10 year old with undiagnosed dizzy spells

[Miss1995]

My daughter is 10 years old and has been suffering from "dizzy spells" since she was 2.  She would collapse to the ground and squeeze her eyes closed.  She would be like that saying her eyes were switching for several minutes up to an hour.  I took her to her doctor who performed a basic neuro eval and found her to be fine.  It began happening sporadically for the next year when we were referred to a Children's Hospital Neurologist.  We have done multiple MRI's, CT's, EKG's, EEG's, video EEG's (week long), lab work, you name it and everything comes back completely normal.  Her neurologist has said she has partial complex seizures, she's never lost consciousness. She is currently taking anti-seizure medication (keppra) on a massive dose for a child her size and still continues having the spells.  We have tried everything and don't feel like we are getting anywhere.  I have gotten 2nd and 3rd opinions from other pediatric neurologists, repeated testing, done genetic testing.  We have found that illness or stress seems to bring them on.  They come in cycles about every couple of months.  I feel like I have done everything I know to do but I still have no answers of how to help her.  Her neurologist seems to have the attitude of "just deal with it".  I don't want to put her through more tests, medication, doctors, but at the same time I don't want to stop looking for an answer and make her have to "deal with it" for the rest of her life.  They aren't going away and are not entirely controlled with medication.  I am concerned how this will affect her future.  As she has gotten older we've gotten more information from her.  Now she tells us she sees double and everything around her spins.  Help, I don't know what to do!!!!

[Miss1995]

Those are great ideas.  We did do a King of Hearts Monitor for a full month.  The dizzy spells happen in a cycle about every 6-8 weeks.  She will be fine for several weeks then she'll have 10-12 spells over a 3-4 day period then she is fine again.  We had the monitor on while she was having her series of dizzy spells and they did not find anything.  However we have not had any of the other tests you mentioned done.  I think I will check further into those.  We had found an irregular heart rhythmn which is why we did the King of Hearts monitor  but since it came back normal we did not pursue the heart any further.  Thanks so much for those suggestions.

[kw47781]

i don't know exactly what is happening, but i would emphasize to not ignore potential cardiac issues causing your daughters symptoms.  has she had her heart structure looked at, for instance an Echocardiogram or Nuclear Heart Scan?

has she had a tilt table test?  it would check and see how her heart and brain are communicating while she is lying flat and standing, specifically checking for changes in blood pressure and heart rate.

what about a King of Hearts moniter (two week or longer heart monitor worn at home which can send transmissions over the phone to a monitor center, checking for cardiac issues)?  or even a 48hr Holter Monitor?

i wish you all the best.

[Miss1995]

Thank you so much for your thoughts.  I've been researching the lyme disease and trying to find the episode mentioned on Mystery Diagnosis.  As for the occipital nerve, we've already had that checked out along with several other eye diseases.  Thanks for your suggestions.

[chayasarah]

I am 55 and have the same problem.  Does your daughter get dizzy when she looks up?  Has she been checked for pinched occipital nerves?    I faint, and never lose conscienceness.  I'm aware, but can't stop myself.  It takes a few minutes to get my bearings.  I'm not one to give advice because I'm not a DR., but I'm going through this myself right now, and my DR. believes that there is a relationship between a pinched or partially pinched occipital nerve and dizziness and we're investigating that right now.  Good luck.

[ella2]

Have you seen the tv show Mystery diagnosis?  Hav you check her for lime disease?  It is quiet possible she has this. You reall shoud look at the programs website and look at their archives.  Perhaps you should consider gong to see a doctor that was in one of the epsodes with a lady that had similar symptoms as your baby.  It was lyme. Even though all the previous test done on the patient by other doc showed no lyme.  I hope this helps.