Category: Vestibular Illness

Roller Coaster —– Down

On By WendyIn Chronic Illness, vertigo11 Comments

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.

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What’s this thing called “Vertigo” anyway?

On By WendyIn Chronic Illness, Meniere's Disease, vertigo8 Comments
vertigo caught in motion
me during a vertigo attack – photo by w. holcombe

There are different definitions for the word “vertigo” (noun – ver·ti·go \ˈvər-ti-ˌgō\)

Webster’s Dictionary defines vertigo as:
a feeling of dizziness caused especially by being in a very high place

1a : a sensation of motion in which the individual or the individual’s surroundings seem to whirl dizzily
1b : a dizzy confused state of mind

On American Family Physician’s site I found a great article, Dizziness: A Diagnostic Approach.  It describes all kinds of Dizziness, the different causes and treatments.

In it they describe vertigo as : (A) False sense of motion, possibly spinning sensation.

I could go on and give you different definitions, many would be a bit different from others, but the main thing they have in common, one feels as if they are in motion.

Vertigo is not just dizziness, it is a type of dizziness, just as lightheadedness, and disequilibrium are but it is more than what most people consider dizziness.

Vertigo is the sense of motion.  Most often it includes seeing a spinning sensation, it also include other feelings of motion including, a sense of falling, rising or being jerked in one direction.  These are not encountered as often as rotational vertigo. (Understanding Vertigo and What to do if you have it. – The Washington Post – 2014)

I thought I’d take this opportunity to tell you, as best I can, how vertigo feels to me.

I have rotational vertigo (seeing my surrounding spin around), and motion vertigo (I often feel like I’m moving when I’m not.  I will feel like I’m suddenly free-falling, or being jerked around.)

The best way I know to describe rotational vertigo is to give you an example most people understand.  Remember when you were a kid and you used to spin around and around until you fell down seeing the world spin around you, (if you don’t remember this, or have a loved one with vertigo, I encourage you to do it now to have a sample of what we see).  Now that you have that image, imagine seeing that but it doesn’t stop.  When you just spin around the spinning sensation stops in a few seconds, for me it can last a few minutes to a few days.  The average is about 4 hours.  When I have this type of vertigo attack I often get very sick.  Imagine motion sickness times 1000.  I will throw up for hours, it can get so violent that I will lose control of every bodily function.  It is horrific.

I used to have other motion vertigo every once in a while, now it comes much more often.  I often feel like I’m in motion when I’m not.  I’ll feel like I’m on a boat, I’ll even feel like I’m walking around while I’m sitting still.  In the past year I’ve started having vertigo that makes me feel like I’m being thrown around the room (the first time this happened I thought I was dying, after an Ambulance ride and spending over 9 hours in the Emergency Room I was told this is a different form of vertigo.  (freaky)  I’ve also started having feelings as if I’m free-falling, I can only imagine it’s how one would feel if they stepped into an open elevator shaft.  This is one of the most frightening things in I’ve encountered.

Rotational Vertigo is not always at the same speed.  Sometimes I see my surroundings spinning by in just a blur, during these attacks I always get sick.  This will include hours of vomiting and sometimes I will lose all control of my bodily functions.  It’s horrific.  Other times my surrounds will spin by at a much slower rate.  After having rotational vertigo for so long many of my attacks are not as horrific.  I don’t panic now.  I will stay as calm as possible and just watch the world spin by, mostly I’m really bored.  This is the time when my mindfulness practice really comes in handy.

I’ve learned if I focus on something about 12 – 18 inches from me I often don’t see things go by quite as fast.  If the spinning isn’t too fast I will watch TV reading the captions.  For some reason if I concentrate on the captions the vertigo slows down.  This does not happen if I try to read anything else, that just makes me sicker.

I used to throw up no matter what.  I may have mentioned this before, maybe not, but I’ve had 2 doctors tell me that if medicinal marijuana were legal they’s prescribe it for me.  So I’ve tried it to see how it helps.  I can honestly say that I believe it has stopped me from going to the ER many times for dehydration.  It stops me from throwing up.  That is amazing to me.  I very rarely throw up now.   It can also calm down an attack if I use it fast enough.  (if you’d like to know more about how I use this to help, feel free to ask, I will say that I never feel high, I use very little, just enough to help me.)

Now, do you understand more about what Vertigo is and what my vertigo feels like?

If you suffer from vertigo, do you have similar experiences or is your experience different?

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.

