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.  🙂

 

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

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

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.

 

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?

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

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

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!