Wow! Thank you so much to everyone who responded. It's been so great to have a community with people who know what's going on. I love that I am overwhelmed with information on ways that I can seek help. I am going to sort through and tackle some of this stuff one at a time.

Donna,

Thank you for the suggestion of physical therapy. I do have so much tightness in my neck and shoulders all the time, and am going to look into being able to set something up. I definitely want to work on my balance and coordination as well, so great suggestion! Did it help relieve some of your headaches and symptoms?


Mitch,

Thank you for your reply. Amazing that I could come online searching for a community, and there would be someone literally in my community! I'm very sorry to hear that your daughter has to go through this at such a young age. That's really tough, but I'm glad she's got her Daddy fighting for her and giving her the support and help she needs- kudos to you!

I'm glad to have the information about the trials at UB. I called over there and they said they weren't even running it anymore for the public. I'm happy to learn from your experience and not waste the time and money over it.

I see Dr. Kang at DENT. He's the neuro that I've been seeing since I hit my head. He's very quick and to the point, but he also seems very smart and has a whole arsenal of meds to try. Every time I see him, he's trying something new. He says straight out that the condition is self-limiting and self-healing and that he can't cure it, but he wants to treat as many symptoms as he can. He also sees me every 2-3 weeks to track my symptoms and try new things. I really hope that he can give your daughter some relief from some of her symptoms.

I feel very blessed that I am done with school, I can't imagine what she is going through. Again, I'm glad to see that she has an advocate in you.


MHR,

Wow, thank you for all of that advice! I am going to research all of this information and dig through it. I don't see my neuro again for 3 weeks, as I just saw him before I found this community. Have you tried any of these therapies or know anyone who has? I'd be really interested to hear about it. You are right about the brain being unconventional. It's so weird to go through something that doesn't have a cut and dry solution. Good luck to you and thank you again for your post.