Epilepsy Institute of NC info@eiofnc.org 336-659-8202

MY EPILEPSY

   I have left mesial temporal sclerosis due to a high fever when I was an infant.  Having surgery to remove that area when I was twenty-five, I went seizure free for three years.  The complex partial petit mal seizures returned.  For years I tried multiple medications.  Finally found a combination of medications that helped me be seizure free for seven years.  

    I was taking brand name medication for two of my prescriptions.  One of the others was a generic.  The epilepsy pharmacologist I saw told me to make sure that the pharmacy would keep the generic brand I was taking made by the same manufacturer every time refilled.  The FDA approves a generic medication when it is within +/- ten percent the blood concentrations needed.  Being similar, it is still possible that a generic can give you a lower or higher percentage concentration.  The FDA says that the inactive ingredients do not need to be the same in generic medications.  Which are dyes, preservatives, and flavoring.  

    Seizure medications have a narrow therapeutic index.  Changes in the concentrations of these medications can be ineffective.  The pharmacy where I refilled my prescription was informed not to switch manufacturers, but they did.  The new generic drug company’s medication was cheaper for the pharmacy.  I took two doses of that medication.  

    After having the privilege to drive for five years, I didn’t know that I would have a wreck in 2010 due to switching the medication made by a different manufacturer.  I have auras and know when a seizure will occur.  I didn’t this time and fought my daughter when she was trying to take over the car wheel and pull the emergency brake.  I didn’t remember this.

     My fourteen year old’s ankle was cracked into pieces.  After having two surgeries in one week on her ankle, I had time to fight the insurance and pharmacy companies while I stayed home taking care of her.  The brand name medication would not be covered by my insurance because there was a generic.  Staying at home and not working, nine hundred dollars a month was not affordable.  Working my way up to the vice president of the drug company, I was able to help him understand what the difference is between brand name and generic medication companies.  Ninety dollars a month is still expensive for one medication, but at least it is the brand name.

PERCENTAGES

I was talking to someone about how many people in the United States alone have EPILEPSY, and he said something that I couldn’t believe anyone would ever say.  I told him that three million people in the United States have epilepsy.  His response was, “Oh that’s only one percent”.  One percent sounds like a small number.  Think about this though, one-third of people with epilepsy can not have it controlled with medication.   There is not a cure.  Twice as many people have epilepsy than people with cerebral palsy, muscular dystrophy, cystic fibrosis, and multiple sclerosis combined.

Epilepsy can occur at any age.  People can die due to epilepsy.  Called Sudden Unexplained Death in Epilepsy. (SUDEP)  There is not a cure.  There is hardly any funding for research to find a cure.  You can die WITH cerebral palsy, multiple sclerosis, Parkinson’s disease, or muscular dystrophy…….not FROM it (like EPILEPSY)!

 

There is more statistics and information at https://www.epilepsy.com/learn/about-epilepsy-basics/facts-about-seizures-and-epilepsy,

I HAVE EPILEPSY

I have epilepsy.  My seizures are not the worse.  I only stare for 30 seconds to 1 minute.  Sometimes I shake my right arm.  Does anyone in Washington, D.C. know someone with epilepsy?  Surely someone does.  Epilepsy does affect 1 out of 26 people in the US alone!  Think of how many people in a Congressman’s district have epilepsy.

WAKE UP, Congress!!  Epilepsy is a pre-existing condition.  The doctor’s visits, the hospital stays, and the epilepsy medication is expensive.  (Oh, you can probably afford it)

The AAPD (The American Association of People with disabilities) says:

www.aapd.com/action-alert-were-not-out-of-the-woods-yet-on-healthcare/

  • The ORRA cuts taxes on the rich by removing health care from the poor and middle class
  • The ORRA would eliminate health care coverage for 32 million people by 2026; 17 million by next year (Congressional Budget Office)
  • The ORRA would increase health care plan premiums by at least 100% by 2026
  • The ORRA stops all Medicaid expansion at the end of 2019 (Center on Budget and Policy Priorities)
  • The BCRA guts Medicaid by cutting over $700 billion
  • Both bills make it harder to provide home and community based services by eliminating the Community First Choice option for Medicaid
  • Both bills eliminate the protections against discrimination for pre-existing condition
  • Both bills eliminate the requirement for essential health benefits (which include prescription drugs, mental health services, rehabilitative and habilitative services, and devices, and more)

ORRA- Obama Repeal Reconciliation Act

BCRA- Better Care Reconciliation Act

 

PLEASE CALL OR WRITE YOUR CONGRESSMAN AND ASK THEM TO VOTE “NO”

EPILEPSY IS A PRE-EXISTING CONDITION!!

