Meniere's– "As The World Spins"

Okay, it’s time to discuss the huge elephant in the room.  Well, in my case, it is a dragon named Galar.  January 6, 2011, I posted A Good Day. This was a blog post giving you (anyone who does not have Meniere’s) a way to understand what I go through on a good day in this battle I fight.  I once again, urge you to read this post and have a better understanding of how things are for me on those good days.

Now, to discuss the not-so-good and the bad days I have.

Since adding the new trigger of weather in 2009, I have many not-so-good days.  It is just a factor living in East Tennessee.   I know, it could be worse, I could live in the UK.  Having many friends over there, I know they have lots of rain. 

If I wake up with what I call “waterbed effect”, it is a not-so-good day.  What this means is I wake up feeling like I am on a waterbed.  Not that the bed is wet (that is a post for another blog), but the slight motion of being on a waterbed when I don’t have one.  With this effect, I stagger out of bed much more off balanced than I usually am.  I will only drive feeling this way when I absolutely have to and if I do have to go anywhere, I have to be able to remain in the car or seated as much as possible.  During this time, I am much more susceptible to having drop attacks and this is not a desirable possibility. 

In the last couple years since I have really been more diligent in tracking these symptoms via an app on my iPod called My Pain Diary: Chronic Pain Management, I have found that I have these not-so-good days more in the days leading up to a full bout.

With the rain, I also have physical pain in my ears.  The pain isn’t intense, but more of a dull, burning ache.  What makes it really bad is that it is in both ears simultaneously and continuously.  This, after a few hours, causes a headache to set in.  When it gets to where I am ready to scream and cut my ears off, I take some Tylenol and grab the heating pad.  I bought me a microwavable heating pad that is aromatherapy as well and meant to fit around the neck.  This allows me to lay down with it and apply to both ears at the same time.

From not-so-good we travel deeper to the bad days.  If I wake up with what I call “lake effect”, I know I will be vertigo by the end of the day.  Lake effect is when I wake up feeling like I am on a rubber floatation device out in the middle of the lake.  Some people, when I say I will be vertigo by the end of the day usually snap back that I need to be more positive.  This is NOT me being negative.  It is me having lived with this dragon since November 2004.

Unless I have an obligation that I have to tend to, I usually get my cane, take my medication and go back to bed.   I do not drive or go out of the apartment at all when I am like this, unless someone is escorting me to the doctor (rare).  When I am in a bout, I am vertigo for two days.  During this time, I sleep.  My doctor has me on a psychotropic drug to help with the vertigo and I take it with a shot-glass of Pedialyte. 

The Pedialyte helps with the nausea.  I have learned to suppress the vomiting as I am the only one who would clean it up and I am in no condition to clean up vomit when I am vertigo.  Another trick I have picked up during this time is to get through my apartment without opening my eyes.  Most will tell you to open your eyes when you are vertigo.  For me, if I open my eyes, I will vomit.  I keep them closed and move about at an extremely slow pace.  During this time all I consume is the medication and Pedialyte.  I go from my bed, to the kitchen to the bathroom and back to bed all without opening my eyes.  This is my life for two days.

If you have ever had vertigo, imagine having it for two days while taking a psychotropic drug to help you with it.  (Side note – I don’t know how this drug is supposed to help the vertigo, all I do know is it knocks me out so I can endure the two days) 

Following these two grueling days I am very vulnerable for several more days.  First, it takes at least 12 hours of laying on the couch to get rid of the heavy fog which is a side effect of the drug and a residual effect of the vertigo.  Also, I am even more susceptible physically to drop attacks as I am physically worn out.  With the emotional toll it takes on me I am extremely vulnerable as well in that area.  This doesn’t mean you need to “walk on eggshells” around me, it just means you need to know that I am on an emotional roller coaster for several days.

  April of last year, I had three bouts back-to-back in one week.  This left me completely beaten up.  As a result of this, I contemplated ending the reign of Galar by destroying his prey, me.  I spent a week in the psych-ward at the hospital as a result of this.  It took this for my psychologist to finally believe me when I told him I was not depressed.  I was never diagnosed with depression.  I was diagnosed with Meniere’s w/psychosis.  There are depressed thoughts and idealizations, but not depression.

