Probable early Secondary Endolymphatic Hydrops. Or may be Minear's Disease

Ears, nose and throat
1

It started 2years back in 2016with plugged ears in flight. It was very painful and took many days to get them unclogged. Now I have near constant ear fullness. Very mild tinnitus. No vertigo ever. Mild hearing loss but at high frequency. Felt pressure in head and temples. Low nausea almost everyday. MRI is normal. ECHOG report says abnormal report. DPOAE absent bilateral. At times I felt mild vibrations in head. Tympanogram report is normal and suggest no middle ear issue. Doctor has suggested probable early Secondary Endolymphatic Hydrops. I doubt I may have PLF or Dehiscence. Can Minears be there without vertigo?

2

Gosh, really don't know. The mineres disease started with severe vertigo on me. Progressively increased and the TINNITUS is there always with no relief. Now I have low vertigo every day and as stated TINNITUS is horrible. Sorry you feel so bad. I'm new to this site so maybe some others can answer this?

3

A Meniere’s diagnosis consists of low range hearing loss, vertigo and tinnitus usually with ear fullness which feels like pressure in the ear. It doesn’t sound like you have Meniere’s but you need to see a neurotologist for a diagnosis. There are so many vestibular disorders and not knowing what’s wrong is worrying. A diagnosis will probably lead to some form of treatment. I wish you luck. 

4

Thanks a lot Christine. It helps. Knowing what a bad evil MD could. I pray day in and out not to have MD. I feel it could be PLF or dehiscence. Not sure. Met few neurotologist, neurologist, ent specialist. Noone managed to fully diagnose the issue. More of a wait and watch. May be no vertigo so far is not letting them decide. I'll soon be meeting very senior neurotologist, hope some help. This mild nausea and ear fullness is so irritating.

5

Do you remember any symptoms before you had your first vertigo incidence. May be that can help me correlate. Regards Anadi

6

Hi, no I don't remember. I woke up one morning and the vertigo was there, could not move. After the first episode, the spins kind of subsided, but then eventually the fullness in my left ear. Everything Progressively worsened from there. Vertigo, tinnitus etc.

7

Thanks a lot Cathy. How many months it took for your disease to fully grow. Hope you are managing well. I need all support to even think of surviving through if it is MD. How long it takes for hearing to go completely. Thx thx again and again for helping me

8

You are so welcome I just understand how this disease is so debilitating and I wish someone would come up with the Cure or at least calm down the awful aspects of it. I have had this for over 20 years it started over 20 years ago like I said with the Vertigo Vertigo got so bad that I had to stop working for a while went to a ENT specialist that deals with Meniere's he gave me Gentamicin shots in my left ear but the sound he said there's nothing absolutely nothing that they can do about it suggested I get the hearing aids with the white noise in the worst ear because now it started in my right ear I don't know what the answer is but there's got to be one I'm ready to travel wherever to find the right doctor to take care of it I just can't stand it anymore. I wish you well and please if you find out any more information let us all know

9

Sounds just like me! PLEASE get checked for TMJD. People have been cured of their hydrops and Meniere's by exploring TMJD as their route. I have it and I was diagnosed with Meniere's.

10

Thx Christina. I'm due for HRCT and MRI contrast. They should help find if any other underlying issue. Apart from all the literature on MD I found a paper on MD talking about possible root cause of endolymphtic Hydrops. Long one though. https://www.researchgate.net/publication/320557268_Middle_ear_muscle_dysfunction_as_the_cause_of_Meniere's_disease.

11

Thx a lot. Will be getting a check up done soon

12

Good!! Make sure to find a GOOD specialist in your area. What part of the world are you in? I may be able to point you in the right direction. Don't listen to people who say this is it until you die, there's defo hope.

13

Hi Christina, need that hope..i asked the so called specialist here in Idaho about the betahistine. He said he has never heard of it. Actually told me to go see my primary doctor and ask for a good antidepressant so I would not care about the meniere's and horrible tinnitus!! I'm at

T the end?

14

Oh dear!!!!! Betahistine has been a lifesaver for me, despite the fact that my root problem is TMJD. I no longer have attacks thanks to it. I was diagnosed with Meniere's disease last year and am constantly dizzy. They seem to care more about my mental health than my physical health at the moment which is such a joke!

Please see if you can find a TMJ specialist, there is a Facebook group called "Meniere's Vertigo Tinnitus TMJ : Meniere's no more chat and support group", if you log on and read people's testimonies it is amazing to see.

15

I realise that betahistine is not accepted as preferred treatment in USA but it is available through compounding pharmacy apparently. I think you would need a prescription. In U.K. a gp can only prescribe up to 16mg x 3 per day but a consultant neurotologist can prescribe higher doses which is usually necessary to bring Meniere’s under control. I may start to reduce mine in the new year. I think you will have to do your own research to find a way of obtaining betahistine. There are many people on this site in USA who know how so maybe one of them will respond to your post. Don’t give up. It really is effective and helps preserve hearing.  Good luck. 

16

Thank one out there that lives near idaho..advise please

17

Hi cathy, 

I can't find any in Idaho...would you be able to travel to New Jersey or Memphis? The best two specialists live there

18

I live in the US. Betahistine can be obtained through Canada Pharmacy with a prescription. 

19

Hi Anadi, your symptoms sound remarkably similar to mine.  I have constant ear fullness on one side, very mild tinnitus and a very small amount of hearing loss at high frequency.  Tymponogram is normal as well.  I have been diagnosed with potential cochlea hydrops (I think the same thing as SEL).  What treatment are you taking? 

20

Hi Daniel

I'm not taking anything as of now. Taking homeopathy. My 2nd Ent do not agree fully for CEH /SEH. He asked me if I want he can give me diuretics, but not needed. I have even not cut on salt too much. My ECOG report says Endolymphatic Hydrops only, but due to hearing loss it could be false positive also. My symptoms have not improved. Little bit nausea also started. Homeopathy seems to be helping a bit.