Me vs. Count Vertigo

 

Marvel Comic's Count Vertigo

Ahhhh, so it comes to this.  The laying of a trap for the villain.  Will we be able to lure him in and finally destroy him once and for all?  That, my friends, is the million dollar question.  He’s a familiar enemy, Count Vertigo, as we’ve danced this little dance before.

My posse of Superheroes and I have learned a lot since our last meeting.  The Count is not coming for my good ear, at least not for now.  His intents are on complete destruction of the one he came for in the first place.  He’s not going to make it an easy defeat.  Digging deep, we’ve thrown every weapon imaginable at him and while he may slink away briefly, he comes swooping right back in with his evil villain laugh and “Ka-pow!”  We lose another battle.  I stand up, my army of heroes behind me, another weapon in hand, and “Bam!” knocked down again.  On occasion, I am taunted with what appears to be victory only to be reminded in the days that follow, that it was fleeting.  A little tease of what life would be like if the Count were gone forever.

This is the scene of my little pretend movie where you, the viewer, would be tense.  Eyes intensely focused on the screen.  Perhaps, yelling out, “don’t give up!” or “Get ‘em, girl!”  Maybe you’re the quiet type and while wringing a tissue through your hands, you’re saying to yourself, “this can’t end this way.  The good guys always win, right?”  In the movies, yes.  I imagine my life to be a movie for that reason alone.

I withdraw, go into hiding, rebuild the mental and emotional fortitude that will be necessary to finally, once and for all, have complete victory.  A meeting is necessary.  A meeting with my top advisor.  The man in the white lab coat cape and the matching shock of thick, white hair.  From behind his glasses, he says with a resigned tone to his voice yet a steely resolve, “it has come to this.  Odds are 90% that it’ll work, but there will be sacrifices to be made.”

“Sacrifices?” I ask. “What kind of sacrifices?”

He lays his comforting hand on my knee, leans in and begins to tell me of his plan.  He has defeated the Count on many occasions.  He has one more weapon to try.  One he almost never uses because he almost never needs to.  He’s that good.  There is great comfort to be had in that.  The plan, you ask?  Impatient, are we?

My humble hero in the lab coat has access to the chemical that Count Vertigo cannot stand.  A Kryptonite to Superman, if you will. I smile cautiously.

“Yes!” you yell, “use it.  Kick his tail!”  But remember, this comes with a price.  No victory is that easy.  This chemical will be injected into the very ear upon which the Count has already wreaked havoc.  There is serious irony here.  This chemical will continue the very same thing that the Count has already begun-destruction of the balance nerve.  This chemical may also further destroy the hearing nerve.

“Wait a minute, that’s what He wants!” Exasperated you sit back in your seat.  Who wrote this movie anyway?  What kind of plan is that?  Hang on, dear friend, hang on.  This is my little movie and like any good movie, I gotta drag things out.

Back to my meeting.  I take a deep breath and ask how such a seemingly absurd plan will help me.  Therein lies the beauty.  It’s a trap!  We will lure in the Count.  Upon the injection of this chemical, he will be drawn in and will not be able to resist one last battle.  He will likely unleash all that he has in his euphoric haze that the chemical will cause.  While he whirls and twirls and sends out his signals with his devious little electronic implant that cause vertigo, nausea, misery…the chemical will secretly be destroying him.  If all goes well, he won’t notice until it is too late.  I picture this scene to be similar to the scene in the Wizard of Oz when the Wicked Witch gets water poured on her.  “I’m melting…” and she disappears into a harmless steam swept away by the slightest breeze.

“Let’s do this,” I say without hesitation.  I lean back in the chair in our superhero headquarters, turn my head to the side.  My last vision a blur of a white labcoat and hair moving around the room, preparing the syringe.  I close my eyes, squeeze my trusty sidekick’s hand, as I feel the cool liquid seep in.  I feel it moving deeper and deeper.  Tickling, crackling, as it moves through.

