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Meniere's Disease

@aylp
Well if he does he's keeping it a secret from me. So is my shrink who percribes major depression meds but won't tell me my diagnosis.
What's the point in not telling what the diagnosis is?
Seems crazy... Or that's my condition
 
Welcome @Larry OT

In regard to your questions about diuretics: I was taking a double dose of Trimterene 37.5MG/HCTZ 25 MC caps

This prescription has not bothered my T at all. I am now tapered down to 1 dose per day.

In terms of my symptoms, I have had perpetual ear pressure since April but it varies in severity. I have constant low T...not too bothersome until the evenings when it is quieter. I don't have to mask it.

Here is what is interesting: When I first got these symptoms, they came on strong. My T was quite loud and it freaked me out. At its loudest it went from my T ear to the middle of my head and then over to my right ear. It was not 27/7, but it would come on for up to 7 hours at a time. Now it is low level and I may even have it in my right ear but I don't know for sure as it seems so low. I am very aware of it in my left. That is the side that has the most noticeable hearing loss. I have loss in both ears but the right is just mild loss and the left is moderate and drops down to severe when it fluctuates.

I also get headaches that cycle around as well as what seems to be sinus congestion, but the ENT says I don't have sinus congestion....but dang it feels like it at times. When I was having anxiety and some depression on the onset, I was prescribed Xanix which I haven't taken in a couple of months.

I have been to an allergist and she is going to start me on shots. My allergies are not severe but she thinks the shots will help to keep my congestion at bay which will help with the MD symptoms, she thinks. I have had the shots before and I can give them to myself so not a big deal in that respect.
 
@Teri
Thanks for the welcome.
Why taper from diuretic? Did they help the fullness and possible additional hearing loss?

I had sudden hearing loss and this low drone sound, which I have had before with no issues that came and went after few days. I thought it was sinus issue but may be hydrous, who knows.

But the hearing came back except for very low frequencies which recovered a bit.
Then it happened 10 days later again but when tested after weekend, the test looked the same as before without loss.

My hearing seems to fluctuate quite a bit it sounds to me. I'm an audio engineer and composer so I know when things aren't right.

My doc haven't said one way or the other but gave me a diuretic that seemed to stop the loud drone sound pretty quickly but that's my new tinnitus sound as well so it's just quieter drone.

I'm pretty upset with it and worried about managing it on top of my bad high frequency tinnitus.

Let me know about your experience with diuretic and if it helped anything.

Thanks
 
@Larry OT

I feel like the diuretics have helped. The reason the doctor wants me to taper back to one diuretic a day is to determine if I will maintain my current condition. If so, then there would be no need to double up. The initial reasoning to double the dose is because the ear specialist wanted to get more aggressive when the more severe symptoms first came on.

I also feel that lowering salt has helped me greatly. I completely gave up alcohol. I never really was much of a drinker anyway. I previously drank wine but i can take it or leave it. I am trying to give up caffeine but that is my Achilles heel. I really love coffee and chocolate!!!!! Salt reduction has additionally been difficult. I love to cook and dishes free of salt just don't taste the same to me. sigh.....:(
 
I envy the guys who are symptom-free in between attacks. I don't get any attacks, so the suffering is constant...
I know what you mean. The suffering feel never-ending. It´s so much more and severe than just a tinnitus.
Are you a new MD-sufferer?
 
@MichaelM @aylp
My doc won't confirm if I have it. Wants me to see a specialist. I thought he was one...so much for Ivy League schools.

Are there any meds that help improve the sudden hearing loss when it happens?
Diuretics ?
Cortisone injections in ear?
Hammering a nail in my head?
Thanks.
 
I was given steroids when my hearing dropped suddenly. I did not tolerate it well at all. I had the worst case of sinus and bronchitis ever. The ENT told me that the steroids lowered my tolerance and I just caught something. I don't necessarily agree with her. I think is was a reaction to the steroids. At any rate, my hearing came back up...don't know if it was a result of the medication or just came back up on its own. It has been up and down since then.
 
@Larry OT

I think there isnt any help for the sudden hearing loss. Hearing goes up and down with MD. I had a whole year with a bad hearing loss and now, this month, it was a little better when they did an audiogram. That´s weird but it is very MD at the same time.

Where i live the injections are for the severe vertigo attacks, i mean if you have one on a weekly basis.
quote from Wikipedia "gentamicin is sometimes used intentionally for this purpose in severe Ménière's disease, to disable the vestibular apparatus"

From what i understand it doesnt help with hearing loss.

