Meniere's Disease

2 years vertigo free!! Good job! You must be doing something right.

Apart from that my symptoms are very similar to yours, but my vertigo attacks have actually been coming more frequently of late. I was starting to get accustomed to the constant T but the vertigo really worries me, and i absolutely MUST start changing my lifestyle to try and alleviate it. I'll keep you updated on my progress with the supplement regime.

I was diagnosed in November 2014, but i was suffering the classic symptoms for around 4 years before diagnosis.

 

@MattL seems like you have got menieres pretty much same time than myself here.

Have you tried this http://www.dizziness-and-balance.com/treatment/ttg.html

It works for vertigos in many cases.

 

Hi @MattL,
Sory to hear your vertigo attacks are more close together.
Ask your doctor about adding proclorperazine to Betahistine as might help you with your attacks ......lots of love glynis

 

Thanks Michael.

Sounds interesting but i want to exhaust every other possibility before attempting any risky procedures. I do still have some good days in between the bad and there are several alternative methods i still need to try. There are so many Meniere's success stories on the internet, it's just a matter of finding the right one. My main concern with many of those stories however is that i know the symptoms can go into remission for several years before returning, so there really is absolutely no way of knowing if any of the methods truly work.

 

Thanks so much Glynis. I will definitely give it a try.

What is the dosage? Do you also take Serc? And what dosage of Serc?

Thank you

 

Hey guys! well i have had tinnitus in left ear since 7 months (almost 8)
got an audiogram and doctors told me it was likely that i had an endolymphatic problem. (i dont have vertigo, dizziness or ear pain, just tinnitus)
i would appreciate if anyone with some sorta experience can give me an insightful comment.
heres my audiogram...

 

Hi Mario. I have endolymphatic hydrops (per diagnosis). I don't have vertigo.

My tinnitus seemed pretty severe at the beginning. It is manageable now. I don't have the dizziness as I did earlier. I do take a diuretic daily which seems to help. I cut back on salt as well. My hearing is much worse in my left ear than the right ear.

 

Wow thank you so much for your reply Teri, it means a lot since there are many movement in this thread.
well im glad youa re doing better, did you audiogram was a little bit like mine?
i havent notice any change in my hearing, its almost 8 months i can honestly tell you
that my tinnitus isnt a a big problem anymore, it doesnt bother me, these past days have been very soft.
mmm i have had mild dizziness but i also been skipping meals and staying up late.

how long have you had tinnitus (without vertigo)
do you have any tips for me?

 

Is this the beginning of Meniere's disease for me?

Since mid august I have started to have a reduction in my very low frequency hearing (perceived as 125 hz and below), along with a roaring, water rushing type of tinnitus that comes and goes frequently. It all started during a plane watching trip but I was way too far away to have any damage done by the plane noise. A few days later it was exacerbated by MRI noise, and so I thought the whole thing was noise damage.

A couple weeks later (middle of September) it started happening without a noise factor. These low losses came in bursts and have definite triggers, typically happening after I have tensed up muscles in my neck and jaw, swallowed with a *bang* in my eustachian tubes or yawned and squeezed my muscles, or sneezed and laughed. I have also seen these events coincide with removing or wearing my foam earplugs in a little deeper than normal, but it is often transient (the earplugs also sometimes generate the roaring sound upon removal). Most recently (yesterday) an 'attack' was set off by getting really tense, having jerky movements, and breathing a bit fast from muscle contractions associated with a brief crying spell. The end of the attack resulted in nausea and the feeling of a broken speaker in the left ear, and feeling like my hearing was lopsided.

I have also, as of today, been getting some type of vestibular disturbance, but no obvious rotary vertigo. I have had a bit of ataxia, as well as a feeling like I am not 'held up' by my surroundings, and have felt the world to be made of jello, and is always moving below my feet. This is the worst it has been for over 4 months.
I used to have 24/7 rotary vertigo (mild and liveable) for a 2 month timeframe back in Fall 2015 from loud noise trauma or migraines, or a fungal infection on top of my right eardrum. For the first few months of this year, I then would get vertigo episodes lasting only minutes here and there, and I believed they were due to a migraine etiology or part of the chronic illness I have been battling. It came back as barely noticeable rotary vertigo and resembled the experience I had today around late March, and stayed that way every day until about May.
Now it has come back again, and has been with me all day. In retrospect, this 'vestibular disturbance' has probably been here for the whole month, but flared up because of the crying spell last night.

