Tuesday, November 9, 2010

e is for epilepsy!!!

Happy Epilepsy Awareness Month!!

Are you so over the months? Skip this then. Be warned, there will be more, because it's National Adoption Month too. Let me begin by first saying that I do not think that I am this big blog celeb and that a million people read my blog and that my posts affect the masses. That's not what this is about. It's about awareness, yes, but not necessarily numbers. If I can educate one person, then I'm happy. It also provides me with a platform to use my voice on topics that are awkward to bring up willy nilly. It is a passionate belief of mine that we use our voices. Even if nobody hears them, it is healing for the words to be said.

With that in mind, let's talk about epilepsy!! I'm going to dissect this into a number of sections and invite whoever wants to ask me questions to do so and I will answer them.

1.  What is epilepsy? The kind of epilepsy that I have is caused by too much electricity in my brain. It's like wires get shorted and then my body spazzes out because the wrong wire goes to the wrong part of the brain and there's no breaker.   It can cause seizures when this happens.  People with epilepsy can also suffer from depression and anxiety or worsening depression and anxiety and insomnia.  My epilepsy is caused by hormonal changes that affect the chemical balance in my brain and thereby affecting the amount of electricity.  Epilepsy is not contagious.  It is something you are born with.  I can also be caused by head injuries.  Even though epilepsy is a neurological condition, people with epilepsy are not mentally challenged.

2.  What happens when you have a seizure?  There are three different kinds of seizures:
  1. Tonic Clonic or Grand Mal seizures. These are the big ones where I loose consciousness and shake and such. They last 30 seconds to 1 minute. Before these I have a warning that it is going to happen or an "aura." When this happens I call for help, get on the floor and try to run my magnet.  I usually have these kind when I'm falling asleep. They are the most dangerous and if many are had, especially close together, they can cause brain damage or even death in the case of not being able to stop them. After these I need a day or two to recover and just sleep a lot. Sometimes, if my vitals aren't good or I can't quit throwing up, I go to the hospital where they give me heavy seizure drugs and ant-nausea medication through an IV.
  2. Complex Partial or Partial Complex seizures. They are exactly like my aura before Grand Mal seizures, so I am usually scared that I'm going into a Grand Mal. These can last anywhere from 45 seconds to 1 minute. These are the scariest because I am fully conscious for the entire episode but I gradually lose control over my body. My limbs start to stiffen, my eyes start to roll into the back of my head, all while I'm trying to fight it and stay conscious. It feels like someone disconnected the wire from my brain to my body. To fight it, I do a number of things. I sing I am a Child of God. Micheal Ballum, whose son has seizures as well, said that singing can help bring you out of it because you use both sides of your brain. Spencer sings with me, and when I stop singing, he yells at me to stay with him and sing, or look at him, or squeeze his hand. If he can yell at me and keep me focused it helps me from getting so scared that I give into it. We also try smelling salts. When none of that is working, Spencer will give me a blessing. While Spencer is doing all of this, I am inside my mind thinking, "Sing. Just sing. Sing. Damnit sing!! I am a child of God. Sing it!" or "Move your hand. MOVE YOUR HAND. Damnit move your hand!!!!" or "SCREAM!! SCREAM!" Or I am praying. When it is finally over it ends suddenly and I finally scream and then I bawl my eyes out while Spencer comforts me. I am immediately fine after these and typically don't suffer anything but a bad headache and discouragement. I take Ativan after, a heavy seizure medication in addition to my regular medicine in order to prevent a Grand Mal. These types of seizures are embarrassing to have in public because nobody knows anything is going on and it looks like I'm just sitting there going, "Iiiiiiiiiii am...iiiiiiiii..." like a crazy person and then all of the sudden I'm screaming and crying. It's really humiliating. It resembles a mental breakdown for no apparent reason. Partial Complexes usually occur when I am on my period or just before. They can also occur when I'm extra stressed, upset, or tired. I don't have these anymore unless it's a really bad day!
  3. Absence seizures. I don't have these anymore. I used to have them in Junior High and High School.  These are simply short periods of time when I "blank out." They're characterized by looking like staring or daydreaming, but are simply an awake loss of consciousness. Nothing happens after these and I often didn't even know they happened.
3.  What is the worst part of having epilepsy?  For me, there are several things that all tie for first place. It's hard not to have your independence.  It's hard to not be able to have a normal life.  All the adjustments and modifications don't seem like that big of a deal, but sometimes, you just wanna be normal.

Thirdly, it's hard to be perfect.  Even the slightest unbalance can cause a domino effect.  I have to make sure I'm eating right, exercising, sleeping enough, not stressing out, even pooping regularly.  But the medication causes insomnia, so then I need to sleep during the day so I get enough sleep, but then when do I workout?    And stressing about stressing....?  It's hard to always be trying to achieve that perfect balance.  I mean, I know we all are, but I have immediate and life-altering effects.  In this stage of my life, I've gotten great at establishing a sleep schedule, workout schedule, poop schedule ;) and still managing even when I don't get enough sleep with extra medication.  But it took years to do so.  I know my Heavenly Father has definitely helped me.

