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

NO GENERIC EPILEPSY MEDS FOR ME

If your doctor says brand name medication on the prescription, then why are patients made to take generic medication?  I know that generic medication is cheaper.  Drug stores want to save money so that they can make money.  Yet they make you think that they are saving you money. Think this through.  Usually the cheaper deals aren’t better for the money.  Well, most generic medications don’t do the work they are supposed to do. (especially epilepsy medications)  I know this for a fact!  I was seizure free for seven years then had to take a generic brand medication.  This was a decision made by my insurance company.  After one day of the generic medicine, I had the worst seizure that I had ever had.

a summary of generic vs. brand name meds……http://www.dbsalliance.org/pdfs/GenericRx.pdf

I have a question.  Why do insurance companies decide which medicine is best for a patient, brand name or generic?  Aren’t doctors the ones that went to school for that?  Epilepsy patients and family members are the ones that know when seizures occur.  High blood pressure patients can tell when they don’t feel right.

Can we make a deal?  If you try a generic brand and it doesn’t work, then can you take the brand name at the generic cost for the rest of your life?  Think of the money that will be saved!  The patient won’t have to be put through more tests.  That means you don’t pay radiologists, an x-ray tech, or use of the equipment for the test.  The brand name medicine can be the cure for you!  Brand name medicine cured me for seven years until I was made to switch.  Now I have break through seizures.  It upsets me every time that I get told that I have to take generic.

Being the EPILEPSY ADVOCATE that I am, I explain the difference between the two.  It doesn’t matter if they are a pharmacist.  I have my story to tell.  I don’t want anyone else to be in a wreck like my daughters and me.

PRINCESS JASMINE

A pretty name for a beautiful girl named  Jasmine.  I met her mother, Dominique, on Google+ after starting a community for EPILEPSY. After talking to Dominique online and feeling all the love a mom and the rest of the family has for their “princess”, I had to write about them.

Jasmine has Dravet Syndrome.  Dravet Syndrome is another form of seizures that begin at infancy.  It is also called Severe Myoclonic Epilepsy of Infancy.  Patients have frequent and poor control of their seizures, delay in development, and there is a higher rate of Sudden Unexplained Death in Epilepsy (SUDEP) with Dravet Syndrome.  More information at, http://www.dravetfoundation.org/dravet-syndrome/what-is-dravet-syndrome.

Jasmine’s seizures started when she was four months old.  Every year the seizures would get worse.  Shaking and if she was standing, she would fall to the floor.  There would be as many as 20-50 grand mal seizures a day.  After seeing Jasmine go through this for 12 years and multiple doctors telling the family they didn’t know what was wrong.  Finally a doctor they saw knew what the diagnosis was.  In 2012, Jasmine was 13, surgery was the answer.  The answer was removing the corpus callosum.  The corpus callosum connects the left and right side of the brain.

During the surgery, the doctors lost Jasmine three times.  Dominique said it was by the grace of God and prayer that brought her back.  The doctors said that Jasmine might not walk or talk after the surgery.  She proved them wrong!  She has a wheelchair she uses when she hurts while walking, and can talk.  She has different forms of seizures and now 15-20 a day, not as many as 50. Dominique still worries about the seizures that occur during the night.  I wish people would understand that epilepsy during the night can kill during
the night.

Princess Jasmine would have a great day without having a seizure, and singing in church. The next day have 15, but still have a smile on her face.  Praying to God and putting Jasmine in God’s hands, God will watch over her, said Dominique.  Jasmine didn’t have to go to the hospital.  Doing great while having therapy, Jasmine went to SCHOOL in December in 2014!  SHE NEVER GIVES UP!

After never giving up, January 2015 was another month that was a horrible way to start the New Year.  Finding a bleed in her brain, after surgery they were able stop the bleed.  Jasmine being strong, was able to start physical therapy by the end of January.  A fighter that never gives up!  By October 2015, The seizures didn’t get better.  By November, another visit to the hospital.  Dominique says, “Dravet is no joke our children need a cure…”

I bet you can guess.  December comes and Jasmine can celebrate Christmas out of the hospital!  Visiting Santa and spending time with her family.  The family wants to find a cure!  They have a group of people raising money called Dreams On Wings.

I am sorry this is the longest story of people with epilepsy.  Jasmine and her family touch my heart.  I cry with the good and the bad times.

I want to end the with the happiest and most beautiful picture of a PRINCESS.  This will bring tears of joy and happiness!

DOGS FOR EPILEPSY PATIENTS

There are service dogs, therapy dogs, and seizure dogs.  Dog are amazing!  Service dogs can be for autism, hearing, mobility, and psychiatric service.

Seizure dogs can be response and/or alert.  Seizure alert dogs are able to detect when a seizure is going to occur.  It’s amazing that a dog can tell a difference in your motor skills and changes in your smell ten to twenty minutes before the seizure occurs.  Only fifteen percent of dogs have the ability to foresee a seizure.

Seizure response dogs are trained.  They are trained to help or assist during or after a seizure.  These dogs can call 911 by pushing a button on the phone, turn a person on their side to keep them from choking, or alert someone by barking.  They also can help people who are in postictal state.  Postictal state is the time after a seizure where the person is sleepy, confused, or disoriented.  The dog can help a person get up and lead them to a chair or a place to lie down.  While with this person after six months, the response dog can become alert and can foresee a seizure.

I find myself lucky.  My dog is an alert dog.  He didn’t have to be trained.  I have an aura before my seizure.  After noticing  “Scooter” staying close to me when I would have an aura or have a seizure, I knew he was my seizure dog.  There is a long waiting list for seizure dogs.  They are also expensive.

