To Love a Rose: An Ethiopian Adoption Journal

Wednesday, December 29, 2010

Christmas and Catamenial Epilepsy

I have been searching for the right words for days...none have come to me, but I want to get these experiences and revelations down in type before their intensity and truth slips away from me.  Sometimes you are a part of something, and it is only for you; but I believe that what I have been through may be helpful to those wondering if God truly answers prayers or if he is actually an active, kinetic force in people's lives.  So, instead of keeping this in, I'm going to share it here.

Wednesday, December 22nd, 2010...three days before Christmas, and I found myself in the ER with my youngest sister (let's call her W) again.  Not to be crass, but this is nothing new for W.  She has been suffering with seizures since June of 2009 when they came on and came on strong  and seemingly out of nowhere.

Our band, The Beautifully Broken had just completed it's first album on June 1st; and W had her first bad seizure around the 20th of that month.  We were petrified.  We put everything on hold.  And we've been in that holding pattern ever since.

It doesn't help that W was diagnosed in late 2005 with an AVM.  An AVM is an "arterial veinous malformation"; which is essentially a cluster or mass of veins that grow into clump.  This happens when one is in the womb, W has had this AVM since before she was born.  AVM's can be anywhere in the body, really; and are most often found in the extremities (arms, legs).  W's is in the right lobe of her brain.  Pretty much the entire right lobe.  It's large.  It looks extra ugly in a brain scan (trust me).

When W was 18 or 19 years old, she started blacking out while driving.  Her vision was getting bad as well; so, she went to the eye doctor.  He was the first person to notice that her ocular nerves were extremely swollen.  He suggested a brain scan.  It was called for the very next day, October 25th, 2005.  The doctor reading the scan came out and said, "Well, you have a very large arterial veinous malformation in the right lobe of your brain.  You need immediate brain surgery.  Where would you like to go for that?  Here in Missouri like St. Louis?  Or would you rather go back to your home state of Iowa?" Not exactly what a high school senior expects to hear.

We were all devastated.  To make matters worse, after visiting multiple neurologists across the country, we realized that W was NOT a candidate for surgery or any other kind of physical treatment.  When doing the initial testing to see what the consequences of brain surgery would be for W, the doctors quickly realized that the AVM affected W's ability to talk and move.  Essentially, with surgery, W would be perfectly sound of mind while being unable to speak or move ever again.  She would be trapped in her mind forever.  She didn't want to live like that, and we didn't want her to live like that either.

So, we sallied forth, waiting and wondering what on earth was going to happen next.

When W started seizing, we just thought this was the next step in the progression of what the AVM was doing to her body.  We didn't really question why the AVM had caused no problems until she was 21/22 years old; we were resigned to our fate.

My mother had just been through surgery and treatment for endometrial cancer in late 2008 (the same cancer we later found out killed her biological mother).  In fact, Christmas that year was spent helping her recuperate from her emergency hysterectomy just 10 days before Christmas of that year.  I think this first bout with major fear had left us feeling the doom that something evil was heading our way.

In early December of 2009, just a week or so after W's 22nd birthday, she suffered several seizures in a row.  My middle sister, M, could not revive her; and W was taken to the ICU 1/2 an hour away from where we were living at the time.  Our parents rushed down to be by her side.  We were all in such a daze that I honestly don't remember much from that time; but I do remember the ICU doctor telling me that I was listed as her next of kin, and that I needed to be prepared to make some important decisions in case she didn't survive.  I was numb and cold and speechless.  M and I just sat in W's ICU room.  Not saying a word.  Just glassy eyed and frozen.

But, W pulled through.  A week later she was dismissed, and we celebrated Christmas here in Missouri instead of going home to Iowa, just to be safe.  The following months were probably the darkest for my sisters and I.  W had several seizures a month sometimes. (I realize that some people suffer from 10, 50, 150 seizures a day.  That is terrible, and I am not trying to complain about a seizure a week when others go through so many a day at times; but to me, any amount of seizures is "too many seizures" for anyone.)

To make matters worse, the first medications she was on made her have night terrors.  She was also sleep-walking and doing very strange things in the night - totally asleep, not even realizing it.  This is terribly frightening - both to experience and to watch happen.  The final straw was when W tried to get outside on a second-story porch, presumably to jump off.  A that moment, we felt we had a long journey ahead of us.

Instead of working on music and projects, M and I spent our days making sure W was okay.  M even more than me, because she and her husband were living in the same house as W at the time while their condo was on the market to be sold.  M lived in terror.  W lived in terror.  She was afraid to go to sleep.  She was afraid to be awake.  She was afraid to eat or drink certain things lest they be a "trigger" for another seizure.

