Any teenagers out there with MAV?

I’m here because 4 doctors think my 13-yr old daughter’s symptoms are most consistent with MAV, although one thinks there may be other factor(s) involved. She has had the 24/7 dizziness, fatigue, brainfog, feels like she’s going to fall down but never has, blurry vision, trouble making eyes focus, twitching muscles, trembling hands, neck stifness, etc., for 11 months. She feels she’s getting worse over time, and her school attendance and participation in other activities has deteriorated to almost nothing because she doesn’t feel well enough to cope with being in school. She’s keeping up to date with all her work tho’ as I go to the school each day to pick it up/turn it in. We’re thinking about switching her to home based instruction so she can simply stay home and do her work with 5 hrs a week of teacher instruction. I’m wondering if there is another teenager out there with similar symptoms who may be willing to talk with my daughter as I think it may help to actually talk with someone who knows exactly what you’re going through. I know it has helped me a lot to be able to come to this website and read that there are others who have the 24/7 dizziness and other symptoms she has. I don’t really want to let her on to this site, though, because I don’t want her to read about those who have suffered for years, and haven’t found a medication to help, etc. I don’t think that would be helpful to her at the moment. She has tried cyproheptadine without any effect, and has just started Topamax so we have to wait patiently…Even if you have a teenager who doesn’t want to talk to my daughter, I’d like to hear about your child’s situation, symptoms, what’s helped, etc. Thanks!

I know there was a lady on here alled “mamabear” who had a son with mav. He got better with meds. You might search for her threads or even try to PM her.
I think the adolescent years are pretty common for migraine, especially for girls. Is there any family history? Poor kid…being a teen is tough enough without this mess. I hope she gets well soon.

I was diagnosed with this when I was 11 years old and I am now 31. I was diagnosed with it yes, but they didn’t really know too much about it. The Dr. told me to get into balancing activies lol so I became a gymnast, dancer and figure skater! I would get my “dizzy attacks” randomly, and then I slowly started to identify when they would happen- lack of sleep, eating, stress and 2 days before periods. The attacks lasted less then an hour and would go away.

Now, I also suffer from mdds, which is a variant of mav and i am now rocky 24/7, fatigue, everything you mentioned. i am taking 75mg of topamax and i have never had a vertigo attack since, just dealing with the daily rockiness.

i am so sorry she is suffering, but there are many of us out there. until 2 years ago, i went almost 20 years thinking i was the only one on this earth that had this. i am so thankful for this board!

start to pay attention to her triggers, pm me if you have any questions!

I’m so sorry to hear this.

I really hope your daughter pulls through this. Its just crazy what life can suddenly throw at you. I’m probably one of the luckier ones here as I only really have one symptom of shifting vision which I’ve learned to deal with quite well, by keeping my anxiety down. From experience I think the best thing to do would be ensure she stays as calm and relaxed as possible as anxiety/depression on top of it makes it SO much worse.