Answers to additional questions
Below are answers to additional questions asked
about the epilepsy show.
Beth asks:
I had advanced Lyme disease in 1993, resulting
in MRI documented demylination of brain and cord.
I had a grand mal seizure 4/01. MRI and 24 hr
EEG were normal and no seizure source identified,
though I was on Detrol at the time. No treatment
at that time. I had another grand mal seizure
9/03 while on vioxx. 24 hour EEG normal, MRI at
Jefferson showed normal hippocampus and unchanged
white matter brain demylination from previous
studies. I am under the care of Dr. Stephen Lewis
at Abington Hosptal and saw Dr. Joyce Liporace
at Jefferson for consult. I have been told that
the Lyme disease and resultant CNS damage with
other meds being taken at the time of the 2 seizures
are the cause of the epilepsy I am diagnosed with.
I take Keppra 500 mg BID and tolerate it well.
Do you agree with this treatment and how long
do you keep patients on this medicine? Thank you. |
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Dr. Susan T. Herman responds:
Beth, seizures can rarely be seen in patients
with demyelinating disorders, such as multiple
sclerosis and Lyme disease. As you say, this is
usually secondary to brain injury from the demyelinating
disorder. When a patient has had two or more seizures,
there is a high risk of further seizures, and
antiepileptic medication is usually prescribed.
Keppra is a well tolerated newer antiepileptic
drug which is effective for partial-onset seizures.
If you are tolerating this well and are not having
seizures, this seems to be a reasonable therapy
for you. One of the most difficult problems is
deciding when to stop antiepileptic medications
in people who have rare seizures. We usually recommend
a seizure-free interval of at least two years
before we would taper and discontinue antiepileptic
medications. An EEG test prior to stopping medications
is sometimes helpful. If the EEG shows epileptiform
discharges, the risk of having another seizure
after stopping medications is higher, in the range
of 60 to 70%. Even if the EEG is normal, however,
the risk of recurrent seizures after medication
withdrawal is between 30 and 50%. Therefore, the
decision to stop medications must take into account
possible ramifications of having another seizure
(driving, risk of injury, etc). For further information,
call 1-800-789-PENN. |
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Maureen asks:
My son is 10 years old and has had seizures since
he was 2 1/2...Infantile Spasms and to date are
Myoclonic seizures. He seizes daily(5-10 clusters)
and has been on every med, has the VNS and has
been on the ketogenic diet. He currently is on
Triple Bromide. Still seizes daily. Is there long
term side effects from this drug and is there
anything left for him as far as meds?? Thank you
Zipcode: NJ |
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Dr. Susan T. Herman responds:
Maureen, I am sorry to hear about your son's difficult
to control epilepsy. Myoclonic seizures are often
the most difficult to treat. It sounds as if he
has been tried on most of the available seizure
medications, as well as the vagus nerve stimulator
and the ketogenic diet. Since I'm not sure exactly
which medications your son has taken, so I can't
give recommendations. One of the less commonly
used medications is a medication called Felbatol.
This has good effectiveness for myoclonic and
atonic (drop) seizures. It use is limited by the
potential for serious side effects, including
aplastic anemia, a potentially life-threatening
blood disorder, and liver failure. In patients
with very difficult to control seizures, however,
the risks of continued seizures often outweigh
the risks of side effects. This may be worth discussing
with your neurologist. Keppra, one of the newer
antiepileptic drugs, may also be very effective
for myoclonus. Its main side effect is behavioral
(irritability, mood swings, aggression).
Triple bromides can have long term side effects.
These usually occur when toxic doses are given
over long periods of time, since bromides can
accumulate in the body. Common symptoms of toxicity
are weakness, tiredness, loss of appetite, and
worsening of memory and cognitive function. There
is sometimes restlessness and headache. Close
monitoring of blood levels is therefore necessary
to prevent the chronic side effects. For further
information, call 1-800-789-PENN. |
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Ed asks:
I am epileptic. Is 6200mg a day considered heavy
dose to an average 190lb bodyweight? |
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Dr. Susan T. Herman responds:
It depends which medication you are taking. Some
of the seizure medications have small milligram
doses, in the range of 30 to 100 mg, while others
can go up to doses as high as thousands of milligrams
per day. Most of the medications are used in doses
less than 6200 mg per day for most patients. If
you aren't having any side effects and your seizures
are well-controlled, however, this could be an
appropriate dose for you, even if it's on the
high side of the dose range. |
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Paul asks:
I had a check cashiers manager job for 14 years
and had to give it up because I started freezing
up. While I was frozen up, I had a speech impediment
for a couple of minutes. I am taking Zonegran
100mg (3 times/morning and 3 times/evening). I
am also taking Lamictal 100 mg (1 tab, twice a
day). I was taking 150mg Lamictal but it was too
strong. Would you say these are good for seizures?
