Fuck You Epilepsy In The Ass

[Brisketexan 104217]

Just now, Ifiwaspresident said:

My 19-yr old has been epileptic since birth. Someone upstream said something about the fear of helplessly watching your child seize. A parent’s fear truly is the most perfect fear. It cannot be improved upon.

We have been with UT Neuro in TMC the whole time, and then they’ve been great. He has run the gamut from Phenolbarbitol to Depakote to Lamictyl over the years. He’s currently 2500mg OID of Keppra and his seizures are controlled (sounds like the dosages you are taking may still be suboptimal - it takes them a while to ramp up to optimal dosing). He is actually at Camp For All right now as a counselor during the epilepsy week. Epilepsy has had profound effects on his executive processing speed and short term memory, so your symptoms aren’t surprising.

I can echo in the strongest way possible that a lack of sleep (both quality and quantity) or disruption of your Circadian Rhythm are the quickest route to breakthrough seizures. Take the best care of yourself as you can.

Have your doctors checked for lesions just to make sure you don’t have an underlying condition like MS, etc?

T&P’s to you as you’re going through this amigo. Just want you to know that you aren’t alone and people are thinking about you.

And I just want to tell you that your last line was a damned nice thing to read.  Thanks for being a good man.

And Superhero, we're pulling for you, brother.

[Superhero 8696]

The FDA finally approved CBD oil to help kids with specific types of epilepsy!

https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm611046.htm

Quote

The U.S. Food and Drug Administration today approved Epidiolex (cannabidiol) [CBD] oral solution for the treatment of seizures associated with two rare and severe forms of epilepsy, Lennox-Gastaut syndrome and Dravet syndrome, in patients two years of age and older. This is the first FDA-approved drug that contains a purified drug substance derived from marijuana. It is also the first FDA approval of a drug for the treatment of patients with Dravet syndrome.

CBD is a chemical component of the Cannabis sativa plant, more commonly known as marijuana. However, CBD does not cause intoxication or euphoria (the “high”) that comes from tetrahydrocannabinol (THC).

It is THC (and not CBD) that is the primary psychoactive component of marijuana.

“This approval serves as a reminder that advancing sound development programs that properly evaluate active ingredients contained in marijuana can lead to important medical therapies. And, the FDA is committed to this kind of careful scientific research and drug development,” said FDA Commissioner Scott Gottlieb, M.D. “Controlled clinical trials testing the safety and efficacy of a drug, along with careful review through the FDA’s drug approval process, is the most appropriate way to bring marijuana-derived treatments to patients. Because of the adequate and well-controlled clinical studies that supported this approval, prescribers can have confidence in the drug’s uniform strength and consistent delivery that support appropriate dosing needed for treating patients with these complex and serious epilepsy syndromes. We’ll continue to support rigorous scientific research on the potential medical uses of marijuana-derived products and work with product developers who are interested in bringing patients safe and effective, high quality products. But, at the same time, we are prepared to take action when we see the illegal marketing of CBD-containing products with serious, unproven medical claims. Marketing unapproved products, with uncertain dosages and formulations can keep patients from accessing appropriate, recognized therapies to treat serious and even fatal diseases.”

Dravet syndrome is a rare genetic condition that appears during the first year of life with frequent fever-related seizures (febrile seizures). Later, other types of seizures typically arise, including myoclonic seizures (involuntary muscle spasms). Additionally, status epilepticus, a potentially life-threatening state of continuous seizure activity requiring emergency medical care, may occur. Children with Dravet syndrome typically experience poor development of language and motor skills, hyperactivity and difficulty relating to others.

Lennox-Gastaut syndrome begins in childhood. It is characterized by multiple types of seizures. People with Lennox-Gastaut syndrome begin having frequent seizures in early childhood, usually between ages 3 and 5. More than three-quarters of affected individuals have tonic seizures, which cause the muscles to contract uncontrollably. Almost all children with Lennox-Gastaut syndrome develop learning problems and intellectual disability. Many also have delayed development of motor skills such as sitting and crawling. Most people with Lennox-Gastaut syndrome require help with usual activities of daily living.

