Health Update-a Swiftly Tilting Floor...

Haven't written in a while.  Basically, too tired to do it.  Today I feel like I'm on a boat and I most assuredly am not on any seafaring vessel at all.  I keep having these weird moments where it feels like the floor just suddenly tilted and then it will suddently feel as if it is tilting the other way.  Very disconcerting.  For example, last evening, I walked out onto our front porch which is basically a covered deck.  I immediately grabbed onto the railing because I felt like the porch was moving.  I was so convinced that it must be vibrations from either my dog or my children that I told my husband that surely he must feel it too.  He did not.  I was working on accepting this as another step in my "retrain my brain therapy" and then had a scary thought came to mind.  I've read of people with Meniere's reaching the endpoint of their condition where they are left with drop attacks.  These are the kind of attacks where you are suddenly without any warning thrown violently to the floor.  It's not vertigo but it is extremely dangerous.  Many people end up with black eyes, broken bones, bruises, etc.  Also, from what I understand the only cure for this is a VNS (Vestibular Nerve Section) where they cut the nerve in the offending ear completely.  I really hope I'm wrong about this.  I do plan on talking to my doctor about it when I see him again on April 20th.  If things get worse before then, I'll call his office and see what, if anything, can be done in the meantime. 

I have had some good days though.  I've been able to take the kids to the park a couple days.  It's hard to remember that now though when I feel so "swimmy-headed."

***not long after I typed this, I went to take a shower and this weird feeling happened again but with more intensity.  I felt like the shower floor was giving way beneath me.  Then it would feel like the shower was some kind of giant swing and my body was swinging/falling side to side and back and forth.  There was no visual changes and no spinning.  Afterwards, I was extremely dizzy and barely able to make it to bed.  I took a Klonopin and a Valium and felt "normal" within an hour or so.  What are these things and what the heck do they mean?

Ella

Today is Ella's 5th birthday.  We have a running joke around here that we aren't going to let the kids get any older because we want to be able to hug and squeeze them forever.  The kids always tease back that they will always give us hugs and kisses.

Last night, I was talking with Ella and I said, "when you wake up tomorrow, you'll be five!"  She got very sad looking and teary-eyed and said "well, I want to be 4 for part of tomorrow and 5 for the other part."  I said sure, fine, etc.  She said I want to be 4 and 5 for the rest of the days too and her lower lip started trembling.  I was dumbfounded.  What could be upsetting her so much?  I kept asking what's wrong...honey, tell me what's wrong.  She was starting to sob.  I begged her to please tell me why she was crying.  She said, "I don't want to be 5.  I want to stay little for you!!"  I grabbed her up and hugged her tight.  It was hard to hide my own tears at such a sweet and profound thought for a 5-year old.  I told her I couldn't wait for her to be 5 and that I couldn't wait to see all the things she would do as a 5-year old and that no matter how big she got, I was always gonna get my hugs and kisses one way or another.  She started to laugh then and seemed to feel better. 

It's amazing the thoughts that go through our children's heads.  You should never underestimate their intelligence and the depths of their thoughts and feelings.

Happy Birthday Ella...

go and be 5 with all the happiness, curiousity, and excitement it brings!

Meniere's book

I read this on the menieres.org forum.  Haven't read the book myself or heard of it but this describes what I am currently experiencing perfectly.  The discussion was on burnout.  Supposedly this paragraph describes what happens in the latter stages of Meniere's Disease.  The debilitating vertigo changes into what is described below.  Although, it doesn't apply to everyone.

"This is from her book: Meniere's Diesease What you need to know by P.J. Haybach

Vision
During the course of Meniere's disease, the brain has come to depend on vision for some of the information it used to get from the inner ears.  Any situation that removes or distorts vision may cause some disequilibrium or loss of balance.  Walking with the eyes closed, walking in darkness, trying to look through "stamed" up glasses or goggles, looking through a camera view finder or binoculars or a telescope all have potential for causing problems."

Latest Doctor's Visit

My head is so jumbled, I feel like I just need to let all this spill out in whatever form it will before it gets lost in the vast recesses in my head.

1. I'm still not allowed back to work.  Go back on 4/20 for hearing test and some sort of electrode test that will tell me if I am getting this in my good ear.
2. Dr. May thinks that my balance issues and dizziness is being caused by my right ear trying to compensate for my bad left ear.  I've been officially assigned some unofficial exercises to do to try to retrain my brain...ha!  good luck with that, it's a stubborn booger.  Basically, I am to purposely do things that make me dizzy so my brain can learn to deal with it.  Eventually leading up to walking across rooms with my eyes closed so I'm not dependent on them.  
3. I am to try to not take any valium unless I really need it and possibly cut my Klonopin dosage either to 2 a day or by taking half instead of a whole.  These pills depress the central nervous system therefore not allowing it to compensate.  I can't cut them out completely or I would fall apart, so to speak.
4. He does think my left ear is more or less "burning itself out."  When I asked if that meant I would end up with no balance function in that ear, he said not necessarily.  It would eventually reach a plateau and there's no way to predict where that will be.
5. He is optimistic that I will return to teaching.  Just have no way to tell when.  

That's about all I can do for now.  I am dizzy, nauseous, and exhausted.  Also stopped by the school today to pick up some more work.  Good news there is they have hired a retired teacher to come in and work for me.  That should mean he will pick up and do most of the work and all I will have to do is enter grades in our computerized grade system.  We'll see...

Details in the Fabric

 really love these lyrics and this song...

