Frequently Asked Questions​ about Epilepsy

Self-Expression:

The residual effects of a seizure are mind-boggling.

 

Robert A. Fiore,

Connecticut Epilepsy Advocate

Q: What is Epilepsy?

A: Epilepsy is a neurological condition that from time to time produces brief disturbances in the normal electrical functions of the brain. Epilepsy affects more than 50 million people in the world, over 3 million people in the United States and approximately 60,000 people in Connecticut. 

 

Q: What do you do when a person has a seizure?

A: Before we respond to this question, please understand this: calling 911 is sometimes not necessary…but sometimes it is paramount. If you know the person well enough, what their seizures look like and how they react, then you may not need to call. If you don't know the person or are just unsure about the situation, call 911 immediately. And then, do the following: 

 

  • Clear the area and try to lay the person down.
  • If you have a pillow, put it under their head.
  • Check to see if the individual is wearing a Medic Alert Bracelet or something similar to it, like a wristband or neck chain.
  • Check the individual's cell phone for I.C.E. Numbers as well.
  • Keep track of the time. After three minutes have passed from when the seizure started, be ready to call 911.
  • When the EMTs arrive, please inform them of everything that happened.
  • Never put anything in a person's mouth. It is physically impossible to swallow one's tongue. That is a myth. 

 

Q: Is there a cure for Epilepsy?

A: Unfortunately, there is not. However, advances have been made to determine what causes seizures and how medications, surgery, vagus nerve stimulation (VNS) and the ketogenic diet can reduce or eliminate them.

 

Q: Are there medications for Epilepsy?

A: Presently there are over 50 medications for epilepsy, which come in tablet, capsule, liquid and rectal injection form. 

 

Q: Is there any type of surgery to help correct Epilepsy?

A: The most common one is the temporal lobectomy surgery. You can Google “temporal lobectomy surgery” and see quite a few of them being done, or Google epilepsy surgery to see the other types. Sir Victor Horsley did one of the first documented epilepsy surgeries in 1886. (Although it may have been done earlier than that). Other surgeons that have done them are William Macewen and Sir Hugh Cairns.

 

Q: Should people living with Epilepsy consume any alcoholic beverages?

A: No, never. The consumption of any alcoholic beverages can be dangerous.

 

Q: Is there anything else that can help people living with Epilepsy?

A: The ketogenic diet, vagus nerve stimulation, and taking your medications as your doctor or neurologist has prescribed. Be consistent. Eat three meals a day. Get seven or more hours of sleep per night and always think positive. 

 

Q: What is a good way to remind yourself to take your medication?

A: Just set the alarm clock on your cell phone. 

 

Q: What is another thing you should set on your cell phone?

A: Your I.C.E. Phone numbers- (I.C.E. is an acronym for In Case of Emergency)

 

Q: What can people living with Epilepsy use to relax?

A: We recommend 10 to 15 minutes of meditation, never longer than that. Listen to relaxing music. Breathing exercises or just 10 to 15 minutes of silence.

 

Q: What is a generic medication?

A: Generic medication is copied from an original brand. 

 

Q: Is the generic medication the same as the original brand?

A: No, generic medication only contains 80% of the original prescription formula plus an additional 20% of filler and since there is no cap on how much filler can be added most generic medicines receive up to an additional 30% of filler.  There are many medications that have either been around for a very long time or the company may sell the brand, so they are only available in the generic form.

 

Q: What should you do if you feel or people you trust are telling you that you look lethargic, sluggish, lacking mental and physical alertness and activity?

A: Tell your doctor(s) and ask what could be causing this.

 

Q: What is our “opinion” about the use of Medical Marijuana in the form of Cannabidiol AKA Cannabis Oil for people severely suffering from Epilepsy?

A: It is our “opinion” that if a person suffering from Epilepsy, be it severe generalized Epilepsy, LGS (Lennox-Gastaut Syndrome) or Dravet Syndrome, has tried almost every medication and/or treatment and their medical doctor and/or their neurologist feel they should try it, and more importantly, if the family members who take care of said person – i.e. parents, siblings, blood relatives - all agree, they should do the research, go to a Medical Marijuana Dispensary Facility and speak with the doctor there.  However, let it be known the only type we will recommend or endorse is Medical Marijuana in the form of Cannabidiol AKA Cannabis Oil and it must have the THC-(Tetrahydrocannabinol), locked in at 0.3% or Charlotte’s Web, the one sold with the level of 0.0%.  Those and only those are the types we recommend. 

 

For the record, we believe in it so much that for three years, we submitted a Bill Proposal for Cannabis Oil to the Connecticut State Legislature. The first year, I submitted it too late; the second year what I submitted was similar to about 6 others Proposals. But as they say, the third time's the charm. On November 23, 2015, Sarah Cody, a reporter who at that time worked at FOX 61, did a feature story titled “Mom Believes Marijuana Plant Oil Can Help Kids with Epilepsy” and it helped more people to learn about it. We kept sending in e-mails until December 2015.  Then the mom who was interviewed (her son suffers from Lennox-Gastaut Syndrome) she and I went to Hartford in January 2016, and we spoke to the co-chairs of the Public Health Committee. After a few more weeks of phone calls and e-mails, it was submitted as a proposal. 

 

On Wednesday, March 2, 2016, throngs of people went to the Connecticut State Capitol to testify on Proposed HB 5450 - An Act Concerning the Palliative Use of Marijuana.  It went through five stages before it could be finalized to see if it could pass.  We are proud to say we were at the Connecticut State Capitol in Hartford on Friday, April 29, 2016.  We went inside at 1:30 p.m.  HB 5450 was brought up at 8:08 p.m.; then at 11:43 p.m. HB 5450 passed.   You can read all about it by going to our News page and clicking the tab below.

