Anybody else dealing with Miniere's disease?

Marchmellow2 · May 2015

I've been having attacks all week and I just don't know what to do. The vertigo isn't even the biggest issue for me. My biggest issue is that I'm already 100% deaf in my right ear. So I only have one ear. When I have attacks I get major fluid build up in my left ear (my only working ear). Which causes me to be completely deaf!!! Right now I'm completely deaf and I can't hear anything except muffling. I'm going crazy! What if my 1 year old wakes up in the middle of the night? .... I won't hear him. It's just so debilitating and the only relief is taking diuretics which my OB has told me I can't take! I just don't know what to do. Anyway are there any other ladies on here that have Miniere's disease? What do you do for the vertigo and fluid in your ears?

sbost0118 · May 2015

I've heard that watermelon is a natural diuretic. I'm sure the doc wouldn't mind you pigging out on some watermelon. Does your baby monitor light up? Do you have another doctor that regularly treats your condition? Someone who might be more knowledgeable about it than your OB?

BostonBaby1 · May 2015

^^ I would definitely say call your ENT (or drive yourself in to speak with the receptionist if you can't tear on the phone.) Good luck and keep us posted! Feel better sweetie

Marchmellow2 · May 2015

Yes I've already had to see the ENT twice since finding out I'm pregnant. The last time I went in, he took a fucking needle and injected me in my ear drum!!! (Excuse my language... It needed the eff word ok lol) That hurt and it was a very emotional and scary day for me! The doctor was very rude too. He screamed at me because I tried to grab his hand...ummm reflexes I couldn't help it! He put a needle through my ONLY ear. I'm getting emotional just thinking about that horrendous day. Anyway, That was only 2 weeks ago and the fluid is back! There is no way I'm going through that pain again or every 2 weeks for that matter! I will totally try watermelon! Thank you!

sbost0118 · May 2015

Do they do ear tubes for adults?

gerblah · May 2015

I don't have any help, but just wanted to say I'm sorry that you're going through that. I have vertigo and they've never been able to find the cause, just that it gets worse with stress. I spend a good portion of every day since about week 5, spinning. I can't imagine if that was the easiest part of it.
Hopefully they can figure something out and if you do have to go back in to the ENT, maybe your SO can go with you?

sbost0118 · May 2015

@gerblah My father suffered from vertigo few several months and they finally figured out that one of the tiny bones in his inner ear was loose. They fused it and he's better now.

gerblah · May 2015

I was in the Navy when it started and they wanted to do an exploratory surgery to check the bones in my inner ear. I was unwilling to let them. Were they able to see your father's on x-ray/MRI? Mine were unclear.

sbost0118 · May 2015

I'm not sure how they figured it out, I'll have to ask him.

BostonBaby1 · May 2015

sbost0118 said:
Do they do ear tubes for adults?

THIS!!! I'm so sorry that you went through that with your ENT. Definitely sounds like an awful experience. Is it fluid in your inner ear? Or your middle ear? Because if it is in your middle ear then an ear tube (which I'm sure you've had plenty of in the past, but if not they are placed in an outpatient procedure) may be a possible solution.

Marchmellow2 · May 2015

BostonBaby1 said:

sbost0118 said:
Do they do ear tubes for adults?
THIS!!! I'm so sorry that you went through that with your ENT. Definitely sounds like an awful experience. Is it fluid in your inner ear? Or your middle ear? Because if it is in your middle ear then an ear tube (which I'm sure you've had plenty of in the past, but if not they are placed in an outpatient procedure) may be a possible solution.

Oh it's definitely inner ear. I've never had middle ear issues, even as a kid. I've never had tubes in my ears either, OMG I couldn't imagine! I know that's something they do with ear infections. Thank God I've never had an ear infection. The reason I lost my hearing in one ear was due to bacterial minnagitus (sp?) when I was 10 months old. I was actually deaf in both ears until I was 6 years old when my left ear miraculously opened up. Anyway, thank you guys for the support! After I wrote my last post above I emotionally lost it! Just the thought of having another injection triggered something serious in me. So thank you all again for the support!! :x

Also, Against my OB's orders I took a diuretic an hour ago. Hopefully just one diuretic will clear my fluid issues right now. I will definitely look into natural diuretics too. I have an OB appt tomorrow and I will discuss all this with her. Thank you again ladies!!

