and makes me take a time out.  I still have a few sessions to go before being reevaluated.

Now, about the doctor situation.  I will be seeing a new doctor on the 22nd, next Tuesday.  It’s kind of amazing how I found this doctor.  Advanced Bionics (AB), the company who makes my cochlear implants (CI), are going to have an event talking about new products just right down the street from me on Friday.  When I was sent a notice about it I decided to email to the AB representative for our area and discuss some of my issues.  I told her about how difficult it is for me to hear on the phone and wanted to know if they had a new product to help better with that.  They don’t, but I we both think most of my troubles there is lack of practice, since she has been a speech therapist for years she gave me good exercises to try to get me used to the phone.

I decided to tell her my predicament with not being able to get my CI’s program updated (called mapping) here when I have problems, even though there is an office that provides this service.  (they will only map CI patients who were implanted by their office)  As luck would have it, her husband works for this medical group.  He is an otolaryngologist.  He is new to the office and is working to get things better there.  He gave me suggestions about things and I decided to tell them about my problems with the doctor I’ve been seeing.  He told me he would be happy to take me on as a patient, or he recommended another doctor in the group.  He just wanted me to have a good experience there.  Wow.  I decided to go to see him.  He is very willing to confer with the doctor at John Hopkins.  He is also going to work to get my CI’s mapped at that office. Their rule is so people won’t go to a hospital just a few hours away and then expect them to do the follow up work.  I think it’s more complicated than that, but that’s a big part of it.    The big issue with me is that I wasn’t living here when I was implanted so I should be able to be seen there.  Is that just a lucky thing or what?  I’m so happy I reached out to her, you never know who may be able to help.

How am I feeling about my treatment?  Good, so far.  I’ll discuss it with my new doctor, but right now I think I’m going to put off the gentimiacin injections.  I’m doing much better right now and I just don’t want to take any chances that the vertigo is coming from my migraines.  I have been thinking we may as will have the injections in the ear that registered a 4 on the caloric testing. (the normal reading is a 21).  Since it’s that far down I want to know if it could help to go ahead and do the gentimiacin. We’ll see what he says on Tuesday.

So, that’s where I’m at right now.  Very grateful everything is going so well.

dandilion puff

photos by W. Holcombe 2016 all rights reserved.

My first Experience with Vestibular Therapy

On By WendyIn Chronic Illness, Meniere's Disease, Vestibular Illness2 Comments

balancing by wendy
“Balancing”  gesture drawing by wendy holcombe

Your vestibular system is the ear part of how you balance. You balance with your ears, eyes, and your body/feet.  My vestibular system doesn’t work so good, so vestibular therapy is going to teach me how to balance more with my eyes and feet.

When going into vestibular rehabilitation physical therapy last Thursday I had no idea what to expect, and to tell the truth I don’t have any idea what to expect at my next appointment, but I know it won’t be easy.

Ryan is my therapist (I may see another therapist at some point, there are 2 vestibular therapist there, but I would prefer to keep seeing Ryan, because I can hear him pretty well, and he is understanding about how to talk to me so it is easier for me to understand him), I’m impressed with him so far…very impressed.  I’ve never had anyone be so aware of my condition and so understanding.  No one.

He did a number of tests on me, said some things we need to work on…like the fact that my ankles don’t bend far enough.  Ankle flexibility and strength seem to be very important. Of course that makes perfect sense when a huge part of your balance comes from your feet.

I told him my experience of having BPPV for 11 days this past summer but by the time I got in to see the doctor it stopped the day before, the doctor didn’t want mess with it then for fear of starting it again, so they didn’t actually do the test.  I explained that since then I’ve had trouble turning over in bed, and at other times, but I’ve been tested twice since then and it was negative.  He tested me…it was positive…it was slight, but it was there, he also listened to me about when the symptoms started, he didn’t just look at my eyes and when it didn’t start jumping around immediately say, you don’t have BPPV.  He really listened and payed attention.  He then did the Epley Maneuver on me and I feel so much better. (I want to note here that the Epley Maneuver does not treat every type of BPPV.) I will probably need to be treated again, but not being jarred awake by spins when I turn over is wonderful.  I get a tiny bit now and then, but it doesn’t wake me up.   Happy Dance!

There was a point in the test where he had me stand and close my eyes..I was VERY nervous….meaning inside I was freaking out, he asked me to take a step and I…well I just couldn’t!  He encouraged me and told he he had me and I wouldn’t fall (in my mind I thought, “yeah, this little guy is going to catch this big old woman…in his dreams!”.  Out loud I broke into tears and said, “I don’t do the dark.”  I should have explained, I’m not really that afraid of falling, yeah I might get hurt, but that isn’t nearly as scary to me as the vertigo, and the dark can trigger vertigo…I don’t do dark.

