I belonged to this group many years ago, and it was life saving for me in terms of steering me toward treatments beyond what most doctors knew about at the time. I was originally diagnosed in the late 80s with a question mark; had a few attacks, minor hearing loss, but no ringing in the ears, so no one was quite sure if it was MM or something else, and then it kind of went away on its own. It came back with a vengeance in 2002, and it was a rough few years -- I lost most of the hearing in my right ear and went through 10 doctors, each more useless than the rest, before I actually found one who was able to help get it under control. We tried a variety of things (some of which helped more than others): low-sodium diet, diuretics, a tube, the Meniett Device, John of Ohio's regime, anti virals and a beta histine from a compounding pharmacy. Eventually it went into remission. Aside from the hearing loss/distortion in my bad ear and the occasional ringing in that ear, I've remained largely symptom free over the past 13 years, though I stayed on the diuretics to be safe. I went off them in April of 2015, when I had unrelated surgery; by the time I got out of the hospital, I was doing fine without them, so we opted to stay off them. A few weeks ago, I had my first vertigo incident in 13+ years, bad enough to take valium for (I hate the idea of valium and view it as an absolute last resort, though I always carry it just in case, having never forgotten the 16-hour vertigo spell that had me trapped on my bed in a hotel in Europe, alone and unable to reach the phone to get help). Lots going on recently -- too much stress, too little sleep, too much work and business travel -- so I thought maybe this recent spell was just a sign I overdid it. I was shaky for the new few days afterwards but seemed to bounce back, so I was hoping it was a one-time thing. Last night, though, it happened again. I took valium and went to bed early, but I'm still feeling crummy today. Haven't taken anything except a diuretic, and trying to walk it off/ignore it, but still feeling off balance and largely like crap, with ringing in my ear and low-level vertigo. The weather is damp, and has been for several days, and I do seem to do worse in this weather. I'm 52, presumably in peri-menopause, though have not really had symptoms of this yet. But I'm wondering if the return of MM symptoms is related to my age and resulting hormonal changes. If so, does anyone who's been through this have any suggestions for ways to minimize the impact of this? I've restarted the diuretics, and am thinking of restarting the John of Ohio regime which I found to be somewhat helpful back in the early 2000s. Not ready to jump into the more invasive stuff at this time (I did well with a tube in my ear, but the periodic ear infections were miserable, and the constant echo wasn't fun either; I toyed with gentamicin when it was really awful, but it wasn't an option since there was some question of symptoms that might have been the beginnings of being bilateral, though it thankfully never really went anywhere). Currently, I feel the sense of fullness and sloshiness in my bad ear, and just a little pressure in my good ear. Not that everyone here doesn't already know this, but can I just mention how much this sucks? I'd almost forgotten how crummy this makes you feel, and how hard it is to work in a state of feeling off balance and sloshy. Ugh. Anyone have any thoughts on peri-menopause related reoccurrences and anything that can be done for that, as well as weather-related bouts of this, and anything I can do to minimize that, short of moving someplace where it never rains? Thanks! Janice
I am 10 years younger than you, so not at the perimenopause stage, but I also have linked symptom severity with changes in hormone levels. A few others on this board have as well. In my case, my symptoms went from pretty bad to nearly non-existent during my 3rd pregnancy. (I developed Meniere's between my 2nd and 3rd babies so I only have one pregnancy to speak of here relating to Meniere's). After giving birth, the MM symptoms came right back. I went on the Pill after I was done nursing him and things sort of evened out... though my symptoms overall have been on a downward spiral. I (KNOCK WOOD) seem to not have any true vertigo for the past year, but all the other crud is there, and I'm up to a moderate to severe hearing loss in the affected ear. I've also tried the gamut of treatments from antivirals to JOH and at this point and just on a diuretic and betahistine. As for the weather -- I am also very affected by barometric changes. I live in the foothills of the Rockies and although we have many days of sunshine -- not as much grey and rain as other places I've lived, it isn't just the rain that does it. We have pretty sharp changes in barometric pressure here (often not with any rain at all) and that's a big trigger for me. I don't have much concrete advice for you but wanted to say, yeah. Hormones and barometric pressure changes. I am right there with you.
Hi Jessie, I am in my mid 30s and my family goes through menopause very early. My mom was through menopause by 40. There for I am seeing significant changes in my hormones already. My symptoms are 100% for sure highly triggered by my monthly menstrual cycle. I have done hormone testing to confirm I am low in testosterone and progesterone. I did have a couple of attacks in 1998 but for the most part my symptoms started around 2012. If I do the following it helps. Regular exercise. As this levels out hormones and I don't get the spikes I get otherwise. I would recommend you have your thyroid tested and hormone tests done someone that specializes in this and endocrinologist or hormone doctor. I also take dimm at night to assist with hormone binding and decrease inflammation. If I stay away from my food sensitivities, sugar, and to much dairy, take a diuretic and exercise regularly it keeps my fluctuations down. I take a very very small dose of testosterone and progesterone.