As the months languished on, W's friends faded away.  Most people stopped calling.  After all, how many young twenty-somethings could understand what she was going through?  Hardly anyone.  She had lost her ability to drive (in most states, you must be seizure-free for at least 6 months in order to have your license reinstated, W couldn't even go 6 weeks most of the time), and she didn't feel safe going out with people who didn't fully comprehend her situation.  We all sat around a lot, watching movies and waiting in torment for the next episode or seizure to take over our lives.

When W would seize, she often wouldn't be able to move the left side of her body for hours, sometimes a day or so.  We would have to help her go to the bathroom, wash her hands, walk, etc.  It was hard on everyone, but most of all on W.  What 22 year old wants to live like that?

As time ticked on, we were praying together as a family.  Why was God letting our family suffer?  If he is great and mighty as we knew him to be, why doesn't he just take this all away from us?  Why do we have to continue to languish in pain and fear breaching on sheer terror?  Why?  Why?  Why?

Church members, friends, and family members would offer advice and prayers.  Some would even get preachy with us, telling us that we obviously aren't doing "something right".  We weren't "praying right".  We weren't "doing enough".

So, we would try harder.  We would pray harder.  We read our Bibles like crazy.  We asked for forgiveness.  We cried and sobbed to Jesus that we would do anything if only he would be touch W and heal her.  Heal her completely, make her whole; so, she can live a good life, a happy life again.  So, the band could move forward - or we would give up music!  We would go work some boring 9 to 5, we would change everything, anything, if only he would hear us and gift healing to our family.

But then W would seize again.  And we all noticed they were getting worse.  In one way, she was coming out of them more quickly and was more aware when she came out of them; but in the other hand they were becoming more frightening and violent.  She could feel them now.  She was feeling her muscles posture and stretch and strain.  She was contorting and screaming so loudly it would make your blood curdle.  These were exorcism-style seizures.  W was losing all hope...not just hope for healing, but for a future.  Who would want to date a girl who could drop down with a horrific seizure at any moment?  Who would want to be friends with her?  Who would hire her?  She couldn't live alone.  She couldn't drive.  The whole situation seemed utterly dim.  We had no choice but to turn our eyes to God and plead; but deep-down, we were all losing our speed.  While we knew God had not forsaken us, it sure felt as though he had just decided to not show up to this terrible party at all, leaving us to our own devices.

In the midst of the this, Mr. C and I were dealing with the fact that we were, in fact, "infertile".  We were not sure of the reasoning, but we knew that things were not going right in the "trying to get pregnant" arena - something had to be wrong.  And something was wrong as we were soon to find out.  In June of 2010, I got my first abnormal pap smear ever.  By August, I had stage 2 pre-cancer.  By the time my surgery to remove it came about in September, it had progressed to stage 3C pre-cancer - I was months from being a 29-year-old cancer patient.

About this same time, I went to a special church "camp meeting" with my parents, W, and Mr. C.  Pastor Tim Storey was the special guest that night.  I am not a fan of "special guest pastors" or "celebrity preachers".  I grew up in the church, and I have never lost my faith in God; but I have to admit, in many ways I have lost my faith in many of those who claim to be his "faithful".  I have seen the epitome of hypocrisy within God's family, and I am forever wary.

So, needless to say, I wasn't exactly excited to go hear "Dog the Bounty Hunter's preacher", as everyone kept referring to Pastor Storey.  That night, I was feeling especially low.  It seemed as though every time I turned on my computer or answered my phone I was getting an e-mail or phone call about someone being pregnant.  It seemed so easy for everyone; everyone, that is, but me.

During the service that night, Pastor Storey was praying for healing for many people in the audience.  One girl was even called out and prayed for due to having seizures; and I thought for a split second, "Maybe God is trying to reach us?!"  Pastor Storey looked out into the congregation and said, "Someone here has been having a hard time getting pregnant.  Get up here, you know who you are, you need prayer."

Something just struck me, and I kicked off my high heels and ran up to be prayed for - NOTE: this is totally not something I would normally do!  A teeny, little woman from my parents' church had already been prayed for, and Pastor Storey told her that it was now "time for her to be bold" and pray for me.  She grabbed my hands, and I suddenly felt huge at only 5'2" next to this petite wisp of a woman.  She looked into my eyes and began to pray.  I started sobbing uncontrollably, and suddenly I was out like a light.

