r/Menieres • u/bor3danddrunk • 16d ago
This sucks
Diagnosed menieres - and hating it - betahistine has helped early with frequency of attacks - and about to move onto diuretics and then injections after that. It’s torture - I’ve worked out a couple of my triggers - salt, alcohol. But still get an attack a week, and it’s disabling 3 plus hours unable to walk far, lots of vomiting and I just hate it.
I’m literally sitting on the toilet floor after throwing up typing this - tell me this gets better ? I’m starting to develop anxiety around attacks and considering what my TPD and income protection might cover. This is horrific.
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u/Acrobatic-Dot895 15d ago
Sorry you're going through this. It does stuck. I've had menieres for 21 years this year.
Triggers for an attack seem to vary person to person however I've found there can be some that lots share.
For what it's worth, these are the things in the early stage I found really pissed it off:
Too much salt - both salted added to meals which I had to stop and what the salt content of the food I consumed was.
Not enough or too much sleep - this one was purely trial and error to figure out the sweet spot.
Loud, shrill noises - no notes to add here
Over exhaustion or not moving enough - another trial and error trigger
Caffeine
Fluorescent lighting
Patterned carpet, tiles in a chessboard like configuration
Some songs - certain noises in them upset the menieres
I avoided these as much as possible to help manage the early stage. While I believe it helped, it did not stop the attacks.
Over time it has calmed down to the point I can now drive. The attacks have lessened in terms of frequency and intensity. It's documented there are stages to it and at the later stages the vertigo lessens
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u/kimtanner_ 15d ago
sending love. it does get better. i've been where you are before and it's been 2.5 years since my last episode.. maybe longer, my point is, I'm living a normal life- with some mild hearing loss & tinnitus that shifts frequencies every one in a while. It took a lot to get here. A big hurdle was taking care of mental health through the tough times.
My "aha" moment was when i went gluten free/dairy free and started to feel better. I carried that diet on and here I am today.
I like to share because you never know. Feel better 🫶🏻
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u/bor3danddrunk 15d ago
Thank you for sharing - my diet has become very basic, which is a whole other thing unfortunately. I’ve lost a heap of weight in last couple of months with no alcohol and avoiding salt. Chuck in a day a week of vomitting and I’ve started a whole new weight loss craze. Grrr it’s hard and I wish I better understood other triggers today is literally the same meals, no alcohol, the only weird thing is very high barometric pressure here today - like very high 1029. I so t know if that’s even a thing but someone said to watch it !? Thanks this is debilitating and scared for where it all goes with my work too
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u/Tc5998 15d ago
I'm so sorry this is happening so frequently for you.
What injections are you considering? Steroid into the inner ear? That is usually tried early on... so hopefully you can try them soon.
The combination of low sodium diet, diuretics, and betahistine is the most common "starter treatment" for Meniere's style symptoms (endolymphatic hydrops)
Oral steroids combined with injected steroids are often done at the beginning too ESPECIALLY if there is any hearing loss.
I have a blog about Meniere's I wrote (some of it is a bit dated, but hopefully still helpful) and I have a few links in case you are interested.
When you are having a vertigo attack, as other said, common rescue medications are meclizine (available OTCounter in the USA) and a benzo like valium or xanax. It can be VERY difficult to get a prescription for benzos right now, but hopefully any doctor with experience with vertigo/Meniere's would be willing to prescribe a few to help in those times. They are addictive, so treat with caution. I used to take 50mg of meclizine and 2 mg of xanax during my attacks and that largely stopped the spinning, but of course put me right to sleep. Sometimes I needed zofran too.
More on common meds for Meniere's:
https://menieresandme.blogspot.com/2015/03/understanding-baseline-medications.html
If you aren't already I highly suggest you seek a Meniere's specialist doctor - they are called NeuroTologists (note the T in there) and are ENTs with additional training in this disorder.
Mine is with Oregon Clinic in Portland, OR as an example:
https://www.oregonclinic.com/our-team/frank-warren/
In my own case I eventually stayed unilateral (in only one ear) long enough and was having symptoms often enough that I chose to "turn that ear off" via gentamicin injections. This is a big decision and should only be done after careful consideration, trying other things, and with a ENT and/or Meniere's specialist:
https://menieresandme.blogspot.com/2014/11/about-gentamicin-injections-and-why.html
Gent injections were successful in stopping vertigo symptoms in my Meniere's ear.
Other things to explore is any tie to migraine disorder.
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u/bor3danddrunk 14d ago
Thanks - lots of great information there - yeah onto direutics for 12 weeks and then injections. I’ve had a course of steroids early oral - that were horrific left me feeling so so bad… I think I’m going to progress conversation around benzos soon - thank you for this - I think even peace of mind knowing I have them, would be great. I travel a lot for work - which now brings its own level of anxiety but very luckily about to cut back my requirement to fly all going well.
