I
have procrastinated in writing about this particular topic. Epilepsy in women—specifically, catamenial seizures. It was one of the topics of interest at the
“Talk to the Docs” seminar which I reported on earlier. However, I did not write anything more
in-depth afterwards.
It
had been on my mind since the end of February.
March is Women’s History Month and I knew I had to write something about
women and epilepsy before the month slipped away.
Catamenial
seizures are seizures that occur around the time of a woman’s menstrual
cycle. About 31-60% of women with
epilepsy have catamenial seizures.
Unfortunately, I am one of those.
It
is based on hormonal imbalances.
Estrogen excites seizure activity and progesterone inhibits it. Therefore, when estrogen levels spike at the
beginning of the period, seizures will increase. Also, during the midpoint at ovulation and at
the end when the body is realigning itself, seizures will come more frequently. I experience all three stages, and it is one
of the worst things I have to deal with every month.
There
are treatments to combat catamenial seizures.
One method is, around the time of your period, to increase the dosage of
the medication you are already taking.
This can be tricky because you have to keep an accurate record of your
cycle to predict when the next one will be.
That may not always work because some irregularity may occur.
Next,
you have to determine which medication(s) to increase and by how much to get
the maximum effect. You also need to
take into consideration any side effects that may result, and if they will
cause more problems than they will solve.
There
are medications specifically targeted for catamenial seizures, including
clobazam, Diamox, and clonazepam. Acetazolamide (Diamox) is often used during the time of the
menstrual cycle. It cannot be used
regularly like most anticonvulsants because patients will develop a tolerance
to it and the medication will become less effective. It is unknown how effective these medications
are in general, but they are what we have now, and more research is continually
being done. In fact, there is a clobazam study going on at the University of California, Irvine Epilepsy Center,
conducted by Dr. Mona Sazgar.
Aside
from medications, there are contraceptives and hormonal therapies. I have tried birth control pills, both the
one-month and three-month versions. The
one-month version did a very good job at regulating my cycles, but I still had
them. Therefore, I still had seizures
every month. I had a bad reaction to the
three-month version; I bled erratically, causing more intense seizures, and had
to stop right away.
Since
then, I had been sure of what to do. I
had heard good things about the Depo-provera shot, an injection that stops
menstruation for three months. At the
end of February, I got it because I felt I had nothing to lose. I hope it will help me going forward. So far, I have not had any bad side effects,
although March was like a “phantom” month.
During the time I would have had my menstrual cycle, I had an increase
in seizures.
There
is much more research to be done on catamenial epilepsy. Until then, we will be navigating our way
through this maze. The important thing
is to have a good epileptologist and OB/GYN to work with you.
http://www.epilepsy.com/information/women-and-epilepsy
https://www.epilepsy.org.au/about-epilepsy/living-with-epilepsy/women-issues
https://www.epilepsy.org.au/about-epilepsy/living-with-epilepsy/women-issues
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