“The difficult-to-control seizures that patients with Dravet syndrome and Lennox-Gastaut syndrome experience have a profound impact on these patients’ quality of life,” said Billy Dunn, M.D., director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research. “In addition to another important treatment option for Lennox-Gastaut patients, this first-ever approval of a drug specifically for Dravet patients will provide a significant and needed improvement in the therapeutic approach to caring for people with this condition.”

Epidiolex’s effectiveness was studied in three randomized, double-blind, placebo-controlled clinical trials involving 516 patients with either Lennox-Gastaut syndrome or Dravet syndrome. Epidiolex, taken along with other medications, was shown to be effective in reducing the frequency of seizures when compared with placebo.

The most common side effects that occurred in Epidiolex-treated patients in the clinical trials were: sleepiness, sedation and lethargy; elevated liver enzymes; decreased appetite; diarrhea; rash; fatigue, malaise and weakness; insomnia, sleep disorder and poor quality sleep; and infections.

Epidiolex must be dispensed with a patient Medication Guide that describes important information about the drug’s uses and risks. As is true for all drugs that treat epilepsy, the most serious risks include thoughts about suicide, attempts to commit suicide, feelings of agitation, new or worsening depression, aggression and panic attacks. Epidiolex also caused liver injury, generally mild, but raising the possibility of rare, but more severe injury. More severe liver injury can cause nausea, vomiting, abdominal pain, fatigue, anorexia, jaundice and/or dark urine.

Under the Controlled Substances Act (CSA), CBD is currently a Schedule I substance because it is a chemical component of the cannabis plant. In support of this application, the company conducted nonclinical and clinical studies to assess the abuse potential of CBD.

The FDA prepares and transmits, through the U.S. Department of Health and Human Services, a medical and scientific analysis of substances subject to scheduling, like CBD, and provides recommendations to the Drug Enforcement Administration (DEA) regarding controls under the CSA. DEA is required to make a scheduling determination.

The FDA granted Priority Review designation for this application. Fast-Trackdesignation was granted for Dravet syndrome. Orphan Drug designation was granted for both the Dravet syndrome and Lennox-Gastaut syndrome indications.

The FDA granted approval of Epidiolex to GW Research Ltd.

The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.

 

I'm stoked because it's only a matter of time before they approve it for adults. I had a bad week last week where I had seizure symptoms 4 days in a row. On Monday, I had 3 pretty strong "blips", and I immediately sat on the floor thinking I might fall again. I slept a lot that night, but on Tuesday, I still shut myself in the "mother's room" with the lights off to calm my brain. The other days, there were a few blips, but the recovery time was almost immediate.

I'm gonna buy some CBD oil to supplement the Lamotrigine. Of course I want the THC-free variety. Anyone know which brand is good? Like I said before, my company has a zero drug policy. I don't want any trace of it in my body.

 

[bernorange 8344]

I'm not an expert on the subject, but what little I have learned about it indicates that there is little in the way of regulation (or presumably, quality control) on the manufacturing of cbd oil as it's so new.  If you aren't sourcing cbd oil from a name brand (like the Epidiolex mentioned above, or the oils being sold in Texas through licensed participants in the new Compassionate Use program), it's basically a crap shoot.

The FDA approval is an important milestone in the development of the industry though.  Doctors often prescribe drugs "off label" for adults where a drug is generally approved for kids (or for different diagnosis than approved).  It will likely encourage big pharma to get in the game with superior quality control.

