Thursday, March 12, 2015

Talk to the Docs Report

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

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