Possible Chronic MAV, Advice please

My wife has been battling constant dizzy symptoms for the past 2+ years. In that time we’ve seen around 15 doctors, none of whom really have a diagnosis for her problems. 3 different cardiologists have ruled out heart related problems after treating her for neurocardiogenic syncope. After that she saw a couple of ENT’s who ran a gammet of tests that turned up nothing. She has had a CT scan and an MRI which showed nothing abnormal also. A doctor in Memphis, TN recently diagnosed her with atypical Meniere’s Disease, but after she didn’t respond to the medicine he tried, he changed his diagnosis. He now believes she has Chronic MV and referred her to a neurologist. Unfortunately the neurologist had no clue about MAV, but did put her on Topamax to hopefully prevent the problem. She had to start at 25 Mg twice daily. Then she will increase by 25 Mg each dose every week. Once she reaches the optimal strength of 100Mg a dose twice daily she will take that for 3 months.

Does this sound like Chronic MAV to anyone or are we still grasping at straws?

To go into more details, this all started one day on her way home from school. She began to feel a numbing sensation on her right side and felt like she was going to black out. She pulled over and let the feeling subside and then continued to drive home. Since then she has felt a constant lightheadedness (rocking, swaying sensation, almost to the point of passing out) that never goes away. She does feel a spinning sensation occassionaly, but usually only occurs when she is lying flat with her eyes closed. The dizziness intensifies when she is standing and gets progressively worse as she stands. The only relief she is able to get is to sit in a reclined position with her head supported.

Because of the dizziness, she is not able to drive or go anywhere that requires her to stand for an extended period of time. Stress seems to worsen the symptoms also.

She does have a history of migraines, but only gets them 2-3 times per year. The dizziness is of course worse when this happens, which is one factor that led to the diagnosis of MAV.

If anyone has any suggestions, I would greatly appreciate hearing them.

Smitty,

Unfortunately, the only test for MAV is to get a diagnoses for it, then treat the symptoms as if they were a migraine variant. If the dizziness and balance problems go away, it was an accurate diagnoses.

It is not uncommon to find that doctors have never heard of it, or even any type of migraine beyond the classic painful type. From my readings, it appears migraine variants (incuding MAV) have only recently been defined (less than 15 years.) I talked to two nuerologists, the first was trained by the one who diagnosed me, but he had never heard of anything beyond the classic migraine. The second neuro, who was the doctor to finally diagnose me homed in on it right away.

If you or your wife haven’t been updated on migraine variants, MAV is a type of migraine that doesn’t neccesarily cause pain, also know as a silent migraine. It is called a migraine because it is caused by the same thing, vascular constriction. The difference though is that a MAV migraine is centered around the ear and causes all sorts of funky things to happen similar to several inner ear disorders. Myself, I have had less than a dozen classic migraines in my life time, and about 3 or 4 times a year I would get what I used to call a mini-migraine. I have been diagnosed with chronic daily headaches and stress headaches which are both classified as migraine variants, or at least that is what I was told.

At this point, I would not say that you are grasping at straws. Try the topomax and see if that helps. Something else that many of us have found is diet changes: do an internet search on “migraine diet” and you should be able to find something useful. Other things that help is to reduce stress, and try to maintain a regular sleep schedule seven days a week.

hey smitty,

I, too, am in the same situation as your wife. I started having rocking spells accompanied with lightheadedness and numbness in my right arm last July. After seeing two ENT’s and a neurologist, I have been diagnosed with MAV and was prescribed Topamax almost 3 weeks ago. The neurologist also started me off at 25 mg and it helped me get back to work even though there are days when I just want to stay in bed. I am kind of reluctant to stay on the drug due to the side effects which I am starting to notice since I started to increase my dosage to taking it twice daily (which are blurry vision, moodiness, and tingly hands and feet, etc) even though it has helped me a great deal.
I have a head and neck CT angiogram scheduled this Friday and an EEG scheduled for next Monday.
None of this makes sense to me since I have never had a migraine in my life and I try and work out at the gym at least 3-4 times a week. Now I have stopped all of that since I learned that anything that raises my heartrate causes my rocking spells :x
Sorry if I rambled on, I hope this helped somehow and I’ll keep you posted.