6 Signs Your Symptoms Could be a Vestibular Migraine

On By WendyIn Chronic Illness, Headaches, Invisable Illness, Migraines, Vestibular Illness9 Comments

migraine eyeAs I’ve written about before, I have vestibular migraines, with Migraine Associated Vertigo (MAV).   It is hard to diagnose this type of migraine,it’s also very difficult to figure out if your vertigo is coming from MAV.  I came across this article the other day and thought it was worthy of sharing.

6 Signs Your Symptoms Could be a Vestibular Migraine

Following are the Symptoms they talk about, please go to the actual article to read about each of these in detail.

1. You have a personal or family history of migraine.
2. You experience vestibular symptoms in the presence or absence of a migraine headache.
3. Your vestibular symptoms vary in their severity over time.
4. In an episode, you experience other classic migraine symptoms.
5. Your symptoms increase with exposure to known migraine triggers.
6. Your vestibular symptoms significantly reduce your quality of life.

From this article there is a link to a blog post on My Migraine Brain that I found interesting. Valerie’s Vestibular Migraine

I hope you will find this as informative as I did.

If you have any questions about my experience with vestibular migraines and MAV, please ask.  I’m happy to keep the conversation going.

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!

 

 

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?

 

 

An Article About Me…by Dr. Sanjay Gupta

On By WendyIn Chronic Illness, Meniere's Disease, Vestibular Illness8 Comments

I wanted to share with everyone that I’m featured in an article in Everyday Health.  It is titled How Vertigo Changed My Life.  I am one of two women featured in the article.  I’m thrilled that Dr. Sanjay Gupta, felt that the impact that vertigo can have on a person’s life needs to be brought to the attention of the public.  The general population does not know much about vestibular disorders, you just don’t hear about us very much.  There aren’t commercials for medications that will help us, or anything like that.  Vestibular disorders are kind of confusing, even to a lot of doctors.  I’m honored, and thankful that they asked me to be a part of this article.

I hope you enjoy the article.  It’s a short read.  Please let me know what you think.

How Vertigo Changed My Life

Two women talk about the debilitating effects of vestibular disorders.

For Anne Kirchheimer (left) and Wendy Holcombe, vertigo has impacted their careers and personal lives.

 

 

A Few Facts About Vestibular Disorders….with comments about me.

On By WendyIn Chronic Illness, Meniere's Disease, Vestibular Illness7 Comments

VEDA-BAW Poster-390163-WEB-1

Top Ten Facts about Vestibular Disorders      (This list is put out by VEDA.  The comments in bold italics are by me, all about me.)