The show was very good and now I know more about
seizures. |
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Dr. Susan T. Herman responds:
Thanks for your feedback about the show. We are
glad that it helped you to learn more about seizures.
Both Zonegran and Lamictal are excellent new seizure
medications: they are very effective and have
few side effects. The real test, however, is whether
or not your seizures are fully controlled. If
you're not having any seizures, and you're not
having any side effects, then this is the right
medication combination for you. |
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Crystal asks:
I'm taking Lamictal for epilepsy since I have
been taking it, it is making me very tired and
I find it very hard to wake up early in the morning.
Is there something else I can take to help with
this side effect? |
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Dr. Susan T. Herman responds:
Some of the common side effects for antiepileptic
medications are sleepiness and difficulty with
concentration or memory. Lamictal is less likely
to cause these side effects than some of the other
seizure medications, but tiredness can be a problem
even with Lamictal. Some things that can be helpful
are to take a higher dose of the medication before
you go to bed, rather than in the morning, which
can reduce sleepiness during the day. If your
seizures are well-controlled, then the dose can
possibly be reduced. Finally, if this doesn't
help with the sleepiness, you may need a change
in your seizure medications. In general, I don't
like to treat side effects of one medication with
another medication, as the second medication may
cause side effects too. I encourage you to discuss
this with your neurologist. |
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Carolyn Larro asks:
My husband, Tony Larro, was operated on 7 years
ago and thanks to your staff has been seizure
free. I would like to express my appreciation
for how our lives have changed and not having
to live in fear 24 hours a day. In fact, his name
was given as a potential participant for this
session of Vital Signs (but Mr. Mendoza never
returned the call to set up an appointment. My
question though is this: in viewing Vital Signs,
we both noticed the PET Test was not mentioned
as part of the pre-testing along with the WADA
Test. When he was a patient, he was asked to undergo
an additional MRI with the hope that in the future
it would replace the PET Test because of the danger.
Has it been discontinued and replaced? |
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Dr. Susan T. Herman responds:
Thanks for your comments about the show. We had
such a good response to our requests for seizure
free patients to participate in the show that
we could not include them all. Dr. French recommended
Tony since he had done so well. In answer to your
question, the PET scan is still commonly done
for epilepsy surgery evaluations, but is not necessary
in all cases. We tend to do a PET scan only when
the MRI doesn't give us the necessary information.
With the improvements in MRI technology, most
patients don't need to be exposed to the additional
radiation from a PET scan. |
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Jocelyne asks:
First I just wanted to mention that i watched
the show, and it was great. It gave a lot
of information that is helpful to me. I'm
23 years old, and I have had epilepsy my
whole life. I did not notice it until I
was 16 years old, when I had a grand mal
seizure. The following year I had another
grand mal seizure. And ever since then I
have partial seizures and episodes. I have
been on many different types of medications.
I am currently taking carbatrol and keppra.
The medicine has helped but im still experiencing
siezures and episodes.I also space out,
get confused blackout etc... I was seeing
a nerologist in my area, and that didnt
work out . I have been going to Penn for
couple years now. Penn is great. I was watching
the show and it was facinating. I was wondering
how much is the total cost? and I was wondering
if I would qualify for having surgery for
epilepsy? and if I don't qualify for the
surgery I would like to know information
about tests I can get done {ex. mapping,
WADA.} that will help me . |
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Dr. Susan T. Herman responds:
I'm glad that the show helped you to learn more
about seizures and epilepsy. Certainly, if your
seizures are not fully controlled with medications,
you could be a candidate for epilepsy surgery.
If you're interested in surgery, you could start
the evaluation process to determine where your
seizures begin and what the risks and benefits
of the surgery would be. The total cost of epilepsy
surgery is variable, but ranges between 20 and
$50,000. All of the testing and the surgery itself
is usually covered by insurance. If you are seeing
someone in the epilepsy group at Penn, discuss
your interest in epilepsy surgery with them. If
not, you can request of referral to an epilepsy
specialist by calling 1-800-789-PENN. |
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Joanne asks:
I have had seizures for 25 years now. They have
been both aura and grand mal. The doctors say
there is scar tissue on the left temporal lobe.
I am on medications but still have these seizures.