My anxiety is so high.  That is so not a good thing.  Anxiety can cause vertigo. Vertigo causes anxiety.  There’s a bit of a Catch 22 there isn’t it?  I have noticed I do not like it when someone says that I’m anxious.  (Yep, he said that)  I get defensive. I want to scream, “If you had this would you not react like I am?”  I feel like being anxious is a negative thing, therefore they are telling me that I’m not dealing with this as well as I could.  I know I’m much more anxious than I used to be, panic mode, almost constant fear…it’s hard, really hard.  (No, I have not been keeping up my mindfulness practice, and yes I started meditating again this week.)

It was a fairly long intake appointment, all the testing, background questions….he was surprised I hadn’t had this kind of therapy before.  That’s because, most of the people he sees have not been living with a vestibular disorder for this many years before getting vestibular therapy for the first time.  *scrunchy face*

He warned me that this isn’t going to be easy, that I will probably be nauseous a lot, but if I can hang in there it can really help.

My homework…when I got there he noticed that I don’t move my head much when I walk, so my homework has been to look around. Open my visual range, turning my head. Of course, always using my walker.

I had a pretty big vertigo attack that started on the way home, and I felt horrible the whole next day.  I even fell down, I’ve only fallen once since my hip replacement until now.  (Really I kind of slid down the wall, I felt myself getting really bad, so instead of trying to race to a chair or something, I leaned on the wall and just slid down.  I’ve found that to be pretty safe.)

I’m trying to do my homework and look around, but it’s hard, moving my head really makes me sick.

I go back on Thursday, yep tomorrow, we’ll see how it goes.

He wanted to see me twice a week, but we asked if I could go once a week with homework. Hubby has to take me everywhere and I’m trying to reduce the amount of appointments. His work hours can be flexible, but it’s much better if he works somewhat normal hours, and I don’t want to exhaust my poor husband, being a caregiver is hard.  Ryan said that he would give me plenty of homework!

 

 

The Future is Scary, with a side of Hope.

On By WendyIn Chronic Illness, Invisable Illness, Meniere's Disease, Migraines12 Comments

It seems appropriate that I’m writing this on the eve of a new year, what better time to look toward the future?

For me, contemplating the future is more than a little scary…. let’s just say my anxiety about it has been more than I ever thought was possible.

After my illnesses changed my life, I learned about Mindfulness Based Stress Reduction (MBSR), it struck me how it has helped many people in many aspects of life, but mostly I was struck by how much it often helped people who are ill.  I had already learned of mindfulness during my studies in Buddhism, and while practicing yoga, but I admit I didn’t practice it regularly.

Over the last few years I’ve learned more and more about mindfulness, as I continued to studied Buddhism and MBSR, I’ve worked hard to live my life in the moment.  I don’t dwell in the past, (all of that is gone)…. I don’t worry about the future, (that hasn’t been written yet)…I try hard to live in this very moment, because that is all we truly have.

Yes, at times I still have moments when I get upset that I can’t do what I used to, and get upset about what might happen…but I don’t dwell on it.

Then we started making plans… how we are going to try to make things better for me….decisions about this unknown future, decisions that I have to make. Suddenly, I HAVE to look at the future. I HAVE to think about it.  And it really scares me.  Suddenly, I’m scared about being like thbe mindful of the futureis forever.  I thought I had accepted that and was okay with it.  Not that I was giving up, just that I accepted things if they didn’t change.  At least that’s what I thought, but actually, I thought I was going to be like this forever, I had come to terms with it, and now, that may change.  Now, I suddenly have options….plans.  I am having a very hard time not being anxious about the future.  I’m even thinking about things from the past. I keep thinking about all that I can’t do now, and how much my life has changed, and I keep wondering, could I get some of that back?  The main thing I know is that, I don’t want to lose myself in this quest to get better.  I don’t want to be afraid.  If I don’t get better, I need to know that’s not the end of the world.  I don’t want to start having to accept all of this all over again.

Each day I have begun to get more and more upset about things I simply can’t do.  As usual, most days all I can do is go from the bed to the chair in the living room.  But I tried hard not to let this get to me before.  I tried hard to make the most out of every moment…no matter what.  I’m trying now….but I am not doing as well as I have been.  Then I hear the voice in my head….Be Gentle With Yourself.  and I Breathe.  I am doing the best I can.  Yes, I’m a bit overwhelmed right now.  Everything is changing, all of a sudden, it’s going to take me a minute to keep up with it….deep breath….and I must remember, it still has to happen one moment at a time.

