Do you think I have Meniere's disease?

Hello DJ,

Sorry for the radio silence. I have been dealing with a lot of travelling in early March and the COVID-19 crisis management at my institution since.

My appointment with my ENT went okay. My hearing was much improved that day. I had been having periods of significantly reduced pressure and tinnitus. Then they would return. My ENT referred me to a Neuro Otologist (NO) within her practice. Until earlier in the week, I had been having some periods of relief - 3-4 days when I was significantly better (no pressure, mild tinnitus and improved hearing). The 3-4 days will be followed by 3-4 bad days.

I met with the NO yesterday. Just like you, I have no vertigo, just the pressure, fullness and tinnitus. She said what I had was Cochlear Hydrops, Menieres' without vertigo. She also diagnosed me with TMJ disfunction and asked to use a mouth guard at night. She also found that my hearing hasd worsened yesterday (bad day yesterday). She has asked me to add an anti-histamine and Flonase.

She offered an injection to the inner ear. Given that I have been dealing with this since October, I agreed to it. I got the shot and had a terrible day yesterday - serious fullness/pressure and nearly zero hearing in the right ear. I woke up this morning with near zero hearing in the right ear.

Does anyone know how long the injection take to work?

Interestingly she mentioned a medicine called Betahistine. This is not approved by the FDA but apparently used heavily in Canada and Europe for MD. Has anyone here used Betahistine (also called SERC)?

How have you been DJ? Any progress? Have you tried the injection yet? Please keep posting. I will also do better.

Take care everyone.

 

Hello Boston,

I’ve had two injections 10 days apart within the first couple of weeks of experiencing my problem (Sept 2019). The first day or two after the injection was not good for me either, but then it got better. However, the improvements were minor, and I haven’t really noticed any difference over the long run. But I understand it has helped some people.

My ENT (also a NO) also recently recommend Flonase and Claritin. I find that it’s helping. However, be careful of your position when you sleep, particularly if you take Flonase at night. I sleep on my back and the Flonase caused sinus fluid to go into my e-tube. I now sleep sitting up the best I can, and I take the Flonase in the morning. I also take Kali Bichromicum. It’s a homeopathic decongestant. It also helps.

I also tried Betahistine for a couple of days. It made my tinnitus worse, so I stopped. But I wonder if I didn’t give it enough time. But then, I don’t seem to have much pressure or fullness anymore, only now and then. I’m not sure if this is due to the anti fungal meds that I took or the pressure just got better on its own. I still have tinnitus and it varies from day to day. I haven’t had my hearing tested in awhile. It also seems to vary depending on how congested I am.

I’m also scheduled to see my orthodontist because my bit is off due to some recent dental work and also because I had braces years ago and my teeth have moved significantly over time. Unfortunately, my appointment has been delayed due to CV-19.

I hope you continue to see improvement.

DJ

 

Hi DJ,

Good to know that you are better with your pressure/fullness. I was okay for about 4-5 days and since last Tuesday (one week), its back with a vengeance. I also let my diet slip a bit. This is a good lesson that I cannot scale back from how careful I have to be. It is five days since the shot and I have had no relief in fullness or tinnitus. I am seeing my NO in 10 days again. I am taking my Flonase and Loratadine in the morning. I wonder if anyone has opinions about taking it at night.

It is interesting that you bring up dental issues. I recently was diagnosed with TMJ dysfunction. I need to see an orthodontist once this CV mess is over. In the meanwhile I got a mouthguard from Amazon and plan to try it for a while to see if it helps. Clearly there is a connection.

Take care and keep posting.

Boston

 

Boston P,

Check your private messages.

Jim

 

Hi Everyone,

It's been 10 days since I got my shot in the ear. Before the short, I had fluctuations of feeling good and flare-up each lasting about 3-4 days. Which is why my NO suggested the shot saying that I might get long-term relief. The first three days was really bad with significant fullness and ear pressure and nearly zero hearing on the right ear. Since then, the hearing continues to be poor, the pressure is constant and the tinnitus is loud. What is really bothering me is the lack of fluctuation, it is constant with all the symptoms. I have never had issues with virtigo (Hydrops more than MD).