And finally, it is the medication.  After my first seizure at 14 I was put on the best medication for seizure control at that time.  It made me so tired that I could barely function.  The third week I was on it, my Dad wanted to get me out of the house, so we went for ice cream.  I fell asleep in mine.  It broke my dad's heart.  I got more used to it as time went on, but I went through my days like a zombie.  It also caused so many chemical changes in my body that it made my hair fall out.  I also had even worse acne than your normal teen because of the medication.  My entire face was covered in painful cystic acne that had the same smell as my medication.  I couldn't wear any jewelry because it would tarnish.  Everything I put on would turn black and erode within a school day.  You can imagine how popular I was, especially with boys.  ;)

My senior year we had to switch medication because it was causing liver damage.  The medication we switched to gave me a mild form of Lupus that I still have today.  We were lucky enough to catch it in time before it developed into full-blown Lupus.

We switched to something else and it worked pretty well throughout college.  The side effects were very minimal and I only had a couple of seizures.  My hair grew back, my acne got better, and I could wear jewelry again.  My depression and anxiety also got better, but I attribute that to getting out of North Ogden.  ;)  We switched medication again my sophomore year of college when it started to not work as well, and I Od'd and almost died.

The new med was good too.  However, my senior year of college the medication quit working and we had to switch again.  We tried something that I don't remember because Spencer said I was a dead woman walking for about two months.  Finally, we switched to Keppra.  It didn't really do the job, since I was having seizures every other week, but it was the best out there and we couldn't add a new medication without me turning into zombie woman.  So, we looked to the VNS.

I am on one called Vimpat now, which I LOVE.   The side effects are minimal and with my VNS, my seizures are controlled.  A few years ago, we added my one from college too, and I feel like my old self.

Side Effects on Pregnancy:
There are no adequate and well-controlled studies in pregnant women.  In animal studies, levetiracetam produced evidence of developmental toxicity, including teratogenic effects, at doses similar to human therapeutic doses.  (In animal testing, there were reports of mental retardation, aborted fetuses, and especially severe skeletal malformations usually in the skull.)  Anti-Epileptics should be used during pregnancy only if the potential benefit justifies the potential risk to the fetus.  As with other drugs, physiological changes during pregnancy may affect medication concentration.  The effects of anti-epileptics on labor and delivery in humans is unknown.

My neurologist recently told me that I will likely never be medication-free.  While this is discouraging, new medications come out about every three years and the side effects are getting less and less intense.  Baby steps are key.

4.  Are there any misconceptions about epilepsy you wish would be put to rest?  Epileptics are not mentally challenged.  Even though there are some cognitive effects from seizures or medication, our mental capacity is just as full as everyone else's.  We can do everything you can do, we just have to be cautious.  Also, before a doctor tells me, "The side effects on this medication aren't bad at all!" they should be required to take it for a week.

5. What is the best thing about having epilepsy?  Angels.  In high school all of my friends pretty much abandoned me...but God would send me these angels to help me get through tough times.  Like my seminary teachers, Brother Kendrick and Brother Garrett, whom I will love forever.  Or Gwen Larsen, a Young Women's Leader I had, or Lisa Keyes, also a Young Women's leader.

Or special friends that were able to look beyond my differences, like Shani or Landun.
me and Shani
Or Vicki and Dixie and Gary, older people who became my family at work.  And my family...always my family.

Or a special boyfriend, who provided an equal amount of pure joy and love through many trials.  Like when he bought me a locket and had it coated with something so it wouldn't tarnish on my skin. 
Colby and me
When I got out of high school it got even better.  I found amazing friends.  A.MAZ.ING.  And they are no less than angels to me.  I was constantly reminded of the Lord's love for me through the acts of my friends.

Like the countless times Swede and Dave came over to give me priesthood blessings.
Dave, me, and Swede
The time Julie found me crying and became my soul sister.
Julie and Me
The time Katie saw me on campus and thought I looked tired, so she brought me cookies and a card.  The countless, countless times Jaclyn, Deneal, Kara, and Melissa lifted me up.
Melissa, Me, Jaclyn, Deneal
Deneal, Jaclyn, Kara, Me
The laughs I had with Mel and Nate and Mindy.
Mindy, Shani, Me, Deneal, Julie
The late night-early morning talks with Chad.  The unimaginable amount of times my friends would take me grocery shopping with them.  The time that I had a seizure and my little brother organized a card signing.  The time when we went to a haunted corn maze and Deneal, knowing that strobe lights can cause seizures, yelled, "Get Chelsi outta here now!!  She can't be around strobes!" and I was swiftly carried away by several handsome college boys.  Or EVERY Thursday night when Elsie would yell at the DJ to turn off the strobe lights so that we could dance in the hip hop room because she knew I loved it.  Or you, my blogging buddies, for your comments and the way they buoy me up.

