Hello everyone.

I am new to this site...looking for answers and support.

My 14-year-old daughter was diagnosed at the age of 5 with Type 1 diabetes. When she hit puberty, she started having migraines, once a month at first. Over the last several months, the migraines have increased in frequency to 5 in the last month. She had an episode in the night where she came into my room crying with a headache, and she couldn't put a sentence together. Her doctor thought she had a low blood sugar in the night but referred us to a neurologist.

The neurologist listened to her symptoms and said it was classic migraine and started her on Topamax. 15 mg at night the first week, then 15 morning and 15 at night the second week. We were on the third day of that dosage when she had what may have been a seizure and she fell down the stairs. Nobody witnessed what happened, but my daughter says she woke up feeling wierd and went into the bathroom. She was heading back to her room, and the next thing she remembers is being at the bottom of the stairs. She went by ambulance to the ER. CT scan, neck x-ray, chest x-ray, and blood work were all normal. She had a fever so the ER doctor said she must have fainted due to a virus.

Her pediatrician/endocrinologist saw her the next day and ordered an EEG because it sounded to him like it may have seizure.

Five days later we witnessed her passing out,losing consciousness, and then having what appeared to be a seizure. She went in the bathroom and when she was coming out she was dizzy and confused. We sat her in a chair, and she became unresponsive. Her head went down, breathing became labored, body shook (but not extremely violently), arms and hands curled up, legs went rigid, hyperventilated. My husband says it lasted less than a minute, but it felt like an hour.

Neurologist increased her Topamax to 90 mg and she has not had any migraines, blackouts, or seizures since. Her 20 minute EEG was normal. Her MRI was normal expect for an "incidental finding" of a 7 mm pineal cyst. She had a Holter monitor, EKG, echocardiogram, and stress test. The cardiologist who I really didn't care for said these were all normal, but the neurologist is referring us for a second opinion because her heart rate is very low.

At one appointment the neurologist said it was not seizures, and at the next appointment he said he believes it may be nocturnal seizure. I am concerned that the Topamax could be the cause of the seizures but the doctors both say no, that it prevents seizures. She never passed out before she was on Topamax.

She is now on 75 mg (30 am and 45 pm). She has lost about 6 pounds, but that seems to be leveling off. She is extremely tired, and that has been difficult for her.

Any similar experiences, thoughts, etc.? We are contemplating going for a second opinion from another neurologist because we just feel like his diagnosis is vague. I feel that it is important to have the correct diagnosis. Is it migraines, is it seizures, or is she having both? The neurologist doesn't think that the diagnosis is as important as controlling the symptoms.