 

Q: What is Epilepsy?

A: Epilepsy is a neurological condition that from time to time produces brief disturbances in the normal electrical functions of the brain. Epilepsy affects more than 50 million people in the world, over 3 million people in the United States and approximately 60,000 people in Connecticut. 

 

Q: What do you do when a person has a seizure?

A: Before we respond to this question, please understand this: calling 911 is sometimes not necessary…but sometimes it is paramount. If you know the person well enough, what their seizures look like and how they react, then you may not need to call. If you don't know the person or are just unsure about the situation, call 911 immediately. And then, do the following: 

 

  • Clear the area and try to lay the person down.
  • If you have a pillow, put it under their head.
  • Check to see if the individual is wearing a Medic Alert Bracelet or something similar to it, like a wristband or neck chain.
  • Check the individual's cell phone for I.C.E. Numbers as well.
  • Keep track of the time. After three minutes have passed from when the seizure started, be ready to call 911.
  • When the EMTs arrive, please inform them of everything that happened.
  • Never put anything in a person's mouth. It is physically impossible to swallow one's tongue. That is a myth. 

 

Q: Is there a cure for Epilepsy?

A: Unfortunately, there is not. However, advances have been made to determine what causes seizures and how medications, surgery, vagus nerve stimulation (VNS) and the ketogenic diet can reduce or eliminate them.

 

Q: Are there medications for Epilepsy?

A: Presently there are over 50 medications for epilepsy, which come in tablet, capsule, liquid and rectal injection form. 

 

Q: Is there any type of surgery to help correct Epilepsy?

A: The most common one is the temporal lobectomy surgery. You can Google “temporal lobectomy surgery” and see quite a few of them being done, or Google epilepsy surgery to see the other types. Sir Victor Horsley did one of the first documented epilepsy surgeries in 1886. (Although it may have been done earlier than that). Other surgeons that have done them are William Macewen and Sir Hugh Cairns.

 

Q: Should people living with Epilepsy consume any alcoholic beverages?

A: No, never. The consumption of any alcoholic beverages can be dangerous.

 

Q: Is there anything else that can help people living with Epilepsy?

A: The ketogenic diet, vagus nerve stimulation, and taking your medications as your doctor or neurologist has prescribed. Be consistent. Eat three meals a day. Get seven or more hours of sleep per night and always think positive. 

 

Q: What is a good way to remind yourself to take your medication?

A: Just set the alarm clock on your cell phone. 

 

Q: What is another thing you should set on your cell phone?

A: Your I.C.E. Phone numbers- (I.C.E. is an acronym for In Case of Emergency)

 

 

Q: What can people living with Epilepsy use to relax?

A: We recommend 10 to 15 minutes of meditation, never longer than that. Listen to relaxing music. Breathing exercises or just 10 to 15 minutes of silence.

 

Q: What is a generic medication?

A: Generic medication is copied from an original brand. 

 

Q: Is the generic medication the same as the original brand?

A: No, generic medication only contains 80% of the original prescription formula plus an additional 20% of filler and since there is no cap on how much filler can be added most generic medicines receive up to an additional 30% of filler.  There are many medications that have either been around for a very long time or the company may sell the brand, so they are only available in the generic form.

 

Q: What should you do if you feel or people you trust are telling you that you look lethargic, sluggish, lacking mental and physical alertness and activity?

A: Tell your doctor(s) and ask what could be causing this.

 

Q: What is our “opinion” about the use of Medical Marijuana in the form of Cannabidiol AKA Cannabis Oil for people severely suffering from Epilepsy?

A: It is our “opinion” that if a person suffering from Epilepsy, be it severe generalized Epilepsy, LGS (Lennox-Gastaut Syndrome) or Dravet Syndrome, has tried almost every medication and/or treatment and their medical doctor and/or their neurologist feel they should try it, and more importantly, if the family members who take care of said person – i.e. parents, siblings, blood relatives - all agree, they should do the research, go to a Medical Marijuana Dispensary Facility and speak with the doctor there.  However, let it be known the only type we will recommend or endorse is Medical Marijuana in the form of Cannabidiol AKA Cannabis Oil and it must have the THC-(Tetrahydrocannabinol), locked in at 0.3% or Charlotte’s Web, the one sold with the level of 0.0%.  Those and only those are the types we recommend. 

 

For the record, we believe in it so much that for three years, we submitted a Bill Proposal for Cannabis Oil to the Connecticut State Legislature. The first year, I submitted it too late; the second year what I submitted was similar to about 6 others Proposals. But as they say, the third time's the charm. On November 23, 2015, Sarah Cody, a reporter who at that time worked at FOX 61, did a feature story titled “Mom Believes Marijuana Plant Oil Can Help Kids with Epilepsy” and it helped more people to learn about it. We kept sending in e-mails until December 2015.  Then the mom who was interviewed (her son suffers from Lennox-Gastaut Syndrome) she and I went to Hartford in January 2016, and we spoke to the co-chairs of the Public Health Committee. After a few more weeks of phone calls and e-mails, it was submitted as a proposal. 

 

On Wednesday, March 2, 2016, throngs of people went to the Connecticut State Capitol to testify on Proposed HB 5450 - An Act Concerning the Palliative Use of Marijuana.  It went through five stages before it could be finalized to see if it could pass.  We are proud to say we were at the Connecticut State Capitol in Hartford on Friday, April 29, 2016.  We went inside at 1:30 p.m.  HB 5450 was brought up at 8:08 p.m.; then at 11:43 p.m. HB 5450 passed.   You can read all about it by going to our News page and clicking the tab below.

 

— The Connecticut Epilepsy Advocate, Inc. is a recognized 501 (c) (3) Nonprofit Organization. —

(203) 874-8731​