In all of my years of growing up in the pentacostal/charismatic Christian church, I had seen TONS and TONS of people "slain in the spirit".  This is when God literally "knocks" someone over (like fainting) in order to speak straight to that person's spirit man while the person is in an almost dream-like, and most receptive state.

I honestly didn't know whether I thought it was hooey or play-acting or wishful thinking or what; but there I was, lying on the floor before the altar in my parents' church - slain in the spirit.  Yes, folks, believe what you want; but IT HAPPENED.

Everything was black and it sounded like water was rushing past my ears, as though my head was caught in the current a babbling stream.  I saw nothing; but I heard one thing, very clearly: "W's already healed.  W's already healed."  Twice, and that was it.  I jerked awake as you do when dreaming of falling, to find a dark purple blanket thrown over me and an usher bent over me, offering me his hand and a Kleenax.  "Are you okay?"  he asked.  I just nodded "yes".  The whole room was spinning, and my eyes were still clouded with tears as I made my way back to my seat with my family.

The whole congregation seemed to be looking at me expectantly.  My family was asking me what had happened.  Did God tell me when we'd have a baby?  How we'd get pregnant?  What happened?  Anything at all?  I was dumbfounded.  I had gone up to receive word on our infertility status, and had been given an ambiguous promise that my sister was "healed" - whatever that was supposed to mean.  It felt a bit anti-climactic.  After all, W had been  prayed over time and time again by many people.  I cannot tell you how many times we thought, "This is it!  She's healed!"  It wasn't surprising then, that had no clue what I was to take from this message, this promise of healing that I had just been given.

Later, when the service was over, I told W and Mr. C only what had happened.  We all agreed that God must have been saying that we were eventually going to find a way to remove the AVM from W's brain.  We were happy that night.

Fast forward through my surgery and recovery, a botched adoption, and many seizures later for W, and there we were sitting in the ER, three days before Christmas 2010.  "Another Christmas in the hospital" was on everyone's mind.  W had suffered three seizures within 40 minutes - the terrible, exorcist-like ones, where she feels everything.  We were all fried - emotionally, physically, and spiritually.  We sat like zombies in the ER waiting room while all sorts of tests were run and given to the on-call neurologist (W's regular neurologist was on vacation).

I had been switching off and on with M going back to the ER room to see W (only two people allowed at a time, and our mom wouldn't leave her baby's side, of course; so, we sisters took turns).  I was getting ready to switch off again and go to the ER room when M came out, a strange look on her face.

"Well," she said. "W's been officially diagnosed with catamenial epilepsy."  A rush of knowing breezed through my body - I literally felt a chill.  Catamenial epilepsy, as in epileptic seizures that occur only around a female's menses and the major times of hormone unrest during her monthly cycle (ovulation, luteul phase, menstruation, etc.).  Oh.  My. GOD!

Suddenly, I could remember all the way back to June of 2009 - W's first major seizure.  The doctor in the ER mentioning hormone related seizures in women.  A call for progesterone cream in July of that same year.  Her first neurologist mentioning catamenial epilepsy casually in a conversation with W, M, and myself.  Over and over and over and over again the examples were flying at my mind.  The answer had been in front of us all along.  We were just too blind to see.

As it turns out, the on-call neurologist, Dr. O, is a genius.  Really.  He had been too busy to see W earlier on in her diagnostic journey; which is why she was seeing her current neurologist, Dr. S.  After looking over everything W had been through and checking all of her past charts, he proclaimed something we had all begun to suspect, but thought was too good to be true - that W's AVM has nothing to do with her seizures at all.

Her body learned to deal with her AVM in the womb.  If it was going to cause her harm or kill her, it would have done so years and years ago, probably when she was just a very young child.  But it hadn't.  "Somehow," he said.  "Her body has miraculously learned to circumcede it.  It does nothing to her as long as she doesn't aggravate it with medicines that clot the blood or too much pressure (ie: deep-sea diving) or too much caffeine."

It dawned on me in that moment what God had been trying to tell me that night that I was slain in the spirit.  W was "already healed", because she was never in any danger with the AVM to begin with.  It was her "diagnostic smoke and mirrors", so to speak, keeping us all distracted from the real problem and truth - W was an epileptic.  Not only that, she was a rare kind of epileptic, suffering from seizures that only women can have, and only women with severe hormone deficiencies like we had been told about over and over and over again.  Many different vessels and venues throughout the year and a half W had been suffering from seizures had brought up the importance of having hormone levels checked in female epileptics; but we just kept shrugging this information off each and every one of the multitudinous times it was offered to us.

All along, we had been sure to remind people that W was NOT an epileptic, that her seizures came on as a result of this terrifying being - the AVM.  Now, we were being smacked in the face with our ignorance and inability to see the truth.

