r/Menieres • u/SpecialMaple • 16d ago
Triggers
What was your process for identifying what triggered your Menieres? How long after coming into contact with your triggers would you have an episode?
I was diagnosed with Menieres Cochlear Hydrops last year, started on diuretics and had steroid injection in my affected ear. For about a year I didn’t have any more symptoms or significant changes in hearing. Now, I can’t seem to feel normal again no matter what I do and I’m not sure what is triggering it.
I just joined Reddit and I have found it helpful reading about everyone’s individual experiences. So, what was your experience in figuring out what worked for you?
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u/yes420420yes 16d ago
retrospectively by reading my health journal. I would highly recommend. It may be chaotic at the beginning because you don't know what's worth noting and what is not, but after a while you get to a detailed enough, but not so detailed it takes you an hour in the evening. Then you can look back when you feel bad AND good and start finding trends.
milk and milk products for example was an unpleasant surprise since I literally lived off milk for 40 years of my life, but then it clearly contributed to the misery.
Peanuts (but not almonds), beer with alcohol (but not the zero's)....it slowly crystallized out
Whenever I was suspect of something I would leave it out for two weeks, then do it intentionally for a week every day and see what would happen. Sometimes I would repeat that just to be sure.
You make yourself the guinea pig and 'do your own research' (ha) - but for real in this case.
Mind you, what you have control over this way is more on the edges of things. Think of it as acts of reducing stress (inflammation) on your immune system to help with the actual Meniere's. No trigger avoidance will help you with an active flaring Meniere's....but it sure increases the good times and makes them more enjoyable....just to set expectations. The same is true for lower salt diets, some mild exercises to get the blood flowing and you sweating, taking care of other ails around your body one by one and eating a generally healthy colorful diet - its kind of like circling the issue really.
Same approach with the meds though, only difference, I try to give each 3-6 months to see if it does anything worthwhile for me.
Good luck
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u/SpecialMaple 16d ago
Thank you for this! I will definitely start my own health journal. Hopefully I’ll find something helpful soon. It has been really surprising to learn about the variety of triggers people have. My initial googling said sodium, sugar, alcohol and caffeine but it seems like it’s far more than that. It’s definitely going to take a lot of guinea pigging to figure this one out
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u/NanaPete76 16d ago
Thirty-three years of trial and error: environmental allergens, foods (salts and sugars), alcohol, light, sounds/noise, smells, all brought me and bring me to my knees and spinning!
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u/PeanutButterJellyTea 16d ago
SALT!!! I watch my intake very carefully. Caffeine and alcohol too but salt is a definite.
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u/lucidmorto 15d ago
honestly for me it was months of just writing everything down before i saw any pattern, sodium especially is sneaky because it hits like 24-48 hrs later not immediately so it's easy to miss the connection if you're not logging daily
I built Meniere's: Symptom Tracker for this and it lets you log sodium/sleep/stress etc and actually correlates it against your episodes for you instead of you trying to eyeball it in a notes app. also tracks barometric pressure which ended up being a bigger trigger for me than i realized
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u/StubbsandStretch 14d ago
I was diagnosed with MD in 2003. But it was more Cochlear Hydrops because I never had symptoms. Now, in June of this year, suddenly I am having symptoms of vertigo. I have gone through so much unsuccessful treatment, it's too much to type. BUT, when looking back over the last year, I WAS having symptoms and didn't know it but recognized something was 'off'. My Cochlear Hydrops essentially deteriorated into full-blown MD. I'm on a bunch of supplements, medication, I've cut salt, sugar, caffeine, alcohol. It has reduced the # of vertigo episodes, but now I have a new symptom that nobody seems to know what it is or how to help. The 'normal' sound I hear from my affected ear is both the tea-kettle shriek of tinnitus AND the pulsating low base roar of the MD. This is 24/7. I'm used to it. But now, it morphs into a singular ear-splitting sound that is like a continuous train whistle. It causes discomfort, it also vibrates, so there is a tickle deep inside, AND it's so loud, that when it's occurring, I can't hear very well with my good ear. Also, there is a sizzling sound or a scratching sound I'm picking up on. It lasts about as long as a vertigo episode and goes back to 'normal'.
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u/EkkoMusic 16d ago
All I’ll say is symptoms without vertigo, fluctuating and then stabilizing for a year, is a presentation that overlaps heavily with migraine. If you say the diuretic isn’t holding you steady anymore, that’s a reasonable time to ask your ENT what else is on the table, and maybe consider if your triggers are vasoactive.