Meniere’s Disease Update

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.  🙂

 

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Roller Coaster —– Down

I wrote my last post with just joy in my heart and feeling better than I had in as long as I can remember.

Then I crashed.

That evening I had a bout of vertigo, but I would not let it put a damper on my day.  It was a glorious day, and I will hold it in my heart.

But it’s over, at least for now.  Forgive me if this post doesn’t make as much sense as it should, I’m writing it as I watch the screen dance before my eyes.  This is incredibly difficult, but I felt the need to tell everyone I’m not doing that well and I wanted to talk about it.

For nearly 3 days now I’ve had vertigo almost constantly.   It may be slow at times where I just barely see the world moving, other times I can still handle it, it’s very hard to focus on anything and I can’t hear very well.  Then I have times like I did last night.  I was so sick.  I didn’t sleep until 4am.  I fought then nausea and vomiting.  I had severe stomach cramps and feel like I threw up all night, but I’m happy to say I didn’t.  (thank you to all my medications, and my darling husband who stayed by my side and chanted with me for hours).

I’m amazed at how much this has changed over the years.  When I first started getting vertigo, and when it only came around a few times a year, I would have been throwing up for most of the last 3 days.  I think the biggest thing that has changed is that I rarely freak out from it now.  I don’t fight it.  I know what’s happening.  I try to just go with the flow.  That doesn’t mean I don’t panic and that it doesn’t get to me, after a few hours I’m freaking out a bit.  What if it never ends.

This makes me not want to live.   I’m stuck in this chair, I can’t walk by myself, I can’t even use my walker most of the time without falling.  Stuart and I have to walk in tandem to take me to the bathroom.  I have my head on his chest and he walks backward to get me there.  This is not a life.

I can’t communicate well.  I can barely understand anything that is being said.  I can’t focus on anything most of the time.  Literally, right now I am typing on a computer that is swaying on my lap.  If I didn’t type by touch, you wouldn’t be reading this.

Last night I went to sleep hoping to not wake up.  Don’t worry I’m not suicidal, I just want live like this to end. The only way I can see this stopping is to not be here anymore.  The risk with the gentamicin is so scary.  I just don’t know what to do.  Plus finding a doctor who would actually do it, well that’s a whole other thing.

My new doctor has mentioned steroid injections.  I’m not sure it will do anything, but it can’t hurt to try.  If I can hold it together long enough to get it done.  And handle the side effects that are sure to follow for a while.

If I can get through more days like this.  Days where the world spins at what ever speed it wants.  Days where I can do nothing but sit here and wish for it to stop.  Days where the steroids are making me so hungry, but I’m so nauseous at the same time.  Unfortunately, the hunger wins most of the time.  So I guess I’ll sit here and eat and just pray that this there is something that stops this.  Something inside me that can slow this down enough that my eyes and brain aren’t so tired from trying to make sense of it all.

What do I do.  I try to remember that is will not always be this way.  It will end.  I will have some relief.  I have to believe.   I will admit that is my biggest fear, that it will never end.

If you walked in my house right now I’d look perfectly fine, minus the few tears on my face.   I’m sitting in a chair, staring at the computer, the TV is on in the background, hubby is sitting in another chair munching away.  I look like I’m perfectly fine.  But I’m fighting like hell just to hold it together.

This moment.  I can get through this moment.  I know I can.  The next moment isn’t here, things will change.  I know it will.  That is the constant in the universe, everything changes.  I will be in this moment, as crappy as it is, but I know it will change.

Sometimes that isn’t a good thought, I know this change could be worse.  I’m not good with worse right now.

When people who have never had vertigo here me say, I’m having an attack, they have no idea what I’m talking about.  However, I think when those of us who have vertigo mention, we had an attack, or we are having an attack.  We don’t think about how bad it really is, until it is happening to us again.  And we don’t think about how different vertigo can be for different people.  I have found myself thinking, “If you are having an attack, how could you possibly be typing?”  Yet here I am.  When I only had the most horrific vertigo attacks and I heard someone say they had vertigo and it wasn’t like mine, I wondered, “Do they really know what vertigo is like?”  Now, I can’t judge.  I understand.  Vertigo can manifest itself differently.  You can see the world rotate, at different speeds, it doesn’t always have to be so fast that the world is a complete blur, it can mean that the world is slowly rotating, I see things they simply will not be still.  Both are vertigo, I can just handle one better than the other.

Then I’ve found you can have vertigo where you feel you are moving but you don’t see anything moving.  Most people say they feel like they are on a boat or something similar.  I do have this kind of vertigo too, for me this is not as bad at the visual vertigo, for others this could be much more dramatic.  I was rushed to the hospital once because the vertigo made me feel like I was being tossed around the room and I was completely still.  I threw up a lot during that one, unfortunately I don’t think the ambulance attendant got out of the way of that once.  I knew something was wrong, I thought I might be dying.  I remmeber telling Stuart if I died I was happy everyone I love knows it.

When we got to the ER, they couldn’t do anything.  Pumped me full of more of the meds I already have at home and told me that vertigo can make you feel like that.  Inside I freaked out thinking, “I could feel like this again?”  Now I have this recurring vertigo where I’ll suddenly feel like I’ve stepped into an open elevator shaft and I just keep falling.  Stuart will hold me so tight and tell me I’m not falling, but I am.  I know I am.  I see the world rush by, I feel my body dropping.  It has happened once without him here and I thought there was no way I could get through it.   I did.  But I never want to do that alone again.  I never want to do it again at all, but that is kind of unrealistic.

Again, I want to assure everyone I’m not suicidal.  I do believe this will stop.  If it doesn’t there has to be someway that I can learn to live with it.

I didn’t post this when I finished because I started having much worse vertigo and I couldn’t see the publish button anyway.  I might be able to type by touch but I can’t see that dang little cursor.  This morning things are better. I’m still swaying, things are still a tad off, but it’s better.  In this moment.  that’s the only time I can count on.

Update On My treatment

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

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.

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.