BostonBaby1 · May 2015

Oh, sweetheart... I'm so sorry that you're going through this. Hopefully everything will settle down a little bit with the diuretic, but I would seriously consider asking about the ear tubes. I have had more than a dozen sets put in over the years, all of them when I was little… And I never ever recall being uncomfortable. You get them put in under anesthesia and you don't feel them at all. I had a lot of hearing loss when I was little due to ear infections. I had 80% hearing loss in one ear and 60% in the other. It finally resolved when they took my adenoids out. I hear at better than 100% (very lucky.) I don't know where in the country you are, but if you would like me to call my ENT, I can certainly ask them if they know somebody good in your area.

Jazmine928 · May 2015

I am sooo sorry to hear about what you are experiencing. My mom suffered tremendously from that disease until she had a labrynthectomy three years ago. She is still recovering from the surgery but it has completely eliminated the vertigo which was paralyzing her life. I know how isolating the disease can be as my mom knew no one who had experienced her pain. Message me if you would like me to put you in touch with her for support.

rockinmathchic · May 2015

I have Meniere's Disease, but mine doesn't sound as bad as yours is. I haven't done any treatments or anything through the doctor. My episodes can last from a few minutes to a few days and range anywhere from muffled, diffculty hearing, ringing in the ears, and vertigo. It typically goes away on its own, so I haven't tried to seek out treatments. So, unfortunately, I'm not sure what can help. I am sorry you are going through this. I know it must be diffcult and I hope you find some relief soon!

sbost0118 · May 2015

Two of my kids had hearing loss due to fluid in their ears that ear tubes finally corrected. They never had ear infections which was why the first one was 3yo and speech delayed before we realized there was a problem. The little one we had tested every few months until we put tubes in. Apparently crappy ear physiology runs in my husbands family.

Would a hearing aid help in your situation? Just for the time being while you have to be off your meds. Also, ENTs are like flies in my area, can you go to a different one? Your guy sounds like a jerk.

Marchmellow2 · May 2015

@BostonBaby1 I will totally ask my ENT about that. Or maybe I should just find a new ENT. I just feel like this one knows my issues and getting a new one would mean possibly starting over. I guess it's worth a try. I can go to a different one maybe later this week and see if it works out. If doesn't work out then I could just go back to this one. Thank you for telling me about this. Also maybe if things don't get better with this diuretic, I could ask the ENT about anesthesia during the injection if I need another one. I won't ever do it awake again, I know that's for sure!

That is so cool that they fixed your ears by removing your adenoids!!! I've asked about things they could do for me for my deaf ear and there isn't anything, not even an implant or hearing aids. It's just gone. I really love hearing stories like this where they fix people's hearing or eye sight! So awesome!!

BostonBaby1 · May 2015

I wish I had more stories like that! My husband works with eyes and unfortunately they are the end of the line for people usually. His doctor has patients that come from all over the world but their specialty is autoimmune an auto inflammatory diseases of the eye so usually all they can do is slow it down.

I was extraordinarily lucky! My mother was reading an article in the New York Times one day about this doctor in Boston that took out adenoids to cure recurrent ear infections. She literally had to hunt him down and stalk him in order to get him to remove my adenoids. I was very lucky that she was so diligent… Also, thanks to her, I went to speech therapy multiple times a week at Mass Eye & Ear Infirmary so my speech is great and because I used to read lips I had no idea that I had a problem.

BostonBaby1 · May 2015

If you decide you want me to call my ENT and see if they know anybody in your area, just let me know at any time and I will do it!

Marchmellow2 · May 2015

BostonBaby1 said:
If you decide you want me to call my ENT and see if they know anybody in your area, just let me know at any time and I will do it!

Ok I'll let you know! Is this the same ENT that removed your adenoids??? I'm in Austin, TX btw. If it's easy for you to just call up your ENT then you can you want! Thanks!!!

Marchmellow2 · May 2015

sbost0118 said:
Two of my kids had hearing loss due to fluid in their ears that ear tubes finally corrected. They never had ear infections which was why the first one was 3yo and speech delayed before we realized there was a problem. The little one we had tested every few months until we put tubes in. Apparently crappy ear physiology runs in my husbands family.

Would a hearing aid help in your situation? Just for the time being while you have to be off your meds. Also, ENTs are like flies in my area, can you go to a different one? Your guy sounds like a jerk.