The only symptom I do not have t0 a high degree is ear fullness, but I have definitely had episodes of this in the recent past as early as May, with most of it happening in the left ear. If anything it feels my ear doesn't have enough pressure, like it collapsed.

It's as if my blood pressure (a spike leading to a tiny ischemic-like attack in my ear) or CSF pressure has something to do with these ear symptoms, as both of these variables can be affected by excessive muscle tension and transient physical or psychological stress. Both of these factors I know can also play a part in Meniere's disease.

My audiogram has finally shown some low losses in the right ear; it was at 5 db last July at 125 hz (so a 15 db drop in 2 ish months). The left was closer to 0, so one can just barely start to pick up on the differences there. The problem with my audiograms is that I perceive the loss to be in a lower range than the audiograms were designed for, so it may actually be far greater 100 db and below. The high frequencies have always behaved similarly, so no need to look there (sorry for the crappy quality).



So, what do people on this sub-forum think? Does this sound like early Meniere's disease, or something else?

Thanks so much!

 

My Menieres is full on at the moment and blasting ears, 24/7presure pain ,headaches knocking me sick.
Getting refured back to ENT to take over my care by Menieres specialist and audiology not sure how long I will have to wait.
In bed at 7 just need a quiet warm place to rest all week and hope picks up. ......stupid ears at it again so sometimes I go quiet on here a few days when it's to debilitating.....staying positive .....lots of love glynis

 

@Mario martz

Did you make an appointment with a Neurotologist yet? That is the only way you are going to know what is wrong with you. I can tell you from my countless trips to various drs that there are many more reasons for a reverse ski slope audiogram than just Meniere's. Some of them are just unknown.

@Coyotesheaven The vestibular symptoms you are describing do not sound like they are coming from your ear. They sound more like your CNS. Are you still getting the migraines? Do you have a good neurologist?

 

Hey @Jkph75 thanks for the message.
i made the appointment to my ENT to get another audiogram, and to be explained what studies he wanted me to get (MRI i supposed) after that appointment ill go see a neurotoligst.

i really hope its not menieres, its been almost 8 months and my tinnitus just got better wich is something that doesnt happens in menieres (it gets worse with time)
and also my two ears are the same (and usually menieres begins in one ear)

ill let you know how it goes! im pretty sure its just one of those weird vestibular problems that looks like menieres but its something weird, thank god ive been feeling great.
lets hope it reminds the same.

how have you been??

 

@Jkph75

Nope, no neurologist. I see a really good ent tomorrow and hopefully they will refer me for a hasty appointment. It's just been an ongoing ear migraine forever. I don't even think it is a migraine but something up with my CSF pressure, that is affecting my ear fluids via the cochlear aqueduct. That would lead to Meniere's for sure.

Interesting you say it's a central and not a peripheral vertigo. I do think I have sensory processing issues, so maybe that is it? I also did have central balance problems as a young child (up until 7), likely being caused by the autistic parts of my brain flaring up.
What leads you to say that it is central, though? I definitely have had peripheral vertigo spells that are most likely related to MAV. There was also a long time where my left and right ears heard grossly unequally, which caused vertigo too (this was back a year ago).

 

Glynis just wondering why you didnt proceed to get surgery to reduce or eliminate the dizziness or vertigo attacks?
some people have reported some success with those type of surgery or gentamicin injections

 

Just wanted to ask a question here. I have had T that sounds like what people with Meniere's describe theirs as being for 8 months now. It is definitely getting worse. I have not had a vertigo attack and have not lost any hearing. It seems like I must have Meniere's. How long could this go on for before I start to lose my hearing and/or have attacks?