There are three million people in the United States that have epilepsy!  Epilepsy is considered to be a pre-existing condition.  Add to that Cystic Fibrosis, Autism, Muscular Dystrophy, Congestive Heart Disease, and the list goes on.  People need to be informed about how expensive medication is for us.  One of my medications is $3,000 a month.  At least I only pay $400 a month with my insurance company now.  (I am only mentioning one of my medications) A longer list of pre-existing conditions can be found at https://www.aol.com/article/news/2017/05/05/pre-existing-conditions-american-obamacare-repeal-american-health-care-act/22071483/.

President Trump’s American Health Care Act says the insurance companies can charge more for, or exclude pre-existing conditions.  The Senate’s Better Care Reconciliation Act, (Blah,Blah, Blah), says that insurance companies have to accept all applicants.

 This lets insurance companies increase costs or limit what they spend on patients.  There is more information about Medicaid, Medicare, Planned Parenthood, Mental Health, etc. at http://www.npr.org/sections/health-shots/2017/06/22/533942041/who-wins-who-loses-with-senate-health-care-bill.

 

 

Senator Mitch McConnell said, “We agreed on the need to free Americans from Obamacare’s mandates. And policies contained in the discussion draft will repeal the individual mandates so Americans are no longer forced to buy insurance they don’t need or can’t afford.”  I have a question.  If uninsured patients go to the hospital, will they get help from the hospital with the cost?  If the hospital loses money helping patients that don’t have insurance, will they have to cut costs by downgrading employment?  Does this help bringing more jobs to the US President Trump?

 

I usually don’t write about anything political.  I felt that people need to see what is considered pre-existing conditions.  You might have one of the pre-existing conditions on that list.  Please call your Congressman to vote “no” on this bill.

Thank you for taking time to read my blog,

Roxanne

 

MY EPILEPSY AND GOD

Easter, God, and me having epilepsy.

My first seizure occurred when I was eight years old.  Being put on the barbiturate phenobarbital I was quiet until the doctor switched my medication when I was fifteen.  I laugh and say the day I came off of phenobarbital, I had a legal high.  It felt like I was floating in air.  The new medicine helped keep me seizure free until I was 22 years old.  The new neurologist diagnosed me and said scar tissue from a high fever is the reason for my epilepsy.  I had surgery two years after that to remove the scar tissue.  I went seizure free for three years.  Three years of freedom being able to drive.

I went through denial for a few years.  I didn’t see another neurologist.  Finally I switched doctors and tried new medication.  My seizures started decreasing in number.  I told God that if I could drive, we would go to church.  Finally, I went seizure free for two years!  Being seizure free, I got my freedom back.  I drove for five years.  We started going to church activities.  Then, my insurance company switched my medicine to generic.  After taking the generic medicine for two days, I had a wreck.

My fourteen year old daughter was in the front seat.  This seizure was not like my previous seizures.  I usually have an aura before them.  This time I didn’t.  My daughter said that I swerved, hitting mailboxes, and going over the yellow line on the road.  Finally the car was stopped a tree.  The tree went between my daughter and me.  I didn’t remember anything.  I came out of my seizure and remember a young man picking up my daughter out of the car.  A lady was knocking on my car window and opened my door.

I saw a firetruck pull up and then my father-in-law, he lived close by.  An ambulance took my daughter to the hospital.  I rode in the car with my husband.  I was on one side of the ER while my daughter was in the pediatric side.  I couldn’t quit crying and wanted to see her.  We found out that her ankle was in bits and pieces.  We were in the hospital for a few weeks.