My partial seizures occur it seems when I am tired,
stressed or before my periods. Could this scar
tissue be removed to end these seizures? Also
my 9 year old daughter has now had a grand mal
seizure. Is there a genetic connection? Thanks |
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Dr. Susan T. Herman responds:
It's difficult to give you a definite answer without
knowing all of the details of your history. However,
patients who have abnormalities on their MRIs
are often very good candidates for epilepsy surgery.
If your seizures continue despite medications,
it is reasonable to see if you are a candidate
for surgery. The evaluation is non-invasive, and
will help to determine your likelihood of being
seizure free after surgery as well as the potential
risks of surgery. You can then make an informed
decision about whether this treatment option is
for you. For more information, call 1-800-789-PENN.
In terms of genetic risks, there is an increased
risk of seizures in the immediate family members
of people with epilepsy. This is usually in the
range of 5-10%, compared to 1-2% in the general
population. Most family members of people with
epilepsy don't have seizures. We are currently
doing studies at Penn to determine which kinds
of epilepsy can be inherited, and you might want
to learn more about these studies as well. |
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April Esquilin asks:
Hello, I am a 27 year old female and I have complex
partial seizures which sometimes lead to grandmal
and also generalized tonic seizures I take 1000mg
of depakote and 600mg of dilation daily if i miss
one dose i will have a seizure I first started
having them at 12 then stop untill 14 then at
24 they came back harder than ever do you think
i would be able to get this surgery? what are
the requirements? I am on ssd to they take it? |
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Dr. Susan T. Herman responds:
You could be a candidate for epilepsy surgery,
since your seizures have not responded to high
doses of antiepileptic medications. Epilepsy surgery
is used only for patients whose seizures began
in one part of the brain. Complex partial seizures
and generalized tonic-clonic seizures are seizure
types that can often be helped by epilepsy surgery.
In order to determine if a person is a candidate
for epilepsy surgery, we perform several tests,
including an MRI of the brain, video-EEG monitoring,
and possibly several other tests as well. We can
then see where the seizures begin in the brain,
the likelihood of someone becoming seizure free,
and the risks of the surgery. For more information
or an appointment, call 1-800-789-PENN. Most types
of insurance, including Medicaid and Medicare,
will cover epilepsy surgery evaluations and the
surgery itself. |
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Interested asks:
Why can't we watch the show online or order a
tape yet like we could last month? When will these
services be avalable for the Epilepsy episode? |
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Response:
Interested, the show is now available online
at our Penn
Vital Signs website. |
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Ann asks:
Our son is 5 months old and has had seizures since
about 10 days old. He has been tried on 5 meds
with no success. Now we may try Sabril. Do you
have any info on this drug? He does have an area
of what appears to be cortical dysplasia in the
Lt temp lobe.
Zipcode: NJ |
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Dr. Susan T. Herman responds:
Sabril is a medication that is approved in Europe
for the treatment of seizures. It underwent trials
in the United States and was very effective, but
had a potentially serious side effect of decrease
in vision. Therefore, the medication is unlikely
to ever be approved in the United States. It is
still available in Europe and in Canada. This
medication is very effective for many kinds of
seizures, and particularly for seizures in infants
who have cortical dysplasia or tuberous sclerosis.
It is therefore still used by some epilepsy specialists,
and the American Epilepsy Society and Child Neurology
Society are working to get special approval for
use of the medication in children. Vision screening
is performed for anyone who is exposed to Sabril.
For more information, call 1-800-789-PENN. |
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Question:
Why when I had the 24 hour eeg did it show that
I had a seizure but when I went for the video
eeg it did not show nothing when you have the
video eeg will it show anything if you did not
have a seizure? |
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Dr. Susan T. Herman responds:
In order for us to get good information from video-EEG,
we need to record a person's typical seizure.
For this reason, we often decrease patients' medications
while they are in the epilepsy monitoring unit
to make it more likely that they will have a seizure.
If a seizure is not recorded, the EEG will not
give us very useful information. |
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Question:
How many medications are there now for treating
seizures? is there any way to speed up the process
in finding the right one, or is it just trial
and error? |
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Dr. Susan T. Herman responds:
There are now more than 14 medications available
for the treatment of seizures. Most patients will
respond fairly well to the first medication used,
but sometimes we need to go through several medication
trials in order to find the exact right dose and
medication. Unfortunately, there is no good way
to predict which medication will be best for a
particular patient, or which side effects may
occur. Trial and error is a frustrating process,
for both the patients and the neurologists. |
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