 

Sorry i had to ask, whats does the Menieres T sounds like?

 

Well typically I have read that it sounds like the "roar"of the ocean. That isn't what mine sounds like. Mine is different every day. I have low ringing, a high whistle sound, a loud foghorn/light saber, a sizzling sound, and Morse code sounds. Any given day I could have any combination of these sounds. I have read of people with Meniere's describing their T like mine. Before you worry about it, no one has told me that I have Meniere's. And my hearing is fluctuating but it fluctuates throughout all the frequencies but is still all in the normal range. The Neurotologists I have seen said that they haven't seen this before and have no idea what is wrong with me. I don't think you have to worry about having whatever I have.

 

Hey Jkph75,
Dont worry, im more relaxed this days.
mine doesnt sound like ocean roar, is more like a tone or pitch.
right now for example is very high pitched, sometimes like a light saber, sometimes a hissing, sometimes like an old tv.
but to be honest, i have end up beliving that there is no such "menieres disease" (DONT GET ME WRONG) i think its just a bunch or cluster of symptoms that doctors dont know how to describe, treat or call..
and thats its..
i have read stories from people who only have tinnitus and then bang! hearin loss and vertigo.
some others that only have vertigo and then tinnitus.
others who had attacks weekly, others that only have an attack every 5 year.
last thing i read.. was a guy who had tinnitus and hearing loss in the low frecuencys and then after 14 years.. bam vertigo.

so its a weird thing, virus, problem idk...
i highly recommend giving antivirals a try it.

 

@Mario martz

I agree with you in that Meniere's is in itself a symptom cluster and not a diagnosis, in the vast majority of cases. There are so many vascular, cervical, viral, metabolic, etc. causes or contributors out there, however, that it is excruciatingly difficult to pin down which is causing the Meniere effects.

My T is also all over the place. It is generally in the range of 2-8 khz, but there are low frequency ones at around 700 hz (the longest running tone I've had since 2014), and ones below about 100 db. They fluctuate in intensity all the time and I cannot really find a pattern describing which particular tones are set off and why. I also do not believe that Meniere's need manifest as low frequency tones exclusively.

@Jkph75
What has your hearing and T been doing recently?
Also, I had posted this on the tinnitus board for general readers but I had meant to pass on this literature review to you in particular about vascular causes of inner ear problems. I'm confident that my issues are vascular in nature, and you and I share a lot of symptoms at the moment. Some of the vascular conditions described are very rare, but many others are worth considering. I don't think many neuro-otologists consider these conditions, unfortunately.
http://vantipdergisi.yyu.edu.tr/2012-3/149-157 pdf.pdf

 

I'm under 3g of Valtrex daily since ~ 10 days.

I "think" I'm starting to feel a bit better... Never really had vertigo (only a few seconds long episodes at various times of my life) but a lot of Ts since 6 years, high and low pitches, and a full feeling + endolymphatic hydrops in my right ear for many months. It's worst when I wake up in the morning, but after 1-2 hours (and a few little espresso coffees), it's usually better, better audition as well.

Anyone here tried antiviral therapy for a longer period? Please share your experience!

 

@Coyotesheaven

I posted my hearing tests here https://www.tinnitustalk.com/threads/tinnitus-keeps-getting-louder-and-louder-—-what-am-i-missing

My tinnitus keeps getting worse even though my hearing seems better. I don't think I have a vascular issue, at least nothing seems to point to that for me. I have had some numbness also. My 2 brain MRIs showed several nonspecific white spots. They are back to suspecting ms for me and want me to have a lumbar puncture I really don't want to. Meniere's is still on the table too. If I am really lucky, I may have both! I saw a new Neurotologist who said that he had never seen hearing tests like mine. Another piece of good news!...or not. I'm going to an out of town Neurotologist next week. Hopefully, he can at least answer the Meniere's question. He is going to give me some tests they haven't bothered to here.

How are you? I feel awful for you. You are too young to have to deal with these things. Have you had an MRI?