The pastor came to see us during our stay in the hospital.  I told him that I was mad, at God.  We were on our way to church when I wrecked the car and ruined my daughter’s ankle.  Why?  Why did my daughter have to be in surgery twice while we were there?  Why wasn’t it me?

It took a while for me to be thankful to God that we lived.  My daughter and I grew closer after she had to be home with her foot lifted up on the couch, and me taking care of her.  We live, but Jesus died for us.  I finally know that God let this happen for us to get closer and my daughter to find out which friends were true friends.  They would come visit her to show they care.

Happy Easter and thank you God for sending your Son to die for us.

PHOTOSENSITIVE EPILEPSY

Photosensitive epilepsy is another type of epilepsy that can be caused by flashing or flickering lights.  Different patterns, like stripes and polka dots, can also cause a seizure.  Repetitive patterns like strobe lights, fluorescent lights that flicker, fireworks, and sunlight flickering through trees or on water are only a few patterns.

Types of seizures that can be triggered are tonic-clonic, absence, myoclonic, or focal.  Epilepsy medication can help control these seizures.  Another way to help is to turn your head away from the cause of the flickering.

According to the Epilepsy Foundation, (http://www.epilepsy.com/article/2014/3/shedding-light-photosensitivity-one-epilepsys-most-complex-conditions)

WHAT CAUSES LIGHT-INDUCED SEIZURES

  1. The flicker of the light source, and the “frequency” at which the light changes. In other words, how many times the light flashes in a second. Generally, flashing lights between the frequencies of five to 30 flashes per second (Hertz) are most likely to trigger seizures. In order to be safe, the consensus recommends that photosensitive individuals should not be exposed to flashes greater than three per second.
  2. The intensity of the light source, meaning how bright it is, as well as the “contrast” between light and dark during the flicker. The consensus recommends the contrast between alternating dark and bright images be not greater than 20 candelas per square meter (a technical measure for brightness).
  3. The area the light stimulus occupies in the visual field. This is important because it actually determines how much of the brain gets stimulated. For instance, in the case of television viewing at a distance of about nine feet, the consensus recommends the area of the flashing stimulus on the screen be not greater than 25 percent of the total area. This also explains why most affected individuals can prevent the photosensitive reaction by simply covering one eye (monocular vision).
  4. The pattern of the image. Static or moving patterns of discernable light and dark stripes have the same effect as flashing lights because of the alternation of dark and bright areas. The danger depends on how many and how contrasted the stripes are in the visual field. The consensus recommends no more than five pairs of stripes if they are moving within the field of vision and no more than eight pairs if they are static. About 30 percent of individuals sensitive to lights are also sensitive to patterns.

Distance from the source and the color of the source can be another cause of photosensitive epilepsy.

I usually close both of my eyes but I can still see the flickering.  It is not as bad, though.

More information can be found at, https://www.epilepsysociety.org.uk/photosensitive-epilepsy#.WLyEvPnytPY  and http://www.epilepsy.com/article/2014/3/shedding-light-photosensitivity-one-epilepsys-most-complex-conditions.

 

WIFE WITH EPILEPSY

Today is Valentine’s Day.  The U.S. is not the only country that celebrates Valentine’s Day (Latin America, Japan, India, and Lebanon are just a few).  Some countries may celebrate on another day.

February 14th is not just Valentine’s Day for me.  It is also my husband’s birthday.  He gets called a Valentine Baby.  He is my Valentine, especially since his wife has epilepsy.

I want to say thank you for the best husband.  He married me knowing I had epilepsy.  My epilepsy was under control while we were dating and the first four years of our marriage.  I started having my “auras” and stopped driving.  That is where my husband’s love helped me be strong.   Finally after trying a numerous types of medications and combinations of medications, I decided to have brain surgery.  He stood by my side when others would say, “are you sure?”   He saw me bald and with a huge scar with staples where they put a plate in the place of my skull.

I couldn’t look in the mirror.  He looked at me everyday, and still said “I love You”.  I went seizure free for three years after my surgery.  Unfortunately, they came back.  Not as many per month.  He is still with me through the thick and thin.  I will always Love Him.

 

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