new sufferer ....sort of

You've seen an ENT who has confirmed there is no vestibular tumor, and
he's started you on a diuretic and Serc.

Sounds like you next step is to see a Neurotologist. I've found that most ENT's
are just not equipped/trained on how to deal with Meniere's. Basically, it's
out of their league.

The symptoms you describe are what I would consider as "possibly" early
Meniere's. It's much the same as I had prior to my first big vertigo attack in
August 2005.

With Meniere's, the tinnitus ROARS on bad days, and is loud, but livable
the rest of the time.

Do what you can, but do not fear that which is beyond your control.

 

sixtus, we are in a similar place in our diagnosis. I was diagnosed with CH without even having the hearing test. I was skeptical but after learning so much here, I do think the ENT is correct. He prescribed a diuretic and low salt diet, plenty of sleep, lots of water (basically a gallon a day). I haven't taken the diuretic. Have seen improvements with the diet and water. My symptoms are left ear fullness, dizziness, second long actual vertigo "attacks" over the course of the last few years. I don't think I have more tinnitus than anyone my age but could be wrong. It's definitely not what other describe. I get a hearing test in the next few weeks. I thought I had eustachian tube dysfunction as I was diagnosed with that in 2006. I still think I have that too. My understanding is that CH does not always turn into Meniere's but it can. Regarding the drainage, YES! I have drainage on my bad ear side very often like 70% of the time. I have the drainage even if my ear isn't full but I always have the drainage if my ear is full. If that makes sense. My ENT actually noticed bumps in the back of my throat (don't recall the name) that he said result from constant drainage. In my situation, I 100% believe it's connected to the CH/MD. I take Allegra every morning and am on year 3 of allergy shots so it seems the drainage shouldn't be from allergies. Who knows. I've had the CT scan but not an MRI yet. The CT scan showed enlarged turbinates on my bad ear side. When I get headaches, once or twice a month, those headaches are above my eye on the bad ear side. It's as if that upper sinus isn't getting the same air flow as the other side. UGH. This is rambling but the point is we know what's going on with our bodies better than anyone else. My plan is to follow through with the hearing test and based on that go to Atlanta to see someone more specialized. There isn't a specialist on CH/MD in my immediate area. Good luck!

 

Also when I get headaches, my bad ear is always full as is the nostril on that side. Definitely it's all connected.

 

Sixtus, my Meniere's started in a similar way with fluctuating hearing loss as a first clue. I agree with Mike B's advice above -- regular ENTs aren't equipped to deal with Meniere's, and a neurotologist is a good next step.

My neurotologist had me contact her after significant episodes and come in for a hearing test. Twice when there was a significant decline found she gave me steroids -- once orally and once by intratympanic injection. She thought immediate treatment might help mitigate the damage, but if it did, it wasn't very noticeable for me. She said it helps some people, not all, and is worth a try.

Living in constant fear is one of the biggest quality-of-life changers with Meniere's. There are anxiety management techniques that can help one stay in the present moment and enjoy life between episodes. Both a psychologist and readings can be helpful.

 

Sixtus. I'm sorry for your troubles. I don't know the answer.

The following site is a perennial reference for people like us:

Dizziness-and-balance.com: Disorder index

 

Yes, my hearing fluctuated in this way. It was like a zigzag line of decline to losing all useable hearing. I have a stack of audiograms across the years showing the loss. Major vertigo episodes usually were accompanied with a hearing loss and fluctuation, but the fluctuations didn't always come with vertigo episodes.

 

Sixtus
Would you be ok telling us where you live? You might get some good recommendations on doctors in your area.

 

Hello fellow Aussie, I would get started on the pycnogenol (to improve blood flow to the inner ear) and be strict about your 8 glasses of water per day with some natural diuretics (dandelion tea). The B5 and B6 vitamins can't hurt in correct doses. Allergy testing sounds like a must-do with your post nasal drip. I have done the steroids, anti virals and anti fungals and like you I hate meds, my program now is all supplements and I am very pleased with results. I am not sure how to direct message here but if you want doses and the diet I follow please ask. I agree about the forums, but do find this one is less depressing and more helpful than most!

 

Sixtus
Do you take anything for your vertigo attacks? Sorry if you told us that already and I missed it If you have something that helps, maybe you could take that before you get on the airplane?

Will someone travel with you? Maybe plan to fly in a few days before the balance tests. They usually want you off the anti-vertigo drugs for 24-48 hours prior, if possible.

Take a cane - then they let you pre-board, so you don’t have to stand in line for long.

It sounds like it would be worth it for you to see the top specialist. I too was terrified of repeating the balance tests but my last VNG (water in ears, goggles) was not too bad. Yes it creates a bit of vertigo, but it stops within 20-30 seconds. Also, this time, it was so mild compared to my vertigo attacks. Now I’m not scared of VNG anymore. The VNG will help confirm what’s going on, which ears are impacted, etc. and what treatment will be best for you.

If you’ve tried all the usual meds (diuretics, serc) and the vertigo attacks are impacting you badly, I’m assuming they’d offer some procedure. If your hearing is still good, and it’s just one side, maybe they’d offer low dose gentamicin, one of the sac surgeries (out patient procedure), or vestibular nerve section (VNS - more serious surgery but hearing unaffected .) If your hearing is bad, they might offer labyrinthectomy (less serious surgery but you lose the hearing in that ear.)

I wish I’d followed up with my specialist years ago. We are between a rock and a hard place with these choices. All I can add is: Have drugs, will travel!!

 

Oh I’m so sorry for not getting your story right! My bad. I have troubles reading the computer screen- typing is easier than reading. I saw all those prescriptions you’d been given and misinterpreted that you’d tried.

Anyway, I hope you get in with a good doc who listens (better than I read LOL)

 

Hi there, I have struggling to get a diagnosis for a couple of years! My ENT says either hydrops or tensor tympani syndrome. I have episodes of low frequency tinnitus, fullness, pressure, vibrating head feeling, sometimes slight dizziness, low frequency hearing loss. Never vertigo. My hearing returns to normal when the episode stops or is minimal. It’s constantly fluctuating, with more days on than off. It was so bad I took myself to emergency. mRI is clean. There has been some abnormal results in my vestibular testing. Serc didn’t work. Diuretic didn’t work. Nothing seems to trigger or help it. Oddly enough if I plug the opposite ear, the noise and feeling seems less ‍♀️.
I had a Audiogram during an episode and it actually showed a conductive loss at the 250 frequency.
Did anyone start out like this/is this?
I need help. I’ve been off work because I can’t even focus or feel normal. Thank you

 

I had the same thing only continuous. Antivirals and allergy shots fixed it. The good news is you may restore the low frequency hearing, higher frequencies are less likely to come back. Find a doctor who will let you try antivirals, ie Acyclovir, valtrex or famvir for a month or so. It takes a while. Folks here will give you the dosage. Take heart, there is hope. In me these treatments reversed everything except the high frequency loss which was not that great and kept it from progressing to classic menieres with vertigo. Antivirals also stopped the jet engine low frequency tinnitus and distortion and autophony.

 

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Sixtus,
I loved your rant by the way. Your feelings are the same as mine.
I haven't been to an ear Dr. of any sort in 16+ years. But once that first vertigo attack came, well...
I have an appt. tomorrrow.

Jim