I’m so excited to tell you that after 13 months of suffering, my daughter’s symptoms have gone! There’s no nausea, dizziness, neck tension, feeling of imbalance, visual tilt! Her problem was in her eyes - she has Superior Oblique Palsy in her right eye. The Superior Oblique is the name of the muscle that controls the down and inward movement of your eye and hers is weak/not doing it’s job properly so that eye isn’t going where it’s supposed to. Therefore, her eyes do not work together. On one test my daughter saw a red dot and a white dot, whereas we would see a pink dot. The solution is glasses containing prisms for that eye. She has to wear them from the moment she gets up to the moment she goes to bed because her eyes cannot work together without them. If she uses both her eyes without the glasses, she will go back to having the symptoms she’s been having for the past 13 months. So, she either has to wear the glasses or cover/close one eye to avoid getting “sick” again. We finally found the answer by going to Michigan to see Dr. Debby Feinberg who treats a common but undiagnosed condition called vertical heterophoria. She describes herself as a “dizzy sorter” and she spent a couple of hours testing and asking many questions you wouldn’t expect an optometrist to ask. Her business card describes her as “specializing in the optometric treatment of headache and dizziness”. I can’t say enough about her - great manner, energetic, sympathetic, knew how to talk to a 13-year old, wants to help her patients and gets visibly upset at how long they’ve been suffering. She had my daughter rate all her symptoms at the beginning of the appointment and as she was testing and giving her different lenses to try, she would have her walk the hallway and then rate her symptoms again - and the numbers just kept dropping until they reached zero!! We had glasses by the end of the day and Dr. Debby told my daughter she was her hero for fighting so hard. The second day we went back so Dr. Debby could check my daughter’s eyes again, and they had already relaxed enough that Dr. Debby was able to adjust the prescription so we had a second set of lenses in by the end of that day. It is a progressive adjustment the eyes will be making so we will be going back again in the summer to see if her eyes have reached the point where they’re happy to stay, or if she needs different lenses again.
We heard of Dr. Debby Feinberg from a friend of a friend who had similar symptoms and had been helped by her. Dr. Debby’s office is Visual Specialists of Michigan (www.vsofm.com) and I read a lot on her website about vertical heterophoria, the condition she specializes in treating. I still almost didn’t go there, though, because my daughter reads non-stop and it didn’t seem logical that she had a problem with her eyes. I finally decided to pursue it when we saw a great local doctor to see if my daughter should be tested for Lyme Disease - and he just happened to comment that she tilted her head to one side. I hadn’t said anything to him about Dr. Debby - but I knew from reading her website that a head tilt was one sign of the vertical heterophoria. So, we completed an online questionnaire which Dr. Debby reviews and she called me the same day to say she thought there was a visual component to my daughter’s problems. Oh, and yes, we had seen an eye doctor here in March of last year, giving him all my daughter’s symptoms but he didn’t pick up on it - I don’t think most eye doctors test for this condition. Dr. Debby said she has about 20 patients with Superior Oblique Palsy. I think Dr. Debby compared to your regular eye doctor is like a migraine specialist would be compared to your family doctor. Dr. Debby also observed that my daughter veered to the right when she walked which is something neither of us knew! As you can imagine, we are so happy! My daughter woke up the morning after getting the first pair of lenses and said she didn’t feel tired! To see the transformation in her even during the first day as Dr. Debby was adding lenses, and she was seeing better, was amazing. As Dr. Debby had her walk around the hallways, you could see the bounce in her step return gradually after each adjustment.
I wish that all of you suffering these debilitating symptoms could have them disappear as quickly as we did!! I would encourage you to look at Dr. Debby’s website and complete the questionnaire if you feel that many of the symptoms apply to you. After all, we’d had 3 top-notch migraine specialists say that the problem was vestibular migraine but actually it wasn’t. Of course, I’m not saying that everyone who is dizzy has this, but I am extremely glad we decided to check it out and then see Dr. Debby.
I’m waiting to get my copy of the office notes from our visit and then I’m going to make enough copies to go back to each doctor we’ve seen in the last 13 months to let them know about this condition. I think it’s something that they should bear in mind - especially the migraine specialists, as my daughter’s symptoms were those of vestibular migraine. Thank you to everyone on this site who encourages others through this…your voices are extremely important to others trying to make sense of it all.