Women and Epilepsy: Pregnancy and the Ketogenic Diet

Women and Epilepsy Series: Becky’s Story

Becky shares her experience with epilepsy, pregnancy and the ketogenic diet.

I had “dizzy spells”  for as long as I can remember but didn’t know what they were.  In my early twenties I had one, but this time it involved a large lapse of time that I could not account for.  My family prompted me to see a neurologist who diagnosed me with epilepsy (petit mal).  I opted not to go on medication at that time.  I was newly married and wanted to have children and my doctor was understanding.  I continued to have these small seizures (about one every couple of months) and then I became pregnant five years after I married.

Seizure Control During Pregnancy

My OB-Gyn told me “the seizures could stay the same, they could get worse, or they could go away”.  Well they did go away!  The whole time I was pregnant and nursing my first son I was seizure free.  I then immediately became pregnant with my second and again remained seizure free during the entire pregnancy and 11 months of nursing.

DISCLAIMER: This may not be the case for everyone!

Search for Seizure Control

When my second son was about 3 years old I started having petit mal seizures again (and more frequently than previously), until one day when he was about four, I had my first grand mal.  My doctor put me on an anti-seizure medication telling me “we don’t really know if this was a grand mal because it wasn’t witnessed”.

Well I have to tell you, because of that simple statement from my doctor, I was lax on taking my medication.

At some point I had another grand mal and it was pretty serious. I suffered a severe concussion that to this day affects my sense of smell, which in turn affects my ability to taste. I also suffered pretty severe vertigo.  As a result, I learned my lesson and began taking my anti-seizure medication daily for twelve years relatively side-effect free.  Or so I thought.

Medication Side Effects (and disclosure)

Being on these kinds of anti-seizure medications, many of us have to have regular blood tests to check different things from drug levels to liver function, etc.  Well, during one of these routine blood tests my doctor found that my white blood counts were very low.  Over the course of a year I saw an oncologist and it was determined that the anti-seizure medications damaged my white blood cells.

As the doctor put it – this is a common side effect of my anti-seizure medication.

Who knew?!  I had never heard this before. However in my subsequent investigation of this medication I found it was true and I would never be able to take that anti-seizure medication again.

Finding a New Medication

On to the worst couple of years of my life.  The trials and errors of trying to find another medication to take the place of my first medication.  Over the course of about a year and a half I tried at least 4 different medications.  All with awful side effects including extreme lethargy (to the point where I couldn’t brush my teeth!), shortness of breath, little to no appetite and to top it off they weren’t controlling my seizures.

Then at some point I remember my sister telling me years before that a diet has been used to control epilepsy in children.

Time for other options

I began my investigation into this diet and discovered that adults too have been able to control seizures as well.  I contacted Dr. Eric Kossoff at John’s Hopkins Hospital and he told me to get the book that he co-wrote, “Ketogenic Diets, Treatments for Epilepsy and Other Disorders”.  First off I have to say that being able to pick up the phone and speak to this doctor directly, I mean he’s written books and is an authority, just astounded me.  To top it off after I got off the phone with him his nurse called me back to make sure that I got the SEVENTH EDITION of the book because it had the most current information of the Modified Atkins Diet.

I saw my neurologist to let him know this was the course I was taking.  He gave me a sheet of paper that essentially had a Paleo diet layout on it.  He admitted that he didn’t know much about the diet and said he would stand behind me in my endeavors but that he didn’t want to see me coming in looking all gaunt and thin.  I weighed 134 when I started and lost about 10 pounds to 124 and have maintained this weight throughout.

Ketogenic Diet

I began the Ketogenic Diet in September, and was totally weaned off of medication by October of the same year.  I’ve just celebrated my second seizure free year on the diet and couldn’t be happier!  To think that I can control my epilepsy by diet alone is incredible.

I have to say, in the beginning it wasn’t easy but with the internet and lots of people out there eating this way for one reason or another, not just epilepsy, makes it so much easier to follow.  Even my husband is hopping on the bandwagon. I see my general physician twice yearly for blood work because I want to keep a check on this because of such a high fat diet and I’m happy to report that my cholesterol levels are better than ever!

I understand too that there are those out there that suffer daily and with many more multiple seizures than I ever had. I understand this may not work for everyone. But it has helped me. Thanks for this opportunity to tell my story.