I have written here a few times. I am about 7 months into my experience with what I thought was MAV. I was diagnosed in April with MAV, over the phone by my neurotologist. I even got a second opinion from Dr. Teixido, also over the phone, he too said MAV. I am having a hard time tolerating ANYTHING (as far as meds go). I even struggle to tolerate supplements. My worst symptom is feeling faint (pre-syncope.) I went to the ER a couple of weeks ago and they IV administered Phenergan and that was the scariest experience ever. I immediately felt like I would faint, my legs stopped working, it was wild.
Now all of a sudden, my digestive system is involved. It is forever irritated. I have not changed diet much, except to follow HYH. I am nauseous all the time. I have this terrible air hunger feeling occurring, as well as, palpitations. And most of my really bad episodes are lasting more than 8 days in a row. Is that even possible with migraines? I had thought 72 hours was the max. As of now, I’m on day 9 of a horrible episode. The other thing is, I do not get headaches. I have no way of identifying prodrome or postdrome or any of it. None of it makes sense. There really is no beginning middle or end to this. I am dizzy 24/7 but then have these worsening of symptoms episodes. Now the lorazepam isn’t even working for the dizziness anymore.
I have become so desperate I have reached out to the Mayo clinic. I had found a program in Dallas that supposedly helps deal with MAV and POTS, however, it is $8500.00! Which I am skeptical about because literally nothing I have done has worked. So, I am worried about blowing 8500.00 and getting no result.
I am just wondering what those who have had a hard time with medications have done? As well, is there anything that could help me differentiate between POTS and MAV? I have done simple testing for POTS but not a tilt table. I am just not really getting any guidance from my providers. They just offer me preventive medication and say that’s all I can do. TIA.