My Daughter's Symptoms are Gone!

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 ( 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.

1 Like

So happy for you and your daughter! What a relief for you as a parent!! Best of luck!

That is such wonderful news & especially knowing that such a young child will not have to suffer any more. Also congratulations on your perseverance in searching for help for her - it does pay to never give up hope.

This is the really tough think about being diagnosed with MAV. All of the symptoms they ask in that questionnaire, match what I have. But those same symptoms are listed for multiple diseases e.g. Candida, MAV, fibromyalgia. Is this a condition you can just develop or did your daughter always have these problems? I am having a lot of problems with my eyes, but just put it down to migraines.

So happy to hear that!! Thanks for sharing. I know someone who also saw dr Debby and she helped her immensely. All the best to your daughter.

DizzyK: This is a condition that has probably been there since she was born and her body has just always compensated for it. Then it reaches a point when it can’t do it effectively anymore. (Can also get if from head trauma but I’ve read that it would have to be pretty severe and you’d complain about the symptoms immediately). My daughter has always passed the vision screening at school and hasn’t worn glasses before. She is addicted to reading - reads non-stop and that didn’t change once all these symptoms started. I almost didn’t pursue anything with this doctor because logically I didn’t see how it could be vision when she was still reading so much and without any apparent problems. Yes, I think that’s what makes MAV hard, because it’s a diagnosis of exclusion so you exclude everything else and then say it must be MAV. And there are quite a few other things that share the same/some of the same symptoms. I’ve always had typical migraine headaches with aura so this family history was a big plus in the diagnosis of MAV for my daughter. She was on her 4th migraine preventive medication, was taking the recommended supplements, and had been doing the migraine diet for 4 months as well as other lifestyle changes, so we were doing all the right things to treat the migraine BUT I just figured we would also pursue any other reasonable option even just so it could be discounted. We thought that her symptoms were due to migraine but obviously this eye condition gives you the same symptoms, because in my daughters’ case these symptoms were being caused by her vision. The nice thing about investigating this is you can do the questionnaire first so the doctor can see if it’s worth you making the trip; and then you will see immediate relief during your appointment if that is the cause of your symptoms. That way you know right then and there - better than having to wait months to see if a migraine med. works… Just want you to know that Dr. Debby is genuine - if she looks at your questionnaire and thinks she can help you, she will call you pretty qickly because she says one more day is just too much for someone to be suffering these symptoms. It doesn’t cost anything and you don’t commit to anything by submitting the questionnaire. Good Luck to you!

That’s wonderful news Anne- you must be so relieved! I did complete that questionnaire but never got a call- do you know if they only call people that they think might qualify for this?

I have “filled out” the questionnaire but have yet to submit it. Most of my answers were not “all the time” so I just thought maybe it didn’t fit me. However, with my remaining symptoms, I do think there is something eye related.

Sarah were most of your answers “all the time or frequently?” I am surprised you did not get a call back. I have heard she can even refer you to other doctors that may be in nearby area that handle this. I wonder if you might try submitting again. Maybe it got lost in the shuffle.

I know someone who went to a Dr. in NYC for it.

I actually can’t remember how I replied but I remember thinking that I didn’t seem to really fit most of the boxes. Yeah I could resubmit it. There was a post on this forum from a long time ago who ended up having this and not mav - I think it is in the other illnesses section- would be worth checking out.

I would suggest resubmitting it. Also, my daughter didn’t fill in all the boxes with “all the time” and “frequently” either. It’s worth resubmitting and just letting Dr. Debby decide whether she thinks it’s something she can help you with.

So Happy for your daughter… I have been dealing with this beast for 14 months and I am all cried out… I would love to get back
to work as I will not be able to continue on this path. I have seen too many doctors/specialists and still not much improvement.
I saw doctor Cherchi in November 2012 who gave me the diagnosis of Chronic MAV and Vestibular loss. I have tried the vitamins
because of being med sensitive and no improvement… Have trialled lots of meds with poor tolerance. Saw Dr. Hain 3 weeks
ago and he re confirmed condition but was amazed and called me a “Rocker” his comment was that in his practice he only sees
one “Rocker” per month… So I am a rare kind… He suggested Clonazepam and Betahistine - felt a bit better for a week but
now back to where I was… I also do have the effexor that he recommended if the Betahistine did not work but I am terrified
of starting it…Thanks for sharing this doctors info… I checked the website out this morning, filled out the questionaire and within
10 minutes I received a call from her. She was shocked as I scored 69% … She asked alot of questions and gave me time to answer,
very patient and caring lady… She thinks that I might have SSCD and gave me the name of a doctor at John Hopkins… I will try to
get an appointment with her but the wait is over a month at this time and I will definitely call the doc at John Hopkins…
I am exhausted from this and do want to get back to life… Most days I am positive and push very hard at trying to be active
but I get so disappointed that nothing seems to work…Thanks to everyone here that share their stories I have been silently
participating for quite some time now and finally decided to join… This forum helped me lots! Thanks Scott for creating a place
for us… Zannie B

Zannie B, please keep us posted on your progress. Let us know how the visit goes!

@AnneTimes2 I know this post is older but I just recently found Dr. Debby’s website and took the questionnaire. Scored very high, Dr. Debby called me the next day. I am closest to her colleague who practices in PA north of Lancaster. I am debating going, but have no vision insurance and the cost is very high. I have been a bit skeptical as I have not encountered a doctor that responds so quickly and talks to you (for 40 min!) on the phone for FREE then calls back to answer another question on a Saturday. I have had my symptoms for 5.5. years (I am now 29 years old) and the symptoms fit what’s on Dr. Debby’s website almost perfectly. They also fit a lot of the vestibular migraine symptoms everyone talks about on this website. The vestibular clinic at Hopkins diagnosed me with Vestibular Migraine, even though I am dizzy every day and don’t have episodes. I have a head tilt that only my current neurologist (not with Hopkins) noticed. My body leans and feels pulled to the left as I walk and my head tilts right. Just went to my ophthalmologist who didn’t see any evidence of my eyes being out of alignment, but I wasn’t aware of the palsy part.

Sorry for the rant, I do have 2 questions for you if you don’t mind. How is your daughter doing now? Still wearing the glasses? Or maybe fully cured without glasses? Also, did she ever have the feeling that she was being pulled to the ground, or pushed down as if an anvil were on her head? Or the feeling of swaying like she was on a boat? Those symptoms are the ones I’ve noticed that I have that are not on Dr. Debby’s website.

Thanks so much for your positive words about Dr. Debby and sharing your daughter’s story. It’s hard to know what to do when my lifelong ophthalmologist warns me of a scam and doesn’t think I should go.

@dizzyk Did you ever find out what is causing your symptoms?

Would you get good days and bad days with this because wouldnt you have continuous bad days until you wear the glasses?

I have continuous bad days right now. Not sure if that answers your question. My neurologist actually doesn’t think I have vestibular migraine anymore, she changed her diagnosis. I’ve never had “episodes,” and the past year I’ve been dizzy every single day.