The sacrifice has begun.  Will it be worth it?  Stay tuned to find out…

Gentamicin Injection Tomorrow!

Hope to soon say bye-bye to scenes like this!

That picture is hard to look at for long, isn’t it?  Can you imagine being in that picture for hours and not being able to look away?  That’s vertigo, my friends.  Or at least, one form of it.
Tomorrow, I’m heading in for my one time, low-dose gentamicin injection to hopefully put an end to this once and for all.  Things seem to be getting progressively worse as the weeks have worn on since I started antivirals about 5 weeks ago.  I think if I were to continue on without doing anything else, I would be back to having full-fledged vertigo attacks again.  I had a mild one the other night.  I woke up about 2am and had to go to the bathroom.  I sat up and the room was spinning, my head felt like it had lead weights attached to it, and I quickly fell back down on the bed.  I grabbed my ever present Valium and stayed still.  I was able to go back to sleep soon thereafter thankfully but when I woke up at 7am, the heavy-headed feeling was still present and when I walked, it felt like my head was leading me around.  Which means I staggered and swerved for a while.

Also, the other day I had gone to pick up my kids from school.  I was sitting in the car waiting for my daughter to be dismissed from Pre-K when I had a quick mini-spin.  I popped a Valium, sat in the car for another 5 minutes.  When I got out to walk across the parking lot, I know I was walking slow, swerving.  The other parents must’ve thought I was drunk or something.  Thankfully, the Valium kicked in quickly and by the time we were back in the car, I was feeling a lot better.

As for the gentamicin tomorrow, I’ve had to make so many contingency plans.  Someone else to pick up the kids.  Someone to come here and watch them.  Someone to be available in case I get really sick.  My husband wanted to make plans for next weekend.  I looked at him and said, you know we can’t do that, don’t you?  He said “I figured we’d just see how you’re doing.”  This infuriated me.  Like I can predict with any accuracy when I’ll get sick from this shot.  He was there when the doctor said the third or fourth day after is usually the worst.  He’s listened to me say that everyone’s recovery is different.  Some are horribly sick.  Some are just very unsteady for several days.  Once again, I was reminded that unless you live this disease, you just can’t get it.  No matter how much you try or how hard you want to, you just can’t.

I plan to post tomorrow, if I can, on how the actual gentamicin injection itself goes.  Then as I am able, I will post how I do afterwards.  Keeping a journal will help me gauge the progress.  I hope this injection does it because if it doesn’t, I don’t think my doctor is willing to do any more shots or do any more serious surgeries.  Keep your fingers crossed for me!

Meniere's and Valium

Part of the reason for my keeping a blog that is mostly dedicated to Meniere's is to help anybody else is also suffering find some information, and hopefully, some help.  I wanted to quickly share a little trick my wonderful ENT, Dr. John May of Wake Forest Baptist Medical Center, taught me.  He told me that when I feel a vertigo attack coming on to take a Valium and place it under my tongue.  According to him, it gets in the system much faster that way.  I can attest to it's effectiveness.  It has stopped many attacks for me in its tracks. I have 2mg tablets that I usually break in half and place under my tongue and let it dissolve.  Sometimes, I have to repeat the dosage again in a half hour or so.  While I no longer deal with severe vertigo (knock on wood), I still always carry a Valium pill in my pocket everywhere I go due to the severe dizziness I suffer.  It also helps with the bad balance problems that I am currently having. 

For me, Valium has been my saving grace.  If you haven't tried it, I highly recommend you give it a shot.  It could save you a lot of unnecessary suffering. 

Meniere's and Antivirals - Week Three

Well, I waited an extra day to post hoping I would have something more concrete to say.  I’ve done the 800mg 3x/day for 3 weeks now.  Today I’ll taper down to 800mg 2x/day.  At this point, I can’t really tell much difference.  I am still having problems with dizziness and my tinnitus is still really loud.  The only area in which there MIGHT be some improvement is hearing.  The distortion seems to have cleared somewhat and some noises seem louder in my affected ear.  Of course, I am hopeful it’s the antivirals working but it could just be normal fluctuation.  Also, if my tinnitus was, for example, a 10 on the loudness scale, it might be a 9 now.  Again, hard to tell if it’s normal fluctuation or if I’ve just gotten used to the new level of loudness it had reached.  I was really hoping my balance issues would’ve, er…”balanced” out by now, but no such luck.  It’s still a good day here or there with mostly bad days.

