Thanks so much for your quick input. I'll try to give you a shortened summary of my daughter's history with this: On March 12th she woke up unable to go to school as she felt very nauseaous, had very sore throat, was achy, lightheaded, lethargic. She was off school for 4 days. Strep test on day 2 was negative. Took her to the doctor's an additional 2 times in those first 2 weeks because she was dizzy, and then she told us that when she was looking across a room, everything looked tilted - and this is how she it still seeing everything. She went to track practice (wanted to try out for first time) and said her legs wouldn't do what she told them, her knees kept giving way (altho' they'd catch quickly again so she didnt' fall), and she was dizzier because she was trying to run. Dr. said hadn't recovered from being sick yet, and take it more slowly. At the end of the 2 weeks, Dr. basically said if I stopped asking her how she was feeling all the time, it may go away! Needless to say, we went to a different family dr.! She's had blood test, brain MRI, seen cardio Dr., ENT, neuro, all of which was normal. Last May, local neuro. dr. of Children's Hospital thought it was migraines, gave us supplements and had her try Imitrex. When the Imitrex was ineffective, they said it wasn't migraines. We then went to Cleveland Clinic and started with pediatric ENT who did a CT scan of temporal bones. It showed that she has super thin bone on her right side and super thin on her left with maybe a small hole (dehiscence) so this led us to Superior Canal Dehiscence Syndrome (SCDS) which could produce the symtoms she has. (Altho' she only has about one-half of the symptoms, there are other sufferers out there who also only have the balance related symptoms.) However, the dizziness dr. at Cleveland Clinic referred us to their Headache Clinic where we're seeing a pediatric neurologist because about half the people who have SCDS don't get symptoms. The neurologist started her on cyproheptadine (periactin) last August and it took til December to get up to full dose. It didn't have any affect. I wanted to investigate the Superior Canal Dehiscence Syndrome (SDCS) further, found a support group website where I learned a lot and before Christmas we went to see 2 experts in the country at Johns Hopkins, Baltimore and Mass. Eye and Ear in Boston. They each redid a test Cleveland Clinic had done, but got normal results which to them says that my daughter's symptoms are not coming from the SDCS. They each felt that the symptoms were migraineous. The Johns Hopkins dr. has written a good paper "Migraine - More Than a Headache", and as David Buccholtz hails from Johns Hopkins they recommend following his diet. The Cleveland Clinic dr. had us try a diet last summer for 6 weeks and it didn't make any difference, but it wasn't as expansive as David Buchholtz'. So since just before Christmas my daughter has been on the migraine diet. Along with the diet, the Johns Hopkins dr. recommended the supplements so she is now taking B2, magnesium (altho' I'm starting it gradually as we did it for a month last May and she felt sick to her stomach), COQ10. When we saw the Cleveland Clinic headache dr. again a couple of weeks ago he took her off the cyproheptadine and she has just started Topamax. Last summer, the dizziness dr. had her do Vestibular Rehabilitation Therapy but she was discharged after 6 sessions because her dizziness was already high enough that the therapist didn't want to push it higher still with the exercises and my daughter said she felt it was getting worse during that time.
The Johns Hopkins dr. wants her to retake the test for the SCDS a year from now to be sure it is still normal. Her symptoms are continuous dizziness (no break from it) mainly rocking like a boat, she feels like she's going to fall down altho' never has, she has fatigue no matter how many hours she sleeps, she gets trembling hands and other muscles twitching intermittently, she can't always find the right word she wants to say and forgets things she feels she should be able to remember, she feels unwell all the time, seems to have problems with her throat feeling like she's getting sick and says she can't swallow properly sometimes, she gets dizzier with physical exercise so doesn't do much walking, has blurry vision upon waking (tho' tells me this predates her symptoms) - usually clears in a couple of minutes, sometimes at other times has to work to get her eyes to focus. Our school is very understanding and did a 504 plan for her and she is keeping up with all the work but doesn't go to school much now. She is struggling with the being out of the loop with friends at school. She does things with friends outside school (if it's something she can do). She says it's too hard when you feel sick, feel like you're going to fall over, are so tired you want to cry and it's hard to think, - and then she's supposed to have conversations with people!
I've read on this website about the 2 people who have recently been diagnosed with Lyme Disease (after being told for some time they had MAV) so that made me read more about that. And now I feel I would like to be able to cross that off the list. We live in Ohio, and both my children and husband have found ticks on them at different times in the past. We were not aware of my daughter being bitten right before her symptoms started or of the typical rash, but having read more, it seems as if it could have been many weeks or months before symptoms begin. And she did seem to be sick, have some kind of assumed virus when this all started. Having said that, I should add that the day before her symptoms started, she was in a parade with the marching band where it was unusually warm with bright sunshine, and they had layers on under full uniform, couldn't eat lunch, probably got dehydrated and were on their feet for about 4 hours. Knowing I have migraines, the Johns Hopkins dr. thought the parade conditions were typical migraine triggers.
The only think I'll say about the Cleveland Clinic headache dr. we're seeing is that he is a pediatric neurologist. If I search on their website for a dr. specializing in migraine associated dizziness, his name doesn't come up. Three other dr.s come up but they all state they treat adults only. I'm wondering if I should call and see if they would see my daughter or if they would work with the pediatric dr., who actually told us that he wasn't convinced that chronic symptoms like this were migraine related. He is going to be talking with the dr. we saw at Johns Hopkins and Mass. Eye and Ear, so that is good. Right now I'm pleased to be trying the Topamax - I did see somewhere on this site that it is one of the med.s listed for use with vestibular migraines.
Well, that's pretty long but thanks for listening! As you can imagine, it's hard having to watch my daughter go thru' this, make her go to school when she really feels like she can't handle it, and hard to find the right words when after 10 months she's saying that she can't take any more of it, and doesn't like being her anymore. Oh, we do have her seeing a counselor regularly so we can keep track of how she's doing emotionally/how she's thinking, etc....I can imagine how she's feeling and what she tells me makes perfect sense...