I do have hearing aids yes. But they only amplify my left ear and bring sound from my right side over to my left...which causes me so much confusion. I hear things I've never heard before and I can't tell which direction sounds are coming from. And since the right hearing aid is a microphone it gives me lots of high pitch feedback in my left ear. It just seems like way to much fuss!! You know what...I'm going to go see if I can find them in my house somewhere. Maybe I can sleep with just the left one since it just amplifies sound, in case my DS wakes up at night.

Thank you all for the support! :x

PS. I'm so sorry your babies had to go through that!! It's really sad cause you just feel so helpless! I'm glad to hear they're doing much better now!

BostonBaby1 · May 2015

So I tried to call my ENT (the one who took out my adenoids 30 years ago is retired but my doctor was a fellow with him at the time,) unfortunately they are closed for the day.

I called my SIL and she has an ENT in Round Rock who also (she thinks) has an Austin office. His name is Dr. Zaplac.

Marchmellow2 · May 2015

@BostonBaby1 . I can totally relate to that! I never had speech issues but I've always read lips. If I can't see someone's lips while they talk to me I almost always can't understand what they're saying. I've never learned sign language either! I think I better start taking ASL classes soon. My parents didn't even know I was completely deaf until I was like 4 years old! I think it's because I could hear tones and read lips. When they tell me that, I just look at them like WTF is wrong with you people?! Did you ever try talking to me? Lol wtf how could you not know I was completely deaf!!"

Marchmellow2 · May 2015

BostonBaby1 said:
So I tried to call my ENT (the one who took out my adenoids 30 years ago is retired but my doctor was a fellow with him at the time,) unfortunately they are closed for the day.

I called my SIL and she has an ENT in Round Rock who also (she thinks) has an Austin office. His name is Dr. Zaplac.

Oh cool!! I'm way closer to Round Rock than Austin so I would like to know about your SIL's ENT! Thank you mama!!!

Eta: just noticed you gave me his name. Dr Zaplac. Calling him now to set up an appointment!! Thanks again!

Marchmellow2 · May 2015

Jazmine928 said:
I am sooo sorry to hear about what you are experiencing. My mom suffered tremendously from that disease until she had a labrynthectomy three years ago. She is still recovering from the surgery but it has completely eliminated the vertigo which was paralyzing her life. I know how isolating the disease can be as my mom knew no one who had experienced her pain. Message me if you would like me to put you in touch with her for support.

I'm totally going to ask my ENT about this surgery! Did that cure only her vertigo or did it cure the fluid too?? Thank you!

Jazmine928 · May 2015

It is major major surgery and is a last resort for meniers. They go in and take out your inner ear in your bad ear. When you wake from surgery you are sooo off balance until your other ear takes over. My mom was at the point where she was having drop attacks almost every day and could basically no longer leave the house. It's a last resort because you lose your hearing permanently in that ear. My mom had already lost her hearing so that wasn't a concern of hers. She said Stephen Rauch at mass eye and ear is the best in the field. I know you are in Austin but I would say this: don't mess around with any doctor but someone who is a specialist at this disease. My mom had other surgeries from less well known docs and they think it actually caused more harm. Also, you could look into gentamicin injections which paralyze the nerve in the ear and is less invasive. My moms disease was at the very end of its course when she had all of this done so there might be a lot of easier options for you. Best of luck to you! Xo

BostonBaby1 · May 2015

Jazmine928 said:
It is major major surgery and is a last resort for meniers. They go in and take out your inner ear in your bad ear. When you wake from surgery you are sooo off balance until your other ear takes over. My mom was at the point where she was having drop attacks almost every day and could basically no longer leave the house. It's a last resort because you lose your hearing permanently in that ear. My mom had already lost her hearing so that wasn't a concern of hers. She said Stephen Rauch at mass eye and ear is the best in the field. I know you are in Austin but I would say this: don't mess around with any doctor but someone who is a specialist at this disease. My mom had other surgeries from less well known docs and they think it actually caused more harm. Also, you could look into gentamicin injections which paralyze the nerve in the ear and is less invasive. My moms disease was at the very end of its course when she had all of this done so there might be a lot of easier options for you. Best of luck to you! Xo

This sounds like solid advice! We were just logging on (DH and I) and we're going to send you a private message. My husband's doctors do surgery at Mass Eye and Ear (MEEI) and he was going to ask them tomorrow if they knew of any specialists that could deal with it during pregnancy. It seems like you have your specialist right here, and if it's possible to come up to Boston, I would say definitely do so and we will be happy to help you throughout. DH wanted to know how you got diagnosed? Apparently the diagnostic procedure is very complicated and he says that there are a few other conditions that can mimic it.