As an isolationist, I try to keep my contact with people to a minimum during the time immediately following a bout.  I know I am prone to taking things the wrong way and don’t want to make any comments that could cause ill feelings for the other person.  It is during this time that little things really mean the most to me (they always mean a lot, though).   An e-mail, an IM or a text that might simply say “hello” or “I’m thinking about you” go a long way in helping me get through this ugly period after a bout. 

To conclude, if I disappear for a while or seem even quieter than usual, it is nothing to do with you (well, probably not you), but instead, it is me trying to get back to a normal parameter following another bout with this hideous dragon.  Kind of like how you need to take time to get your family and household back in order following a tiresome visit by kinfolk you are kind of glad you don’t see very often. 

Once upon a time when I would be posed with the question as to what makes me angry; my reply would be prompt and sure, ‘those who abuse children, animals or anyone who cannot properly defend themselves.’ Being a survivor of childhood abuse and seeing it in its many ugly faces I knew in my heart of hearts this is what angered me the most.

Through the years my steadfastness on this topic has not wavered. Pet peeves have crept in which I file under “stupid people doing stupid stuff.” Now, however, I hesitate in giving a reply. To most my answer remains the same. To me it is far from the truth.  While forms of abuse still ruffle my feathers, and probably always will, there is now something else that feeds the raging monster of anger with in.

Vulnerability. Helplessness. Weakness. No matter what word is used, it still comes from within. When your body brings about a disease it has a way of throwing your life and manner of thinking into a tailspin not easily recovered.

My body started behaving in a way that it should not. No one could tell me why. When I received a call from a “substitute” nurse wrongly telling I had diabetes, I thought my world was ending. After losing my grandmother and a close friend to the disease this news hit me like a sledge hammer on a carpet tack.

In a manner, I wish diabetes had been the answer. However, several weeks later I listened intently with some relief as my doctor explained that in fact, I did not have diabetes. I am pre diabetic. This news only gave a short term air of solace. We were back at square one. If not diabetes, then what.

Seven months! It took seven months for the parade of doctors to diagnose me with Meniere’s Disease. This disease had been mentioned to me by one doctor two months before the diagnosis. At that time my research began. My findings were anything but reassuring.

Meniere’s disease has no known cause, no known cure. These words plunged deeper into my heart and soul then lead weights into the deepest sea. As a perfectionist, I like being in control of my actions and my body. This time is no different. No one can tell me why I have Meniere’s. No one can tell me how to eliminate it. Needless to say, I am not a happy person.

What makes me angry?  Having a disease that no one can explain makes me very angry. I cannot explain why. I just know I am angry though no one is to blame. Even though a few aspects of the disease were gradual, most were not. I feel as if my normalcy had been snuffed out like a candle.

What is my response to everything?  Isolation and self medication. It is easier to withdrawal and shut myself off from the world. I trust no one and cannot trust myself to be around others. Pondering these issues and others, I often cry myself to sleep. To prevent this, I take Benadryl or drink valerian tea to put myself to sleep. Weekends in isolation are worse. I have been known to spend them with alcohol to numb my body, mind and soul to prevent thoughts of Meniere’s from seeping in.

So, what is at the heart of the matter? I cannot trust and will not try till the anger goes away. The anger will not go away till there is a cure for Meniere’s Disease and that is improbable in my lifetime. Hence, a very vicious cycle.

One thing well known in the world of Meniere’s is how long it takes to figure things out. When I first presented in November 2004, I thought it was an inner ear infection. My second bout was February 2005 and I got the doctors involved. From there it took seven months to reach a diagnosis. Following the diagnosis it took several months longer to determine my triggers; stress and being a girl. Just this past June I added weather as a third trigger.

Diagnosis and triggers are only a part of the equation. I believe the longest process is determining treatment. While trying to determine what will help relieve your symptoms (if anything will) you work on treating the symptoms and the triggers. Since each person is different regarding their symptoms and triggers, so it goes that long-term relief is also different. Meaning, what works for one may not work for the next.

It took about four years from the time I first presented for me to find the one thing that helped me to return to my life nearly as if it were before Meniere’s found me. After many attempts at treatments, October 2008, grommets were implanted in my eardrums and I felt better than I have in longer than I can remember. I am moving in the right direction now and I hope that all those with Meniere’s can do the same.