Possible MAV diagnosis

Greetings! While it is certainly sad to read about the symptoms everyone is experiencing with MAV, it is also reassuring to me that there are others out there who have had a similar diagnosis and are living normal lives. I have had on and off disequilibrium/lightheaded ness for many years, usually attributed to two concussions I had during the past seven years. It usually lasted a day or two, then it was gone for months. On Septemeber 24, I had a bad episode of lightheadedess and accompanying symptoms on a camping trip. The symptoms did not go away. They include: disequalibrium throughout the day, an on and off rocking feeling when I stand still, light sensitivity-ESP flor. lights, feeling like I will pass out, almost a sense of sensory overload in big stores, feel like I am still moving when I stop walking, etc.
I visited my doctor 2 weeks later (and made a trip to the ER). Doc said I may have a toxic reaction to a bee sting that I got while camping. This began my 3month odyssey through the medical system. I have hearing/balance, blood work, MRI, etc. I saw a neurologist last week who suggested either Meneires or MAV. As he was leaning toward MAV, he put me on nortriptyline 10 mg, increasing this week to 20mg. I saw an ophthalmologist yesterday at the Moran Eye Center due to my strong aversion to floruescent lights and he recommended a pair of prescription tinted lens that cut the blue light. He also suspects MAV.
As my mother has experienced migraines for years, I suspect i may have inherited that gene. Luckily,I have had no headaches, as she does. I am hopeful that my medication, glasses, etc. will help me return to a semi normal life. I am extremely thankful to have found this site and others who share my symptoms.

Have you every been evaluated for perilymph fistula? I would consider this diagnosis since you have a history of head trauma.

Hi Jen,

I have two pairs of glasses that I had treated at the Moran Eye Center. I find them really helpful to cut the glare. However, since I have been on an antidepressant I have not needed to wear them all the time, as I used to. But you should definitely try a pair, they might help you now. Presumably you live nearby and could get them to do it easily.

It sounds to me like you might have MAV, and that you are taking a pretty standard first line treatment option. Sounds like you are on the right track.

Longshort, I did get pair of glasses yesterday as I live very near the Moran Eye Center. Wore them around this morning when I went grocery shopping. They actually seemed to help cut the glare. I will continue to wear them. Had a pretty bad episode of lightheadedness an hour later, but I think it was low blood sugar. I seem to have lost my appetite on the meds and have to really remind myself to eat. Will continue on the same course and hope for the best!

ichbindarren, I am not familiar with perilymph fistula, but will research it. I have a follow up with my neurologist in 3 weeks and will address it with him. Also, getting an EEG next week to evaluate, hopefully rule out, seizures.

Thanks for your responses!

Hi Jen,

Two things that to me puts migraine on the top of the list: light sensitivity and family history. These two things are very strong indicators. The other things are more garden variety symptoms of what is likely MAV.

Good luck with the Nori. It should work if you can tolerate a tricyclic.

Scott :slight_smile:

Thanks, Scott. I am hoping the Nori works for me. I really hadn’t considered migraine as a cause because my mom’s migraines are totally different, mainly headache and nausea. My light sensitivity also relates specifically to indoor fluorescent lights. My primary doc thought it sounded oddly like seizures. I was relieved when my neurologist and opthamologist both said my symptoms didn’t sound odd, but were indicative of MAV. I have been able to deal with it, continue working, etc, but am glad I may get relief. Incredibly happy to find this form last night and realize I am not alone!

Hi jen

i hope u get some relief from all this,at least it sounds like you have some good drs that are trying to help. alot of us go years & years with no diagnoises(sp)


Im also on nori (30mg) its helped about 50%…which is better than nothing. take care.

Migraine is much more common than perilymph fistula (PLF), but keep perilymph fistula as an alternate diagnosis if you dont get any improvement from migraine lifestyle and medications.

PLF is caused by a tiny leak (usually microscopic) in the oval and/or round window, the leak allows perilymph to leak from the inner ear. The diagnosis is difficult, and can only usually be made by an otologist or neurotologist. The symptoms are nearly identical to MAV, except for a few key points:

  • PLF is not effected by migraine triggers.
  • PLF patients often have valvalva induced vertigo or dizziness.
  • PLF patients sometimes respond to the pneumatic otoscope with vertigo and/or nystagmus.
  • A recent trauma history raises suspicion of a PLF.

But some PLF patients exibit none of the characteristics listed above, hence why the diagnosis can be so difficult.

Hello, just wanted to post an update. After 4 weeks on Nori having some mixed results. Never increased over 10 mg a day, as my doctor was concerned about the heart rate issue. Good: the tingling in the left side of my head has been greatly reduced. Bad: increased heart rate, constant tinnitus, heartburn. It really hasn’t stopped my imbalance, which I equate to standing on a boat.
I have been keeping a detailed journal of symptoms during the past 4 weeks, and have found that the majority of my imbalance kicks in when I am looking up and down frequently. I am a teacher and the motion of looking at a screen, then the board, and so on, brings it on. Looking down to send a text, hovering over the stove when I am cooking, pretty much several head down or head up motions cause the problem. Also, have found that warm temps, my classroom is a little warmer now due to outdoor winter temps, brings on imbalance and actually makes me sweat more than normal. Interestly, I feel pretty good in motion, ie. driving, but when I stop at a light, I get a little dizzy. Same thing a treadmill, while I am on it, feel ok, when the motion stops, the imbalance kicks in.
Had an EEG two weeks ago and am heading back to a follow up with my neuro tomorrow. I will report back.