I wrote on Monday about my awesome hiking and camping trip (yay!) and I am still recovering from that.  Really tired and dizzy from it.  So I feel like that could be interfering with results too.  You play, you pay…I guess.  Still worth it in my opinion.

So sorry to report, no exciting news yet.  But I’m not giving up hope that something will change soon!  I will continue with the 800 mg 2x/day for at least the next 2 weeks.  Then I have to decide whether or not to go ahead with the one time gent injection.  I’ve thought about postponing it but my problem is if I postpone it, it puts me in the summer when I’ll be home alone with my kids and this summer, I don’t have a lot of help that I can fall back on.  (no pun intended)  I’m just thinking of the worst-if I get really sick one or two days from the gent, I don’t want to be home alone with the kids.   I know some people get really sick for a day or two and some people don’t. Usually, if there’s a chance of a bad side effect, I get it so I have to prepare for it.  It would scare my kids to death if they witnessed a full-on vertigo attack and if I can protect them from that then I plan to.  I’ve got two more weeks to decide and that’s good news and a lot of time for something to change.  I’ll post on this in another week and see if there’s any change.  Hopefully, there’ll be no sicknesses or other factors to interfere and I’ll better be able to tell if they are working or not.

Meniere's vs. Table Rock

I am experimenting with another blog site and transferred this over so it may not be aligned correctly.  I am testing out wordpress.com with the blog name www.fleetlydreaming.wordpress.com. 

VICTORY!!!-made it to the top!

Meniere’s-0, Table Rock-1…Woohoo!  So we set out on Saturday for a camping trip at the Table Rock campgrounds.  I agreed to go with much trepidation.  Not only was I fighting dizziness but I was battling a cold.  The excitement in my kids’ faces was enough to get me to go.  It was going to be my daughter’s first real camping trip after all!  My husband assured me the campsite was very close to the parking lot and I could just sit and hang out while they went out and explored if I didn’t feel up to hiking.   So, off we went!
The first obstacle was the car ride up many long, curvy roads.  I went ahead and took an anti-nausea medication before we left to overcome that.  It was a gorgeous day, clear blue skies that stretched for miles.  However, the wind was ferocious, blowing anywhere from 25-35 mph and gusting higher.  When I first got out of the car, I was a little wobbly but that eased up fairly quickly.

You want me to climb that?

Here, it is.  Table Rock.  A well known landmark in western North Carolina.  Elevation 4,100 ft and one of the most popular climbing destinations in the southeastern United States.  While the hike to the top is only one mile, it is almost all uphill with a rocky trail that requires being careful where you step. We set up camp near the parking lot as promised and proceeded to go explore.  I couldn’t bring myself to stay behind so I ventured out!

the kids leading the way

Have hiking poles, will travel

Enjoying some of the views along the way

With hiking poles, I did really well.  Only had one moment of the mini-spins as we neared the top.  My biggest problem was my knee giving me fits on the way up and especially on the way down.  As we got to the top, I stayed far from the edge and didn’t really look out all that much.  I was nervous but as we “summited,” I felt a little more at ease and relaxed enough to really enjoy the views all around.  It was such an amazingly clear day and we could see nothing but the beautiful Appalachian Mountains stretching out in all directions.

The Gorge

These pictures are just some of the many we took while there.  Pictures don’t do it justice but at the same time, these still speak volumes.  It was a hard hike to the top for the kids and me but it was so worth it to hear my son constantly repeat, “Mommy, it’s so beautiful!”  and “Wow, look at that!”  Fostering a love of nature is so important to my husband and me.  I hope I can do many more of these trips in the future.