Anyone else experience this? Any idea when/if it will get better?

Thanks,

Boston

 

Hi Boston,

I’m sorry to hear that you are suffering. I would have your NO take a look. Sometimes the injection can injure the eardrum. I don’t think it’s normal that you should feel this way 10 days after the injection.

DJ

 

Hi Boston,

How are you? Last time you posted your steroid injection was not going very well. I hope things are better. Things are pretty much the same with me. Tinnitus still varies. Ears have been okay, but e tubes still have lots of popping and cracking, sometimes they get blocked. I’m still taking Claritin and Flonase. I’m also about two weeks into B5/B6, but haven’t seen much change.

DJ

 

Hi DJ,

Good to hear from you. Things have been very hectic at work and I haven't been coming here as often as I would like.

I am afraid my situation is getting worse. Over the past month I've had two shots in my ear and neither helped. In fact I felt worse with the ear pressure and loud tinnitus, each lasting two straight weeks after the shots. I had some relief in the pressure over the past three days but I have had two episodes of full-fledged vertigo attacks lasting over an hour with nausea. I am getting pretty depressed with the worsening condition.

I have another appointment coming up in two weeks. We will see how that goes.

Boston

 

Hi Boston,

Sorry to hear things have gotten worse. In one of your prior posts you mentioned Betahistine. Did you ever try it? I’m on day 20 of B5/B6 and haven’t noticed any difference. Things have gotten worse for me as well. My allergies have kicked in over the last two weeks. My sinuses and ears feel blocked up. T is louder, H is muffled. Nothing seems to help. I hope you feel better.

DJ

 

Hi DJ,

I was going to wait to see my NO before I posted again. I saw him on Wednesday. Oddly enough, after my two episodes with vertigo, I actually had a week of big relief - low T, significantly better hearing, a little woozy but significantly feeling better. Then I got bad again before I saw the NO.

Given the vertigo episodes, the Dr. confirmed that I was meeting all the criteria for MD and wanted to move to that protocol than the cochlear hydrops. He's put me on Diamox instead of Hydrochlorothiazide. I have have been taking for two days with sort of weird side-effects. I will let you know after a week how it is going.

I have not tried Betahistine yet. I have read that it has had mixed reviews. It seems to be very common in the treatment of MD in Europe and Canada. I found a couple of good readings, listed below -

- Meniere's Disease
- Approach to Ménière disease management

How are you feeling? I have done a lot of reading and come to the conclusion there is no solid study (too much variability between patients - presentations are inconsistent) and there is no clear study on the efficacy of any drug treatment - including diuretics. On a positive note, the vast majority of those reporting symptoms experience long periods of remission. Which is what we have to look forward to. This is just a bad time for you and I to go through this. We just have to remember there is light at the end of the tunnel and take it one day at a time.

I will do better about posting regularly.

Take care.

 

Hi Boston,

My NO would agree with you. He’s been telling me for some time that there’s no solid data showing that any treatments, supplements, diets, etc. work for MD, even low sodium and diuretics are suspect. But I guess we’ll keep trying anyway.

The last couple of weeks have been tough for me. My allergies have caused my ear to block up again and nothing seems to help. On the bright side it looks like I’ve identified my trigger. Maybe some type of allergy shots or sublingual therapy could help me. I plan to get tested once things get back to normal.

Sorry to hear you experienced vertigo. Do you think it was a reaction from the injections? Now that you’re feeling better it sounds like the injections are starting to work for you. Do you think you’ll get another one?

In any event, I’m happy that you’ve experienced some relief. Hope you continue to feel better. Here’s to remission!

DJ

 

What antivirals did you take? I am at 11 months and my worthless doctor wouldn't even consider them. Am going to see another neurotologist at the Michigan Ear Institute and hope maybe these help. I'm 33 years old and this has already cost me my job and I'm quickly losing my mind. No one should have to endure this torture. My tinnitus like yours is constant and loud all the time.