Meniere’s disease is an abnormality of the inner ear causing a host of symptoms, including vertigo, tinnitus (a ringing or roaring sound in the ears), fluctuating hearing loss, and the sensation of pressure (feeling of fullness) in the affected ear. The disorder usually affects only one ear. Named after French physician Prosper Ménière who first described the syndrome in 1861. (you can read more about Meniere’s Diesese on the National Institute on Deafness and other Communitcation Disorders site. Meniere’s Disease.)
My Story with Meniere’s Disease:
I had Meniere’s Disease for years before I was officially diagnosed. Each time I had a vertigo attack I thought I had food poisoning or caught he worst virus known to man. I had horrible ear infections when I was growing up, I was even hospitalized for them a couple of times, so when my ears felt fuller, or my hearing was off, it just wasn’t anything new. I just racked it up to my wacky ears. Plus, for much of this time I didn’t have health insurance, or had very little, and since the attacks would go away I didn’t go to the doctor.
The first vertigo attack I can remember happened in 1994. I only had severe vertigo about once or twice a year for a number of years.
Then one day in 2001 I had the worst attack yet, and I had health insurance this time. I had been having rotational vertigo for over 7 hours and throwing up the whole time. My boyfriend (now my husband) decided to take me to the ER. It was there that I first heard of Meniere’s. The ER doctor told me I should see an ENT (Ear, Nose and Throat Doctor), because he thought I could either have those calcium deposits in my inner ear that cause vertigo, or I could have Meniere’s Disease.
So I went to an ENT, and he said I had Meniere’s. I now know that I should have had more test than he conducted, and that he really didn’t know enough about this disease. Unfortunately, it took me years to find that out. in October of 2009 I had a vertigo attack that showed I was now having symptoms in both ears. It was at this time he told me that I may need to see someone else, that he really didn’t know that much about this disease. (yes I had been seeing this doctor for over 7 years and he finally told me he didn’t know much about this disease) Luckily, during most of this time I would have long periods without an attack. He put tubes in my ears and said that was why I wasn’t having attacks. I’m pretty sure I was just not having attacks because I was in remission for those time periods.
After he told me he didn’t really know that much about Meniere’s I went on a search for someone who did. I found a doctor, at Duke’s Otolaryngology, Head and Neck, ENT department and Vestibular Disorders Clinic. He is a neuro-otologists specializing in diseases of the inner ear such as Meniere’s disease, benign paroxysmal positional vertigo (BPPV), vestibular neuronitis, vestibular labyrinthitis, migraine associated vertigo, among others disorders.
Before I could even see him they had to put me through a series of Balance Functioning tests to make sure I had Meniere’s and not something else. These test included:
- VideoNystagmography/ElectroNystagmography (VNG/ENG)
- Rotational chair
- Vestibular evoked myogenic potential (VEMP)
I was given all the tests except for the one where they run warm and cold water in your ears, I had tubes in my ears so this test wouldn’t have worked.
The results ruled out other causes and it was determined that I have Meniere’s Disease. Dr. K prescribed a low sodium diet, (I was already following this) a diuretic, and steroids to try to slow things down. He also prescribed Valium and Phenergan to help when I had an attack. Unfortunately, I continued to have 2-5 attacks a week. I couldn’t do anything without help. It was during this time that I had an attack so bad that I started hallucinating and I was rushed to the hospital in an ambulance. The ER worked at getting me calm, and trying to stop the vomiting. I was there for 6 hours. At one point the doctor told me that he couldn’t understand how I could still be throwing up with all the medication they had given me.
