First time poster, long time sufferer.

Hi everyone. Just found the forums and wanted to say Hello. I was just diagnosed with Meniere’s even though I have suffered with this very badly for about 7 years and occasionally on and off for about 20 years. Finally found a doctor who had a clue and figured out what it was. Although since they don’t have a cure, that does not help a lot, but gives a little relief just knowing the reason.

I was hoping to find out or gauge the level of my symptoms. Doctors can’t possibly understand how bad this problem gest when an “attack” occurs. I also got BPPV Vertigo in my left year about 6 years ago which is a separate issue, and they thought Meniere’s was just part of the Vertigo. But it’s not. I was lucky enough to get both. BPPV can be fixed with the Epley Maneuver. Not fun but works.

My Meniere’s has gotten worse and worse over the years. From no problem, to little foggy/dizzy/panicky/aura type feelings on and off all day to full blown attack. At the worst, I can spend 8-12 hours on the bathroom floor by the toilet, wife bringing me ice packs and bowls of ice water that I dump on myself to cool down and make myself so cold I shiver uncontrollable as it’s the only things that helps in the slightest. I literally can barely move (unless needing to stick head in toilet if you know what I mean) and honestly, I am just praying for death over and over again.
When that ends, it takes 24-48 hours to recover fully before I can get back to work.

Then of course there are the attacks that just mean hours or even a couple days of feeling that aura or feeling like a full-blown attack like that is ABOUT to come on, using ice packs, going in ice cold shower, trying to avoid a full-blown attack. The stress and anxiety of that is almost as bad as the full-blown attack.

Anyway, I’m sure I am talking to people here who understand. I am going to start reading messages, I was just wondering if this is common that other people experience or is mine, like I suspect, the upper limits of how bad this can get? Of course, I have all the normal, turn the head to quickly, bend over, watch something on TV that spins, all make me feel lousy for a few seconds to a few minutes stuff as well.

Well, Hello! Happy to share my experience and hope to learn from everyone here.

Thanks,
Bob.

 

Hi Jim,
I'm 47 and hearing is perfect. no loss, no ringing. Its the dizzy/vertigo type issues. I would say the "aura" as i have heard some describe it is the worst problem. Meniere's does not give me vertigo like BBPV does, where the room spins, its this overall horrible feeling that i dont know how else to describe. The Ice is in no way a treatment. I get to the point on the floor like about to pass out, but never do, just in that state for hours and hours feeling like death, The ice is the only thing that gives maybe a 10% relief. My theory is

Just tried diuretics medication for first time, since just diagnosed and that brought on the problem, took meds for 2 days, suffered horribly for 3 days. done with that option. Sudafed helps a little as a its definitely worse when the Barometric Pressure is higher. No one has ever suggested anything else that could help. Tried all the motion sickness bands, pills, etc. Meklazine is joke for me. Was given meds they give to chemo patients for nausea, does nothing. Was reading here how B5 and B6 have helped some people and plan to try that...TODAY.

Was on a diabetic medication for years that was causing those bad attacks to happen every couple of weeks, once i suspected that was making this worse, i stopped that med and the really bad attacks was reduced to ever couple of months. but this is an all day every day problem for me.

Hoping to learn as much as i can from everyone here and hope sharing my experiences might help someone too.
Thanks!

 

A bit more information, a anti-histomine/anti-serotonin med called CYPROHEPTADINE taken at max does of 16mg a day, actually reduced my problem 80% for 3 months. But that type of med is something that you body adapts too so it eventually stopped working. I am going for round of allergy tests soon. The idea of not taking sudafed as needed for 5 days before allergy tests scares me though as symptoms will be worse but cant have that in you for the tests. But wanted to let others know about that medication.

I have also done the low sodium, no alcohol, no caffeine (almost) for 6 weeks now with no change at all from that. Im diabetic so things like deli meats which are low/no carb but very high sodium was a staple in my diet, now its much harder, but went probably from 5000mg sodium a day to 1000-1500mg/day and zero change in how i feel.

I'm guessing that my full blown attacks that put me on the floor for half a day are when the Endolymph sack actually ruptures into the Vestibular membrane in the inner ear, and that is the time it takes for it to start to heal and the fluids to return to normal. Just a guess but seems to make sense.

 

The specialist i am seeing who diagnosed it as Menieres with an ECoG test is an ENT who specialists in balance issues. He is an Otologist which i know goes hand in hand with a Neurotologist although a little different. I dont have migraines either. For me its all about the dizzy / lightheaded / nausea / horrible feeling stuff.

