CLICK HERE FOR MY FEBRUARY 2002 UPDATE 

Dec 29, 1998
Before you read this, I want to say that I am NOT a normal case!!  When I had surgery to cut my balance nerve Dec. 16th, my Dr found a LOT of scar tissue on my balance nerve and extra blood vessels pushing on it. So, it was basically misfiring constantly and no matter which treatments we did, NOTHING would have worked!

May 28, 1998

My story with Meniere's starts around the beginning of 1991. I was 29 at the time and started experiencing headaches. My GP gave me a number of pain killers for them, and we finally found one that worked. Then I started experiencing a feeling of off-balance, light-headedness once or twice a day. I went back to my GP and he gave me a shot of cortisone and some antibiotics and sent me home. He thought I had a inner ear infection and the cortisone was to reduce any swelling I had in my inner ear. Well, it didn't make any difference. At about this same time I started experiencing extreme depression. My family picked up on it and sent me back to my GP. I was put on 20mg of Prozac a day, to counter the depression and my GP hoped it would end the headaches and dizziness. Right after that my GP's practice was closed down. A new GP took over and this man is wonderful! About the same time I started seeing him..... One day I got up from the couch and BAM! My world started to spin out of control! It only lasted for about 30 seconds, but that was 30 seconds way to long! These "drop attacks" (there is controversy as to what qualifies as drop attacks, however, in my mind, being slammed to the floor in a severe vertigo attack is a drop attack!) started hitting me in extreme numbers ranging from 1 to 10 a day! My Dr. was out of town at the time this started, and I could not get a call back from the Dr. on call. To say the very least, I thought I was dying! I was thinking tumors, etc. About 3 days after the first one hit me, my friend was visiting me. We were talking and Bam! Down on the floor I went, spinning out of control! I was crying and asking her what was happening to me! She called my Dr's office and raised he!! until she got the Dr. on call to call back. He told her to tell me not to be scared, I was experiencing vertigo and I didn't have a brain tumor or anything that major. Just hearing that and putting a word to what I was experiencing was a tremendous relief! The next day my parents were visiting and seen me "drop" into a spin. My mom said it looked like I had a seizure. They took me to emergency, where I was put on EKG for an hour and watched. Well, of course, no more vertigo while I was there. They gave me a prescription for Meclizine (Antivert) and strapped me up with a 24 hour heart monitor and sent me home. I had to wear the heart monitor until the next afternoon. I was so very afraid! Being 29 and having medical professionals think it was my heart was so frightening! They wanted to see what was going on with my heart when I had the vertigo. When I turned the monitor back in and they printed out the EKG tape, they asked me if I had had any vertigo attacks. They were surprised when I told them I had had at least 6 in the 24 hour period, because nothing showed up on the EKG while I was having them. I saw a heart specialist a couple days later and he wanted me to take a Tilt Table test. I kept telling him it was NOT that kind of dizziness. But, he would not listen. So, they strapped me to a table, put an IV in and ran a EKG. I had to stand upright without moving for 45 minutes to see if I was going to pass out. Guess what? I DIDN'T pass out, the same as I told him. This Dr. put me on medication for low blood pressure and sent me home. I took it for 3 days and then threw it in the trash! This medication made my heart race and all kinds of horrible things, because my heart is normal! When the vertigo didn't let up, my GP sent me to an ENT. This Dr. looked in my ears and said, you have Meniere's, gave me a prescription for Valium and sent me home. No tests, nothing! I was so very angry! I did not accept that diagnosis! Next my GP sent me for an ENG test (this is where they pour water into the ear and make you dizzy as the monitor your eyes). Well, I passed that test. My GP then ordered numerous blood tests, all negative. I had an MRI done, normal. I had an eye exam, normal. By this time I had started to research and read everything I could on vertigo. I did not fit into any of the categories for vertigo, except Meniere's. The problem is, I had no tinnitus and no hearing loss. So I did not think that that was what it was. Next my GP sent me to a neurologist. I passed all the tests he had me do, and he diagnosed me as having panic/anxiety attacks. He prescribed me Klonopin which is an anti-anxiety drug. I was so very angry at this diagnosis, because, I am a Psychology major and I know what panic attacks are! I did not fit into that category! I did get the Klonopin, at my mom's insistence, because, as she pointed out, I was very anxious and experiencing a lot of anxiety! By this time I was so very fed up with the medical community and so disgusted! WHY couldn't they name what was wrong with me?? I wanted answers so that I could get better!! I went to a psychologist to talk and vent. He gave me the name of a ear Dr. that his wife went to. I asked my GP for a referral and he gladly gave it to me. He wanted to know what was up as much as I did!