I love how lush and green it looks!

Enjoying the view and a well-earned snack!

Meniere's and Antivirals - Week Two

First of all, I've been up since 3:30 and it's now 7:30 so I hope this makes some sense.   ;)

Second of all, the basics of the past week...I have continued on the dosage of 800mg 3x/day.  For the past few days, I have been worse.  Especially yesterday.  Dizzier, light-headed, and yesterday including the heavy-headed feeling and some mini-spins.  I'm not sure what to chalk that up to as their as some other factors at play.  Could it be the whole "it gets worse before it gets better" thing?  I sure hope so!!  I know this happens to a lot of people who try antivirals.  I plan to continue for one more week at the same dose before I taper down so still keeping my fingers crossed.  The hearing in my affected ear may be slightly better and slightly less distorted.  My tinnitus is still extremely loud.

But to confuse things a bit, I seem to have had a touch of the sickness my kids have had.  My son had a bad cough due to some inflammation in his lungs and my daughter had a cold and an ear infection.  On and off for the past 5 days or so, maybe more, my chest has been tight and my good ear was hurting.  That has eased up.  Also, yesterday morning, my Meniere's ear had some clear drainage coming out.  It's gone now as well.  So did that make me feel worse?  Don't know.  It was all so mild and variable that I just couldn't say for sure that I was sick.

Just to further add to the mix, I was also very busy this weekend.  My husband had to work very late Friday night and then was gone to a funeral in another state and was gone all day Saturday so I had to do a lot more around the house and care for the kids.  I spent about an hour cleaning out my daughter's toy boxes and closet yesterday and by the end was when I started getting the mini-spins.  So maybe I overdid it?  I don't think so but it's possible.

I'm still having some gastrointestinal problems too.  Mostly very mild but I was woken up at 3:30 with stomach pain and nausea.  It was pretty easily fixed with some Pepto and some Zofran.  But I haven't been able to get back to sleep since.  Feeling pretty dizzy now and hope to take a nice long nap sometime soon before time to go get the kids.

So I guess that's all for now.  Plan to post again in another week or before if something major changes.  As I've mentioned before, I've had this for 12 years so this is probably going to take some more time for me.  Even if this turns out not to work for me, I am so glad that I'm getting to try it. 

Meniere's and Antivirals-Week One

It's been a week now.  I've been taking Acyclovir 800mg 3x/day.  So far I can't tell any major difference.  About day 3 into it, I had a great day where I felt "normal" and was able to get out and play with the kids.  It was awesome but I'm not so sure I can chalk that up to the new medication.  Even before the medication, I would occasionally have a "good" day like that.  I do feel a little more stable getting around the house.  I'm not holding to things as much but again, still hard to say if that's just the natural course of this or the medicine.  Yesterday, I had a very busy afternoon with having to take the kids to the doctor and dentist.  I got pretty dizzy during all of that and had to take 1mg of Valium.  I haven't noticed any change in hearing or my tinnitus.  My tinnitus has been extremely loud since about a week before I started this medication.  I'm dizzy and tired this morning.  I have read that some people get worse before they get better.  I've also read that the longer you have this disease, the longer it takes to notice any changes with the Acyclovir.  I've had this for over 12 years so it may take me awhile.

Side effects noted so far have been drowsiness and I'm sleeping a lot more.  I can easily sleep 10-11 hours a night.  The Acyclovir also seems to be causing some minor gastrointestinal problems but nothing serious and no nausea. 

So that's week one.  I have a busy afternoon today as well.  We'll see how it goes and I plan to report back again in another week to see if anything has changed.  Of course, if I notice anything significant before then, I'll be back to write about it when it happens.

Great Dr's Visit-Starting Antivirals!

