Possible MAV diagnosis-questions re: symptoms

I am new to this board, so I will try to give a brief background. Began being dizzy last summer. By dizzy, I mean feeling off/off-balance; when it’s really bad, busy floors bother me, large stores (lighting?), watching cars go by at lights, looking down. I also get intense pressure/pain basically in a circle around my eyes, nausea. So, thinking it was sinus/allergy related, I began seeing an ENT last October. She treated me for allergies, say the pressure was due to sinus congestion, and that drainage could cause nausea. Continue on that path, had allergy testin this spring, then had 2 episodes of vertigo in April with an ear infection. Due to the vertigo, and the lasting dizziness afterwards, I had a hearing test and balance test. Hearing was good, balance (ENG) indicated vertibular problem with central issue as well, so I then had an MRI (normal). At that point my ENT said “just inner ear, keep moving and take Antivert as needed, the dizziness will come and go.” What?!?

I saw a new ENT Thursday, said my main symptom was the weird dizzy but not really dizzy, just off feeling, mostly visual, and the intense pressure around my eyes. He said he heard a heart murmer (I am 37, have had 3 kids and 2 EKG’s and have never been told I have a heart murmer) so has ordered a heart echo test, and a thyroid check. He said the echo was just a precaution and the the murmer he heard usually indicated a healty heart, and that he usually orders this test first. He checked my BP while I was laying down, then I stood up and he quickly checked it again (normal). He checked for BPPV, said I did not have that. He said he thinks it’s a migrain issue. Does any of this soud like something some of you have experienced? My main symptoms are the facial pressure/pain, nausea at times, feels like I am walking weird, or that the floor/ground looks/feels weird, large stores are really bad and seem to cause the pain/pressure at times. Oh, and I can take tylenol or other OTC meds and feel better, but then the facial pain returns hours later.
I have been really anxious since this all started, and forever I thought it was sinus/allergy related, but after reading about MAV my symptoms fit that more that anything esle. Thanks !!!

I can relate to all the symptoms you report. It’s common to be misdiagnosed as having sinus issues. i’m so sorry you are dealing with this.

Yes, I too relate to all of your symptoms. I don’t have them all now, but I did two years ago. I don’t have a magic fix for you, but I can tell you Zonegran (zonisamide), which is an anti-seizure med I take as a migraine preventative, eliminated the daily pain and sinus pressure I used to experience. I too was able to relieve my mild to moderate pain with OTC pain meds temporarily, but it’s nice to not have to deal with that daily anymore. I differ from you slightly in that my pain was on top of my head towards the front, and while I had a constant feeling of sinus pressure, it wasn’t painful to me. Again, both have been relieved by the Zonegran, so I think they were related.

I also used to have a lot of issues with patterned floors. If it was a multi-colored spotted pattern, it almost looked like a bunch of bugs moving around at a fast pace to me. Very weird. In addition, long hallways would appear as if they were rolling like in a fun house. Fortunately, I no longer experience the rolling floors and the moving patterns don’t bother me much either. My vertigo episodes are few and far between now too. I don’t know if I can attribute these improvements to Zonegran though. I’ve made other lifestyle changes and I take other medications and supplements that may have contributed.

My best advice is to be your own advocate, don’t give up, and continue to live your life while you are on your journey to finding answers. Good luck to you!

Hi Friends,
Just wanted to update you on this thing, whatever it is. I had the heart echo and thyroid test: normal for both. So, where to from here? My main symptoms are the facial pressure in a target around both eyes/pain in cheeks, and pressure in eyes, along with the weird vision, kind of like when you turn your head back and forth and have that little 1-2 seconds of off-balanced feeling. I have to make an appt. with the new doc for a follow-up, but my GP (who did not hear any heart murmer) has prescribed beta-blockers to try. I do take Ativan as needed, and it really helps with my dizziness, but I want a diagnosis of this. At the rate I am going with all these tests, I expect the need a colonoscopy (just to be sure nothing wrong there) to rule out something else-I am so frustrated !!!