 

@Jkph75

Yikes that sounds scary. I'm very glad you are going to an actual ear doc next week! Maybe he will be able to read the MRI for lesions on your auditory nerve, do the necessary testing like an ABR to see if what you have is retra-cochlear. There is a good chance that your hearing loss/T is central in origin because of what they found, which means you may not have Menieres.
I think you should also go ahead with the lumbar puncture because of what they found on the MRI. It does carry a lot of risks, but you really need it to rule out meningitis or an infection at this point, and intracranial pressure.
Just FYI, you should probably not drop the vascular bit, especially if they rule out MS and infections (praying to god that they do!). Vascular issues can also lead to nonspecific lesions in the brain, and can be localized to the brain only. I don't think you've had small strokes but there could be other things, arteriovenous malformations for example, that could be causing your symptoms.
Anyway, praying for you and I hope they don't find anything serious.

I've been ok, and thank you for asking. Still losing hearing every day, still T spikes everyday. The good news is that I have been put on a muscle relaxant so my neck pain/stiffness has gone away (finally!), along with some migraine symptoms. My current theory is that my problems are either vascular (something up with the arterioles in my cochlea), or due to tensor tympani malfunction messing with my ears, or a combination of both. I could additionally have a sensory processing disorder that is exaggerating everything.
I had an MRI in May, and a cervical MRI in August. They found nothing both times, and nothing on the auditory nerves. So my problem does not appear to be in the brain from what is known. Granted that I lost hearing from the noise of my last MRI, only possible certain death would convince me to put up with the hell of doing another one.

 

@Jkph75 ,
I had a lumbar puncture a bout 3 weeks ago.
Bit uncomfortable but over quickly .
Still waiting for my results as take about 6 weeks for it but all my scans were ok.
Just waiting on a special ear sscan...lots of love glynis

 

@Jkph75

I too have an unxplained white spot in my brain (only one spot though, on the right part of my corpus callosum) visible at MRI. They found it and monitored that for 6 years now and it doesn't grow, so they rule out MS at the moment. But this is still unexplained...

Have you or your doctors ever considered Lyme disease?

 

I have like 6 or 7 spots, but they are nonspecific and non-enhancing. At first they thought nothing of them and said they were from migraines. Now they are having me do MRIs all over again to check for more lesions. I did them all and they didn't find anything. I had a blood test for Lyme. It was negative. I have been on antivirals for a long time. I don't think they have done much of anything other than keep me from getting sick while on the Prednisone. I doubt the spot on your MRI is anything. 1 really isn't a big deal.

 

Does anyone know what a good dose of Betahistine is? If it is bad to take with certain conditions or medications? I am going to see if I can get a script for it. Anyone know where I can get it in the US? Thanks

 

Betahistine comes in 8mg and 16mg tablets 16mg three times a day can help menieres and can be taken with Cinnarazine 15mg tablets as directed on the leaflet...lots of love glynis

 

Yea I have come to realize Meniere's has crazy symptoms and not eveyone's is the same. Right before an episode by eyelids twitch. I feel a little strange. Sometimes numbness on the face. And even weird chest palpitations. Hot night sweats cold sweats. Just a variety of crap ha

 

Well I had had a good 4 months after starting the John of Ohio regime, only to experience my first ever drop attack today...I had been reading stories about drop attacks ever since I was diagnosed but always thought they would never happen to me. I can now attest that all the stories are true. They come out of nowhere and you have absolutely no control over what happens. It was the scariest thing I have ever experienced.
I hit my head on the way down but luckily I wasn't injured. About a minute after the attack I was back to normal, but was in shock for about 2 hours after. All I could think about was what if this happened on a flight of stairs? Or while driving? Or while walking on a jetty? I can't believe the general population is so ignorant about this disease. Does nobody understand how dangerous this is? To be frank anybody who has been diagnosed with Meniere's should not even be permitted to drive.

 

@MattL ,
They are so scary and had a few myself.
I blackout with mine also.
I can not drive no more since started with Menieres 12 years ago and I know myself it would be to dangerous to get behind a wheel again but miss the freedom a car gives you

Love glynis