Wow, what a long but great day!  My hearing test and ECoG results indicate that I am not bilateral!  Yay!!  My right ear (good one) is doing great.  My doctor thinks the pressure I'm feeling in it is related to my TMJ so I'm going to wear my little mouth guard for awhile and see if it helps.  The hearing in my left ear was worse but I'm okay with that because the results for my right ear were so good.  The audiologist described it as severe mixed loss.  80dB loss in the lower frequencies.  Speech discrimination at 85dB was 68%. 

After getting these results, my doctor was very happy for me and said he was willing to give me one gentamicin injection.  He's pretty anti-anything destructive because he's seen too many people have destructive procedures done, then go bilateral and end up in wheelchairs.  He said that since my right ear is so good that he was willing to give me a one-time, low-dose gent injection.  I was thrilled he was willing to do that.  I've been so miserable lately, I was prepared to beg.  But before we do that...

He agreed to prescribe antivirals for me!!!  I couldn't believe it.  I had asked him once a couple years ago and he politely and reasonably said no.  Now that there are generics available and the risk of side effects are so low, he said "sure, let's try it"  Whoa!  I was shocked.  He said he honestly didn't think it would work, but at this point, I had nothing left to lose.  I was prescribed Acyclovir.  800mg 3x/day for 2-3 weeks, then down to a maintenance dose of 400mg for a couple weeks.  If this doesn't work, then I have my gent injection scheduled for May 25th.  I'm so thrilled to be moving forward and trying something to stop this off-balance, dizziness, and nausea.

I think it helped that when I asked him about antivirals that I told him up front that I knew chances were they wouldn't work but that I wanted to exhaust my possibilities before I did anything destructive.  He kind of laughed and said, "if this works, I'll pop open a bottle of champagne for you!"  and then went on to say he would prescribe them for his next patient.  Yikes, I really hope they do some good for me.  I really don't want to ruin anyone else's chances of trying them.  So many people have benefitted from antivirals.  I plan to post on my progression over the next few weeks.  An honest telling of any side effects, new symptoms, improvement of symptoms, etc. 

Here's a link to a great compilation of resources that may be of interest or help to anyone who wants to give antivirals a try...

http://www.menieres.org/forum/index.php/topic,23217.0.html

I had e-mailed this to my doctor yesterday but he didn't have a chance to read it.  From a scientist's point of view, many of the studies are flawed.  However, there's still good information in them.  It's the personal success studies that intrigued me the most. 

Big Day Tomorrow-ECoG and Hearing Test

Tomorrow I am scheduled for a hearing test and a ECoG test.  I've had numerous hearing tests but the ECoG is a new one for me.  From what I understand, they put electrodes in your ear and can determine, with some degree of error, whether or not you have Meniere's in that ear.  I am only having it done in my "good" ear.  I have been counting down the days until this test because I am so desperate for answers.  Now that I'm facing it tomorrow, I'm a mess.  I'm nervous.  Prone to fits of crying.  The stress around me is not helping things either. 

I have myself convinced of the worst news.  My instability has been so bad and I have this strange but intense pressure and pain deep inside my "good" ear that I've just assumed I've fallen into that oh so lucky 15% that go bilateral.  (15% is my doctor's estimate, some are as high as 50%.)  The hearing test will likely be the ultimate give away in determining the status of my ear.  My right ear, which is my good ear, has held steady with great hearing throughout the 12 years of having this.  If there's any decline in the lower frequencies, then that's a pretty sure bet, that ear is going too. 

I spent this past weekend at 2 separate kid's birthday parties.  On Saturday, I barely made it to the party as I was so off-balance.  Once I got there, I just sat in the same chair pretty much the whole time and took some Valium to help.  On Sunday, at the other party, I had to move around more and had to take my afternoon Klonopin dose early and take more Valium than usual to get through.  It was at this party that I noticed my hearing was off.  There was a lot of background noise as you can imagine.  Lots of adults talking, kids playing and I had a hard time understanding people when they tried to talk to me.  Come to think of it, I noticed this Saturday as well but the problem there was the loud background music that was being played. 