 

Thanks for the comments and suggestions. Yes, of course i am still learning more about Menieres and understand I have only some of the symptoms which i have read is normal. I dont have the hearing related issues. Its the mainly balance and by aura i mean that foggy feeling. But its foggy to the extreme of nausea, unable to focus until i am literally sick on the floor. The idea that when the pressure is off balance inside, feeling overall sick and horrible, and when the Endolymph sack actually ruptures into the Vestibular membrane is when i get sick to my stomach for usually half a day or more until it slowly starts regulating back to normal does explain my issues, but of course who knows if it is the true cause.
But i am open to any options and as always, looking to figure it all out.
Unfortunately there are no "triggers" for me. All these years, no pattern, nothing specific that causes it. I can feel fine, then feel it coming on in my head, pressure, foggyness, light headed, dizzy, then it might just fade away or it might get worse and worse. Of course when it starts, panic sets in know what "might" happen and that makes everything much worse. When the barometric pressure is high (above 1015mb) I am usually much worse. low press, I usually feel better.
I am trying the B5/6 thing as its an easy option at the moment.
Thanks everyone!

 

Its not that i feel its not MAV, that was not suggested to me as a possible cause. Once the test came back positive for Menieres, the diuretics were given, took it twice which brought on an attack, worst in 9 months. That was just a week ago. I have to go back now to tell the doctor that is the end for that medication for me.

My diet has changed at times because of diabetes so i dont see anything in it that has been so consistent that it would be food related. I have tried the gluten free, caffeine free, dairy free, etc. It has never changed this issue.

I was ok yesturday and half of today. a few hours ago i felt the aura feeling in my head, check the barometric pressure and it was at 1017 (yesturday was 1006). Its like i can detect it with my head. so now my head is feeling solid, heavy and its bringing on that feeling. And Yes, just writing this and reading your post is making me feel much worse with anxiety. I know that problem well.

Stress is something I have in excess. Self employed and work 60+ hours a week. So I know that is affecting it too somehow. and of course when i feel so bad i cant possibly work, that just makes me more stressed.

I will certainly speak to the doctor about MAV but the reason i didn't go right for that as an option is i never have migraines even though they say "you may not always have". Also i have had BPPV so i know what true vertigo with nystagmus is and i dont get it with this issue. So its all very hard to figure out and completly debilitating in life.

Thanks!!!

 

Bonlyn,
An ECoG test along with ENG/VNG seems to be the main tests for Menieres as i understand it. ECog came back as positive on the right side.
My ENT is an Otologist and specializes in balance / inner ear issues.
I am in the Hudson Valley area so not far from White planes at all. At this point this doctor has been the most helpful so until he gives me a reason, or i feel he is stumped i would not switch, but its always an option when he is not getting me anywhere.

I have had multiple CT scans, rules out tumors, etc. and shows other issues like how the sinuses look, clogged, etc.
Just for the record, and not to sound unappreciative (I am here to share, learn and hear all the ideas and options) but its not like this all just happened in the last week. I have been dealing with all this for almost 7 years. Its only recently that someone said the word "Meniere's" as what they think the cause it. I have been through many tests, trials of not eating this or not eating that. etc. I have completly read up on Meniere's and understand what it is. Just still trying to see IF they are right or not.
Thanks for all the thoughts, suggestions and information!
Its nice to hear all the people who have had some relief here from one solution or another.

 

No! not at all.
Thats the downside of all written (typed) conversation. Emoji's are important to express emotion. I just wanted to say that i am familiar with all the basics, like what Meniere's is, etc. so save people time/effort. I greatly appreciate all the information and opinions. I take it all in.

Day 2 of the B5/6, so waiting to see if that helps. I absolutely feel stress brings the attacks on more, but there are times that its just so bad from sinus pressure and whatever else that nothing can stop it, no level of de-stressing prevents a full blown attack. And spending 12 hours on the bathroom floor next to the toilet with ice packs and wishing to just either pass out or die is bad beyond any words can describe. So any little bit i (we) learn that might find a solution or easy all out individual problems is great.
Thanks!

 

I have the Ondansetron too, when i feel horrible though, it does nothing for me. I carry it in my emergency bag with all the other meds that "might" help a little when things get back. I try to never leave home without it. Ain't life fun living like this ?