Kathy MacDonald

My 13 yr. old daughter and I both have migraines and she has dysautonomia. Her migraines are all pretty classic with pain on one side, light and sound sensitivity, nausea, numbness and tingling, etc. Mine always begin with a pinpoint of jagged glittering "lights" in one eye. The "pinpoint" gets bigger and bigger until the vision in the whole eye is effected, then suddenly my vision clears. Then either the head ache begins or nothing at all happens. The neurologist says that both are migraines whether or not the head ache is present. If I get the headache, I too am sensitive to light and sound, have nausea, etc. My daughter's neurologist says that there is a very high correlation between dysautonomia an migraines. Kathy

Hello, I posted yesterday about my 13 yr. old daughter, Billie, who was diagnosed with Dysautonomia 2 weeks ago. I have lots of questions and don't know where else to go with them. Her next neuro appt. isn't til next month. Are there times when symptoms flare up and then are better for a period of time? For there past several months she has had a significant increase in migraines, and anxiety. She has missed 14 days of school this fall, mostly due to migraines. Last week she was out 4 days with a severe migraine and finally landed in the hops. on IV Morphine for the pain. She is on a new med, Topamax, to try to get the migraines under better control but it's not at therapeutic levels yet as it must be slowly increased. She has had an increase in dizziness and lightheadedness over the past week. (has had episodes in the past where it gets bad for a while and then gets better.) Today she was very tired when she woke up after 10 hrs. of sleep. I took her to school. At 10AM the school called to say that she was very dizzy. I asked them to have her lie down for a few mins. and have some fluid and then try to go back to class. They called back at 11 to say that she had been sound asleep for an hr. and was still too dizzy to return to class. I left work to go get her and she was pale as a ghost and couldn't walk without holding on to me. She fell asleep again as soon as we got in the car and slept all the way home. She walked into the house and fell asleep on the couch. I woke her up for lunch and she went right back to sleep. She can't seem to stay awake. I don't know weather to think this is side effects of the Topomax or symptoms of Dysautonomia. We are very concerned about how much school she is missing and, if she continues to miss so much, she could end up repeating the 8th grade. We are also concerened about the emotional toll taken by being sick and in pain so much. Has anyone written a "Dysautonomia for Dummies" book java script:emoticon('') to tell us how to live with this? In all seriousness, I am very interested in any books or articles that anyone might be aware of or any advice that you might have. Kathy

Thanks Amy. I went to grad school at BU so I'm familiar with that program. We are fortunate that Billie has a wonderful therapist at Children's Hosp. who specializes in both chronic pain and anxiety disorders. I don't know what we wold do without her! Kathy

I joined this forum because my 13 yr. old daughter has just been diagnosed with Dysautonomia. For the past 4 years we have aasked how one child can have so many medical problems and have them not all be related. We just took her to see a new neurologist and now we know, in fact, most of her medical issues are related. She has these and more... Migraines GERD Constipation IBS Dizziness and fainting Generalized anxiety disorder OCD Hypersensitivity to pain Lack of sensitivity to cold Icy cold but sweaty hands and feet "Loose joints" Currently her migraines and anxiety are the biggest problems. I didn't realize until after the neuro appt. that there is more than one type of Dysautonomia so I didn't ask which type she has. Can anyone here make a guess? We live in Boston and Billie is followed by multiple docs at Children's Hospital. We want to learn as much as we can so that we can help Billie. I look forward to learning from all of you. Kathy