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!