Hey everyone, new here…
A little back story - 15 years ago I failed a hearing test @ school ( then 14 now 29) . Turns out I had lost ~ 20% of my hearing in my left ear and about 10% in my right ear. Fast forward 5 years and I was rushed to the ER because I fell over and was SO dizzy. They thought I was having seizures because my eyes were shaking etc. I was diagnosed with menieres disease… this whole time I have accepted menieres disease as my hearing and vertigo get worse. Currently my hearing loss in my left ear is moderate to severe and the right is moderate. My vertigo has taken over my life , Im scared to do a lot of things because I fall and get dizzy daily. Fed up with local ENTs that couldn’t provide much treatment other than a benzo and diuretic I made an appointment @ Penn hospital in Philly. I heard this doctor was a specialist in menieres disease and was going to ask for gentamicin injections , I much rather control the vertigo and risk more hearing loss. I had a balance test (NIGHTMARE) a hearing test etc. etc. and he tells me I have Vestibular Migraines , either in conjunction with menieres or I was misdiagnosed. I am so confused ! The pain and fullness, ringing in my ears , hearing loss, the progression of my disease etc. sounds to me like meneires it always made sense and now after doing some research I just dont know… My main concern is that I have tried a lot of the meds that vestibular migraines are treated with. I was really hoping to get the injections to give me a break from the vertigo. I do not want a destructive treatment but I accepted it and was ready to risk the little hearing I have remaining on my left side to get a break from the vertigo. Im going to see the neurologist (of course) but I feel like Im starting over. Im going to have all these hoops to jump through while I still have vertigo. The benzos help but I hate taking them. I do not want to depend on them. Has anyone been through anything similar? Can you have both? Is there a way to determine 100% its not one or the other? Are the injections a treatment for vestibular migraines? Please help.
Hey everyone, new here…
Whenever I think i’ve had it bad, someone comes along to prove to me, I’ve had it relatively easy. So sorry you got this so young. Have you ever been explored for congenital fistulae?
The problem with Gentamicin treatment is that, apparently it leaves most patients with chronic imbalance. Also if you are bi-lateral there is even more risk, I understand. It makes more sense in someone who has lost all hearing I would suggest.
Perhaps its because my hearing is unaffected during vertigo, perhaps its because my vertigo is almost always relatively mild and relatively short in duration, but I would certainly say that chronic imbalance and nausea is FAR worse than my vertigo spells. And let’s not get on to de-realisation, head fog and head pressure …
I think there is a botox treatment for VM, but can’t see how it addresses the root cause. I’m not aware of any other injection therapy for VM.
In the UK Gentamicin injections are no longer recommended, watch the link:
It’s my opinion that VM is actually Secondary Hydrops, which is more common than Menieres but clearly shares some mechanisms, and symptoms. However, hearing loss is very mild in VM and patients don’t get a profound decline in hearing. Take a look at this thread:
All the best of luck!
Sorry to say, Ayla, that I can’t offer much he;p, except to say that I have walked a similar path to you. I started with ‘dizzy spells’ around age 20, only got diagnosis of Meniere’s around 10 years later, by which time I had already lost most of the ‘social’ hearing in the lest ear - although the right was fine. I am now 69 years old - and have had bouts of the vertigo and all that goes with it on and off ever since. Must add that some of the ‘free’ times lasted years …but it has always returned. Just over a year ago my symptoms morphed into the MAV area…my full (long) story can be found under ‘Profiles’ here.
I found the above article very interesting…but everything still remains unsure! At time of writing - I am ‘normal’ - just hope it lasts. My personal opinion is that there are a number of different causes for what has become known as MAV, and that in my own case it is perhaps a result of/damage from the Meniere’s - but where the MD came from in the first place remains a mystery. I still beleive that some of us have a basic genetic disposition I have had little help from the medical fraternity over the years since surgery 40 years ago, which did nothing for the vertigo, although it seems to have halted the already severe hearing loss. The tinnitus remains my constant companion, even now when I appear to be otherwise well…but I can live with that!!!
Personally, I have given up on getting a definitive diagnosis, and have concentrated on trying to find triggers that worsen the symptoms when whatever this thing is, is active, and just keeping my life as comfortable as possible.
I wish you luck with finding something to help you with the vertigo - I know how hard it is to survive day to day with it!! If you can possibly retain as much hearing as possible in the better ear, you can cope with most situations providing there is not a lot of background noise.
My husband was diagnosed with “Bilateral Menieres” 10 years ago. It started with intermittent episodes of fullness in the ears, tinnitus, vertigo with loss of balance and hearing loss. The symptoms have progressed to contestant vertigo, loss of balance with falling and hearing aids. He has never had headaches. We’ve have seen numerous specialists throughout the years. They are now treating him for MAV. He has tried many of the common medications for MAV- none have worked.
Has anyone had a similar situation they can share?
I cannot recall any very recent posters mentioning it but I checked it out by using our site’s Search facility and there’s lots of information there you may find of use. I know one of our current regulars Erik @ander454 has some Menieres connection and expect he mayl post a comment when he sees your post.
With regards to not having yet found a suitable preventative that is so much trial and error. Just gotta keep on trying. You will find a poll of the commonest on here in Wiki section and a thread listing 100 Possibles if you ask the Search facility. Take a while to get through that lot.
I had sudden hearing loss in my left ear 10 years ago (with no dizziness). Now I’ve had MAV for almost 4 years but I’m almost fully recovered. I do believe there can be some overlap with MAV / Menieres, I belong to a dizzy meet-up group in the Seattle area here and several people have both MAV / Menieres diagnoses. What medications has he tried and how long was he on them? I hope he finds some relief - being dizzy 24/7 is a very miserable condition, we all understand that on here.