Anyone got endolymphatic hydrops but not Ménière’s?

[ArtyPants46]

Just curious to hear what symptoms and treatment are like? I’ve been diagnosed with chronic vestibular migraine but consultant now thinking it could be EH due to my symptoms- persistent vertigo/dizziness, constant T but fluctuating in pitch, pressure feeling in head, fullness, popping and what I call sudden vertigo zaps when the T goes up really loud. I have some high frequency hearing loss in T ear.

Is there anything that helps? The no caffeine, alcohol, salt, sugar (ie all the fun things in life!)?

[Happyrosie]

I’d never heard of this so looked it up. According to a New York medical website, it’s the same as menieres! But, I’ve noticed over the years that American and UK definitions can be different.

[Cavalier1]

I have this condition which is a variant of menieres. I take Betahistine 16MG 3 times a day, and Cinnazarine for attacks. Also have a T Tube in ear and having steroids via ear drum currently, alongside low salt diet etc.Look at the menieres.org.uk website and there's some good FB pages to join which can be helpful. Treatment of hydrops very similar.

Get a referral to a god ENT consultant for a plan and firm diagnosis...lots on menieres website who specialise in Menieres. I ended up going private and ut was worth every penny! Good Luck!

[PABLR in reply to Cavalier1]

To me they are the same. I have been diagnosed with both. My symptoms are the same as yours except I have quite severe hearing loss, particularly on the left, and rarely have fullness in the ear. I have migraines although they have never been diagnosed as such except tentatively). I am very lucky in that I had vertigo for two years, but then it disappeared. Unfortunately I was in Egypt during those two years so nothing was prescribed for it. Here in the USA 16mg of Betahistine 3 times a day was prescribed, despite no longer having vertigo. I think the specialist just thinks Menieres = Betahistine. I weaned myself off it, but it might work well for you, and as you are in the UK it is readily available. I had to get mine via Canada or the UK as I live in the States. Cutting out all the things you mention can help some people. I cut them out at one point and then reintroduced them one at a time and found that for me the only thing which I avoid in large quantities (large being more than a half glass of wine now and then 😆) is alcohol. Salt, coffee no difference. I never tried to cut out sugar but there are times when I use very little of it for quite long stretches, just because. It is absolutely miserable at the worst times so if you cannot get sorted out quickly on the NHS I would go private if you can afford it. Some of the symptoms you should be able to alleviate. The tinnitus unfortunately you will have to learn to live with in all likelihood.

[ArtyPants46 in reply to PABLR]

Thanks for your thorough response. Can I ask how bad you hearing loss is and what was your vertigo like? I have mild hearing loss if my worst my ringy, poppy, pressured ear but the Tinnitus is LOUD! I can’t bear the thought of having to cut everything out - it’s just so depressing. Does the Bethahistine help with the vertigo? The ENTs I’ve seen so far have prescribed Notriptyline which has done absolutely nothing but make me feel a bit drowsy. I’ve just stopped taking it. I’ve have the tinnitus loudly for two years and not as worried about that as the horrible, disorientating dizziness.

[PABLR in reply to ArtyPants46]

My hearing loss is moderate in my right ear, moderate to severe in the left with a lot of distortion. The vertigo was one of the worst things I have ever had. I was teaching on the 4th floor and when an episode started I would have about 5 mins to get to ground level before I was incapable of going anywhere. I would get diarrhea, sometimes throw up, the room would literally spin around me so I couldn’t walk - I would crawl to the bathroom - and episodes could last up to 16 hours, usually about four to six and leave me exhausted. The betahistine is supposed to help with vertigo but I wasn’t taking it at that time. I was living in Egypt then and misdiagnosed. My Ménière’s diagnosis came after I had left and was living in the USA. Good luck with getting the help you need.

[Tiggywinkle23 in reply to Cavalier1]

I have just been diagnosed with meniere's disease and I take betahistine for the vertigo which thankfully has eased.off dor jow, however the aural fullness and pressure is terrible . What is a T tube and does it and the steroid help? I have a follow up in 3 months and my heating levels are affected greatly when the fullness flares up

[ArtyPants46 in reply to Tiggywinkle23]

Thanks. What’s your hearing loss like?

[Tiggywinkle23 in reply to ArtyPants46]

It fluctuates, worse when I have the fullness in my ear, but hasn't thus far returned to normal. It is like my hearing is muffled and as though I am underwater, if that makes any sense.

[Cavalier1 in reply to Tiggywinkle23]

Hi its a small tube shaped like aT which they insert into your eardrum to try to relieve the ear pressure and I found it helpful. I've had 2 steroids now which have also helped and am due more in about 4 weeks. Discuss with your consultant when you go next, as both are relatively small procedures. This site is brilliant for the tinnitus support and has been an enormous help to me, and the Meniees society is full of information too. Try the menieres groups on FB which are supportive