Marchmellow2 · May 2015

I was getting vertigo and deafness in my ear. He just did some dizzy tests on me and since I didn't get dizzy he said its fluid in my inner ear and not crystals. Which is Miniere's Disease. He said since I'm pregnant I will retain more fluid, which will most likely give me more attacks. When I was in the middle of episode a couple weeks ago I went in and the audiologist did some nerve testing and she saw that the I had way more nerve hearing loss. So because the fluid was affecting the nerve he said I needed to release the fluid before I get permanent nerve damage. So he gave me a choice, either diuretics over a weeks time or an injection. My OB said no way to the diuretic so I ended up taking the awful steroid injection in my ear drum. @BostonBaby1 what other conditions mimic it?

I guess I'm not a good candidate for the surgery @Jazmine928 mom had since I'm already deaf in one ear. I can't afford to lose hearing in my only ear. Thank you for the great advice! I'll definitely be more careful with the doctors now! I'll see if I can find a specialist with this disease and see if they can make sure I even have it.

Jazmine928 · May 2015

Jennifer Smullen in Georgia was my moms doc at Mass eye and ear. She just moved a few years ago..Atlanta is closer than Boston! Are you deaf in the ear with the disease?

BostonBaby1 · May 2015

So, DH is going to look it up but off the top of his head he says that you would need a CT and MRI to confirm the diagnosis. There are also a couple of other tests… He's gonna look it up and when he finds it I will post.

Marchmellow2 · May 2015

Jazmine928 said:
Jennifer Smullen in Georgia was my moms doc at Mass eye and ear. She just moved a few years ago..Atlanta is closer than Boston! Are you deaf in the ear with the disease?

No. I was already 100% deaf in my ear from meningitis at 10 months old. The doctor said there is no way of knowing if the disease is affecting my deaf ear because it's deaf. But it's definitely affecting my good ear, making it deafer.

BostonBaby1 · May 2015

Okay, so… DH (through Dr. Google but they are all saying the same thing so he's going off of Mayo Clinic). DISCLAIMER---HE IS NOT A DOCTOR...

Test and Diagnosis: requires 2 spontaneous episodes of vertigo lasting 20 minutes or longer, hearing loss verified by hearing test on at least one occasion (obv you've done,) tinnitus or aural fullness, exclusion of other know causes of these sensory problems. ---Hearing assessment, balance assessment (VNG-Videonystagmography; rotary chair testing; VEMP vestibular evoked myogenic potentials testing; posturography; other tests may be used to rule out other problems similar to those of meniere's)

Other things that can mimic meniere's:
-MS (multiple sclerosis)
-tumors of the brain
MRI/CT would rule these out. You cannot or should not do CT pregnant but MRI is more detailed anyhow and safe-ish.

Other possibilities:
-vestibular schwannoma
-superior canal dehiscence
-benign paroxysmal positional vertigo (bppv)
-cervical spondylosis

Things that can help:
-A low sodium diet
-Diuretics (which you cannot take but might want to recheck with a high-risk OB because DH says sometimes-he knows nothing about pregnancy or ears- the benefits to taking medications while pregnant may outweigh the risks I.e. Losing all of your hearing.
-Caffeine is a diuretic and you can safely have 200mg/day
-Acyclovir (anti-viral which is a category

Meniere's is fluctuating and episodic and from what DH can find, all of the surgeries are for the vertigo aspect, not the liquid or fluid. That doesn't mean that they don't exist... Just that DH isn't seeing them. Ear tubes may or may not be a temporary solution but the first step is making sure you have the proper diagnosis.

SOOOO... All things considered, I really think I should call my ENT up here and explain your situation in detail to them... Hopefully they can recommend someone near you that can help preserve your remaining hearing. At least we can find out if there is a way to numb up your ear before having the fluid drained (which I know was awful for you.) just send me a message tomorrow to remind me. Dr. Zaplac might be a better fit for you anyway because it doesn't sound like you love yours... Also, DH thinks that if nothing else, we need to try to keep it from progressing if possible, especially since this is your only good ear.