Diuretics? wont do any harm. i take them for a month every now and then. Easy way to lose some extra weight... ha ha but i dont think they help with the hearing loss either. They might help for the ear pressure and and prevent vertigo attacks.

Never had an ear injection myself. the whole idea is scary.
 
I made a list of what i have had this year with MD. Sometimes in the last spring i had all these at the same time.
I was about to lose my sanity as some of you know...

- severe TINNITUS: 11 months in a row now. It has changes in tone, frequency and loudness but it´s there 24/7
- Hyperacusis: sometimes for a week or so. comes and goes.
- annoying ear pressure: 11 months straight
- really painfull ear pressure: 1 week. Feels like inflammation.

- pulsatile tinnitus: 2 months. woosh, woosh in the rythm of my heartbeat. absolutely cruel and vicious thing.
- violent vertigo attacks: 2 times. Next time i am going to film it for the video in Youtube for the world to see.
- mild vertigo attacks: 2 times. Still able to walk somehow.

- auditory hallucinations: 3-5 times. I thought this is it: i am done.
- documented hearing loss in my sick ear. fluctuates a bit.
- anxiety and suicidal thoughts when MD is at it´s worst phase.
- brainfog, problems concentrating, nausea, dizziness, fear of death, death wish, loneliness, despair, hope, hate, chest pain, moderate panicking, feeling of being incapacitated...........

This is my year 2014.

So to the all new MD-sufferers: this disease, or syndrome as it should be called, can give you a variety of burden and obstacles. Never give up.
 
You have posted some good information @MichaelM

I get the brain fog too, but not only do I have difficulty concentrating. But, in addtion, when I am writing I can't seem to spell words correctly to save my life....and I am a school teacher! LOL I just laugh at myself so I won't cry.

I have a question about the auditory hallucinations. Is it similar to schizophrenia in which you hear phantom voices? That is an interesting symptom.
 
Good question. I met a new psychologist yesterday. We discussed the hallucinations matter.
She said the mechanism of my hallucinations is different than in schitzofrenia. I think MD doesnt cause it but the combination of stress,anxiety,fatigue i had in the last spring.

Psychologist said it can happen to anyone if put under huge pressure for a long period of time.
 
Hello, my name is Jimmy I'm a firefighter in north western AZ. I've had Ménière's for 7 months and was having attacks EVERY SINGLE DAY at least one a day typically two - three a day. After 11 drs and a multitude of tests I was diagnosed in Las Vegas and started HCTZ for water retention. It helped a little. But at the same time I've been researching the regenokine treatments. Well the long story of it I also have back problems and used that to get the treatments done in Santa Monica CA with lifespan medicine Dr Moshe Ben-Roohi. Outstanding individual I must say!!
But it WORKED For me it's been a week and I'm at 80% and getting better. Dr Ben-Roohi gave me a 50-50 if the Meniere's was caused by inflammation in me then it would work if not then it wouldn't work. But it did and it started to work after the second shot series out of four. If you have any questions please ask and I will answer the best I can and yes the regenokine was $15,000 (fifteen thousand) I had to take a loan but at least I'm better and can work!
 
hello, ffJimmy.

That's a whole lotta chuck of change you dropped for your "cure". I was also recently dx'ed after lots of testing, and I am in a very quiet period right now. Just because you are 80% better, does not mean you are cured of Meniere's. This disease goes through cycles - waxing and waning of symptoms. Be careful where you put all your eggs.

Also, some Meniere's-like problems aren't really Meniere's, but a virus. With such a quick recovery, makes me think it wasn't really Meniere's.

Regardless of the diagnosis, I'm glad you are feeling better.
 
Hello all.

I've read through the whole thread and really feel for you guys. Especially you MichaelM, you seem to be suffering so much.

I am still awaiting diagnosis for my condition but it certainly behaves like Meniere's. I have suffered the tinnitus for 5 years now and i occasionally (2 or 3 times per year) get severe vertigo attacks which last for several hours, during which i am completely incapacitated. If i do so much as move my head it triggers a vomiting session. Tomorrow i am going for an MRI scan which will hopefully rule out any tumor.

I am one of those people who is symptom free between episodes, but unfortunately the episodes are coming much more frequently lately. I'm so scared about it, it's like you get glimpses of your life before you had the condition, and then bang, out of nowhere, with no trigger, it comes back....