[Jkwellborn 6614]

The FDA finally approved CBD oil to help kids with specific types of epilepsy!
https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm611046.htm

The U.S. Food and Drug Administration today approved Epidiolex (cannabidiol) [CBD] oral solution for the treatment of seizures associated with two rare and severe forms of epilepsy, Lennox-Gastaut syndrome and Dravet syndrome, in patients two years of age and older. This is the first FDA-approved drug that contains a purified drug substance derived from marijuana. It is also the first FDA approval of a drug for the treatment of patients with Dravet syndrome.

CBD is a chemical component of the Cannabis sativa plant, more commonly known as marijuana. However, CBD does not cause intoxication or euphoria (the “high”) that comes from tetrahydrocannabinol (THC).

It is THC (and not CBD) that is the primary psychoactive component of marijuana.

“This approval serves as a reminder that advancing sound development programs that properly evaluate active ingredients contained in marijuana can lead to important medical therapies. And, the FDA is committed to this kind of careful scientific research and drug development,” said FDA Commissioner Scott Gottlieb, M.D. “Controlled clinical trials testing the safety and efficacy of a drug, along with careful review through the FDA’s drug approval process, is the most appropriate way to bring marijuana-derived treatments to patients. Because of the adequate and well-controlled clinical studies that supported this approval, prescribers can have confidence in the drug’s uniform strength and consistent delivery that support appropriate dosing needed for treating patients with these complex and serious epilepsy syndromes. We’ll continue to support rigorous scientific research on the potential medical uses of marijuana-derived products and work with product developers who are interested in bringing patients safe and effective, high quality products. But, at the same time, we are prepared to take action when we see the illegal marketing of CBD-containing products with serious, unproven medical claims. Marketing unapproved products, with uncertain dosages and formulations can keep patients from accessing appropriate, recognized therapies to treat serious and even fatal diseases.”

Dravet syndrome is a rare genetic condition that appears during the first year of life with frequent fever-related seizures (febrile seizures). Later, other types of seizures typically arise, including myoclonic seizures (involuntary muscle spasms). Additionally, status epilepticus, a potentially life-threatening state of continuous seizure activity requiring emergency medical care, may occur. Children with Dravet syndrome typically experience poor development of language and motor skills, hyperactivity and difficulty relating to others.

Lennox-Gastaut syndrome begins in childhood. It is characterized by multiple types of seizures. People with Lennox-Gastaut syndrome begin having frequent seizures in early childhood, usually between ages 3 and 5. More than three-quarters of affected individuals have tonic seizures, which cause the muscles to contract uncontrollably. Almost all children with Lennox-Gastaut syndrome develop learning problems and intellectual disability. Many also have delayed development of motor skills such as sitting and crawling. Most people with Lennox-Gastaut syndrome require help with usual activities of daily living.

“The difficult-to-control seizures that patients with Dravet syndrome and Lennox-Gastaut syndrome experience have a profound impact on these patients’ quality of life,” said Billy Dunn, M.D., director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research. “In addition to another important treatment option for Lennox-Gastaut patients, this first-ever approval of a drug specifically for Dravet patients will provide a significant and needed improvement in the therapeutic approach to caring for people with this condition.”

Epidiolex’s effectiveness was studied in three randomized, double-blind, placebo-controlled clinical trials involving 516 patients with either Lennox-Gastaut syndrome or Dravet syndrome. Epidiolex, taken along with other medications, was shown to be effective in reducing the frequency of seizures when compared with placebo.

The most common side effects that occurred in Epidiolex-treated patients in the clinical trials were: sleepiness, sedation and lethargy; elevated liver enzymes; decreased appetite; diarrhea; rash; fatigue, malaise and weakness; insomnia, sleep disorder and poor quality sleep; and infections.

Epidiolex must be dispensed with a patient Medication Guide that describes important information about the drug’s uses and risks. As is true for all drugs that treat epilepsy, the most serious risks include thoughts about suicide, attempts to commit suicide, feelings of agitation, new or worsening depression, aggression and panic attacks. Epidiolex also caused liver injury, generally mild, but raising the possibility of rare, but more severe injury. More severe liver injury can cause nausea, vomiting, abdominal pain, fatigue, anorexia, jaundice and/or dark urine.