And now, my new family.  Their willingness to not only support Spencer's decision to marry a sick girl but love me unconditionally and accept me AS THEIR OWN.

My nieces who make cards for me.
For their slobbery kisses and the best hugs ever, when they dance for me, or ask, "How are you feeling Aunt Chels?" or tell me they pray for me every night.
Mi and Me
My in-laws who I love as much as my own parents, with their endless hugs and kisses, father's blessings, cheer up presents, good advice, and support.  My brothers, with their quiet love, their ability to make me laugh and their special hugs, and their worthiness to lay their hands on my head for a blessing.  My sisters, for their lending ears, and their sisterhood.
For Summer, for her sweet surprises, for her listening ear and open arms, and for her sensitivity to tell me she's pregnant before anyone else so that I can have time to process it.  And for Spencer...and Belle...that's a whole other post entirely.
Me, Spence, Sum

I felt and still feel a feirce love for these people and I know our relationship would not be as special without the trial of my health and the way they help me through it.  God has sent me these amazing people who enrich my life immensely and I could not love them more.

6.  What should I do if I see someone having a seizure?
When providing seizure first aid for generalized tonic clonic (grand mal) seizures, these are the key things to remember:
  • Keep calm and reassure other people who may be nearby.
  • Don't hold the person down or try to stop his movements. You can hold them in a hug to make sure they don't bang against the ground if you want.
  • Time the seizure with your watch.
  • Clear the area around the person of anything hard or sharp.
  • Loosen ties or anything around the neck that may make breathing difficult.
  • Put something flat and soft, like a folded jacket, under the head.
  • Turn him or her gently onto one side. This will help keep the airway clear.
  • Do not try to force the mouth open with any hard implement or with fingers. A person having a seizure CANNOT swallow his tongue. Efforts to hold the tongue down can injure teeth or jaw.
  • Don't attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.  They will breathe heavily and take short breaths after, but it will return to normal. 
  • Stay with the person until the seizure ends naturally.
  • Be friendly and reassuring as consciousness returns.  
  • Offer to call a taxi, friend or relative to help the person get home if he seems confused or unable to get home by himself.
Is an Emergency Room Visit Needed?
When these conditions exist, immediate medical attention is necessary:
  • Diabetes
  • Brain infections
  • Heat exhaustion
  • Pregnancy
  • Poisoning
  • Hypoglycemia
  • High fever
  • Head injury
An un-complicated generalized tonic clonic (grand mal) seizure in someone who has epilepsy is not a medical emergency, even though it looks like one. It stops naturally after a few minutes without ill effects. The average person is able to continue about his business after a rest period, and may need only limited assistance, or no assistance at all, in getting home. In other circumstances, an ambulance should be called.  In any case, ask the epileptic person before hand if you should call 911 if they have a seizure.  Have the number of an emergency contact nearby and ALWAYS call them. 

7.  What can I do to help someone with epilepsy?  Be supportive.  Be there for them as they experience changes in their health and be understanding of the emotional effects of epilepsy.  Don't be a fair weather friend.  If you don't understand something, ask questions.  Get educated.   Learn more at www.epilepsyfoundation.org, www.epilepsyadvocate.com, or www.cureepilepsy.org

Ps.  Kari, the pics are for you.  Did you read the whole thing?  Congrats!


      Kari said...

      I did!! It was very good and informative. Thanks! :)

      Anonymous said...

      Chelsi.... You are an angel :) I just want you to know that. I mean, I'm sure you already do from that sweet husband of yours, but I'm telling you too :) Thank you for this post. It *was informative, but it also had me crying :P Because I'm so glad you have so many wonderful people in your life, and because I know how wonderful you are to them. It's pretty hard not to notice that with all the love I felt from reading this. Just thank you :)

      Seantae Jackson said...

      Oh Chels. I always so appreciate that you make supportive comments on my blog, and I only hope that you feel 1/2 the same when I do on yours. Thank you for your post. It's nice to remember that somebody with ANY condition would rather that you know more, than have questions floating in your head. Your strength, which I'm sure has come with a lot of blind faith and practice, is amazing. It gives me more. You are probably an angel to more people than you have angels. Thank you for the reminder of enduring to the end! You (and Spence) are always in my prayers.

      Natalie | The Bobby Pin said...

      I shared this post, so hopefully that creates awareness! I am amazed at what you put up with a deal with. I think I'd be totally depressed and totally check out of life. But you - you don't. So that's amazing.

      Chelsi said...

      Thanks everyone. Dana, add your e-mail addy so I can respond to you!! Cause you're my favorite Allred and an angel too.

      Kari said...

      I just realized that the Dave in your pictures is a guy that went to hs with Matt.

      The Voorhees Family said...

      Chels, you are an amazing woman! I love you babe and miss our crazy times together.

      Unknown said...

      You talk about angels, yet, I feel like you're forgetting you are one Chels. If I would've known you better in High School, I would've stayed by your side :D But you have my friendship now and that's the way it's going to be from here on out!!!