Possible MAV, BVL, Lyme, visually dizzy

I wasn’t too sure where to post this, so I hope it goes to the right spot and that this may ring familiar with someone as I’m desperate… absolutely desperate to find some answers.

A few months after getting super sick In 2006 I woke up with Vertigo. Went to an ENT who said allergies or mold exposure. Testing didn’t bring up too much other than slight weakness in my ear. I remained dizzy for a few months.

Next came the anxiety and feelings of disconnection along with issues with my depth perception and seeing sparkling gnat-like things in my vision during the day.

I was put on prozac, which I had taken previously for anxiety. I seemed to get somewhat better aside from residual feels of not quite being my typical fun loving self.

I stopped taking the prozac in 2009 to get pregnant and that’s when I started seeing trails in my vision.

Once I had my son I got pretty depressed and started back on prozac. This is when the daily migraines started. I was switched to zoloft and within 3 days I was seeing static (visual snow) and afterimages.

I made an appointment to see a well known migraine specialist at a university… it took about 8 months to see her and was ultimately switched over to another specialist last minute. She diagnosed me with basilar migraines and I was put on Vera pail 20mg 3 times a day. Within 2 months the migraines were gone and the visual symptoms were 80% better.

I stopped the medicine after a year thinking I was a lot better… I made it about 8 months and then the migraines came back and this time it brought dizziness. I was experiencing in the car, watching certain fast moving scenes on the tv, etc. I went to a dizzy specialist who did testing and said I had bilateral vestibulopathy… AKA weakness in both my ears, one of which was close to zero function.

I was put through VRT and my neuro put me back on verapamil. I seemed to do better with the dizziness with this.

The exact day after my last VRT treatment, in which I was told recent testing showed I regained most of my functioning, I was sitting in traffic when the light turned green it seemed like all the cars around me were going faster than normal… like super speed. This scared me to death enough that I called my husband and told him about it. I put it aside and forgot about it.

In Sept 2013, a week or so after the fast motion but in traffic happened, we were taking a trip to Miami for my husband’s job when I noticed the cars on the opposite road on the interstate were moving funny. Like they were not moving smoothly… more like a stop motion flip book film.

Once back in town I saw my neuro who said there was nothing she could do and had no idea what it was. Feeling so hopeless I started asking the visual snow board and found a few people who experience this as well. This symptom is awful and makes me even more dizzy. Everything is choppy in my vision .

Shortly after all of this I got tested through igenex for Lyme which came back positive. I did this because I had a positive Elisa come back in 2010, but was told I couldn’t have lyme.

I am about to start a mild treatment for lyme and am praying this could be my answer, but I’ve been like this for so long that’s it’s hard to believe that will be my answer.

My worst symptoms are the dizziness… I get dizzy sporadically. If I sit on a soft mattress the micromovements make me dizzy… same with a soft plush chair that rocks, movement in my car at a stop light… like someone shaking their leg. Being in lower light setting like church, or my bedroom. This isn’t always… some days I am fine. It seems like 20 days out of the month I am either slightly off balance or really off balance. This coincides with my vision issues… they are either not so bad or super bad.

The doctors here don’t know anything about MAV. I feel as hopeless as you can get… and honestly feel like I can’t go on much longer. I am merely existing and not who I used to be… it just sucks.

Any advice or does any of this sound familiar? Have you gotten better?

Thank you,

Candi