I think Dana White's story is interesting, but i'm also aware that it is possible to go several years without having an attack, so i guess he can never be sure it won't come back.
 
Hi there, @MattL and welcome to this MD-thread.

I have been taking a little break from this forum during the last weeks. For some reason i have had now 6 relatively good weeks with Meniere´s. That is the new record since this started.

Yes, i´ve been suffering horribly this year. There is no denying that. I was about to lose my sanity. I think i did, at some point. The bad phase started about a year ago and in the last spring i was done. I couldnt see any future, it was all bout the suffering and loliness. At that point i had had 6 months with continuous ear "feelings" 24/7. Pain, pressure, Tinnitus from Hell, nausea, couple of vertigo attacks, anxiety, stress.... I couldnt take it anymore. Then something changed last July/August and i started to feel a little better.

Now i feel somewhat OK but i am still afraid when the next bad phase is about to start.

Your vertigo attacks are like mine... they last for hours, vomiting, unable to move. Not funny.... it is something words cannot describe. I can relate, believe me.

I hope you all fellow Meniereans feel good. Thank you for your support once again.
 
@MattL

Welcome to the thread. I am so sorry you are having the vertigo attacks. From what I have read the vertigo attacks are the most bothersome symptom. I have not had an attack yet but my dad has had them severely. As I stated earlier, I think that MD or whatever we have is somehow genetic.
 
Hi there, @MattL and welcome to this MD-thread.

I have been taking a little break from this forum during the last weeks. For some reason i have had now 6 relatively good weeks with Meniere´s. That is the new record since this started.

Yes, i´ve been suffering horribly this year. There is no denying that. I was about to lose my sanity. I think i did, at some point. The bad phase started about a year ago and in the last spring i was done. I couldnt see any future, it was all bout the suffering and loliness. At that point i had had 6 months with continuous ear "feelings" 24/7. Pain, pressure, Tinnitus from Hell, nausea, couple of vertigo attacks, anxiety, stress.... I couldnt take it anymore. Then something changed last July/August and i started to feel a little better.

Now i feel somewhat OK but i am still afraid when the next bad phase is about to start.

Your vertigo attacks are like mine... they last for hours, vomiting, unable to move. Not funny.... it is something words cannot describe. I can relate, believe me.

I hope you all fellow Meniereans feel good. Thank you for your support once again.


Hey Michael!

It's great to hear that you are going well! This sort of news gives everybody optimism for better days ahead!

When you say you are feeling ok, can you describe that for me? Is your T from hell reduced? What would you rate it out of 10 now? As opposed to when you were having a hard time? What about the dizziness and vertigo? Have you done anything recently which you could attribute to making you feel better? Are you still taking the betaserc?

How is your job going? May your good days continue!! :)
 
@MattL

Welcome to the thread. I am so sorry you are having the vertigo attacks. From what I have read the vertigo attacks are the most bothersome symptom. I have not had an attack yet but my dad has had them severely. As I stated earlier, I think that MD or whatever we have is somehow genetic.


Hi Teri

Yep as far as i'm concerned the vertigo attacks are by far my biggest concern. The main issue being that they can simply happen at any time (driving a car is a serious worry). However the middle of the night vertigo wake up calls are usually the scariest for me :nailbiting:, because usually i don't wake until just moments before the vomit session. Awful! :depressed:

Interesting that you are not experiencing vertigo attacks...do you take any medication? Is your tinnitus in both ears or just one? I think that vertigo is more prevalent when only one ear is affected by tinnitus.
 
I don't get the V either. Early stages of Ménière's perhaps? From what I have heard people have it in varying degrees and everyone is different. For some, vestibular problems manifests as "balance issues", others with full blown V.
 
Thanks Sue...that is something I missed. I definitely have balance problems and lightheaded. If this is genetic and I follow my dad's path, I will more than likely have the vertigo as well.

@MattL
I have read quite a few posts from MD folks and some say they get a warning before an attack...typically louder T and a drop in hearing. Some say a certain type of headache will also bring one on. Then I also read some have an odd feeling before an attack. I have T primarily in my left ear but also in my head and over to my right side. I barely hear it in my right ear, but nonetheless it is there.

At this point, Matt, I only take a diuretic. My ENT prescribes them. When I went to the ear specialist he wanted the ENT to be more aggressive with the diuretic and doubled the dosage. My ENT wants me to taper back to one just to see if it makes a difference. I have done so and in a couple of weeks, it has made no difference.