Every year, the physician’s office that I volunteer for has a dog show.  They raise money for seizure dogs.  The owners come to the show with their dogs dressed up.  One year I saw two dogs dressed up like Minnie and Mickey Mouse.  I’ll post pictures after the show.

Thank you service dog central, http://www.servicedogcentral.org/content/changes for the information.

 

DOGS FOR EPILEPSY

Dogs understand what you say and how you feel.  There was a study done in Hungary that did functional MRIs on a group of dogs.  Scanning the dog’s brain while the trainer was talking to them showed that the left hemisphere of their brain was to understand word.  The right hemisphere of their brain processed the trainer’s pitch in the voice.  Just like us, dogs can tell the difference in the pitch of someone’s voice. A dog can tell by the positive pitch that they are being praised.  The trainer used a positive but neutral voice.   This showed that the dog pays attention to what we say and the tone we use.  Thirteen dogs of different species were researched.  Other researches say that the research study should use a larger number of dogs.

Having epilepsy, I know that my dog understands me.  He can tell when I have a bad day.  My epilepsy can give me warnings.  If I haven’t slept good for a few nights is one warning.  My dog stays by my side.  He doesn’t beg for anything but a belly rub once and a while.  He wasn’t even trained to understand epilepsy.

Dr. Dean, a neurologist that I volunteer for, has a few dogs in her office.  They help with the children that are not wanting to be seen.  The dog helps calm them down so that the doctor and parents can talk.  The dog also gives a signal about how the child interacts.

Some researchers say more studies on dogs are needed more in depth.  I can tell you that I know personally that a dog understands how you feel and what would help you.

Dr. Dean has a dog show every year.  Some of the dogs are dressed up letting the owners show their love for them, and show the dog off.

If you have a dog that helps your health.  Send a picture to the Epilepsy Institute of NC.

1311 Westbrook Plaza Drive
Suite 100
PO Box 24458
Winston Salem, NC  27114-4458

or share by posting the picture on our visitors page on the website for the office.   www.eiofnc.org

Thank you Winston-Salem Journal for the article.

EPILEPSY MEDICINE RECALL

After reading this information from the Epilepsy Foundation, I wanted to spread the word.  If you take Lamotrigine Orally Disintegrating Tablet (ODT) 200 mg produced by Impax Laboratories. , the FDA issued a drug warning!!  The label on the packaging labeled incorrect. The lot that is affected, #502240, was distributed between June 13, 2016, and August 10, 2016.  Ask your pharmacist about the warning and check the lot number.

Check http://www.fda.gov/Safety/Recalls/ucm518477.htm for information about the Impax Laboratories.

Thank you again Epilepsy Foundation.  http://www.epilepsy.com/article/2016/8/fda-issues-safety-alert-improperly-labeled-lamotrigine

If you know anyone that takes this medication, please give them this information.

 

NEED TO KNOW ABOUT EPILEPSY AND VNS

It’s been a little over a year since I had my vagal nerve stimulator added to my fight against my seizures.  A VNS is like a pacemaker for your brain.  It gets programmed to send an electrical pulse to your brain.  There are two ways to control the VNS.  The neurologist programs it to send electrical pulses to the area of your brain where the seizures are generated.  The second way to control the electrical pulse is controlled by you.  You have a high power magnet that you use to help control them.  Even though the VNS is programmed to send a pulse, between 30 seconds to five minutes, you can use the magnet to swipe across the VNS when you feel an aura. The aura can warn you about a seizure.

Things you need to know about a VNS.  The vagal nerve is close to the voice box.  Whenever the pulse is generated your voice changes.  Depending on the person, the voice gets lower or softer, and can also cause vocal nerve paralysis.  It also can cause shortness of breath and/ or coughing.  The magnet you carry to use with the VNS can interfere with some electrical equipment.  Hearing aids and transmitter radios between 30kHz to 100kHz may be affected.  The magnet can damage credit cards, certain TVs, and computer disks.  To not cause damage, keep the electrical equipment 10 inches away from the magnet.

One thing I never thought about was a MRI.  Magnetic resonance imaging uses strong electrical pulses.  Being an electrical device, those are not allowed in the exam room.  The electrodes in the VNS can heat up!  Heat up, I don’t think so!  An x-ray and/or CT exams are the alternative.

Important information for people who have a VNS, and for epilepsy awareness.

NORTH CAROLINA AND MEDICAL MARIJUANA

 

The Center for Disease Control says that marijuana is less addictive than drinking and smoking.  A survey done by The Public Policy Polling, only 18% North Carolinians are against medical marijuana.  This survey was done before House Bill 983 (Legalizing and taxing medical marijuana).

Most everyone know that Marijuana is legalized in Colorado.  Parents with children that have intractable epilepsy, uncontrolled with treatment, either moved or made trips to Colorado for marijuana with low THC.  Parents or adults that use marijuana to help use a ratio of CBD oil to THC that works best to help control their epilepsy.  Legislation wants the THC to be low or nonexistent.  North Carolina ratio has to be 10%  CBD oil to less than 0.03% THC.

North Carolina House Bill Act 766 went effective 8-1-16, signed by Governor McCrory.  This law states that a physician can authorize the caregiver or parents illegal exemption for intractable epilepsy.

On April 26, 2016 House Bill Act 983 was introduced.  This bill will let patients and caregivers possess marijuana legally.  You can find the quality criteria to possess marijuana with THC legally in North Carolina, and the taxation rates in an article located in https://ncnorml.com/tag/north-carolina-medical-marijuana/.

 

This information can be found in https://ncnorml.com/tag/north-carolina-medical-marijuana/.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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