When I went back to see Dr. K we decided to try Endolymphatic Sac Enhancement Surgery. After much searching, I found that different doctors do different surgeries and call it the same thing (Endolymphatic Shunt Surgery, Endolymphatic Decompression Surgery… some insert a “shunt” some do not. my doctor did not). Basically I had a Mastoidectomy. (surgical removal of the mastoid process) with a bit of extra stuff. Dr. K removes more bone so the sac can decompress (on its own) and will have more room to expand. Leaving the endolymphatic sac and dura with no bone covering it. However, most of this is under your ear, so it’s pretty protected. This is to allow the sacs in the ear to have room to expand when they fill with fluid. You have 2 different fluids (endolymp and perilymph) in your ear and if they mix then you end up having horrible vertigo. The hole is left open in the skull. The surgery takes about 2 hours. They cut from the top of the ear all around the back to the bottom of the ear and fold the ear forward to be able to get to the area they need to. This is a pretty invasive operation, you do get to come home the same day, but recovery can be long and painful (I had this surgery on each ear. The surgery on the first was painful but without any other symptoms really, the second was not painful but I had severe vertigo for a week. I’ve been told that my recovery was unusual in both cases, normally this is not a hard surgery to recover from.) However, it was worth it, I only had one real vertigo attack from April 28th – August 11th. Unfortunately, I have bilateral Meniere’s and my left ear started causing me to have attack after attack.
Dr. K and another doctor at Duke, Dr. Linda Gray Leithe, noticed that some people who present having symptoms of Meniere’s were actually having an imbalance of cerebrospinal fluid pressure (CSF). Dr. Gray is a neuro-radiologist, They decided to see if I was one of those patients. On November 3, 2010 Dr. Gray performed a lumbar puncture on me. She found that I had low pressure. On November 24th, she patched 4 leaks that they found. (She found a total of 6, but she didn’t want to have my pressure go too high by patching more.) Unfortunately, those patches didn’t hold and I had to have it done again in January 2011. That time they used something different to patch my leaks and it should hold. I felt better for 5 months. NO vertigo! The hearing in my left ear was staying up and stable, my right ear’s hearing didn’t come back (that was not unexpected), and I still had tinnitus in both ears, but life was good.
Unfortunately, in June of 2011, my symptoms started to return. The hearing in my left ear dropped from 96% word recognition on a hearing test to 0% in 6 months time. My right ear has only dropped a little, but I soon began to notice it was getting more distorted. I went back in for another Lumbar Puncture and found my CSF was low again, I was patched up again…this happened 5 times between the beginning of July 2011 until November 2011. The doctors tell me they have learned much from me. I presented as having low CSF pressure, so they treated it with patches, but I kept “blowing them out”. It appears I may actually have high pressure that have caused me to “blow out” leaks in my spinal column. Every time they tested my pressure was after a blow out, and I would be low. I was in such a miserable state by this time, I needed some relief. I spent nearly 6 months of 2011 having vertigo nearly every day, I rarely left my bed, and very rarely without help. So we decided to go another route.
On December 1st. 2011, I had the Endolymphatic Sac Enhancement Surgery on my left ear. The initial recovery from this surgery was so drastically different from the first surgery if I hadn’t known it was the same surgery I would have sworn something else was going on. After the first surgery I had a lot of pain, but no real vertigo, this time I had minimal pain, but severe constant vertigo for over a week. The vertigo got better. Over all my vertigo was reduced after the surgery, but it did not go away. I would say it was reduced about 60%, and the intensity was reduced quite a bit.
After this I was treated for High CSF for quite some time. Idiopathic Intracranial Hypertension. It helped for a while. The migraines got better, the vertigo got a bit better, but nothing went away unfortunately.
I was on medication for CSF for a while but it didn’t seem to help much. Today I’m on a migraine medication that could help a little with high CSF but really I’m not treating it and things aren’t different than they were. I’m not having symptoms of Idiopathic Intracranial Hypertension. The pressure in my eyes are normal. I don’t really know about the CSF, and I don’t think the doctors do either.
I lost my hearing and have to have cochlear implants to hear. In July of 2012 I received my first cochlear implant in my left ear. In September of 2013 I received my second.
Today I still have vertigo on a regular basis. I go through spells where I have less, and spells where I have more. I am disabled due to the Meniere’s. I no longer drive. I use a walker most of the time. I am on disability. I’ve lost a lot of my independence. I live day to day, and I enjoy every moment to the best of my ability.