Under the Controlled Substances Act (CSA), CBD is currently a Schedule I substance because it is a chemical component of the cannabis plant. In support of this application, the company conducted nonclinical and clinical studies to assess the abuse potential of CBD.

The FDA prepares and transmits, through the U.S. Department of Health and Human Services, a medical and scientific analysis of substances subject to scheduling, like CBD, and provides recommendations to the Drug Enforcement Administration (DEA) regarding controls under the CSA. DEA is required to make a scheduling determination.

The FDA granted Priority Review designation for this application. Fast-Trackdesignation was granted for Dravet syndrome. Orphan Drug designation was granted for both the Dravet syndrome and Lennox-Gastaut syndrome indications.

The FDA granted approval of Epidiolex to GW Research Ltd.

The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.

 
I'm stoked because it's only a matter of time before they approve it for adults. I had a bad week last week where I had seizure symptoms 4 days in a row. On Monday, I had 3 pretty strong "blips", and I immediately sat on the floor thinking I might fall again. I slept a lot that night, but on Tuesday, I still shut myself in the "mother's room" with the lights off to calm my brain. The other days, there were a few blips, but the recovery time was almost immediate.
I'm gonna buy some CBD oil to supplement the Lamotrigine. Of course I want the THC-free variety. Anyone know which brand is good? Like I said before, my company has a zero drug policy. I don't want any trace of it in my body.
 

Damn man. That sucks. Hope you get some relief soon.

[kevwun 15569]

I would try talking to someone in Colorado because they are at the forefront of it.  Maybe start with this organization?

https://www.epilepsycolorado.org/about/contact/

[Superhero 8696]

I just e-mailed them asking for an alternative to Epidiolex, at least until my doc can give me a prescription for it

[cactusflinthead 27588]

I hate to tell you but those construction workers smoke weed. Dried urine. Or so I have been told.

[Superhero 8696]

A few updates:

1. I spoke to a neurologist friend at church, and he actually recommended against using CBD oil that's in the marketplace. His argument was, like most supplements, there is no regulation, and quality control in terms of purity and dosage is all over the place. With seizure patients, it's important to get consistent dosages, and he's run into instances where seizure patients stopped taking CBD oil because they simply ran out and had grand mals again. I thought it was a good warning, and will probably try it anyway.
    
2. I had focal seizures for 4 days last week and asked my doc to bump me up to 300 mg/day of Lamotrigine. I'm not sure if that'll do the trick, because my seizures come and go, and I could be fine for a week with no medication; and then get hit for 3-4 days even when I've upped my medication, and slept 8-9 hours several days in a row. We shall see.
    
3. After my grand mal on 05/30, I gave back my company car because I thought my doc wouldn't let me drive for at least  6 months. I found out indirectly (through my company HR) that my doc put me on restricted duty for only 3 months, and thinks I should be okay afterwards. Whether the DMV lets me drive is another question, but good to know that my doc isn't too worried about my condition.

[bernorange 8344]

Re:  #2, one of my wife' docs once described the process as the body/mind having a buffer.  The mind/body can tolerate triggers until the buffer gets full.  It's like a dam bursting or a muscle exercised to the point of failure. Not perfect analogies, but the point is the mind/body is not a solid state. Sometimes it has higher tolerance for stress. Sometimes not.

[Trey3216 15321]

Out of town for a wedding in FayetteNam.   Wife (who I’ve talked about on the site that has no name) had a pretty bad gran mal this morning.  Dammit man.   Awful shit to see.   Will update.   Prayers appreciated 

Edited July 29, 2018 by Trey3216

[Jkwellborn 6614]

Damn man. Hate to hear that.

[bernorange 8344]

Weddings (happy occassions) fall into that "good stress" category I was talking about earlier.  Sorry to hear about the seizure.  

