Last
week (3/5/15), I attended the “Talk to the Docs” seminar hosted by the
University of California, Irvine (UCI) Epilepsy Center. It was an informative evening for adults with
epilepsy. It began with a buffet dinner
and time for socializing among peers, a good opportunity to connect with other
adults with epilepsy.
Then,
the expert epileptologists and neurosurgeon of UCI addressed the following
issues in five fifteen-minute presentations: (1) women’s issues, (2) cognition
and memory, (3) diet and fitness, (4) surgery, and (5) Sudden Unexplained Death
in Epilepsy (SUDEP).
The
presentations I really enjoyed were on Women and Epilepsy and Sudden
Unexplained Death in Epilepsy (SUDEP).
Women
and Epilepsy:
Dr.
Mona Sazgar addressed the issue of women and epilepsy.
When
it comes to women and epilepsy, there are certain concerns. During the menstrual cycle, about 31-60% of
women have more seizures around this time.
This is known as catamenial epilepsy.
Most women with catamenial epilepsy have an increase in seizures a few
days before their cycle begins, in the middle of their cycle during ovulation,
and at the end of the cycle. This is related to hormone imbalance, especially the
increase in estrogen, which stimulates seizures.
There
are some treatments options to counteract catamenial seizures:
·
Increasing
the dose of your regular medications around the time of your cycle
·
Possible
Medications: Diamox, Clobazam, clonazepam
·
Birth
control pills and contraception
·
Depo-provera
shot
When
it comes to epilepsy and pregnancy, it is extremely important to plan
ahead. For the safety of the baby’s
health as well as the mother’s. It is imperative that the mother take folic
acid before she gets pregnant. It will
prevent spina bifida in the unborn fetus.
In the average pregnancy, the chance for a birth malformation is about
2-3%; in women with epilepsy, the chance is 4-6%. It is a slight increase, but as long as
precautions are taken, women with epilepsy can have normal, healthy babies.
Another
concern for women with epilepsy is the chance of having seizures during
pregnancy. In 20-35% of women, their
seizures go down, in 55% there is no change, and in 10% seizures go up. Along with
seizures during pregnancy, it follows that adjusting medications during
pregnancy is a very critical issue.
Different medications can have more or less harmful effects on the
baby. Of course, it is best to limit the
amount of medication you’re taking, but you also need to weigh that against
having seizures.
It’s
a complicated issue to say the least.
That is why you need to plan ahead and work with your medical team.
Sudden
Unexplained Death in Epilepsy (SUDEP):
Dr.
Neil Sen-Gupta spoke about Sudden Unexplained Death in Epilepsy (SUDEP).
SUDEP
is still not very well understood. The
definition is when a person with epilepsy dies from an unknown cause, not
related to accidents, such as falls or drownings. About .09-2.3/1000 people die from SUDEP each
year.
Recent
research has found that those most at risk for SUDEP are people with
generalized tonic-clonic (grand mal) seizures.
The reason for this is that there are often multiple seizures going
on. They result in cardiorespiratory
failure. This persistent blow to the
system causes a final collapse. One
important fact to be aware of is that SUDEP can occur randomly, at any time, not necessarily when a seizure is going on.
Of
course, the method of prevention against SUDEP is to get seizure control. Easy to say, more difficult to do.
After
the presentations, the host of the program, the head of the UCI Epilepsy Center
(and my doctor), announced the Annual Epilepsy Walk which will raise funds for
the Epilepsy Support Network of Orange County.
(I will be writing more about this soon.
I have my own team.) The UCI
Epilepsy Center has started a team and has some t-shirts which they gave away
by asking some epilepsy quiz questions. People
who answered them correctly received t-shirts.
That was a fun way of getting the audience involved.
Then,
it was time for one-on-one consultations with the doctors. They were stationed at tables around the
room. People could sit down and ask
specific question to individual doctors.
For example, I had a question relating to women’s health and epilepsy so
I spoke with the women’s health expert there.
The
one thing about the seminar that was a little dissatisfying was that there was
not enough time to speak with all the doctors one-on-one. There were too many people waiting in line. The consultations were good when you were
lucky to have one as I did. However, I
felt a loss for not being able to visit with the other doctors.
There
lies the problem—how do you provide the best quality programming that will satisfy
everyone? Would it be better to limit
participants so they could have more time with the doctors? But that would not allow a good portion of
the population to have access to the information that was shared.
Do
you get rid of the presentations to have more individualized time? If you were to do that, you would miss out on
new developments in epilepsy. So
unfortunately, even though this is the outcome, I think it is the best we can
do for now.
Women
and Epilepsy
Hormones
and Epilepsy (Catamenial Epilepsy)
Pregnancy
and Epilepsy
SUDEP
Epilepsy
Support Network of Orange County homepage
No comments:
Post a Comment