  1.  The vestibular system includes the parts of the inner ear and brain that process sensory information involved with balance.  (however, your balance is controlled by your vestibular system, your vision and your sense of touch….but mostly your vestibular system.)
  2. Over 35% of US adults aged 40 years and older (69 million Americans) have had a vestibular dysfunction at some point in their lives.  (I remember my first vertigo attack when I was 30.  However, I had balance issues long before that, most likely caused because I had severe ear infections in my teens.)
  3. Vestibular disorders can be caused by disease, injury, poisoning by drugs or chemicals, autoimmune causes, traumatic brain injury, or aging.  Many vestibular disorders occur from unexplained causes.  (We don’t know what caused mine.  *shrug*)
  4. Symptoms of vestibular disorders include dizziness, vertigo (a spinning sensation), imbalance, tinnitus (ringing in the ears), fatigue, jumping vision, nausea/vomiting, hearing loss, anxiety, and cognitive difficulties.  (I just want to say that tinnitus can be a LOT more than just “ringing” in the ears.  I rarely hear ringing.  I normally hear buzzing, banging, roaring…all kinds of noises, I know one woman who hears music….”ringing” is just an easy way to explain it.  A lot of these symptoms are easy ways to explain them.  Your vestibular system is kinda complicated.)
  5. Vestibular disorders are difficult to diagnose. It is common for a patient to consult 4 or more physicians over a period several years before receiving an accurate diagnosis.   (very sad but true.  For a long time when I had vertigo attacks the doctors had no idea what was happening, I admit I probably didn’t describe it very well.  I remember once I had to have IV fluids because I was so dehydrated, my doctor was convinced I had food poisoning.  When I was finally diagnosed with Meniere’s disease it was a fluke.   I had been to the ER because I had been throwing up for over 12 hours and the doctor there said I was having vertigo and needed to see an ENT, this was the first time I heard the word, “Meniere’s”.  I was not diagnosed correctly.  The doctor didn’t do any test on me.  I could have had a brain tumor for all he knew.  Years later after a battery of testing at Duke, it was determined that I do have Meniere’s, but I also have other vestibular disorders.)
  6. There is no “cure” for most vestibular disorders. They may be treated with medication, physical therapy, lifestyle changes (e.g. diet, exercise), surgery, or positional maneuvers.
    In most cases, patients must adapt to a host of life-altering limitations.  (That’s a huge statement…there is NO CURE for MOST vestibular disorders.  I personally have had at least some type of all of the treatments mentioned…of course they are being very broad in saying what kind of treatments they are, but I use medication, have had physical therapy, and probably will again, I have extreme lifestyle changes…you would not believe how my life has changed…. I’ve had surgery many times, and I’ve had positional maneuvers…..whew…I will probably have more treatments in the future… at least I hope so, I’d like to feel a bit better than I do now.)
  7. Vestibular disorders impact patients and their families physically, mentally, and emotionally.
    In addition to physical symptoms such as dizziness and vertigo, vestibular patients can experience poor concentration, memory, and mental fatigue. Many vestibular patients suffer from anxiety and depression due to fear of falling and the loss of their independence.   (Most people do not understand how a vestibular disorder can cause so many cognitive issues, but it does.  With Meniere’s I’m not just afraid to fall, I’m afraid of having a vertigo attack in public…. this is horrifying.  I no longer fear the loss of my independence… I’ve lost it.  I can’t drive, I can’t go out alone, I use a walker, I can’t cook (it’s too dangerous with a balance disorder), I have a very hard time picking things up off the floor, I can’t take a shower, or bath without someone near by, just in case (often someone has to help me…. I don’t talk about things like this most of the time, and I often push through a lot of things when I’m around other people, but I pay for it later.)
  8. Common vestibular disorders include benign paroxysmal positional vertigo (BPPV), Ménière’s disease, labyrinthitis, vestibular neuritis, and vestibular migraine.  (personally I have 3 of the vestibular disorders mentioned here.  I have BPPV, Meniere’s Disease, and vestibular migraines.  I also have an unknown vestibular disorder….one that is causing me a lot of problems but the symptoms do not fit in with the other defined disorders.  I will hopefully be going to John Hopkins in the not too distant future to try to find out what this unknown vestibular disorder is and maybe how we can treat it.)
  9. In the US, medical care for patients with chronic balance disorders exceeds $1 billion per year.  (I have to admit, I always wonder where they get these numbers and what they include.   I have to say the treatment of my vestibular disorders has been extreme.  We are very lucky we have insurance.  Of course, insurance doesn’t cover everything.   To give an example of just how much one thing cost…. I had a vestibular illness take my hearing and cause me to get cochlear implants, they cost over $100,000 each.  That’s a lot of money.  Of course, most people with vestibular illnesses do not lose their hearing.  I’m a bit rare.  heh… but aren’t I always *wink*)
  10. The Vestibular Disorders Association (VEDA) is the largest patient organization providing information, support, and advocacy for vestibular patients worldwide.  (VEDA has been a go to place for me to find information.  If you want to know more about a certain vestibular disorder, I suggest going to their website. http://www.vestibular.org)

It’s just so hard sometimes…

On By WendyIn Chronic Illness, Meniere's Disease, Vestibular Illness3 Comments

This is a stream of thought post.  I just needed to talk and get some things out.  So no fixing of grammar or anything.  One thing I do want to say before you read this…..I’m not suicidal.

photo by w holcome
photo by w holcome

Is everything just so hard right now or is it the life through steroids?

I feel like I’m slipping away.  I don’t know who I am half the time.  I’m really not handling things all that well….yet in the next moment I am….then I’m not…then I am…then I’m completely melting down and that has been the last two days, and

I just feel like a weight is on me that I cannot lift and it is crushing me,grinding me down further into the ground past the point of breath….I’m buried alive….why, why cannot I still just not die.

Oh I am so ashamed to feel this way.  I am just so tired.  So tired of feeling the ups, the downs, the hope, the devastation when life kicks me in the gut over and over.  And I can’t believe I’m actually writing these feelings out here where everyone can read them.

I do not feel like this.  I don’t.  This is not how I handle things any more.  It has to be the steroids messing with me…it has to be….

But then…there has been so much loss lately…so much stress…and I found out yesterday that it is worse than I thought.

When you can’t hear very well…..let’s face it, I can’t hear at all without my cochlear implants on and working, and for a while now things haven’t been sounding right.  So conversations with my husband have not been as communicative as they normally are.  I have always been so proud of how our relationship has been so good, because we communicate so well.  When you can’t talk a lot, communication seems to fail.  He thinks I hear things I don’t.  I think I hear things he said differently.  And things simply do not get talked about.  I’ve been feeling like we just talking much about stuff….and when we do, things just don’t get anywhere, we just get a bit frustrated because I don’t understand things….well…I really didn’t understand something, and I got really upset about it yesterday.  I lost it, completely broke down, and I’m still spinning about it.