This is where my story really begins! I met Dr. Barrs, my life saver and my rock . Dr. Barrs is a Otologist and Neurologist, all he does is balance disorders and hearing disorders, and actually teaches other Dr's about Meniere's, and its different treatments. Well, the first appointment I had, I had the ENG test done, hearing test and other tests. When I saw him I was so bitter! He walked in the room, sat down and the first thing I said was, "let me guess, I passed all the tests and you don't know what's wrong with me, right?" Oh, I was so mean to him! He smiled and said passing the tests was a good thing, now he can diagnose me! He said he was 95% positive I had Meniere's. The only thing is that I had no hearing loss. So, I had the Vestibular type. He sat with me and explained what Meniere's is, what is going on in my inner ear, and gave me literature on it. He prescribed me a diuretic and told me he wanted me to keep a diary of my vertigo attacks, how long they lasted, what I was doing when they hit, how severe, etc. I saw him again a month later and he confirmed that it was Meniere's. He told me that with Meniere's, a patient passes the tests, because they are normal in between an attack. That diagnosis comes from mostly patient history of the attacks. This was in 1995, 4 years after the first attack hit me. He kept me on the Meclizine (Antivert), the diuretic and Klonopin (for my anxiety). This worked for me fairy well for about 2 years. I was only experiencing an average of 1 attack a week, and I could just rest for a little while after one and then feel fine. I was having times where I was having no symptoms too. The only time the Meniere's really got bad was when I was under stress, such as midterm and final time.

1997 is when the Meniere's really started ruling my life! The drop attacks started back up with a vengeance, added to that was the extreme nausea, having to sleep it off for hours, and having bad balance for days after and attack! I was having the daily drops and chronic headaches. Dr. Barrs then did the DMZ (Dexamethasone Steroid) treatment on me, these where a series of 3 injections into my inner ear through the ear drum 3 days in a row. (All treatments from here on out are explained in more detail in my TREATMENT page) The DMZ has a success rate of controlling vertigo at 85%, so we were sure it would help me. I had these done Jan. 6 - 8, 1997. Within a week the attacks stared up again. So, I was in the 15% it didn't work for. Next I had the Endolymphatic Sac Decompression surgery done on May 21, 97. This surgery worked for about 3 months! However, I woke up from surgery with 80% hearing loss in my left ear. Dr. Barrs said that my hearing was hanging on by a thin thread and the surgery was the last it could take. I was OK with the hearing loss, I knew the risks. There is only a 5% chance of hearing loss happening, and I was in that 5%. When the extent of the loss hit me was when I was in the grocery store and the clerk kept repeating the same question to me and then thought I was nuts or something! I came home and cried. I am lucky in a sense, because my dad has hearing loss and he has taught me how to cope with it. December of 1997, Dr. Barrs sent me to The Center for Hearing, Speech and Language (who is a part of Easter Seals) and they got me a hearing aid through financial support. I was very upset at the fact that I was only 34 and had to wear a hearing aid, but, when I wore it home for the first time and HEARD my kids talk in stereo, I cried and decided it was worth it!

Lastly, as of right now, the final treatment I have had, which I am still recovering from is the Gentamicin injections. The gent. is toxic to the vestibular system, which makes it a Chemical Labyrinthectomy. This means that the chemical in it invades the vestibular system and destroys it. I had a series of 3 injections, starting April 16- 30, spaced one week apart. After the second injection I totally lost all control of the balance on my left side. I am now going through vestibular rehabilitation to relearn how to keep my balance with just one working system. I am learning how to walk and keep my balance using my right balance system, my eyes and my legs. As of today, I have had no vertigo/spinning attacks. I know that I am having a drop attack, because I can feel the pressure in my head and the ringing in my ear, but as I sit and wait for it to hit, nothing happens. The last step, if the gent. does not work is the VNS (Vestibular Nerve Section) where my Dr. will cut the nerve, thus, surgically destroying my vestibular system. I have unilateral Meniere's, which means it is only in one ear, and God willing, it will not go bilateral (into my right ear).

I will update this as things (God willing) improve for me. :-) I hope my story has helped anyone out there going through the pain and frustrations of having Meniere's disease and I want you to know, YOU ARE NOT ALONE WITH THIS!

July 13,98The Gent. Treatments did not work for me. The vertigo attacks are back and it now looks like I will be getting the VNS surgery done soon.  I have been going through so much frustration and disappointment the past couple months. But, I will do what needs to be done, for me and for my children. And I know that God will see me through.

Dec 1, 1998:Well, I am getting the VNS done Dec 16th.  It is the last thing to be done for me.  Please Pray for me that day that all goes well and it works so I can have my life back!  Thank you!

Dec 29, 98
The VNS was a total success!!!  I am now vertigo free AND my tinnitus has almost completely gone away! I am still recovering, but, so far so good!