Okay, let’s move on from this and let’s talk about what the plan for my future is right now.

I was going to write a post right after my visit with the new ear doctor here in town, but I decided to wait until after the tests and the results.  I was supposed to get those yesterday, but I had to reschedule my appointment,  guess who was too sick to go?  Surprised?  I’m not….I have cancelled so many appointments because of vertigo, you just can’t imagine.

So, I’ll give you a break down of what is going on as of now…..

I saw the new ear doctor here.  So far he seems pretty good, I was impressed with his knowledge about Meniere’s, and he is very willing to work with the doctor from John Hopkins.  He suggested I start taking a low dose of Valium twice a day to try to keep my vestibular system calm.  He wants me to keep track of how much Sodium I’m eating.  (Okay, I laughed at that.  I know I don’t intake much sodium but since I haven’t been keeping a record he was not convinced.  I have been eating a low sodium diet for years, I know how much sodium is in almost everything, I don’t eat processed foods, and if I eat out I order everything without seasoning….yes I know that is boring, but it is safe with all of my food issues.  So I tracked my food since I saw him, I admit I was curious too, the results?  I normally consume just under 1000mg a day, I haven’t been over 15o0mg in any given day.  They say a low sodium diet is 2000mg a day.  I don’t think I have a problem there.)   I’m starting vestibular therapy on January 12th, we’re going to start training my eyes and body to balance without my ears.  I am to continue working with my headache specialist to get my migraines under control.  We will talk more about killing off the balance center after doing all of this and seeing if it helps.   Also after seeing the results of the vestibular testing I went through, we want to see if one of my ears is close to being dead already, if so we may go ahead and kill that one off, it may be causing much more trouble than the other.

(just let me say, I’ve been through these tests before and it wasn’t so very bad the first time, this time, it was absolute torture.  I cried.  I am not that kind of person.  If my husband hadn’t been back there with me, I don’t know how I would have gotten through it.  The person giving the tests told my husband she thought I was suppressing, because some things that should bother everyone I was not showing too much of a response on.  I thought that was strange.  I didn’t feel like I was suppressing, but after I’ve been going through this for so long, I’m sure I automatically try to not have vertigo when it is coming on.  I didn’t throw up, I almost did, I had cramps like dry heaves were coming, but no vomit.  Yay!  it really takes a lot to make me throw up now.  I rarely throw up during an attack now.  I get really nauseous, but I rarely throw up.  I always thought it was the meds.  Heck it’s already ruined my teeth and caused burns in my esophagus, I’m very happy it stopped.  Anyway….I’m very interested to find out the results of the tests, and upset I didn’t get to go yesterday.)

He does think my Meniere’s is definitely autoimmune.  Not that I want an autoimmune disease, but it does explain a lot.  Most of my doctors have felt I have symptoms that lead to one, but haven’t been able to put their finger on it.  I just have so much going on, and everything gets worse with stress, and gets better with steroids.  I often run a fever and no one can find a reason.  I have a marker for an auto-immune disease, but the one I have a marker for I do not test positive for….however, that is a red flag that I could have another.  They believe they simply do not have a test for the autoimmune disease I have, or I don’t test positive for it.  Like a friend of mine, has rheumatoid arthritis, but he always tests negative for it.  It is visible on all scans and he responds to treatment, but the test for it comes back negative.  So, in other words, we can’t prove it, but it is thought that it is an autoimmune disease, at least in my case.

So, there is the plan for now.  I don’t know what will happen.  How it will change.  Or anything right now.

I feel that there will be a lot of change around the corner.

The future is scary, but it holds promise, and hope…..something I haven’t had in a long time.

 

My Visit to John Hopkins

On By WendyIn Chronic Illness, Meniere's Disease, Vestibular Illness16 Comments

John Hopkins Outpatient
John Hopkins Outpatient

A couple of months ago I applied to be seen at the vestibular clinic at John Hopkins Hospital.  My records were sent, and an appointment was set up for December 27th, then it was moved up to December 11th. I must say, that was just fine with me.

I was scheduled to have a hearing test, and an Electonystagmography (ENG) test before seeing the doctor, but the doctor had to leave at 2pm (before my original appointment time) so he wouldn’t see the test before he left, so we asked if I could take the test at home.  You see, I had to stop any medication that might help with vertigo attacks before the Electonystagmography (ENG) test, if I didn’t have to stop these medications while out-of-town, I sure didn’t want to.  They said no problem, and I sure was glad.  I spent all of Thursday with vertigo, it was slow but it was there, I can’t imagine what it would have been like if I hadn’t been able to take my meds.  I also had an attack right before my appointment on Friday.  I had very little balance when I saw the doctor and my vision still wasn’t clear.  So he saw me when I was not doing well.  I think that’s a good thing.  How many times have you been to the doctor and all of your symptoms just magically disappear right when you get there?  That is so frustrating.