[Trey3216 15321]

Well she’s resting pretty well.   We got discharged at around 1:30/2.  Staying an extra night so she can continue to rest prior to making a 7 ish hour drive home tomorrow.   Long stressful day.   I’m tired.   Thanks for the thoughts and kind words y’all.   

[Superhero 8696]

Good to hear your wife is doing better. I’m assuming with the wedding, there were late nights, lack of sleep and some drinks involved?

[Trey3216 15321]

4 minutes ago, Superhero said:

Good to hear your wife is doing better. I’m assuming with the wedding, there were late nights, lack of sleep and some drinks involved?

We were up until about 1 fri and sat night, so not too far down the road of normal.   Yesterday was muggy as shit though, and we went to the Crystal Bridges Art Museum deal and walked around downtown Fayetteville a bunch.  The wedding/reception were both outdoor as well and yes some drinks were consumed, but she’s not a very heavy drinker.   I guess the amalgam of all things led her down that road.   I just have to be more careful and cognizant in my monitoring going forward.  Not to mention that I’ll be taxiing for a while.   She hasn’t had one in 5 years.   Being 7 hours from home didn’t help the situation

[Superhero 8696]

I had a relatively scary seizure 2 weeks ago. I was trying to make some silly point to my wife about when to schedule the house cleaner, and was going turbo speed cleaning up the house.

As I knelt down to clean something. a strong “blip” hit me. I tried to power through it, but the blips kept coming Hardy mad strong, and I HAD to sit down, then thought I better lay down. 

While I was lying down, there was a point where I KNEW it had passed. It’s hard to explain, but I just knew it was done and I’d be okay.

Leading up to the seizures, I was back to my bad sleeping habits again. I need a Terry Tate or someone to kick my ass next time I’m up past 11.

 

 

[Superhero 8696]

1 hour ago, Trey3216 said:

We were up until about 1 fri and sat night, so not too far down the road of normal.   Yesterday was muggy as shit though, and we went to the Crystal Bridges Art Museum deal and walked around downtown Fayetteville a bunch.  The wedding/reception were both outdoor as well and yes some drinks were consumed, but she’s not a very heavy drinker.   I guess the amalgam of all things led her down that road.   I just have to be more careful and cognizant in my monitoring going forward.  Not to mention that I’ll be taxiing for a while.   She hasn’t had one in 5 years.   Being 7 hours from home didn’t help the situation

I’m not a heavy drinker either, but had some minor seizures the day after I had HALF a beer during dinner.

I’ve cut alcohol for the time being until I get my sleep under and control and then use my healthy sleep state self, vs a healthy sleep + alcohol to see if it makes a difference. 

[Superhero 8696]

So it's been 4.5 months since my grand mal. I've been over-tired again with recent work deadlines, I've also been battling flu-like symptoms. Despite that, I've been fairly successful with getting enough sleep and staying away from caffeine.

I had a phone consultation with my neurologist today, and she said I could start driving again. It'll be up to the DMV to decide what they want to do. So I guess that's that's worth celebrating!

[Pato del Muerto 52227]

I can’t believe you will get your license even though all involved know that you are Asian. 

[Jkwellborn 6614]

I thought it was 6 months or did they change it? Glad to see the improvements for lack of a better term.

[bernorange 8344]

44 minutes ago, Jkwellborn said:

I thought it was 6 months or did they change it? ...

It varies by State.  California is a 3 month State.

https://www.epilepsy.com/driving-laws

[Superhero 8696]

21 hours ago, Pato del Muerto said:

I can’t believe you will get your license even though all involved know that you are Asian. 

I dunno either.

Must have one of those last names that has an European origin.*

 

Shit you not, I once got an offer from some Ancestry-tracing company (this was before internet days) telling me all about how my ancestors came from Holland. 

[XYZ 2154]

On 10/9/2018 at 1:38 AM, Superhero said:

So it's been 4.5 months since my grand mal. I've been over-tired again with recent work deadlines, I've also been battling flu-like symptoms. Despite that, I've been fairly successful with getting enough sleep and staying away from caffeine.

