Q&A with BÉA
Q&A with BÉA: Frequently Asked Questions (FAQ)
Sometimes people offline ask me questions about my experience with Ménière’s Disease. Below are my answers to some of those questions. If you have a question not addressed in my posts, please leave a comment below and I will try to answer it.
Beatrice T J
Q: What type/frequency/intensity of symptoms did you have when you first started having symptoms?
A: Hmm, well for me symptoms started with unilateral hearing loss for a month of so followed by long periods of remission. There was some aural fullness too. The hearing loss basically happened over night. I went to bed fine then woke up the next day noticing that I’d had some hearing loss in one ear. I confirmed my suspicion by listening to the dial tone on my phone alternating from my bad ear to my good ear. By doing this I got a good idea about what sort of hearing loss I had. From this I knew that I’d lost some hearing in the low frequency tones of my left ear. After some tests, this was professionally diagnosed by an ENT as Cochlear Hydrops.
The hearing loss at this early stage was annoying but it didn’t greatly impact my life. I could still hear people well enough to converse with them without trying like I do now.
Cochlear Hydrops is often the diagnosis preceding the Ménière’s Disease diagnosis. I wasn’t diagnosed with Ménière’s Disease until a few weeks before my first Meniere’s vertigo attack (when the hearing loss started again), which was about four years after the initial Cochlear Hydrops diagnosis. I was lucky to have a three year remission in between both diagnoses. Ah, those were the days!
Q: How have each of your symptoms changed since the beginning (I think that you indicated that you have had symptoms for 8 years now)?
A: Well let’s go through the symptoms.
1. Fluctuating, progressive unilateral hearing loss
This symptom stems from the damaged cilia (hair cells) in the cochlea & the fluid pressure changes of the inner ear.
After four years since my Ménière’s Disease diagnosis the hearing in my bad (left) ear doesn’t really fluctuate anymore. It’s still slowly progressively getting worse, but I don’t have those real hearing loss drops that I initially had followed by good gains during remission. On the days when I started going into remission, usually during a course of prednisone (steroid tablets), the improvement in my hearing was really obvious to me. It was as obvious as being let out of a dark room into a sunny daylight. Unmistakable and almost as fast.
2. Aural fullness
This symptom is due to the increased fluid pressure in all of the inner ear: the cochlea & the vestibular (which includes the semicircular canals & the otolithic organs).
Aural fullness is one of the things you notice when the hearing starts to go, or within hours or a day prior to having a vertigo attack.
For me it’s probably one of the least debilitating aspects of Ménière’s Disease. At first it’s annoying, but there are many far worse things about Menieres than aural fullness. Like they say, “don’t sweat the small stuff”.
The thing that’s interesting about aural fullness that it’s like “a canary in a coal mine”. When aural fullness becomes more noticeable, cancel your appointments for the next few days and prepare for some quiet time at home as an attack may be imminent.
I probably have aural fullness now, but until it fluctuates one way or the other I don’t really notice it on a daily basis.
To me, aural fullness is the symptom that holds the key to curing Ménière’s Disease. Stop aural fullness and you can stop Ménière’s Disease.
This symptom is due to damaged cilia (hair cells) in the cochlea of the inner ear.
Ah, the dreaded tinnitus. This symptom fluctuates like aural fullness but it’s much more noticeable and annoying (particularly to spell). I notice tinnitus first thing in the morning when I wake up and the last thing at night when I’m in my quiet bedroom before I drift off to sleep.
I do notice tinnitus on and off throughout the day, but usually I’m concentrating on other things so my attention is not drawn to it.
If it’s noticeably louder (not just because I’m in a quiet room), then that often means a vertigo attack is imminent. So again, cancel your appointments for the next few days and prepare for some quiet time at home. Aural fullness & tinnitus are colluding against my work & social life.
4. Dizziness, Disequilibrium & Brain Fog
These symptoms are due to fluid pressure in all the vestibular (including the semicircular canals & the otolithic organs) which damages the hair cells and membrane. This affects vision via the Vestibulo-ocular-reflex (VOR). This in turn affects the message being sent along the vestibular nerve to the brain. The brain then needs to adapt via neuroplasticity.
I put these symptoms in one category because they’re basically variations of the same thing. Dizziness, disequilibrium & brain fog are in my opinion are almost as bad as vertigo attacks because it is ever present and makes everything that much harder to do.
