Rare unicorn: Ever had migraine aura status?

So for the past two months I've been in migraine aura status (persistent migraine aura without infarction). It started after I had some medication changes. My migraines have never included headaches. They are just weird pain in my arm and neck and then tingling and numbness in my face. They usually go away after about 2-3 hours. Ha. Those were the good old days. In mid December, I had one that started and would not stop. It got worse than it's ever been and I got constant nausea and throwing up, sensitivity to light, sound, and smell. Made for a real fun holidays. Triptans couldn't touch it, a week of steroids couldn't touch it, and no non-steroidals stood a chance. At the end of December I went to the ER and they gave me the normal cocktail with magnesium, depakote, depacon, and some much needed ondansatron. I didn't feel much better but I went home. At the beginning of January I was still feeling horrific so I went back to the ER. They gave me morphine which was silly and then admitted me and gave me more depakote, magnesium, steroids, and DHE. I felt a little better but the numbness and tingling remained. My neurologist prescribed me nortriptyline but it didn't touch it (I'm currently slowly titrating down off it). I went to see another neurologist and headache specialist for a second opinion and she prescribed gabapentine and gave me another round of steroids. The gaba didn't stop it and had - ahem - unwanted (sexual) side effects (orgasm, where did you go?). I finally dug really deep into research, got my sister's university library login so I could read academic articles and found out that what I had was so rare that there weren't a lot of studies out there for treatments. I did find that 500mg acetazolomide daily had worked for 3 patients in a case study and that a one time dose of IV furosemide 20 mg has worked in another handful of cases. I went to my neuro again and he gave me the acetazolomide. I am happy to report that it DEFINITELY is helping. The problem is that the half life is so damn short that I have to take it every 3-4 hours and I keep getting breakthrough aura as it wears off. The case study I read said that patients were able to go off it after 5 weeks. Today I had an appointment at a special headache center where they do their own infusions. They listened to me and looked through the papers I brought about furosemide. I love the idea of doing a one time dose to break this. They are ordering it but it will take a week to come in so I'm on the acetazolomide until then.

My question is - has persistent aura without headache ever happened to you? What did you take and did it work/not work? Hopefully my relief with acetazolomide might be some help to you and I will report back of the efficacy of the furosemide. Any other unicorns out there?

***Edit 2/17: Today has not been great. Despite taking the acetazolemide every three hours, I'm experiencing terrible aura the whole day: tingling that spreads across my lips, tongue, face, and scalp. It's been so disheartening that I've been on the verge of tears all day. I felt so much better the past couple days and I had so much hope that this was going to be my answer.