I found this site from Meniere’s.org of which I have been a member for the last 7 years. I have been diagnosed with Meniere’s by an ent and 2 neurootologists. Have had all the tests run and have hearing loss and constant tinnitus which have pointed and confirmed the Meniere’s diagnosis.
Can a person develop MAV after dealing with Meniere’s?
After experiencing 6 months of full vertigo spins resulting in constant vomiting I had gentymiacin injections and felt good for about 6 months. What I deal with is many episodes of constant movement. Any straight lines waver, fluorescent lights trigger it and I have been sick most of January! My ent says it’s my “new normal”. I decided to go on a strong vitamin c regime to see if there is any virus lurking since my ent won’t prescribe antivirals.
What brings me here is the day i felt good I went for a walk and smelt strong cigarette smoke which sent me into a strong case of dizziness. The folks over at Meniere’.org said they thought this might be MAV. I had horrible migraines in my 20’s and have constant headaches,3-5 a week and have had since I can remember.
I did talk my dr into betahistimine which he doesnt’ think will work and so far he’s right. Can that drug work for MAV? When I’m dizzy should I take the valium for the dizziness or an OTC for migraines, since that’s all I have available.
Should I continue with my ent or make an appointment with a neurologist? I just finished the Migraine Mind by Bernstein. Can’t say I found it too helpful.
Any and all advice will be most appreciated.
Thank you,
Laurie
Laurie
You can have both Menieres & MAV & some of our forum members have been diagnosed with both. The constant movement, wavering of the straight lines, triggering by fluro lights are all symptoms I have. MAV is a possibility for you. A neurologist who specialises in diagnosising MaV would be the way to go, especially with the Menieres ‘clouding’ the issue.
I went the ENT/Neurologist route & wasted precious time before getting to see an experienced MAV neurologist who could give me a correct diagnosis & treatment. Valium is a good short term treatment for dizziness until you get a diagnosis & a preventative. Be very ‘sparing’ if you use a migraine abortive - they can cause ‘rebound’ headaches’ so you end up worse off!
Good luck
Barb
Barb,
Thanks for the advice! I appreciate you taking the time to respond.
When i told my ENT about the fluorescent lights he looked up in his exam room and said “these are fluorescent why aren’t they bothering you now?” I also realized I get a bad headache after a real bad dizzy day and I thought the Valium was causing it to which my doctor had no answer, just shrugged his shoulders. He must not know anything about MAV since he has responded this way.I think it’s time to get to a neurologist too.
thanks again,
laurie
Hi Laurie and welcome! I used to hang out at .org. The Survival Guide is still there in the database (I think).
Have a read of this from the new diagnostic criteria for vestibular migraine published late in 2012:
3.6. Overlap with Meniere’s disease (MM)
Migraine is more common in patients with MM than in healthy controls. Patients with features of both MM and vestibular migraine have been repeatedly reported. In fact, migraine and MM can be inherited as a symptom cluster. Fluctuating hearing loss, tinnitus and aural pressure may occur in vestibular migraine, but hearing loss does not progress to profound levels. Similarly, migraine headaches, photophobia and even migraine auras are common during MM attacks. The pathophysiological relationship between vestibular migraine and MM remains uncertain. In the first year after onset of symptoms, differentiation of vestibular migraine from MM may be challenging, as MM can be monosymptomatic with vestibular symptoms only in the early stages of the disease.
When the criteria for MM are met, particularly hearing loss as documented by audiometry, MM should be diagnosed, even if migraine symptoms occur during the vestibular attacks. Only patients who have two different types of attacks, one fulfilling the criteria for vestibular migraine and the other for MM, should be diagnosed with the two disorders. A future revision of this classification may include a vestibular migraine/MM overlap syndrome.
Please see the paper for all references pertaining to this paragraph.
You are a definite MM case yes? Has hearing loss diminished significantly? Note what Prof Rauch wrote a while back: "Robert Baloh (otoneurologist at UCLA) has reported that 20% of patients with MAV develop SNHL. Patients with both MAV and SNHL can be indistinguishable from Meniere’s disease. They can be considered “migrainous Meniere’s.”
Best … Scott
p.s. I can’t believe that comment by the ENT and the lights in the office. Gotta be the stupidest one I’ve heard yet. :?
I was told by three ENTs, two from very respected hospitals in the area, that I had Menieres. I didn’t respond to any of the treatment, ie. low sodium diet and diuretics. I also had “gone bilateral” which is unusual for Menieres. I had additional symptoms such as the headaches (not what I would call a migraine, but a headache just the same) and numbness in my arms, so I went to a neuro. He started treating me for migraines. My neuro knew of the connection between migraines and veritgo but not with the ear issues I was experiencing, but he still treated me. Within a few weeks of starting Topamax my vertigo stopped completely. I’ve had to add ami to address some of the harder to treat ear issues, but I’m getting closer to 100% by the day. I have since found an ENT who has confirmed that migraines are the source of my problems, not Menieres. I even had measurable hearing loss at the time I saw her, the difference is generally, with Menieres the hearing loss is permenant eventually, migraines it is not. She actually called mine otologic migraines (ear migraines) but I think its all one in the same. Treat the migraine, cure the problem. I would encourage anyone who is not responding to Meniere’s treatment to find a doctor who will at least try to treat you for migraines, you have nothing to lose and any well educated doctor will know that clinically they present very similarly so you would not be out of line to request that treatment.
A year ago I slipped into chronic migraine again. The symptoms were very similar to Meniere’s so I was investigated for that. Aural fullness, tinnitus and (worst of all) rotational vertigo. All migraine!
So yes, your symptoms could all be migraine, or it could be migraine and Menieres. I would be looking into migraine first before going down the Meniere’s path.
AjS that is great news you are feeling better with the meds! Good for you for perservering and getting the correct diagnosis!!! Did you have any trouble walking/balance- if you did, have the meds helped that? I hope things keep getting better and better for you!!!
sarahd - I had spells of vertigo that last 12+ hours but I also had occasional dizziness that made it a little tricky to walk sometimes. Those symptoms were the first to resolve for me. The ear symptoms were the stubborn ones.
Thanks guys for the responses.
My ENT wants another round of VNG testing done before he will look into the migraine possibility. At least he didn’t say it was a ridiculous idea. I do have permanent hearing loss,even on days that I consider good days I can’t hear very well on my right side and have to use my left ear to understand what someone is saying.
I’m definitely not looking forward to the VNG testing since the last one made me sick.
He said once we know where we stand on whether the Meniere’s has gone bilateral then we can determine if the migraines are what we need to consider.
Big snow storm today in Oklahoma and my head is killing me and more dizziness today. Rats! Yesterday was such a good day, one of the first in over a month!!
Blessing to you all,
Laurie
Not to give false hope, but if all of your issues are migraine related, your hearing may return once you have proper treatment. I had horrible hearing in my right ear off and on, I think the longest stretch was over a month. Once I got proper treatment it returned and this was confirmed with hearing tests.
I started topa at the end of August and worked my way up to 100mg. Felt pretty good for awhile and then had a big set back in December. Thats when my hearing got really bad for about a month to 6 weeks. I started 10 mg Ami in addition to the Topa and its been fantastic!!! I’ve gotten some breakthrough headaches the last week or so (I was ovulating, mine is very heavily connected to hormones), so I’m going to talk to my neuro about upping my ami at my next appt. BUt even with the headaches my hearing is still great! My veritgo went away at about 75 mg of topa and the ear issues are clearing up with the ami. I still have some ringing and that may never go away, but compared to what i’ve been through in the last few months I’ll take it!