Our mother sat on the bed cradling W's head as she was in the throes of the 3rd seizure that day praying out loud, "God, if there is something we are not seeing, please open our eyes.  I beg you, give us the answer."  I wonder how painful it must have been for God and the angels surrounding us to have to stand back and watch - letting W seize so many times in a row so that we would finally feel the urgency to call the ambulance.

I've said before that God always answers our prayers, just not always in the time or manner that we wish.  W's diagnosis is the surest example of this that I have in my own, personal repertoire.  She had to suffer a year and half of our ignorance and those final, 3 horrific seizures in a row so that we would call 911 for the LAST TIME, 3 days before Christmas to see a doctor she would never normally have seen in order to get her diagnosis.  Her truth.

All through the months, as we prayed for God to help us find a solution, to heal our family, to help us move forward, he was there.  Constantly trying to make us see.  Trying desperately to open our eyes, our ears, our minds.  While we felt our trust in his ability to guide and lead falling apart, he NEVER gave up trying to get the truth and answers to us.  He just kept trying; he never lost faith in us.

It is so humbling to know that the almighty God who created all things and loves and cares for everyone and every living thing on Earth and throughout the universe never lost faith in me, even when my faith in him waxed and waned like the moon in the night sky.  Even more staggering is realizing just how long God had kept W safe from her AVM.  While her body has become accustomed to it's presence, extreme pressure, especially when she was younger might have caused it to rupture and bleed - killing her.  W was born early, via c-section.  The last obstacle that could have put too much pressure on her tiny brain and AVM, squeezing through the birth canal, was taken from her.  God was watching and protecting her literally from day one!

We found out that night that catamenail epilepsy is caused by excessive or extremely low levels of estradiol (one of the many forms of estrogen) and progesterone.  We had found out in July of 2009 that W had terribly low progesterone levels.  We all just ignored it; we were so blinded by the AVM.  Even her doctors had been blinded by it.  If we had gotten W on a routine back then of progesterone creams and maybe even some pills, she may have never spent in the hospital, lost her license, had to move to Iowa to live with our parents, or forsaken nearly all of her hope for a normal life.  It is such a shame, and a lesson I will NEVER forget so long as I live.

We found out that W's progesterone level that day was .6.  As in, not even "1".  At that day in her monthly cycle, her progesterone levels should have been anywhere from 30-60.  No wonder she was seizing, and so painfully too.

I am so blown away at how many times the answer was right in our face, but we just couldn't see it or wouldn't see it.  If you're out there and you're wondering if God is real, if he really works in our lives and heals and gives answers, I can tell you from experience "YES!  Yes, he does."  I pray for you that you will not be like us.  That you will have your eyes and ears and minds open to his voice.  Always remember that he will use the most unlikely of vessels, the most unexpected of sources to reach you; so, be vigilent.  Be aware.  Be open.  At any moment, you could be getting life-altering information; or YOU could be the one to be a vessel of information or inspiration to someone else.  If you feel a tug to go talk to someone, do it!

Update: Mr. C and I just went to our first meeting with our fertility doctor, and we feel confident we are in good hands; but what struck me the most was the fact that this doctor, Dr. S (no, not the same as W's neurologist, silly!) has many patients who are catamenial epileptics.  He said that in his opinion, "catamenial epilepsy is an 'easy fix'," and that "nobody should have seizures due to this very easily controlled condition."  What GREAT news for W! 

The same day, W revisited the hormone specialist who first discovered and diagnosed her with low progesterone back in July of 2009.  She is now on progesterone cream, and while it may take a while to her routine "just right", she is at least on (finally!) going in the right direction!

I have been wearing the bracelet I told you all about a few blogs back that M and her husband C made for our family in light of W's situation.  It's gray and looks like those famous, yellow "Livestrong" bracelets.  It says simply, "Expect a miracle...Psalm 5:3".

Miracles are happening all around us every day, everywhere.  Do not give up on your miracle.  It IS coming.  I know it may seem hopeless and you are so tired of being hurt and let down; but I promise you, God feels your pain.  He loves you and doesn't want you to live this way anymore.  He is trying to reach you, and he will.  Just keep hoping and persevering.  Just keep expecting a miracle...

"In the morning, O Lord, you hear my voice; in the morning I lay my requests before you and wait in expectation..." (Psalm 5:3, NIV).

