Have MAV, trying to figure out next step

Since April I have had pretty much constant vestibular migraine, and/or Meniere’s Disease. Initially it was thought I just had MAV, but after a 25 day steroid regimen my MAV had briefly improved, and the Meniere’s episodes became evident. I am allergic to all but one diuretic which can only be taken in very low doses, so I had steroid injections through my right ear drum, and that cleared up the Meniere’s. Right after that my migraines stopped responding to treatment and by Mid September I had a Status Migraine with ongoing aura including vestibular symptoms, intermittent ataxia, aphasia, fevers, changes in blood pressure and heart rate, and the worst pain I have ever been in.

While I have been getting migraines since I was 13, I’m 32 now, and have always had aura, the MAV and Meniere’s is new. While I get full blown vertigo with MAV and Meniere’s I can tell the two apart. My Meniere’s episodes are random, and are always in the right ear starting with fullness, increase in tinnitus, and then the spins. The MAV tends to be shorter, triggered by motion, eye tracking, etc, and doesn’t have the full attack lead in that the Meniere’s does. Also, my Meniere’s is in my right ear, and the MAV is in my left, and my entire life my migraines have been left side dominant so this makes sense.

The status migraine finally broke up a week ago the NP with my headache specialist was willing to try another long round of Prednisone. However, I continue to get mild daily headaches, and on average 2 auras a day. I never know when they are going to happen, which stinks so I still can’t drive.

I have been on Amytriptlyine for about a month, and have been up to 75mg at night for about a week. I definitely think the Amytriptyline is doing something, because my last status migraine turned back into chronic daily migraines that were moderate to severe, and already my daily headaches are very mild. I may be imagining things, or being super hopeful, but I think the auras are starting to improve some. However, just yesterday I had a near fall from sudden violent vertigo, and was plastered to the couch from the perceived centrifugal force for about an hour.

I have a migraine specialist, an excellent ENT and a laundry list of medications I am allergic to or can’t tolerate. While my neurologist can be a bit of a pain her nurse practitioner is AMAZING and is willing to try new things. Both the neuro and her NP have been pushing for botox, I am skeptical that it will work for my MAV/aura. I have read some really promising studies about Lamictal and aura. I am torn between the two options, and only had a month and a half to get back to some sort of job. I’m also open to other ideas.

My current meds are: Amytriptyline 75mg, Cymbalta 30mg (doesn’t help the migraines, for unrelated nerve damage/depression), Soma, Prednisone, Valium as needed for vertigo, Reglan as needed for nausea/migraine, Midrin as needed for migraine, Meclizine as needed for vertigo. I also take Magnesium, B, D, and Calcium supplements daily.

I am allergic to: All NSAIDs (Advil, Asprin, etc), Sulfa, Sulfadamides (diuretics/TRIPTANS/etc), Calcium channel blockers

I cannot tolerate: Beta Blockers (blood pressure goes through the floor), Neurontin (tripled my falls!), Topamax (lose feeling in my hands and feet), and most anti-depressants worsen my migraines. The most recent status migraine kicked off with a trial of Effexor. However, when ADs work, they work. The Amytriptyline has been the most hopeful preventative so far.

Help, idea, success stories? I want to hear it all!


Hi willow

Sorry to hear you possibly have both meniers/MAV on each side that sounds terrible

I’ve had mav since November 20th 2013, I’ve maneged to get a bit if control but it’s still not over and I’m still fighting the battle

I believe all this is connected to the gut and immune system, first off all I would get on the migraine diet, eat only organic nutrient dense foods

Go to a functional medicine practicioner and get a comprehensive stool test done this will test for leaky gut and for fungus/parasites and gut infections

You may have hidden gut infection like h pylori etc these can go undetected for years and weaken the immune system allowing the likes of mav/ meniers to manifest

I personally tested positive for h pylori and candida- I have been working on eradicating them from my body and my migraine symptoms have improved drastically

Stress is also a major contributer, you need to get all areas of stress in your life handled and also make sure you are getting 7-8 hours sleep every night

I would also go to a chiropractor and make sure your neck and atlas joint is in alignment

Supplements I would recommend would be. Vitamin d & magnesium glycinate this is far superior to citrate as it’s more easily absorbed I noticed the difference straight away

I would akso get your b12 levels checked & hormones checked to make sure they are in balance

Working on all of the above I’m now down to 10mg nortryptoline and I intend dropping it over the Xmas period to see how I get on

I hope some of these ideas may be of help