I'll try to keep this pretty short. Following two severe "attacks" of vertigo and attendant nauseousness/vomiting and loud tinnitus--last September and then again two weeks ago--I was just diagnosed by an ENT and audiologist with Meniere's disease. I also have 50% hearing loss in my left ear, high and low frequencies, which I guess is typical of Meniere's. I've actually had unexplained dizziness/vertigo, sometimes nearly disabling, going back to third grade, and I've had on/off hearing loss since my early-mid-20s.
I'm fine with this diagnosis--actually, I'm ecstatic in a way because it is a diagnosis of some kind. I've been on a diagnostic epic for the past five years, beginning at age 32 when I had a sudden and extreme onset of neurological problems. Over the past few years, I've also had severe joint pains that flare up and then fade. They run the gamut, and I've had every possible lab test from blood levels, hormones, infectious diseases to MRIs to EMG, EEG, EKG, and more, all revealing nothing other than the hearing tests last week. Other than being diagnosed with cluster headaches and abnormal knee-jerk reflexes, all my exams were normal and most doctors suggested that everything I said was wrong with me was either "in your head" or the result of anxiety.
So my questions:
1. I of course read up on Meniere's online as soon as I was diagnosed, and I read that diagnoses span all ages, but that they typically occur among people age 40+, and that people who are under 40 often go on to be diagnosed with something else years later (multiple sclerosis, for example, for which I've been screened a thousand different ways). Does anyone here have informed thoughts on this? None of my neuro or joint problems are explained by this diagnosis, so I'm wondering if the Meniere's diagnosis ended up being attributed to something systemic for anyone else.
2. If you have Meniere's or know someone who has it, I'd love if you would share you experiences. I've read that it is typically progressive and although I'm prepared to accept whatever comes, I'm a little concerned about attacks coming more frequently. And I'm most nervous about the "drop attack" I've read about. That would make driving a nightmare, which I don't really do all that much since I live in a city, but I have also had thoughts that if it were to happen, for example, I could just drop in the middle of a busy intersection while crossing the street...eek. Is the "drop" really COMPLETELY without warning? Is there any way to know when it's coming? Again, this has never happened to me, but I can't help thinking about it.
3. My doctor prescribed a diuretic, told me to eat less salt (this explains a lot...I'm mostly a healthful eater, but salt is my major vice), and gave me an anti-nausea medication in case I get another attack. Any other tricks of the trade? My tinnitus and ability to hear seem to have remained the same, fluctuating mildly from severe to mild, for the past few days since I've been taking the diuretic. I'm going back to the doc in three weeks...it seemed like he expected the problem to have mostly cleared up by then.
Anyway, thanks for your time, and thanks in advance for sharing your experiences.
PS, not sure if it's really relevant here, but in full disclosure I've also been posting on the Lyme boards recently because all my symptoms could be attributed to Lyme, if not MS, and I just found out from my mother that I had Lyme in 1997 when I was 19, and according to the prescription, I was given about half the dosage of doxycycline for half the time typically prescribed, so I may well have been carrying a Lyme infection for the past 20 years. If so, that may or may not relate to the ear disorder.