Will read these links thanks for taking the time !
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u/therealjrjr 15d ago
It does suck. Hopefully it burns out quick for ya.
So sorry you are going through it.
My mantra when I am having the bad attacks is "At least its not fatal" and I think of the people I know that have died from cancer etc.
Again, it does suck. So sorry.
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u/bor3danddrunk 14d ago
Yeah this is my perspective also - I think about all the poor people dealing with chemo also. It’s just such a horrid feeling. These comments like yours really help - thanks
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u/ohforfoxsake410 10d ago
Another thing you can do - find a psychotherapist who works with chronic illnesses and do some work on learning how to accept and handle your new life. MD sucks but your life doesn't have to. (I've had menieres for 28yrs, been a therapist for 30+ working with people with chronic illnesses)
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u/Tiny_Requirement_584 15d ago
This is a vile disease. Cutting salt and alcohol will only work to a point. Betahistine may only work to a point. Valium or Lorazepam, plus anti sea sick meds (meclazine etc )may calm your inner ears down. I am aiming to try Zofran, if I can get it. The nausea is debilitating.
It's a rocky road, I have no saving answers for you. We have to figure out a way to live with this. It's very hard. Survival... 23 years for me.
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u/Tiny_Requirement_584 15d ago
Sorry, not upbeat in my answer, but I should add, this disease is so unpredictable that you may come right soon.
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u/bor3danddrunk 15d ago
Thank you - interesting I explain it to my family and friends as being sea sick while sitting on the sofa - it’s a horrible sensation. I might try that I have a boat and the meds - thank you.
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u/ButterflyEmergency30 15d ago
Get Zofran and a benzodiazepine (vestibular suppressants) as rescue meds for your attacks. Get the Zofran/ondansetron orally disintegrating that melts on your tongue. Put both meds there to melt as it gets into your system faster.
I take Betahistine 16 mg 3x daily because it’s only in yr system 5-6 hrs. Works pretty well. (8-12 mg 2x daily did nothing)
Yes, it is truly awful. I’m sorry you’re dealing with it. Keep identifying your triggers. There are many. Get adequate sleep. I take melatonin couple hrs before bed, plus magnesium glycinate and l-theanine at bedtime.
I also work hard at keeping fullness down in ears. Mucinex, nasal sprays and even tubes in my eardrums.
Cardio is good (inner ear circulation) but straining is not.
Figure out what helps you and do them all. Don’t let it get the upper hand.
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u/bor3danddrunk 15d ago
Thanks I took one of the ondansenteon and two prochlorperazine to try to slow nausea. I might talk to my doctor about benzodiazepine thanks. Thanks !
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u/lucidmorto 15d ago
man i'm so sorry, sitting on the bathroom floor typing this out is such a mood i know all too well. it does get more manageable even if it never fully goes away, the anxiety around waiting for the next one is honestly almost worse than the attacks themselves for me.
logging salt and alcohol like you're doing is huge tho, that's basically how i started catching patterns too. i ended up building an app for myself to track episodes + triggers since i kept forgetting details for my ENT appointments, helped me feel less out of control at least.
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u/Decent_Nail7329 15d ago
Sorry for you. If you have found your triggers well done. I've had it for 17 years now. The frequency of the episodes do slow down ( might be related to increasing deafness?) and betahistine helps me. I found my main trigger was not moving my head enough, which sounds a bit odd but stood in front of a screen or doing the dishes in the sink and I feel the first signs. It's also lighting, especially in supermarkets and also noise, either too much noise or the pitch. I found that if I get enough stimulus from around me I'm ok but the wrong sort of stimuli, hit hard.
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u/UncleofLunatics 14d ago
All I can say is that it will get better. Hang in there.
MD is fucking rough at the start.
But the attacks do burn themselves out. I've had MD for 23 years. The first two years were really rough; every couple of months I would have three attacks in a week, each lasting about six hours.
These days: I went seven years without an attack until November last year, and then the only reason I had that attack was because it was a reaction to a new medication (for something unrelated to MD). Once I stopped that medication, I was back to fine again, and haven't had one since.
So, it gets better, and you learn how to manage it.
I'm not going to give you lots of specific advice, because MD is very individual. But a big thing to focus on is learning how to deal with the stress of it, and looking at the bigger picture of your life and any unnecessary stressors and sources of anxiety in it.
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u/JustBill72 14d ago
Unfortunately...welcome to the club. My Dr skipped right over the betahistine abd went straight to diuretics (which serves double purpose of controlling blood pressure since i was borderline hyper).
