New to forum as of tonight - what a wealth of information.
All, I was diagnosed with MM in 2009 but in 2012, I was told there was something else going on other than MM because my symptoms were not entirely consistent with MM. I visited with a neurologist for the first time last week and we have started down the road of medicating for migraines. Here are my symptoms:
Constant near-dizziness to dizziness. I can feel the unstability of a dizzy attack sometimes. Always feel like it can hit.
Dizziness never lasts more than 5 seconds and more typically less than 2. Feels like the room is spinning for a split second and stops.
After a dizzy spell, I sweat for a few minutes and get a compression feeling on the top of my head - feels like a hat that is too tight.
My toes get a cold feeling - only my toes but they are warm to the touch and have good color. It is only a sensation.
I get very tired. I could sleep 12-14 hours each day.
I have lost a lot of hearing in my right ear, but the attacks I used to get were a bit longer in duration and came in 4-6 week groups. Now it is shorter spells that are far less severe but I always have them.
Okay, does this sound more like MAV or MM or something else? I have gone thru dozens of tests that have ruled out just about everything else.
This sounds like MM to me. Have you had an ecog test? This def fits the description of MM. and my MM i assume you mean Mieners (im sure i spelled the wrong).
This sounds like MM to me. Have you had an ecog test? This def fits the description of MM. and my MM i assume you mean Mieners (im sure i spelled the wrong).
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MM = Meniere’s
I had an ECOG but the results only showed inner ear damage. Did not show or it wasn’t mentioned to me, MAV.
My symptoms have never been classical for MM or MAV. For example, I have never had the full-blown vertigo that make you throw-up or you need to lay on your back. Instead the worst case was spinning with loss of balance that required me to lay on my stomache. Also, I have never had the ringing in the ear but do have the hearing loss.
I Always thought that the if you don’t have the ringing it’s not MM…
Every one on the meniere.org has tinnitus I believe…
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That’s what I thought too. I have explained this to at least 5 ENTs in the last two years, and the fact I have never had the full-blown vertigo. Seems like the symptoms vary dramatically for MM.
Yes, you can absolutely have both going on. And from what you’ve posted it sounds like you do given what sounds like profound hearing loss. Note, some do experience hearing loss with VM but to my knowledge it is not a profound loss. I might ask someone else chime in for me on that point. Burd had some nasty hearing loss which vanished when her migraine was brought under control.
Have a look at this diagram:
And this from the new IHS 2012 diagnostic criteria.
3.6. Overlap with Meniere’s disease
Migraine is more common in patients with Meniere’s disease than in healthy controls. Patients with features of both Meniere’s disease and vestibular migraine have been repeatedly reported. In fact, migraine and Meniere’s disease 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 Meniere attacks. The pathophysiological relationship between vestibular migraine and Meniere’s disease remains uncertain. In the first year after onset of symptoms, differentiation of vestibular migraine from Meniere’s disease may be challenging, as Meniere’s disease can be monosymptomatic with vestibular symp- toms only in the early stages of the disease.
When the criteria for Meniere’s disease are met, particularly hearing loss as documented by audiometry, Meniee’s disease 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 Meniere’s disease, should be diagnosed with the two disorders. A future revision of this classification may include a vestibular migraine/Meniere’s disease overlap syndrome.
This ear stuff is so tricky bc i have the ear humming but my bouts of dizziness seems to be long bouts not the classic couple hours and i too do not get the spinning. I get the jumpy eye syndrome. I had one ecog come back abnormal and anoyhet be totally normal. I think these ear thing.just vary so much. Mydoc.swears its not MM but he also said he doesnt know what m problem is lets try MAV. So its not very encouraging.
I have decided to get 3 opinons. After that im done with it all. I cant keep living my life worried about my ear whom i have.decided to name mr. Wiggins. I can blame mr. Wiggings for all my troubles. Lol i may have to write a.book about him.
In my earlier years of dizziness I had a diagnosis of MAV . Later when I had a abnormal ECOG it changed to MM. I too am just as confused as to which if not both my issues are coming from. This past year was spent pursing help when I had a abnormal VEMP that indicated SCDS. After further testing it was determined by Mass Eye and Ear that I do not have SCDS.( I live in Tennessee, and unfortunately I can’t go back at this time) Like you my symptoms don’t add up to MM. I have battled this for 15 years, but have never once had a attack of rotary vertigo. Instead I have 24/7 dizziness/ imbalance. I have bilateral tinnitus and it affected both ears at the same time. MM if bilateral rarely starts out that way. I have hearing loss, but in a unusual cookie bite pattern that is thought to be genetic. MM hearing loss is usually low frequency first) After 15 years at this if it was MM I should have a profound hearing loss which I don’t have. One other thing that makes me doubt my MM diagnosis is that I have tried everything in regards to treating it without success. Meds, dex perfusions, diet, vestibular rehab ( more times than I can count) and even spent a month in Portland with the famous Dr. Epley seeking relief. In the end I have been blessed with remissions where I was symptom free except for tinnitus. I have reached the point where obviously doing the same thing over and over and expecting a different result is crazy. I am trying the MAV route and praying this is the answer to regaining my life.
I hope that you are able to find answers and a solution very soon.
