Epilepsy Awareness Month: Kyah’s Blog Post

purple silence the stigma words brain background - Epilepsy Awareness Month

Hi, my name is Kyah Altiere.  For the past 5 ½ years I have been a counselor at a substance abuse clinic.  I never realized how much I had in common with people living with opiate addictions.  Stay with me here, I’ve never used any illicit drugs.  Our clinic is a Medication Assisted Treatment program (look it up).  Now the medication does not = 100% control from relapse.  I have intractable epilepsy so, I understand medication is not full proof.  Plus, we all have our triggers and need coping skills.  Sound familiar?  My main trigger is flashing lights, but seriously, no way was I going to watch Marvel’s Endgame on Redbox! (I wore my sunglasses).

Back to my work.  1/3 of my patients – their addictions started with legally prescribed opiates.  Their doctor over prescribed their medications.  In 1996, I learned that my neurologist over prescribed my Dilantin.  My seizures were out of control, the emotional side effects were unbelievable.  Think Bridezilla x 10.  (I got married in 1995).  I got sent to Abbot Northwestern to see if I was a candidate for brain surgery.  Fortunately, I met a competent epileptogist and my medications were straightened out. Yet, I was a mess.  The medication side effects…I said things to my husband and dearest friends…I still cringe. 

Enter the Epilepsy League of America (aka Epilepsy Foundation today).  I was introduced to a supportive community that continues to change my life.  Epilepsy and medication education.  I learned there is life without having a driver’s license (didn’t take overnight).  I have patients living with epilepsy.  I get their humiliation in the ER, being shot up with haldal, “she’s having a pseudo-seizure from an OD”.  EF pamphlets are in my office. 

It’s 2020, I live in Duluth, MN with my husband.  We celebrated our 25th anniversary in August.  I have 2 master’s degrees (since 1996) and take the bus to work.  I chose not to get my driver’s license again.  My philosophy: E (event) + R (response) = 0 (outcome).  Our responses and attitudes are important.  Hope to see you for Day at the Capitol -> Advocacy = Fighting the Stigma!!   Thank you for reading my blog.  Safe Holidays!!

ST. PAUL, MN FEBRUARY 26: EFMN Day at the Capitol on February 26, 2020 in St. Paul, Minnesota. Credit: Tony Nelson