Edited 1/23/2008 to add: I have decided to close comments on this post because I am uncomfortable with some peoples’ view of my website as a Meniere’s “group.” I appreciate that so many people have responded to what I wrote but this is simply an account of one patient’s battle with MD and not an appropriate place to ask medical questions, give medical advice, or seek support from a group. Please read the lengthy post I wrote about some of the many online resources available where you can find more information or support groups. If you want a quick link to people to talk to please visit menieres.org. They have several forums and you can register and participate for free.
But I need to write it.
Third time is the charm. That’s what the doctor said, that’s what Stephen says, and I need to make myself believe it. I know that the mind has powerful effects on the body and that this third injection of poison into my ear has a better chance of working if I believe it is going to work. But it’s hard.
I was diagnosed with Meniere’s Disease five years ago this summer (July 2002). At the time, I was glad to have a diagnosis so I could learn more about it and how to deal with it. With treatment for MD, you start at the very beginning, it is of course a very good place to start. So, low sodium diet and diuretics. I believed that would work. It didn’t. Add on some Antivert to control the dizziness. I believed that would work. It didn’t. How about some Valium? Surely that would work. It didn’t. Then I found out about this amazing new device called the Meniett and I said sign me up, that’s gonna work! It didn’t.
I should say that all of these things worked to some degree. Or maybe helped is a better word. I discovered that sodium does indeed affect my symptoms and so making changes in my diet helped, but not enough. Same for all the meds, they helped with the symptoms when they happened but not enough and they didn’t stop them from happening in the first place. When I started the Meniett, we thought it was a miracle but then it slowly seemed to be helping less. It seems to help with pressure build-up but it won’t stop vertigo.
In February 2003, I had to quit grad school, move back to St. Louis and in with my parents. By August of 2003 we were desperate. I had switched from a general ear nose and throat doctor to my current doctor, a neurotologist, who specializes in these things. My mom had to quit her job to take care of me since I’d been home-bound and sometimes bed-bound for about six months. And we had quickly used up all of the traditional, non-invasive treatments for Meniere’s Disease. So, in August 2003 I had endolymphatic sac surgery. And I believed it was going to work. It was rough. Really rough. I had massive headaches and had a very hard time being weaned from the Vicodin. All kinds of other things in my body seemed to stop working properly. I couldn’t tell if the surgery had helped or not.
Jump forward another six months to February 2004. At this point I was finally at a point where the vertigo and other symptoms were under control. I was out of bed, out of the house, and able to live a much more normal life. I still had to be careful, avoid places that were too loud, too chaotic, too brightly lit, and any other number of triggers I learned to watch out for. At the time I thought, finally something has worked. Looking back now, I wonder if the surgery did work. Six months is a hell of a long recovery. Maybe it was just a spontaneous remission. That happens with MD.
So, with the Meniere’s ever present but under control, I continued on with my life. That took some time. A lot changes when you go through something like that. I had a lot of time to evaluate my life and myself and decided on a career change from education to librarianship. That was rough. It was rough on my friends and I came out on the other end with not as many as I’d started with. It was rough on my relationship I’d been in for several years at that point which then finally ended after we realized that I was doing better and we were still a mess. Basically, life as I had known it before MD was gone.
So I started over. In the fall I started library school thanks to a distance education program that allowed me to attend classes in St. Louis and online. I re-established old friendships and tried to go back to the way things were before to some degree. But it wasn’t working and then the depression struck. Depression is something I’ve dealt with off and on since I was a teenager but this was an exceptionally bad episode. Finally, in February 2005, the depression was under control and I was back on track. But again, things were different. Most of the friends that had stuck with me through the Meniere’s weren’t able to stick with me through the depression. I don’t really blame them, it must have been very difficult to be friends with me for those few years and I am eternally grateful to those that did stick with me.
But I was different then. After the year long battle with MD, I came out different but didn’t want to believe it, I wanted my life to go back to how it had been. When I tried to, it came crashing down around me, hence the subsequent battle with depression. And when that was over, I knew I was different and I was ready to move on with a new life. I got a job working 10 hours a week at a local public library and that made all the difference in the world. I focused on school and work and family and myself and found a sort of peace with all the elements in my life. And finally, finally the Meniere’s was under control.