I thought our finances were doing ok.  Not great of course.  Tight.  We do have a mortgage and rent and everything.  But I thought we were ok, not in the negative ever month, being able to pay our bills…paying off credit cards….ect.  We aren’t.  We are still in trouble.  I’ve been spending money recently.  I’ve told Stuart when I was going to, or asked him….he didn’t say…”we really shouldn’t be spending”.  No I haven’t gone crazy, but I’ve spent when I didn’t need to.  We bought Christmas for our niece and nephew that could have cost half what it did.  He said, “It’s what we would normally spend.”  This makes no sense to me.  I’m so distraught.  He said….that in about a year we should turn the house over to the bank.  What?  and we can spend money on gifts???  I can buy things for me?  NO.   I knew we were in real trouble when Kiki started having diarrhea Friday night and Stuart said, “Oh Kiki please don’t get sick, we can’t afford it.”   What?  We discussed this before we got a dog.  If we couldn’t afford a pet, we should not have gotten one.  In my opinion, that is one of the worst things a person can do, and I know Stuart feels the same.  (I know we would have found a way if Kiki would have needed to go to the veterinarian, but that comment really scared me.)  We are in this situation because of me.  We have not been able to sell the rest of the stuff out of the house, or get the house on the market because of me.  No, the house may not have sold yet, but we are nowhere near even getting it ready.  All because of me.  I have gotten too sick for him to leave me alone to go to Durham and take care of things.

Now, how can I not feel guilt about being sick??  How can I not feel guilty for every doctor appointment I have?  How can I not feel bad about every extra thing we have to spend because of my illnesses?  How can I not feel bad about the trip we have to take to Duke….tomorrow?

We were talking about taking me to special clinics to look for more answers…..HOW could I even think of this???  I cannot allow my husband to lose everything for me.  I cannot allow him to work so hard at his life and never be able to own another home, never be able to retire, never be able to do anything but take care of me!  NO!  I will die first.   Please, please, let me die first.  I simply cannot live with this guilt or with this lack of quality of life.  How do you choose?  How do you choose?  Am I selfish and allow him to sacrifice everything for me, to help me…where it may end up there is no help, that I will end up just like this forever.  Or do I stop it.  and say enough.  I accept that life will be like this.

I have ups.  We’ve seen this, over and over.  I have some good times.  I had them not long ago.  I went for over 4 months feeling so much better.  Then I have times like this.  Will I be like this forever, or will I have the good times again.  Who knows.  I cannot predict the future, and I have to stop making up the worst case scenario in my mind.

We have to get more stable financially before I can allow him to sacrifice any more.  He does so much.  He is so exhausted so much of the time.  He doesn’t even see that it is because of me.  At least he loves his job now.  It is not draining him.  He really enjoys it.  I don’t worry about him so much there, but am I jeopardizing it?   I hope not.  Right now that is all I can do.  I have to trust that his boss really is as understanding as he says he is.  I have to believe.  I know his hours are flexible….I hope they are as flexible as they are making them.  He does a lot for me.  They work around my appointments.  Sometimes he leaves in a moments notice when I have an attack.  He always gets in the hours, he gets his work done….he says that is all his boss is concerned about.  But I am concerned.  I do not want him to risk this job over me.  (they did just put him in charge of a project, so they must believe in him, right?)

I have to be more involved in the finances and everything as often as I can.  I have been hiding.  I have not been able to handle the stress of it.  I do not deal with instability.

I’m not dealing well with not being able to do anything.  With not being able to help at all.

I’m simply not dealing well.

I do so wish we had some help.  I wish someone would give us a maid for a day as a Christmas present.  Or better yet, a maid service.  We used to have one, got a great deal on Groupon, had a maid come in just once a month, and it was perfect.  For this tiny place, I’m sure it wouldn’t cost much….well for some.   But it would get the deep stuff done.  Things that just don’t get done…..oh who am I kidding, a lot doesn’t get done lately.   (I think that’s why Kiki got sick, she found something on the floor, I swear she’ll eat anything she finds!)

I’m tired.  So tired.  Between the spinning head and the aching back, sleep is hard.  And now my brain will not shut off….I worry.

Please Please tell me I will be able to deal with this better again after I get off of these dang drugs!   But then will the awful vertigo get worse again?  I live like that either.

Why does it have to be so hard????