Thoughts on Migraine Hypersensitivity

Thoughts on migraine hypersensitivity

I found a post on Hearing Health and Technology Matters that I felt would be of interest to many of you.

Thoughts on Migraine Hypersensitivity By On July 18, 2016

“As the director of a balance and vestibular clinic, I see many patients with complaints of dizziness, disorientation, and motion sensitivity related to migraine. We work closely with our neurology colleagues in managing these patients. The International Headache Society has an official classification of “vestibular migraine.”

to continue reading this article please follow this link: http://hearinghealthmatters.org/dizzinessdepot/2016/thoughts-migraine-hypersensitivity/

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.

Migraine Madness

headache guide 1a

My migraines are never under a 6, the average is a 7.5.  10 means you go to the Emergency Room.  Unless I was dying I wouldn’t go to the ER for a migraine.  I do not think they could help, and I do not want to labeled a drug seeker.

This post is personal.  No links to studies to back up what I’m saying.  Nothing more than what is happening to me.

On March 22nd I had a migraine.  Every day since March 27th, except 1, I’ve had a migraine.  Yes, I’ve had a migraine for 43 days out of 44.

This is not a medication rebound headache.  I have not taken medication for more than 15 days in a given month.

Can you imagine the days I haven’t used medication?

When I use medication I have Maxalt, Toradol, Toradol injections, …and well that’s about it for my rescue meds.  I am on others that are supposed to help keep these buggers away, but as you can tell, it isn’t working.

I’ve gone through a DHE protocol of 3 shots for 3 days.  During this time was the day I didn’t have a migraine.  I still had a headache, but it wasn’t a migraine.

Why is this happening to me.  Well I have a guess, but I don’t really know.

After I had my seizures my Neurologist told me that Topamax can cause seizures in some people.  This medication is used to prevent migraines, but it is also used for seizures.  So the thought is that the seizure drug I was on actually caused my seizures. I was on it for a long time before I got seizures, but there was this little hiccup problem with that medication right before I started having seizures that probably caused it to go crazy.  Our mail order pharmacy didn’t fill my prescription on time.  They had a problem with the prescription and didn’t tell anyone.  Things got so crazy I was off of my med for over a week, it may have been close to 2, when I finally got my prescription I just started taking the full dose, I didn’t think about ramping up.

So I ramped down and got off the Topamax and the seizures stopped.  I was off of the Topamax for less than a month when these migraines started.  I normally have about 15 migraines a month, some months a little more.  Very few months have I had less than 15.  I used to think the Topamax didn’t do a lot to prevent my migraines, now I am pretty sure it did.  Right now I’m so ready to go back on this drug.  If I have a seizure I’ll stop it.  (I wouldn’t say this if the seizures had been hurting me, but from all the tests, the only harm they cause if the twisting of my body.)  Unfortunately, I kinda doubt my doctor will be willing to take this risk.  Maybe there will be something better.

Today my neurologist called in another medication for me.  I’m to have 2 more DHE shots and take this new medication right before I go to bed for 3 days.  (I’m sorry I don’t remember what the medication is, I’ll find out when Stuart gets home with it.)

If this new medicine regimen doesn’t work I don’t know what the doctor will do.   I’m lucky that my neurologist specializes in headaches.  She actually runs a Headache Clinic.  I’m confident we will be able to get these migraines under control.  She won’t give up.

During this past month the vertigo has showed it’s ugly head again, but not as often as I would have thought.  I do question if this vertigo was Migraine Associated Vertigo (MAV) .  I’ve had a couple of attacks of rotational vertigo (where I see the world spinning around), most has been motion vertigo (where I feel as if I’m moving but I’m not).  Rotational vertigo is by far the worse.  I had a bought of that yesterday, but it wasn’t too bad.  The world would spin for a few seconds then for hours I’d feel like I was moving or that when I moved I had absolutely no balance what so ever.  Yesterday could have been MAV, I just don’t know.  It was a very bad day.  I woke with a Migraine at 9.5 on a 0-10 scale.  This causes me a lot of stress, stress causes a Meniere’s attack, of course that causes vertigo.  I’m leaning toward Meniere’s because my hearing was way off all day.

Most of the month I’ve been having motion vertigo, this was only the 3rd time I’ve had rotational vertigo.  I’m not sure why the rotational vertigo has calmed down, but I’ll take it.

I haven’t been around so much this past week, because the pain is getting to me.  I’m falling into Migraine Madness.

So, all my ramblings lead to one thing.  My head HURTS.

What’s this thing called “Vertigo” anyway?

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?

6 Signs Your Symptoms Could be a Vestibular Migraine

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.

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.

 

My Visit to John Hopkins

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?