Details in the Fabric-Mraz and James Morrison
Calm down
Deep breaths
And get yourself dressed instead
Of running around
And pulling all your threads saying
Breaking yourself up

If it's a broken part, replace it
But, if it's a broken arm then brace it
If it's a broken heart then face it

And hold your own
Know your name
And go your own way
Hold your own
Know your own name
And go your own way

And everything will be fine
Everything will be fine
Mmmhmm

Hang on
Help is on the way
Stay strong
I'm doing everything

Hold your own
Know your name
And go your own way
Hold your own
Know your name
And go your own way

And everything, everything will be fine
Everything

Are the details in the fabric
Are the things that make you panic
Are your thoughts results of static cling?

Are the things that make you blow
Hell, no reason, go on and scream
If you're shocked it's just the fault
Of faulty manufacturing.

Yeah everything will be fine
Everything in no time at all
Everything

Hold your own
And know your name
And go your own way

Are the details in the fabric (Hold your own, know your name)
Are the things that make you panic
Are your thoughts results of static cling? (Go your own way)

Are the details in the fabric (Hold your own, know your name)
Are the things that make you panic (Go your own way)
Is it Mother Nature's sewing machine?

Are the things that make you blow (Hold your own, know your name)
Hell no reason go on and scream
If you're shocked it's just the fault (Go your own way)
Of faulty manufacturing

Everything will be fine
Everything in no time at all
Hearts will hold

Consulting the experts...

Just for the heck of it, I recently sent e-mails to two of the top doctors in the country for Meniere's Disease, Dr. Gacek and Dr. Hain.  I gave them a very brief description of my symptoms and history and asked for their opinions on what to do next.

Dr. Gacek of UMass suggested that my balance problems were the result of my good ear not being able to compensate for my bad ear and that I should go ahead and destroy the remaining function of the balance nerve in my bad ear through gentamicin injections or get a labyrinthectomy.  I am definitely not doing the laby.  But the gent injections have me intrigued.  I don't think my doctor will do them though.  He does not want to do anything destructive in case I do go bilateral.  He says he's seen too many patients either have the injections, or VNS, then go bilateral and end up worse off than they were.  I kind of agree with him but at the same time, I think to myself ...isn't my balance nerve being destroyed anyway by this damned disease?  I go back to see him tomorrow and will ask him again what his opinion is on this.  I also want to ask him what he thinks about "burnout."  Is it real? 

Dr. Hain suggested I pursue the MAV medications and exhaust all those possibilities before I do anything destructive.  Interesting to get two different opinions.  My doctor will likely have a third, completely different opinion.  I have asked him about the possibility of MAV before and he really doesn't think I have that but I may bring it up again tomorrow anyway.

I'm still struggling with dizziness, nausea, and balance issues.  Still trying to avoid MSG but that will take more time before I know if it works or not.  I'm so frustrated and things are about to get a lot more stressful at my school.  I'm still out of work, but my long-term substitute has to leave for at least 2 weeks, if not more.  Which means my boss is going to expect me to pick up a lot of slack.  This will not make my doctor happy at all.  He's already upset that I'm doing as much as I am.  I'm so torn.  Don't know what to do about all that.  Stress is probably my number one aggravator as far as this disease goes.

Sabotaged-hidden MSG

So my appetite is getting better but it's not great.  For this past week or so, the only thing I can stomach at lunch besides maybe some yogurt is some Cheez-It crackers that we buy for my kids.  These are flavored and really, really good.  My dizziness and nausea have been sooo bad lately.  Well, lo and behold, one of the frickin' ingredients in these darned crackers is frickin' MSG!  I'll cross that off my list of things I enjoy but can't have.  We'll see if it makes any major difference or not.  I'm still not convinced MSG is a problem but it makes sense in a lot of ways.  The timing of these dizzy spells does coincide with the crackers (I think).  Stupid me, quit keeping up with my food diary when our other laptop bit the dust. 

But now it is duly noted in this blathering blog of mine.  Argghhh!

Yet another great quote

"A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses."~Hippocrates

Weird Vertigo Attack

Last night, I had the strangest vertigo attack.  I'm hesitant to even refer to it as vertigo but am at a loss as to what else to call it.  I was sitting on my bed when all of the sudden, I got really nauseous and my head got that really heavy feeling that usually means an attack is imminent.  Nothing was spinning yet so I just sat there really still waiting to see what was going on.  The feeling was getting worse so I laid down and stared at one point on my bedroom wall still waiting.  My head felt heavier and I knew if I tried to get up, it would end badly.  I couldn't really move without getting a little spin and more nauseous.  I finally starting taking my Valium and it took 4 mg to calm the feeling in my head.  I also had to take some Zofran to make the nausea go away.  All in all this lasted an hour. 

Of course, now I'm trying to figure out what triggered it.  I know that it may be futile but I always try anyway to find something to point to as a cause.  Was it the hectic weekend I had?  My son's 7th birthday was Sunday.  Was it something I ate when we went out to eat?  I'm usually not affected by food or sodium though.  I have been suspicious of MSG and after doing some research there was some in what I had for lunch.  But I barely ate anything so who knows? 

Someone else suggested to me that this may be burnout.  This person had experienced the same thing and her doctor told her it was burnout.  That's what I'm hoping.  My other choice is always the threat that I'm going bilateral.  I see my doctor next week so I will definitely ask about it.  In the meantime, I hope it doesn't happen again.  I've been dizzy all day and I have to be the primary one to pick up the kids from school this week.  I can't afford to be dizzy.  Argh! 

On the Vitamin D front, I can tell a difference already since I started supplementing.  I'm now 12 days in.  The muscle cramps and joint pain are long gone.  The extreme fatigue has eased up.  Now it's just normal ol' fatigue probably from the Meniere's. 

So that's the latest.  Wish for myself I had better news!