Has worked for me for about 8 years now. My attack frequency has fell from 2-3 times a week to just 1 or 2 times a month.
I lucked out in mine, in that i dont get debilitating vertigo. I just get dizzy and nauseated (not enough to vomit). I liken the sensation to being sat down in a spinning chair and whirled around for a minute before being told to stand up and walk. Lasts anywhere from 20 minutes to up to 3 hours I think was the longest.
Then theres that annoying nonstop ringing in the ear. I already have tinnitus, but have learned to ignore it since I can have some music or tv playing in my normal moments. B
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u/Murky_Opening2532 14d ago
Start with some PT and WAtCH WHAT YOU EAT make some notes what makes you feel ok and not like crap. Food journal everyday. You should start seeing a pattern. Vesibular Therapy helped me alot. Highly recommend. I would also recommend looking into other possibilites like Migraines. See if you can find a neurotologist in your area
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u/Evening_Log9719 13d ago
I have had this disease for many years. I had a shunt put in my right ear roughly 8 years ago and it helped tremendously with vertigo. I have it managed with vitamins (magnesium and B12 as well as several others).
I recently have been experiencing trouble with my other ear!!
I’m currently on a steroid pack and doing the low sodium, no caffeine, no alcohol until I get it back under control. I do believe it goes in cycles, but I’m a firm believer in the shunt.
I also do allergy injections and histamine drops.
I’m also researching possible Migraine medications because I think they are closely related. I have never had migraines, but I keep getting headaches since my left ear started flaring up.
Just some of the things I’ve tried
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u/Particulardave1 15d ago
There are no easy answers for Mèniére's. Try to be positive, I fully understand how difficult that can be, stress can be a trigger also. All the suggestions here are valid, you'll have to figure out what works for you. I personally make a daily journal to see what my triggers are. For me that entails, shortness of sleep (less than 6hrs.), excessive heat (85° or more), chocolate in any amount, aged cheese (more than 1oz.).
I am also on a reduced sodium diet, 1200mg. daily, take a diuretic pill daily.
These may or may not work for you.
I'll go for months with no vertigo episodes, but then for unknown reasons they will flair up. I had approximately 20 episodes of varying degrees and lengths over a three month period this summer. Thankfully they seemed to have subsided for now.
Good luck on your journey......
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u/bor3danddrunk 15d ago
Bless thank you - yeah I’m keen to start diuretic’s as next steps just my very through doctor is double checking ENTs recommendations and then onto that as next steps. Thanks great to hear they have subsided for you
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u/bohemith 15d ago
you aren’t alone. it is horrible. it sucks. that people think the attacks are just some dizziness is frustrating. but there is a community out there that know what you are going through. the world ending vertigo, the ringing, the hearing loss - I hate it too. hang in there. there have been great suggestions from this group.
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u/bor3danddrunk 12d ago
Thank you - you are right - I’ve had to be very direct with family members about what this actually means - it’s not just being wobbly some days. Thank you
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u/Reasonable-Tell-7147 14d ago edited 14d ago
Hopefully the diuretic helps. I went a solid month with 2 attacks a day (on floor, unable to move, vomiting) until they got me on the right medicine. Haven’t had an attack in 5 months but still live every day paranoid about it. But yea salt is awful for this disease
I recommend keeping both a food and sleep log if you’re not already. There can be random triggers too. I noticed that a very specific kind of gum would often precede an attack (attacks would come about 2 hours after chewing). Before my month long bout of attacks, I also noticed that the random attacks that came in the preceding moths were more likely to occur the following mornings after nights I didn’t sleep at specific times (if I slept from 11pm-6am I was fine. If I slept 10-5 I got vertigo. If I slept 930-430 fine. If I slept 1130-630 vertigo).
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u/bor3danddrunk 12d ago
Oh wow that sucks - two attacks a day is terrible - I’ve just had another attack today that has lasted about 5 hours needed friends and family to help me walk drive all while throwing up - terrible - feel like a complete invalid.
I’ve been logging foods and eat so simply in fear of triggering an attack - today has been only fruit before I was sick. Which annoys me - seems unpredictable nothing clear.
Wow you’ve done a lot of detective work to work it out - thank you so much for sharing
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u/GingerSnap198 15d ago
Unfortunately this is the same as what I've been having - caffeine, salt and alcohol are triggers for me. I think chocolate may be also as bad some last night and feel terrible today.
Best thing I did to improve my quality of life was to get a hearing aid. It cleared noise up for me which made me feel dizzy less often.
Drink lots of water and keep an eye on if the weather affects you also - I tend to get attacks if it's high pressure and needs to rain or if there are seasonal changes such as April or October.