In the early stage of my Ménière’s Disease diagnosis, these symptoms weren’t really an issue for me. It has only been since my hearing levelled out around moderate hearing loss that I really noticed their debilitating effects. Dizziness & disequilibrium make me bump into things more often like doorways and coffee tables. They also make it much harder for me to any kind of action or movement on TV (even a slow pan movement). Plus I find that reading or scrolling text on a screen is aggravated by these symptoms.
Since the moderate vestibular damage (45% weakness) I’ve incurred from Ménière’s Disease I often find it difficult to think, type, or put sentences together the way I used to. It sometimes feels like Dyslexia. If you could only see how much trouble I have typing. Thank God for spellcheck. J
I used to be much more quick-witted; a mind like a steel trap. Hard to believe I know ;-). Now four years into this disease, I’m so thankful when I have a day with clarity of mind. It almost makes me feel like going for a drive, which I haven’t done for about nine months now. If I didn’t have this constant sense of disequilibrium & brain fog I would be driving and have my independence back again.
I’ve also found that I get mental fatigue more easily. I can’t push myself mentally the way I used to. I’m also more prone to headaches and sometimes migraines. Because of this I keep my days fairly open and try not to over commit myself with multiple events in one day or over consecutive days.
In many respects dizziness, disequilibrium & brain fog are the most debilitating aspect of Ménière’s Disease. At least attacks have a time frame of disability. You know that they will eventually pass. This is not the case with dizziness, disequilibrium & brain fog. You really have to alter your entire life around the intensity of these symptoms.
This symptom is due to fluid pressure in all the vestibular (including the semicircular canals & the otolithic organs) which damages the hair cells and membrane. This affects vision via the Vestibulo-ocular-reflex (VOR). This in turn affects the message being sent along the vestibular nerve to the brain. The brain then needs to adapt via neuroplasticity.
Dizziness & disequilibrium can make me feel nauseous, particularly in shopping centres aisles. Most of the time I don’t feel nauseous. It’s mainly when there are consecutive rainy days, on days when I’m feeling run down, or on days when I feel like I might have a vertigo attack. Watching movement on TV (like action sequences) can make me feel nauseous too.
Usually I’ll make a cup of ginger tea first (or chew on a ginger lolly or tablet) and see how I go with that. Fresh air, a glass of water and a lie down are also a good start.
I find that a Stemetil (Stemzine) 5mg tablet or a Zofran Zydis 4mg wafer helps with nausea. You don’t want to be using these prescription medications on a daily basis as they can have some bad long-term consequences.
6. Sudden Vertigo Attacks
I believe this symptom is due to two things.
In the early stages of Meniere’s Disease, I believe acute vertigo attacks (1-6hrs) are due to the endolymph fluid pressure (in the entire inner ear) rupturing into the perilymph at the apex of the cochlea. The fluids mix causing a chemical & movement imbalance in the fluid which sends corrupted messages from the otolithic organs (of the affected ear) along the vestibular nerve to the brain. This affects vision via the Vestibulo-ocular-reflex (VOR).
As the disease progresses to moderate hearing & vestibular damage (over a number of years), acute vertigo attacks are replaced by more frequent mild vertigo attacks (5-30mins). I believe these mild vertigo attacks are due to the brain having difficulty processing the conflicting movement messages received from the damaged vestibular, versus the healthy vision & proprioception. These attacks are mostly triggered by perceived visual movement. If I’m feeling run down, these attacks can also be triggered by stressful thoughts or thoughts that require a lot of cognition (like trying to work out something technical).
I try to minimise attacks by simplifying my life as well as:
· watching my diet (reduced sodium, caffeine & alcohol)
· taking medication (Serc, Natrilix SR, Valium, Stemetil, Zofran)
· complementary medicines (fish oil, ginkgo biloba, women’s multi-vitamin, vinpocetine, bioflavonoid, etc… see John of Ohio regimen on the Diet page for more info)
· intratympanic dexamethasone injection/s
· vestibular rehabilitation therapy
· cognitive behavioural therapy
· lifestyle changes
· I also make a conscious effort to bring more joy into my life and not to sweat the small stuff.
MORE Q&A COMING SOON!!