In 2006, I went up to 27 hours a week at the library and kept on plowing through school. Things were going well. I didn’t have a big group of friends but I neither needed nor wanted them. I’d realized that I am in many ways a loner and a homebody and I was happy with that. That summer I met a wonderful man in a class on special libraries. In January of 2007 I went up to 32 hours a week at the library and began my last semester of library school. Work was good, school was good, and Stephen and I were making plans to move in together. See what’s coming?
They say that being diagnosed with a chronic illness triggers the same stages of grieving as someone who has lost a loved one. I feel like I cycle through them continuously. It’s quite easy to be accepting of it when its in remission so I hung out in that stage for a good few years there. So when I started having episodes in March, I went straight into denial. Nope, this wasn’t Meniere’s, this was just some symptoms flaring up a little bit. We’d crank some of my meds back up and it would be smooth sailing. The Meniere’s wasn’t back. It couldn’t be. Everything in my life was going so well. It wasn’t fair.
Denial didn’t last long as I barely finished up my degree and was missing a lot of work. I knew the only thing to do was accept that it was back and deal with it. I once again became a regular at my doctors office as we went through the options and eventually decided it was time to go ahead with the Gentamicin injections. Treament 1 had no noticeable affect. Treatment 2 had some effect but still did not control the vertigo. Treatment 3 was yesterday. Which brings me back to needing to believe that the third time is the charm. But you see now why it is so hard for me to believe that? I have believed so many other things would work, only to be let down. My Meniere’s has always been “stubborn” as my doc likes to say and resistant to treatments. Why should this work when the first two haven’t? I’m trying not to think that way but at this point it gets really scary. If this treatment doesn’t work, we won’t try anymore. The doctor’s opinion, and I agree, is that more treatments are unlikely to work if these ones haven’t and the risk of damaging my hearing only increases.
According to my doctor, I have only two good things going for me right now. One is that my hearing remains intact. He seems to think this is quite amazing considering how jacked up my ear is otherwise. The other good thing is that my Meniere’s is only in my left ear. That means I have one good ear, one ear sending good balance signals to my brain. The scariest thing possible is for the MD to develop in my other ear. But the doctor says that the chance of that happening if it hasn’t happened in the first three years is low. I’ve got five years under my belt and still just the one ear so that is encouraging. Especially since if this treatment doesn’t work, the next thing requires one good ear.
The next thing would be a Vestibular Nerve Section. All those bad, wrong balance signals that my bad ear is sending to my brain? The doctor goes in and cuts the nerve that conducts those signals. The brain adjusts to depend on the good ear. It has much the same goal as the Gentamicin treatments but with more control and no going back. It has a very high success rate but it is dangerous. It is brain surgery. The balance (vestibular) nerve and the hearing (cochlear) nerve are very close together, sometimes partially intertwined, along with one of the facial nerves. And of course, the most terrifying possibility in my mind is having a VNS and then having Meniere’s develop in my one good ear. But that is the next thing if this third treatment does not work and I do not have a spontaneous remission sometime soon. That is why I need to believe that the third time is the charm, I need this to work. I need to squelch that uneasy feeling in my gut that keeps saying, “why should this work when nothing else has?”
June was supposed to be when I started working full time at the library. Instead June is when I started a sick leave of absence from the library. I am moved in with Stephen and that is wonderful. But I find myself back in that nasty stage of grieving: anger. Bitterness. I’m just plain pissed off that this is happening again, that this is happening now. Of course there is nothing or no one at which to direct my anger. It just churns inside me. I’m trying to let it go, to believe this is going to work. But I think a way to do that is to briefly, just for a little while, let myself be angry. And that’s why I have dumped all this here, my poor blog readers. I don’t need or want anything from you, you don’t have to say anything, I just needed to say all of this. I needed to get it out of me so I can stop laying awake in bed at night thinking about it over and over. I need to believe that this time, the treatment is going to work.
Edited to add: For those who are looking for more help or people to talk to, please read this post I wrote on the many resources and online communities that are available for you to investigate further. Best of luck to all of you who are living with Meniere’s Disease.
If you do have a diagnosis of Meniere’s Disease, the best resource I can direct you to is this book: