Dear Group-
I was misunderstood, as Tammy said. My daughter already takes topamax for
headaches, as well as Lamictal for seizures. Sorry if my post was at all
unclear!
I was proposing that it might help others with a post seizure headache, and
what I failed to say, was that I was suggesting asking one's doctor about
using it for such. I was not suggesting, nor would I, add or subtract a
seizure medication without an MD supervising it.
Naomi's migraines began well before puberty so I don't think they were
initially hormonally mediated. Her seizures are worse right now and I am
wondering at this point if hormones are playing a part. Luckily her
headaches have not returned with the onset of menses.
I did a lot of reading and speaking to folks on topamax before giving it to
her. We have been incredibly lucky to not have any noticeable negative
side effects and only the desired one- no headaches! Naomi weighs 85
pounds and has struggled to gain weight her entire life, but she has had no
appetite suppression and she had no cognitive ill effects either. Naomi is
drinking as much water as I can get her to drink to help with the
possiblity of kidney stones.
The intro I should have written about us before posting:
Naomi, who is now 15, was born at 28 weeks after her identical twin died in
utero from twin to twin transfusion syndrome. She spent 9 weeks in the
NICU with the usual preemie issues, but left without any obvious
neurological issues. She has had a long list of diagnoses that have come
and gone over the years. She has had a variety of developmental issues,
was slow to talk, various learning disabilities, etc. Right now the
significant ones continue to be asthma, ADHD, anxiety disorder, migraines
and epilepsy. Despite it all she is an A and B student going into her
sophomore year of HS with a minimal amount of support through a 504 plan.
About 2.5 years ago Naomi's migraines worsened to 2 day affairs where she
would need to lie in a dark room, intense vomiting and pain. Migraine meds
were not helping. She was having a lot of symptoms we took to be auras-
photophobia, various vision disturbances, numb face and throat, etc. Her
neurologist ordered an MRI, which was normal and did a 20 minute EEG which
showed almost constant spiking despite no obvious seizure activity at that
moment. That's when we started on the topamax and she was diagnosed with
either complex migraines or simple partial seizures.
The topamax, at a low dose, took care of the headaches, but Naomi was still
having the visual disturbances and periods of feeling like everything
around her was happening at warp speed. This was better controlled by
more topamax, moving her up to levels used for seizure control.
We went for another opinion to a new neurologist who ordered a 3 day at
home EEG, followed by a 3 day video EEG in the hospital. Both showed
frequent spiking while both awake and asleep. The video EEG showed subtle,
but frequent, absence seizures of about 5 seconds in length. We tried
ethosuximide at first, but even though it shouldn't have, it seemed to
increase her headache threshold and increase the simple partial type
symptoms. So we stopped that and she has been on lamictal since.
We have been increasing lamictal this summer, 5 mg per week, as her latest
3 day EEG still shows lots of activity and we are seeing an increase in the
absence and they now are more obvious as one side of her face twitches and
the opposite eye has nystagmus and the lid droops a bit during a seizure.
We go back to the neuro in a couple of weeks and need to figure out whether
she just needs more lamictal, a third med, or ??? I also want to press the
neuro on classifying her seizures- she said it would be very rare to be
having both simple partials (one side of the brain only) and absence (both
sides) in the same person. I don't know if proper classification would
help with choosing meds for better control?
Looking forward to learning more from all of you!
Pam
--
Pam Schachter
[Non-text portions of this message have been removed]
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