I suffered what appeared to be typical Meniere’s attacks and then had the Grand Finale at the end of April 2011 that landed me in the ER to stop the merry-go-round…I wanted off. Since then I have never been the same. Been to 2 ENT’s, 2 Neurologists, had an MRI and a hearing test (lost 75% of my hearing initially and now have about a 30% hearing loss in L ear only). FINALLY I was referred to the House Ear Clinic when the ENTs threw up their hands and the neurologist refused to listen to me when I described MAV symptoms. The doctor @ House, Rick Friedman, ran every available test (CT, 2 more hearing tests and a VNG). My hearing has improved since the original attack but has stabilized and shows no further improvement. Balance test normal. CT normal. Dr. Friedman concluded its not my ear, its neurological, so back to my PCP I go to see the same Neurologist who dismissed my MAV symptoms as “highly unlikely” that I would have both MM and MAV.
Around early November I was FEELING GREAT. I was feeling up to driving the freeway (which I hadn’t done since April 2011). I felt as “normal” as I thought I was going to be and was ready to get off disability and go find a job.
Then I got the creeping crud (a virus) everyone else got around me…lasted 2 weeks (and I NEVER get sick!!). Ringing in my left ear went from a dull nothing that could be easily ignored to a buzz saw. Now spreading to the other ear intermittently.
Then my husband had back surgery, which lead to some very stressful events which produced a great amount of anxiety. Boom…I started staggering like a drunk again. WTF?? Really??? My left ear is so loud that is making falling asleep difficult, and I’m walking like a drunk…great. I didn’t feel I could drive the freeway as I was feeling the world start to swirl about occasionally. That I hadn’t experienced in months. Yet another family crisis arises and there’s more anxiety. As of 2 days ago I can’t drive, or even be a passenger in a car without feeling extremely nauseous. Today just walking around the house this morning and I’m nauseous. WTF?? NEVER had that before. Only had nausea when I was in the ER and brief periods right after I came home.
Started doing some on-line lookie-loo’ing and found where someone has posted about MARD - Migraine-Anxiety Related Dizziness.
Currently I have at my disposal 2mg Valium (which I hadn’t been taking/needing for a long time as it doesn’t help with the staggering) and taking 6/8 mg at onset of the nausea as well as 25mg Meclizine.
I’m also in therapy to deal with the root causes for the anxiety (gotta love effed-up families, huh?)…
Dr. Friedman @ House tried me on a tricyclic antidepressant and I cannot tolerate those. Also tried a beta blocker Indoral and it tanked my blood pressure so I cannot take that either.
For those of you out there with any words of wisdom to share, I would love to hear them.
I see my PCP on Monday in the afternoon and she initiate the referral to a Neurologist (hopefully our HMO has a new Neurologist) - or should I see a Neuro-otologist???
Thank you…I know this was lengthy but wanted to give proper background. I appreciate your feedback and your time.
Steffany
HI
do you have any history of migraine? Headaches, motion intolerance, visual aura? Depression/anxiety? What is your age? Any family background of migraine?
Does the Valium take your symptoms away?
Kelley
I’m 47 years old. i have a history of migraines going back to puberty. One incident was triggered from a stressful childhood event that was triggered by being bullied by a neighbor - dizzy spells, not headaches exclusively. Later when I was 30 I started getting migraines that lasted 3 days, once a month. After I stopped taking the BC pill the headaches lessened thsnk God but the brain fog remained.
As a child I always hated he Tea Cups at Disneyland and the merry go round; never understood why people enjoyed it.
I have a history of depression since my childhood. Now taking 100 mg wellbutrin 2x’s per day. The Valium doesn’t seem to do much now. I’ve resorted to Meclizine to knock myself out hoping this will pass but its not passing
Because i have reflected back on my episodes they were precluded by anxiety. Just wondering if that is my trigger. If MARD is something I should share with my doctor.
It’s actually very likely that you have MM and migraine - people with MM have migraine at much higher levels than the general population.
Your symptoms do sound a lot like migraine. I wouldn’t get too caught up with whether it’s MAV or MARD - the root cause is all the same - migraine - it’s just manifesting in different symptoms. Migraine symptoms change over time. This is well known. Definitely discuss it with your doctor.
HI
Victoria said, and i will add that the fixes are the same as well…or at least similar. Antidepressants are generally a good bet for Migraine if you have accompanying depression/anxiety. The circuitry is well linked.
Kelley
I’m not at all convinced you are dealing with any MM. It sounds to me like you had one major migraine episode that did your hearing in and it recovered somewhat. This, to my knowledge, is not the way MM works. There is no progressive hearing loss in your case. Is it low frequency loss?
You should speak to a lovely lady here named Burd. She got the attacks like you describe and her hearing was smoked for a long while until she sorted out her triggers. I think most of her hearing has now returned. Migraine can most definitely impact hearing.
You have the history there which is a big red flag. What about light and/or sound sensitivity? Two strong diagnostic indicators for migraine based illness.
Your history with depression is not surprising either. Migraineurs are much more likely to suffer both depression and anxiety. While I wouldn’t get hung up on MARD, it’s good that you read that paper. No doubt anxiety is a big trigger for you as it is for most of us. The more you learn to park it, the greater your chances of increasing your migraine threshold.
I just re-read my post and realised I should clarify what I mean by ‘it’s likely you have MM and MAV’. What I actually meant was that I disagree with the doctor’s statement that it is very unlikely you would have the two. If you DO have MM you are much more likely to have migraine as well, compared to the general population. But, MM is actually quite rare, so it is more likely you have migraine alone.