When we walked into the Outpatient Clinic it was like walking into an airport.  You checked into the front desk, we both got arm bands to prove we belonged there.  There were all kinds of signs and lines and directions, it was a bit to take in all at once.  Stuart said we were told where the elevators were (no I couldn’t hear much in there) and off we went.  When we got where we were supposed to be, I was very impressed that the check in and out areas were looped.  If you don’t have hearing aids of CI’s you won’t understand that.  If your hearing aid or CI has a telecoil setting, then the hearing loop provides a magnetic, wireless signal that is picked up by the hearing aid or CI when it is set to ‘T’ (Telecoil) setting, and the person using that setting can hear the voice right in their ear, no background noise or anything…it is really cool. So, we checked in and were told to go to the little waiting room in the back….that’s when it started to look like just a normal hospital setting.  The little waiting room, wasn’t all that little, but it wasn’t all that big either.  We were early, because I HATE to be late.  My first appointment was to get a hearing test…(snicker).  But soon a very soft spoken woman came out and said the doctor wanted to see me first, at least that is what Stuart told me she said, I had no idea.  She took my vitals, she asked for my weight and height…I got it mixed up as to which one she asked for first, because I couldn’t hear her and I was guessing.  Soon the doctor came in…..

We talked a bit about my history and he gave me some tests while in his office.  A bit of touching my finger to my nose and then to his hand, turning my hand over and over….ect. Some I could do okay, some I had trouble with.  Then he said he was sorry but needed to shake my head a bit.  I did not do well with that one.  I had to look at his nose while he shook my head.  One time when he shook my head Stuart said he saw my eyes jerk, he said it was “kinda freaky”.  The doctor asked me to stand up and I staggered a bit, he said never mind, sit down, be careful.  I guess that answered that test.

He then said he wanted me to have the hearing test and come back in to see him.  So I went out.  I still thought it was kind of funny getting a hearing test because I’m deaf.  I can hear a tiny bit in my right ear, but it is so little you may as well say, I can’t hear anything.  Soon the doctor comes to the waiting room and said, the Audiologist said that since I have cochlear implants she couldn’t give me a hearing test.  Yes, I kind of giggled inside.  Stuart told them over on the phone that I had CI’s and a hearing test was kind of unnecessary, but they said it was ordered.  Then the doctor said they could do the ENG test that I was originally scheduled for now, so he could see it.  Well, I had just taken meds to help me, since I was really sick after the test he performed.  I told him, that and how it said I wasn’t supposed to take any meds for like that for 48 hours before the test, and I’d already taken it twice that day.  He agreed the test might not be accurate under those circumstances. Oops, kinda wish I hadn’t taken my meds, but then again, I really don’t want to be so far from home when I have that test done.  I just know I’m going to be sick.

The ENG will show how much vestibular function I have left in each ear.  That’s pretty important right now…..because here’s what he thinks and the plan……

He said, it is obvious I have damaged vestibular function, it is just a question of how much, and how much in each ear.  He said he believes that, yes I have Meniere’s Disease, and Vestibular Migraines, and he said I have balance issues caused from getting my Cochlear Implants.  I noticed before, my vertigo got worse after getting my CI’s, but no one ever said that they could have caused some of it.

He said we have to treat these in different ways.  One is to get my migraines under control.  He likes that I’m seeing a Neurologist that specializes in headaches, so I’ll continue to see her and try to get the migraines more under control.  If we can’t do this, I may be taking another trip to John Hopkins to the Headache Clinic for evaluation.  The next thing he said was, I need to have vestibular rehabilitation to train my body and brain to balance without my ears.  He also said,  we need to kill my balance system in my ears.  We plan on doing this with gentamicin shots in both ears.  How much I need to have depends on the results of the test, one ear may already be dead, who knows…we just don’t know how damaged they are yet.

I will be seeing a new otolaryngolgist here in Charlotte on Wednesday, the 16th, and we will discuss all of this, and set up getting the test that the doctor at John Hopkins wants.  They will confer with each other on a treatment plan.  I guess, It will also be good getting a 3rd opinion.  The one from my doctor at Duke, the one from John Hopkins, and now let’s see what this doctor thinks.  This doctor knows I have been to John Hopkins and they will be conferring with each other.