Marchmellow2 · May 2015

Wow!! @BostonBaby1 you're truly amazing... And so is your DH! I did read Mayo Clinic site as well and saw the MS and Brain tumor thing but I just don't think it's that severe but you're right I should still check to make sure I have the correct diagnosis. My ENT did try to numb it before doing it but I don't get dumb. I told him that and he said don't worry you will. Novocaine, epidural, lidocaine, etc, don't do anything for me. I honestly don't think I get numb!! I think I will have to have anesthesia to have another injection.

Anyway I have a good update: So far the diuretic has improved my hearing. I can hear!!! Not great but it's improving which is great! I also messaged my OB today and she told me the diuretic is fine now that I am 10 weeks along. So I won't have to do an injection!! I'm super happy about all this.

Thank you so much for your support!!! ***attacking you with creepy internet hugs and kisses*** xoxox

BostonBaby1 · May 2015

I love creepy Internet hugs and kisses!

This is fantastic news about your hearing and the diuretic! That is what we were hoping your OB would say considering the circumstances. Also, it's very weird but I don't take epidurals either… I've had four for major abdominal surgeries (I cannot take narcotics) and only one of them worked on half of my body. What did you do to get through labor before? Did you take narcotics? I'm pretty nervous about how I'm going to deliver (Au natural scares me)… Not really going to worry about it until we are into the second trimester but then I will be meeting with anesthesia because they don't know what we'll do.

I'm still going to call my ENT tomorrow and see if there is anybody that they would recommend that you see. I don't know how you feel about traveling for medical care, but I know that I have done it. When it comes down to things like losing your hearing or being able to eat (which is what I went through) I go where I have to go to get that diagnosis and then try to find somebody who can help me where I live. I flew to Chicago last year for a G.I. doctor. Anyhow, hopefully the doctor will recommend somebody near you in Texas. Good night love! So happy!

Marchmellow2 · May 2015

@BostonBaby1 well when I was in labor which was 6 weeks early, They gave me an epidural right away. So for 24 hours I was pumping that epidural and I never got numb. When they decided to give me an emergency c section since I wasn't dilating, they tried to give me an epidural in several different locations on my back. None of them worked. They had to give me general anesthesia. Which made it so I couldn't see my baby for like 2 days since he had to go to the NICU. This time I'm going ask for a spinal. I'm not sure what the difference is but I heard it works better than an epidural... its worth a try. So if I were you I'd try the epudural if you deliver vaginally and just endure some of the pain. But toward the end of your pregnancy, tell your OB that if they end up giving you a csection that you'd rather them try a spinal instead of an epidural.

Good night!! Thanks again! Xoxoxo

BostonBaby1 · May 2015

Thanks for the info sweetheart! We have to first make sure it is safe for me to try a vaginal (because I have had my intestines resected 4 time...) if it is then I'll have to see how big the baby is... I'll be meeting with anesthesia in 2nd trimester because it will either be natural (no meds, even narcotics -not my first choice- I'm sure they'll try an epidural but it won't work,) or a c-section either with a spinal (which I've never tried) or general. My OB (Who is delivering me) what's me to try naturally. By MFM (high risk) wants to do general.

Good night sweetheart!

BostonBaby1 · May 2015

Just to let you know, I called my ENT first thing this morning. I am waiting for him to call back personally so it will probably be towards the end of the day when his patients are gone. Hopefully.

BostonBaby1 · May 2015

Okay... So I spoke with my ENT and although he does work with Ménière's he said it is very difficult to treat a patient long-distance because you need to have constant monitoring. He does not know of anybody in particular in your area, at least not well enough to recommend them. However, he said that you should go to any one of the universities or major teaching hospitals. He also suggested that you Google NEUROTOLOGIST to see who you find.

You also said that your tubes would not help because your fluid is in your inner ear. If the fluid was in the middle of your ear then it would help. If it were me, I will call Dr. Zaplac and see if either he can help you or if he can recommend somebody that would be perfect.

Keep me updated sweetie! How are you feeling today?

yankeebabeme · May 2015

Neilmed sinus rinse certainly wouldn't hurt

Want a personalized experience?

Anybody else dealing with Miniere's disease?

Re: Anybody else dealing with Miniere's disease?

Choose Another Board

Search Boards