Hi Nancy,

Yes, my daughter saw the neurologist after this happened, and he orderd several tests: EEG, Holter Monitor, MRI. Everything came back normal except for an "incidental finding" of a 7 mm pineal cyst. The neurologist insists that this could not cause any of her symptoms. We did discover that she has a low heart rate (as low as 45 in the night), but the cardiologist we saw says that is normal too. I asked both doctors if the Topamax could be causing the low heart rate. The neurologist said no, and the cardiologist said, "Does Topamax cause a low heart rate?" Not exactly helpful.

I have brought up my concerns to the neurologist on several occasions that the Topamax may have caused all of these problems, but he insists that her dose is too low to cause her any problems. She was on 30 mg when she lost consciousness. The first time she passed out and fell down a flight of stairs. Nobody saw what happened and she does not remember it. The second time I witnessed her passing out. She first went extremely limp and quiet, then she hyperventilated, then had a small seizure. When she started to come out of it, she couldn't see anything. She was very pale and complained of being very hot. She was ok afterward, but she did have a headache.

The neurologist increased her Topamax to 90 mg after the second episode, and she hasn't passed out since. She has had one migraine, and three of four episodes of the migraine aura, but the headache never really developed.

I don't know what to do next. The neurologist doesn't want to wean her off Topamax, but he also doesn't appear to want to look for any further answers as to why this happened. He says that as long as the symptoms are controlled, then she is on the right medication. It just isn't sitting well with me. We just don't really have a clear diagnosis.

We have an appointment for a second opinion Cardiologist in January, but I'm trying to figure out who to take her to for a second opinion neurologist. Should we try to find a migraine specialist? Before starting the Topamax, she was having migraines with aura, numbness on the left side, confused speech, severe headache, sensitivity to light and sound.

Thank you for taking the time to respond!

Wow, sounds familiar to my 13 year old son. The only difference is that he passed out before ever given topomax. the neurologist started him on Topomax, 15 mg. and then to increase to 30mg. and so on. his pedatric cardiologist put him on 7.5 mg of midodrine daily which seemed to have stopped the fainting. However, he still feels dizzy and had severe daily migraines. I decided not to put him on Topomax, becasue of the side effects I had read about. Ifound a product called Migravent at migravent.com. There's a guy named max, who will talk to you for a long time, and has some interesting thoughts about migraines which you can further research. I jsut recently began giving my son a gluten free diet, since wheat -(gluten intolerance has a lot to do with inflammation and migraines). I know this is a long shot, but it doesn't hurt. Like Topomax, Migravent may not have instant relief, but the side effects are minimal, maybe some gas and/or burping. My son lost a lot of school because he was fainting a lot and then had really, really bad headache. I know as a parent it is so frustrating . I also am demanding that his hormones be checked as well as demanding an referral to an ENT to check his "inner ear". the doctors now seem to not want to go beyond. Oh, and also, during his MRI, the radiologist did find a small cyst on his pituitary gland, which like your child they said many people have , and should not cause the problems. My argument is that after the MRI, CAT scan, holter monitor, EEG(24 hrs.), blood and urine and electrolyte level tests, and they show normal, what the heck is causing this. I even want his serotonin levels checked. Keep on insisting! I even took him to a chiropractor, but there were no problems there either. I'll pray for your child. .

Please can someone help me!!!! My son has had a cripling headache now for 13 days, we have had mri, cat scan, and blood work including lyme disease test. The mri & cat scan showed a large pollip but the ent at the hospital said its not pressing on anything that would cause a headache for that long. the neuro wanted to do a spinal tap since the blood work came out normal and the ent was ok with the pollip. He decided to try topamax 25mg on my son that is 11yrs old. He was on it once a day before bed for four days and then twice a day to see if it helps, he still can not be in a loud or bright room, my son has always been an active kid and since this headache came through with vomiting and now vomiting has stopped but has diarehha and still pounding headache. They are also testing right now for rocky mountain spotted fever because he did get bit by a tick but lyme test twice came out ok. This so frustrating and very upsetting to me to watch my active son laying around in a dark room and not wanting to do nothing but sleep. Please if you have any advice or some test that i am missing, please feel free to let me know. As a mother i am feeling helpless.

Nancy,

Thank you so much for that info, and yes you are so right on the doctors.

so do i ask for a neurologists that just specialize in migraines or is there a name for that kind of specialist. My son is now on 16 days with a crippling headache and Topamax doesnt seem to be helping, he's been on it now for 10 days with a total of 50mg. I'm so frustrated that no one can get rid of this headache. The dr are calling it a abdominal migraine, because it starts with a stomach ache then comes vomiting then comes the headache. This has been on and off since Jan. 2010. This one has been the worst the headache just won't go away. Please let know if there a special name for that kind of doctor.

Thank You,