Feb. 21, 1999 Aww how I wanted that to be the end to my story!  But, unfortunately, the saga continues :-(  On January 26th it was discovered that I had some low tone hearing loss in my GOOD ear. My Dr had me start my diuretic again and put me on Predisone, he was hoping that I had some brain swelling due to my VNS surgery. 2 weeks later I woke up from a sound sleep with tinnitus in that ear extremely LOUD! Since then I have been having attacks like that daily, when the tinnitus goes up my hearing drops to the point I can barely hear. I had a new hearing test Feb. 18th and it showed a little more loss in my right ear. It has been confirmed, I have Bilateral Menieres (both ears have it). We do not know how long it has been in my right ear too, I do know that I have never had any hearing loss in it and the tinnitus? Well, it could be I have had it, and I just thought it was coming from my left ear. Sometimes the noise in my head is so bad I just want to yell "shut up in there!!"  I have never had the fluctuating hearing loss before, and I tell ya, I DON'T like it!!  So far, when I have these attacks all that happens is the hearing/tinnitus and I get a little "off" balance, but not enough to really bother me. I just pray that the vertigo NEVER starts in that ear!!  I am doing ok, I think I have accepted it pretty well. Right now I am dealing with learning to cope with the hearing loss problems.

April 27, 1999Well, the vertigo is back.  I THINK it is from my left ear, the one I had the VNS on, because I feel I am spinning the same direction as before. My Dr wants me to pay close attention and try to determine if it is coming from that ear, or if the vertigo is coming from my right ear. If its from my left ear, he wants to do a labyrthdectomy (take out the whole inner ear).  If its from my right ear, I do not know what we will do.

Feb. 2000 The vertigo is still happening. It was happening more and more (less than once a month, then a couple times a month, now once a week, sometimes a few times a week) (Had an attack the end of Jan. that lasted 36 hrs!)  I had the ENG test done a week ago, and when I had it done in June, my VNS ear showed 0% activity, now, I am having 30% activity.  This means there was at least one tiny balance nerve fiber missed during surgery and its regenerating (growing back), causing me to start spinning again. :-(   I don't know what will happen next, I have a new Dr. because mine went back into teaching, but, the new Dr. really knows his stuff too.

Now, the waiting starts.  The Dr. has me taking Methylprednisolone (This is a steriod) for 3 months. The reason? Because the hearing in my right ear has fluctuated in the past, and he wants to make sure it stays stable.  If it stays stable, it could be that the hearing stuff in my right (good) ear was just from the VNS brain swelling.  If that is the case, I am NOT bilateral and still can stop the vertigo!  Fingers, toes, arms, legs and all crossed!

Sept. 2000 Well, I am doing ok vertigo wise, having maybe an attack every couple months. The difference?  I had never tried Valuim before, and it is helping a lot. Only problem, the new Doc wants me to go off them.  If I start getting bad again, my GP will perscribe it, because my ear Doc is talking a second VNS, going in from another angle.  NO MORE SURGRY!  So, I say nope. And my GP is against a second VNS too.  The steriod I took just made me sick, didn't do anything for the hearing loss.  I have lost more hearing in both ears since my Dec. test.  My left ear is down to basically nothing, and I have mild loss in my right (in the high pitches).  I have been thinking about it, and WHY would I wake up with hearing loss in my right ear when the VNS was in the LEFT??? Makes no sence!  Talked about this to my Doc, and we both think its hereditary. My dad, his brothers, sister and mom all have some degree of loss, (my dad's is the highest) and it started when they were in their late 40's and 50's (I am 37).  Now, the Doc thinks I was going to loose some hearing later in life, but because I have an inner ear disease, it started it early. Makes sence to me.  So, am I bilateral?  I don't really think so becuase I always spin the same direction.

I still have the unbalanced feeling, (I walk with a cane to help me, its like having a railing next to me, because I list to the left a lot), nauseated a lot, and BOTH ears have tinnitus, feel sleepy, etc.

I had a major emotional break a year ago, and I am FINALLY to the place that I have accepted my Meniere's and hearing loss.  Sure, it can be hard to deal with at times, but, I have stopped fighting it and started adapting to it.  It makes a big difference!  I am spending more time with my kids, esscecially my son, who will be going to Alaska in Jan to go to college.  I will miss him a LOT! And also, my little girl is 13 and needs me to "keep an eye on her" hehehe.

So, as of today, that is basically what is going on, I know I will never be the same, but, if you adapt to the changes, it helps in coping!  Also, I HIGHLY recoment talking to a counselor a couple times a month. I know it has helped me!

Thanks to all who have wrote me asking how I am doing.  Sorry I haven't updated like I wanted to, it has been a rough year for me!

Thank you to all who have wrote to me and all who care!