I have some Xaniax on hand to take if my ear goes back to the loud pitch ringing I had when all of this started. At one point my left ear was not mask able. It was not 24/7 but did go for up to 7-8 hours at a time at its worst. I haven't used the Xaniax but I don't leave home on trips without it...too scared of a level 10 freak out! LOL
Also, Melanonin supplement helps me with sleep...I just take it as per needed. I also take Benedryl at night if I feel "stuffy" and Clairiton during the day. I don't feel the regular Clairton does anything for me.

I try to limit salt, this gets hard after a while...I don't care for "bland" food. I also try to limit caffeine, but really I only went to decaf coffee which still has caffeine. I devour chocolate but I need to STOP!!!!! :mad: It is my vice.
I stopped drinking alcohol entirely. Other than some wine off and on, I never was much of a drinker anyway...so I don't care about the booze. LOL :joyful:

One of the doctors on this forum (a retired ENT) suggested eliminating wheat for 8 weeks and keep a journal. At some point I want to try this. I did go to an allergist and she thinks that allergy shots will help me. I have started them so I will let you know. I don't have severe allergies but she thinks enough that the congestion could have settled in my inner ear.

I have a question for you all....I feel like I have constant sinus congestion in my nose/head...not severe but enough to notice...but the ENT never confirms that. Interesting....does this happen you anyone else?

Also, what is the consensus on a Flu shot? Did anyone get one?
 
@ Teri
Here are some links for chiropractic care that have been to reported to help.
The first link is for a chiropractic adjustment of the facial bones which they say will help vertigo and also the chronic congestion I have not had this one done

The second link is for adjustment of the atlas joint or C-1 joint in your neck I have had this one done and it seemed to help my bilateral Minera's for approximately six days before I had to have another adjustment


Jimmy
 
Hey Michael!

It's great to hear that you are going well! This sort of news gives everybody optimism for better days ahead!

When you say you are feeling ok, can you describe that for me? Is your T from hell reduced? What would you rate it out of 10 now? As opposed to when you were having a hard time? What about the dizziness and vertigo? Have you done anything recently which you could attribute to making you feel better? Are you still taking the betaserc?

How is your job going? May your good days continue!! :)

Yes.... the "OK feeling" isnt living withouth the symptoms, not at all. the symptoms are just a little milder: my new base camp, i think.
Tinnitus at the moment is what i believe it is for many of the T folks. I can hear it if i want to, easily, but i can also keep my focus on something else for an hour or so. and that is a long time.

I have a long history with T. My very first experience is an acoustic trauma from firing a shotgun. I was 13-14 years of age back the. Little did i know about the tinnitus--. No hearing protection... haha. My ears were screaming for a couple of days. That T disappered. Then in my late teenage years i started to sense mild T. It didnt bother me really... i just noticed it. Must have been what the majority of Tinnitus is for the folks everywhere. Easy to habituate to after some suffering and the first shock wave. Took some years to get used to it.

Then came the Meniere´s and hit me with a vengeance. and i mean with full force.

When T from Hell hits it is screaming like jet engine with a loud dog whistle twist in it. So loud it is ridiculous and i sometimes do laugh in disbelief. "this is not for real anymore", you know what i mean. I remember writing in this thread something like "T now is probably as loud as T can be for a human being". And i still believe it cannot get any louder. The loudness in that T is beyond any understanding. I could hear it in a stadium concert. Once i tried masking it with rain falling sound from an earbuds... no success. i couldnt turn the volume up enough to mask my T.... the pain came before my T was masked. it was totally devastating and horrific.

When it is on there´s no way masking it anymore. I can hear it above anything thanks to hearing loss in my sick ear. so the rating is about 7/10 now and in the Hell-Mode it goes to eleven and a half.

Last time i had that 11 i might have had some sort of a panic attack and i was becoming suicidal. needless to repeat it but the Hell-Mode isnt only about T but every single symptom combined for me.

No dizziness now, no vertigos now... just basic T and mild ear pressure.
For some weird reason my hearing is now little bit better. Not good but better.

I havent done anything special. I take betaserc 2x24mg per day. Diuretics sometimes. I had a huge stress at work and that has now gone since i quit working there. That might have helped a little.

I tend to think all this MD -business is out of my control. I feel like a passenger with this one.

@Teri, thank you for your support. It means a lot to me. Like i said i am not a religious person myself but i thank you for your prayers, too.
 

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