There are a few questions I forgot to ask.  I know many of you are thinking….”You should have written them down.”  I did, really, I did.  But I wrote it on the paperwork they gave me, and I gave it to them…I didn’t have it after that….duh.  So I’m going to ask the new doctor.  It’s only a couple of things.  Nothing that would really change the plan I think.  I just want to know if they think my Meniere’s could be autoimmune, since it reacts so well when I am on steroids; and I’d like to know if they can answer why when I breathe in through my mouth, or drink anything cold or hot I feel it in my right ear.  That’s just weird.

I know I forgot to ask him these things because he was telling me things that had been thinking for a long time.  I actually asked for this treatment from my doctor.  But he wouldn’t do it.  He said it was too destructive and I could be so disabled I wouldn’t be able to do anything….ect.  The doctor at John Hopkins looked at me and said, “more disabled than you are now?”  He then asked if I had been given vestibular rehabilitation, and we told him no, that I asked for it, but my doctor had said that things fluctuated so much he didn’t think it would help.  He frowned, and said, he thought I could benefit a lot from vestibular rehab….so as I said before, we plan to do that first.   I went into the appointment with no expectations.  Actually, I expected them to tell me there was nothing they could do.  I had no real hope.  I told the doctor this, he said….No, don’t give up hope.  I explained, if I came in there thinking he was going to fix me and then he couldn’t do anything I would have fallen apart, if I came in there with no expectations, I would be thrilled if he could do anything.  He liked that.  We talked a bit more, and he insured me he would consult with my doctor here and answer any questions, and if I came back up there he would be happy to see me.  Then when I left he shook my hand and told me that it was a true honor to meet me.  That shocked me.  I told him it was so very good to meet him and thanked him profusely.  and went on my way.

A little about the trip itself…….The trip up to John Hopkins was pretty uneventful.  We stopped by Duke to pick up films that I’ve had done….you know, MRI’s, and such.   When we went through Washington, I saw the White House, the Jefferson Memorial and the National Monument in the distance.  I’ve been to Washington before and have seen those things up close, but it is still kind of magical to me.  I don’t know why.  Driving into Baltimore, it seemed so BIG.  The GPS told us to go straight when we should have gone to the right to get to our hotel and we ended up in a very sad part of town.  The buildings were mostly boarded up, yet there were a few businesses here and there.  I can’t imagine how they would ever do any business.  One place we passed there were a lot of nice cars parked on the road, and one burnt out car right in the middle of them.  Soon we made it back to our hotel.  It was just a very sad detour.

On Wednesday night…well I guess it was Thursday morning…Stuart shook me awake at 5am.  I thought, we don’t have to be anywhere, why is he waking me up.  I read his lips… FIRE!  I was awake then!!  He pointed to the alarm.  The Fire Alarm was going off.  I jumped up and put on enough to get out of the hotel…it was very hard for me to go down 3 flights of stairs!!  We were all out on the street and almost immediately there were 2 fire trucks on the scene.  No fire.  I never found out what happened.  I could not climb back up those stairs, and it took a while for them to turn the elevator back on so we had a bit of a wait.  That was fine with me.  I was very impressed that the fire department got there so fast.  The scariest part for me, if Stuart had not been in the room I never would have known there was a fire alarm going off.  I would have slept right through it.

Well, we had an adventure!  I told Stuart when we got back to the room, that with all this stress, I still hadn’t had a vertigo attack…that was amazing….so, we were moving to Baltimore.  But I spoke too soon.  Of course, I woke up with one the next day….and it lasted all day….but I spoke about that earlier in this post.

I was a bit disappointed that we didn’t get to do anything while we were there.  The one day I felt good, we wasted because 2 of my shirts didn’t get packed so I didn’t have enough clothes.  Curses.  The next day if I had felt well, we were going to do something.  We planned to go to the Aquarium, it wasn’t far from where we were staying.  However, of all the sites in Baltimore that there are to see…..after all it is home to one of my favorite poets, Edgar Allen Poe…I really wanted to see Charm City Cakes.  Yes, I wanted to go see a Bakery!  I didn’t even care if I went inside, I just wanted to see the building.  It is the bakery from the show Ace of Cakes….that isn’t on any more.

Duff Goldman
Duff Goldman – photo courtesy of Food Network

Duff Goldman started it..still owns it, has a second one in LA now.  He is often on the Food Network.  They do spectacular work, and I was just a huge fan of that show, and I just love Duff.  I could just eat him up.  I love the story behind his life, and I love his personality.   I regret that we didn’t at least drive by Charm City Cakes.  Yes, I am a goof.  I was sick, had a migraine, couldn’t focus worth a toot, had about 8 hours on the road ahead of me…and I regret that I didn’t stop by and see a bakery.  But hey, what is life without the little things?