Love, Love, and More LOVE to you,

PLEASE READ, PS:  I felt the need to update this a bit again and just mention a few things concerning catamenial epilepsy.  #1: often catamenial epileptics find that their seizures are drug resistant.  This should have been one of the first signs of W's condition to us.  #2: Catamenial epilepsy is not "normal" epilepsy.  I say this, because in fact it is not a "brain" thing (as in neurotransmitters or neurons malfunctioning and misfiring in the brain); but rather a "body" thing (the inability to create and control health and normal functioning levels of certain hormones in the body.

When W was tested for epilepsy waaaaaaay back at the beginning of this journey via EEG (of which she's had several), they could never see anything wrong with her brain.  So, if you're out there struggling and you like this and you think you or a loved one may have catamenial epilepsy, just know that it will not "show up" in "regular" epilepsy tests.  You will need to find someone who specializes in hormones and hormone therapy in order to get your/their condition diagnosed properly.

I just wanted to clarify that.  Hope it helps someone out there somewhere!


  1. Mandie. Wow. Your story, your sister story, it's amazing. You have a gift with words, you're very talented. Continued prayers for all of you! I can relate to the fertility thing. It is such a difficult thing and I can attest after having been there,that you don't truly understand, can't truly understand, unless you've been there yourself. I know many who have struggled or are still stuggling with it. Many prayers.

  2. Wow! What huge things our God can do! Thanks for sharing your story. I wonder how many times I continually pray for direction and answers only to have them waiting in front me the entire time?

    Still praying for your family-to-be. I am waiting *expectantly* for news of a Baby C. :)

  3. Mandie! You have been the light my family has needed! My sister has had seizures almost all of her life around her menstrual cycle. No doctor has been able to explain why, and no prescription has helped. Because of you, we are now thinking that Catamenial Epilepsy may be the reason why she is having so many seizures! I am so glad that I read your blog! You are a huge blessing to my family! Like you said, sometimes you are blinded by the answers! I pray that God blesses you and your family.

  4. @Stephanie B. just made tears well up in my eyes. Seriously. This is what it's all about. If what we've gone through helps just one other person, it's worth it!

    Make sure they check her estrogen and progesterone levels as well as her thyroid and adrenal function (these help the body create and control estradiol and progesterone).

    Also, there are some really good sites out there that go more in-depth about catamenial epilepsy. I sincerely hope and pray that your family and mostly your sister get the answers that they deserve.

    Many, MANY blessings to you and yours in this new year!

  5. @Stephanie B. Oh, also forgot to say that my sister's seizures are mostly drug-resistant too. Most catamenial epileptics find that drugs do not control their seizures, because they're not true epileptics. In fact, when having an EEG (I think that's the brain one and not the heart one - ha!) their brain function will not show up like a normal epileptic with malfunction and mis-firing neurotransmitters due to the fact that it is a "body" thing (messed up levels of progesterone, for example) and not a "brain" thing (neurotransmitters getting out of whack). Hope that helps!

  6. That helps trememdously. It's funny that you say that about EEGs because they have never found anything on her EEGs...EVER. They almost made it seem like it was a lost cause and that she had them because she had them. I truely believe that God brought you and Sean in mine and Tim's life to help cure my sister. You are an amazing person and truely a blessing! God is good!!!

  7. I have suffered from Catamenial epilepsy so long that it has eventually caused my brain to miss fire stronger than ever before! The repeat of seizures will get stronger n eventually show up on EEGs! The sad part about this disease is that none or a few in the US know what to do with me! I have had to have a Vagus Nerve stimulator put in, but the drs are still unable to control my seizures at my cycle. I have dealt with these seizures since I was 13 and i'm now 33. Hopefully somebody can help your sister n I'm starting something to become an advocate for women everywhere that are suffering in vain without any help!!! Traci Rupard

  8. @Traci: I am so sorry to hear about your story. But I wanted to know, are you on hormone therapy at all? My sister is now in contact with two doctors (one in Missouri, one in Iowa) who both work with a lot of catamenial epileptics. Both doctors have a great success rate keeping seizures at bay for their patients to the point where almost 100% have no seizures anymore at all. This is all due to getting these women on hormone creams and pills at point in their cycle when their hormones fluctuate and are dangerously low or high.

    I agree that hardly anyone in America talks about this condition or even knows about it. The word definitely needs to be spread. I am glad that you're doing something to stop the ignorance surrounding this condition. Let me know if my family can do anything to help spread the word right along with you!

    Good luck to you and God bless!

  9. Oh my word!
    I have twin daughters, 20 years old. I know they have catamenial epilepsy. We live in Missouri, can you please email me the name of the Dr. you went to. I have been searching for 2 years for someone to help us. I know the last post is over a 18 months ago, I pray that you can help us.