In addition to Burd, I have recently been having lots of issues with my hearing. I re-did all the hearing and balance tests and it’s not MM, still migraine. Also, Dave (Taavinen) has serious hearing problems and I’m pretty sure he’s been given the all clear on MM (after review by a swarm of experts).
First of all, thanks for the great info. It has helped me tremendously.
I just booked my appointment with my new neurologist so I would like to go in there with some information to discuss.
To answer your questions…
I had a hearing test done in May, one month after my initial attack. I felt my hearing was at about 50% of what it normally had been when that test was taken. I have had 2 subsequent hearing tests, both of which represent how I feel I can hear now/today which is an improvement - about 25/30% hearing loss over all. Those last 2 tests are nearly identical and show hearing loss declining at high frequency. I have attached a copy of my most recent hearing test. When I went over this with Dr. Friedman @ House he said that he has seen 1 patient with high frequency loss that had MM…ONE. Imagine how many he has seen.
I have light sensitivity (esp. driving in the morning when the sun filters between the trees and it’s “light-dark-light-dark” in rapid succession…urp…) and sound (I am the sound monitor at the house and am constantly turning the TV volume down and plugging my left ear when my husband talks too loud, which is most of the time).
Triggers - I BELIEVE they are anxiety-related. Thinking back when I was having a series of episodes when I was in Jr. High it was after being terrorized by a “friend”…most recently what I believe triggered the initial episode in April was stressing out over trying to get caught-up at work and get ahead of the game so I could go on vacation. I hated leaving for vacation because it was so much work…and dreading to return to stuff that hasn’t been done. STRESS! Most recently I have had 2 stressful/anxiety-riddled events that have made my symptoms worse, as if in “steps”.
Even though I have read that “anxiety doesn’t trigger MM” but I believe it certainly is my trigger point for MAV…MARD, call it whatever…but it’s definitely Migraine related. If I even have MM, its not active, at least it doesn’t appear to be. I think that has been what was stumping all the doctors (except the doc @ House) because it wasn’t acting like MM yet they thought it was. A real beard-scratcher for them…
Your thoughts?
How should I prepare when meeting with the new Neurologist?
Thank you VERY much for your caring, support and knowledge!!!
Steffany
PS: I can’t figure out how to attach a .PDF or .DOC file…wtf…running late for an appointment. can send later if someone advises how to do this?
Hi Steff,
your Hx is VERY simialr to mine in a lot of ways. Only differences are i experienced migraine as a child then did not get any further headache migraines. I do suffer from headaches, mor recently now than in the past actually. As well i do not suffer much from anxiety with this condition (though it has made me feel pretty down sometimes).
I got unwell and had a number of attacks (these attacks were pretty much weekly, i seem to have discovered Caffeine and maybe chocolate are triggers). I was mostly off balance and would experience the nausea you mentioned walking round the house. At the start it was so bad i would crawl from the couch to the bedroom. It only improved with a decent dose of prednisolone. I lost 90% of my hearing in only 2 months, then the last attack which put me in hospital for 4 days (They were able to stop the vomiting but not the vertigo, and i span CONSTANTLY for 4 days straight) and took the last 10%, so in 4 months i have become totally deaf in my right ear. It also took me about 3 weeks to walk mostly properly, though i look like a walking drunk sometimes still (esp at night or when i turn my head).
I did a lot of my own research (am a clinical nurse) trying to solve my problem. I trawled through hours of online access of Medline, pubmed etc and came to the conclusion i must have MM. I have seen 2 GP’s, 4 ENT’s and a neurologist. Pretty much everyone said “you have Meniere’s like symptoms, but something else is going on” and “this is not the usual behaviour of Menieres”. I was also repeatedly reminded that a Dx of Menieres is a “Dx of exclusion” ie you follow all other possible paths first.
After my last major attack i ended up being flown 2500km to see a leading Meniere’s expert and a leading Neurologist who is a pioneer in the area of Balance disorders. The Meniere’s expert said he had “never” seen Menieres do this in such a sort period of time, and the Neurologist upon reviewing my balance tests, doing some testing of his own and going through my 108 pages of collateral immediately Dx Vestibular migraine.
There is not a day that i do not feel drunk or off balance. I get moments where i briefly spin which is associated with a buzzing / surging feeling from my right side of my head. I am hoping medications can help with this, though i can handle living like this, but not the severe vertigo attacks.
I have started Cinnarizine, and have just started Pizotifen 2 nights ago. I have been on a tricyclic for a while which helps settle the day to day disequilibrium, but never stopped the attacks. I am also on Veramapil (recently increased the dose to 240mg)
What a great post - so informative and comprehensive. You are ‘fortunate’ in that you have been seen by some really world class doctors who know this stuff inside out - I think otherwise you may have been labelled with Meniere’s Disease. There are a lot of people who get diagnosed with MM but are actually migraineurs. They start an MM ‘protocol’ of treatments which of course do nothing for the migraine. While my case is nowhere near as severe as yours I too fit the criteria for MM:
hearing loss (although high frequency not low)
rotational vertigo
tinnitus (humming) along with fullness in the ears
attacks and periods of remission.
but I’ve also been told it’s migraine, not MM.
I think the most important statement in your post is ‘a diagnosis of exclusion’. People really should not be labelled with MM unless everything else has been ruled out. MM is rare, migraine is very common.