What do you do when you find out you are bilateral?  How do you progress with treatment from there?  Also, if my wishes come true and I'm not bilateral, what's next for me?  How do I get relief from these latest symptoms?  I am tired of waiting this out.  I'm ready to move on to another treatment.  The good thing about my doctor is that he's looking at the long-term and is able to "talk me down" from doing anything drastic, like major surgery, because he's looking at potential problems in the future.  Meanwhile, I'm so impatient, I'm willing to do just about anything to get some relief and get back to where I was before.

Another good Meniere's website

This one was pointed out to me by Dr. Burcon.  Good site, good info.

www.menieresresearch.com

Consider all the possibilities out there when fighting this disease.  You never know which one will work for you.

Meniere's and Related Research

I find this study very compelling.  Really want to discuss this with my doctor.  The idea of being able to regrow and regenerate the cells necessary for hearing and possibly balance is amazing and from I understand not far from becoming reality.  This is one link to a study being done in the U.S.
http://depts.washington.edu/hearing/HRI.php

I know similar research is being done elsewhere.  It's exciting and gives me a glimmer of hope that maybe I won't be like this forever.

There's also a current study being done on a better delivery method of dexamethasone to the inner ear.  Instead of liquid form, it's in a gel form and therefore stays in the ear and acts over a longer period of time.  This trial is taking place across the U.S. and I'm also interested to see what comes of it.
http://clinicaltrials.gov/ct2/show/NCT01084525?term=vertigo&rank=14

I feel somewhat comforted that somebody out there is paying attention to this dreaded disease.  Granted, the motivation may be money and these things aren't necessarily a cure, but any information that can be gained is useful.  Whether the experiment works or not, you're moving forward.  That's the nature of science.  I also just learned of a lab in Australia that is going to be solely devoted to the study of Meniere's Disease and what causes it.  Go Australia!  Here's a link for that...
http://www.medfac.usyd.edu.au/people/academics/profiles/danielbrown.php

I found all these links through the people at menieres.org.  It's really an amazing support group and resource for people with Meniere's.   Some people on the site are for some reason disgruntled about some of these studies.  They feel corporate greed is the driving force.  They feel that more attention should be paid to find the cause of this disease.  I agree somewhat but I also accept the reality of how the process works.  If someone can find a drug that can even relieve part of our suffering, I'm all for it.  At this point, if someone said, "here's a pill.  You won't be cured but your dizziness will ease up and you can be almost normal again."  I'd be all over it.  I'd say thank you and now please get back to work.  I'm so tired of living like this.  These attempts to learn anything at all about Meniere's give me hope.  That's huge and shouldn't be discounted.

Meniere's Poem-From a Spouse's View

I read this on www.menieres.org and found it very moving.  Unfortunately, I do not know the name of the person who wrote it.  He only gives his forum name which is WifesOnFloor.  He titled his thread simply:  Angelea

Why are you on the floor vomiting?  Is this a hangover?
What is the cause of this?
You have what?  I think your ears are beautiful; you don’t have man-ears…
Oh, Meniere’s, what is that?  A disease?  No?  A syndrome?  A collection of God-awful symptoms?  Why are you like this?
I see…nobody knows.
Ok, so it’s a fluid build-up...or wait, it’s a virus is it?  OK, no, it’s a kink in your neck?  No?  Yes? 
I see, nobody knows.

The kids want to know why you are on the floor again.  I told them about your man-ears.  I’m kidding, I love your ears.  I married you for your ears.  I married you for your eyes.  I married you for all of you, till death do us part.

I will hold the bucket with one hand and the back of your head with the other as you retch through the night.  I will wait with you until the room stops spinning long enough to half-carry you to the restroom so you can finally relieve yourself.  I will bring you anything you need in your state of paralysis, till death do us part.

Low-salt?  Check.  Diuretics?  Check.  Lysine?  Check.  Acyclovir?  Check.  NUCCA?  Check.  Dexamethasone?  Check.  Gentamicin?  Check.

Why are you on the floor?  Why are you vomiting?   

I married you for your ears, till death do us part.

