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!