 This brought tears to my eyes because I imagine my husband has similar thoughts.  He never really says anything but he was there for me through many of my bad vertigo attacks in the beginning.  Back before we were even married and he could've very easily walked away. 

To the author of this-sorry that I can't give you your proper credit.  If you ever stumble upon this blog and would be willing to give me your name, I would love to credit you for this beautiful work.  And thank you for being there for her.  It isn't easy for our better halves either and it's important for us to remember that.

Meniere's vs. the Zoo!

I did it.  I made it through!  Whew...now I'm beat and would've slept all day if the kids weren't off from school.  It was all worth it though.  We went to the zoo yesterday and had a great time.  I tell ya, Easter Sunday is the time to go.  If you get there near opening time, you have the place almost to yourself for the first couple of hours.  The extra trick for this zoo is to take the tram to the middle and do the far loop first.  So off we went to Africa.  Saw an elephant drinking water.  Two enormous rhinoceroses (rhinoocerosi?).  Moved on through the various baboons, gorillas, etc.  Got to feed giraffes-very cool.  And so on.  I took lots of breaks and had to take a total of 4mg of Valium between about 9:30 and 1:00 before I finally seemed to feel steady.  Also, had to take my second dose of Klonopin a little earlier than usual but it all worked out.  The kids had fun.  The weather was perfect.  They are already looking forward to next year's Easter visit when they will have their lemurs exhibit ready. 

Final score:  Zoo=1, Meniere's=0.  In other words, that's another win for me and I'll gladly take it.

In a Meniere's slump

I don't think I've been this down, literally and metaphorically, with Meniere's since it first hit.  While I am not having the violent vertigo attacks, I am facing a new enemy that I just don't know how to handle.  The floor continues to move.  My head swims suddenly.  I have spent the majority of this week as a captive in my own home.  The only thing I've managed to do each day is go pick up my kids.  Well, that's not entirely true.  On the way home, we stopped by the park a couple times.  They always want to play outside as soon as they get home.  The park is easier for me because I can sit and just let them run wild and not worry about them too much.  Plus the park is really close to where my brother works and my parents live.  Should an emergency arise, they could be there in minutes.  My problem with bringing them straight home and letting them play outside is that all the kids in the neighborhood descend upon us as soon as we hit the driveway.  I then end up babysitting everybody's kids.  And almost without fail, one of my kids either gets hurt or has one of their toys broken by one of the other kids.  Also, I just can't take all that noise and running around me.  At the park, I can distance myself somewhat and this time of year it isn't too crowded yet.

I find myself crying a lot, especially at night because I can't stand this feeling.  I went to the library the other day and had to hold on to the shelves the whole time to keep my balance.  I had to take a Valium and hurry out of there.  It also worries me because I can tell by my husband's reaction that this is something he's never seen in me before either and he's been with me since before this all started. 

I've called my doctor's office and by way of messenger was told that this is unfortunately part of the disease.  He said to go ahead and take the Valium as I needed it for these "flare-ups."  I guess what I may need to impress upon them soon is that this is happening everyday.  If things are no better by the middle of next week, I may call again.  Not sure it would do me any good as I have an appointment on the 20th for a hearing test and a ECoG in my good ear.  I don't think he can do much for me until he has the results of those tests.  Right now, the way I feel, if he said come tomorrow and we'll do the gentamicin injections, I wouldn't hesitate. 

We're supposed to go to the zoo on Sunday with the kids.  We went last year and it was so much fun that we decided to do it again this Easter.  I don't have the slightest idea how I will make it through though.  It is several miles of walking.  All kinds of visual stimulus.  It's also supposed to be about 80 degrees that day.  My plan for now is to pretty much time Valium on a rather constant basis.  It really does help.  I know I'm not supposed to and only save it for times when things are bad but I really don't want to mess up this trip.  The kids are so excited and I love the zoo myself.

Hopefully, I'll be back with a post in a few days with good news about our little excursion!!

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?

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...

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!

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!