I had a phone consultation with my neurologist today, and she said I could start driving again. It'll be up to the DMV to decide what they want to do. So I guess that's that's worth celebrating!

You are married with kids, right? Does your wife work? Have you considered quitting your job and having your wife be the bread winner?

[Brisketexan 104217]

14 hours ago, Superhero said:

I dunno either.

Must have one of those last names that has an European origin.*

 

Shit you not, I once got an offer from some Ancestry-tracing company (this was before internet days) telling me all about how my ancestors came from Holland. 

[Superhero 8696]

10 hours ago, XYZ said:

You are married with kids, right? Does your wife work? Have you considered quitting your job and having your wife be the bread winner?

It's possible, we'll struggle a bit, and I love my work too much to quit.

My problem at work is I like leading the difficult projects. That usually ends up with me stressing out 'til the very end. If I leave my job to do something more relaxing, I'll probably end up taking another difficult mountain to climb and stress out about that.

Edited October 11, 2018 by Superhero

[Longhorn Al 440]

Does epilepsy in the ass cause diarrhea?

[bernorange 8344]

7 hours ago, Longhorn Al said:

Does epilepsy in the ass cause diarrhea?

Not necessarily diarrhea, but incontinence is fairly common during tonic clonic seizures.

[RollLeft 5039]

I have nothing to contribute to this thread except my thoughts, concerns and hope for each of your situations.  Damn.  Much rest and grace to you and your families.  

[Jkwellborn 6614]

As bad as gran mals suck and make you sore after, I don’t want my kids to ever have to see me having one. My wife has seen it once, or at least the after effects.

[bernorange 8344]

I have seen my wife have grand mals/tonic clonics at least a thousand times (literally) over the last ~20 years.  Our children have seen her have one hundreds of times.  They've seen her taken to the ER in ambulances numerous times.  It can be traumatic to witness, but people are resilient.

[Superhero 8696]

My kids didn’t see me convulsing, but they saw me on the ground, and helped my wife get her phone to call 911.

i asked them later to see if they were scared about what happened, and they both said no. Probably too young to know what really went down.

But I feel a little tingle of guilt when I tell my kids that I don’t feel so well (whether it’s a headache or upset stomach), and my 3 year old will ask me if I’m having a seizure, and if I need to go to the hospital. 

[Jkwellborn 6614]

I have seen my wife have grand mals/tonic clonics at least a thousand times (literally) over the last ~20 years.  Our children have seen her have one hundreds of times.  They've seen her taken to the ER in ambulances numerous times.  It can be traumatic to witness, but people are resilient.

My kids are 8 and 4. It would probably scar my 8 year old daughter. The boy would laugh his ass off most likely.

That said, I haven’t had one in over a decade so they’ve never known it. My last one I was in the shower and the two emts were female. They couldn’t get me out. Called a lift assist. Happened to be this old nosed bastard on the fire dept and one of my buddies growing up. Lol

[A Cellar Honker 19]

I had childhood epilepsy up to the point where I started using marijuana my senior year in high school.  At that point, my medications (Dilantin and Mysoline) started making me feel funny (they never had any discernible effect on me up to then) so I stopped taking them. That was 40 years ago.   Whether my outgrowth of epilepsy was caused by marijuana use or was just a coincidence, I don’t know.  But I have always felt that it had something to do with it.

[Shoxthemonkey 1973]

20 hours ago, Jkwellborn said:

My kids are 8 and 4. It would probably scar my 8 year old daughter. The boy would laugh his ass off most likely.

That said, I haven’t had one in over a decade so they’ve never known it. My last one I was in the shower and the two emts were female. They couldn’t get me out. Called a lift assist. Happened to be this old nosed bastard on the fire dept and one of my buddies growing up. Lol

My kids were 10 and 8 when my wife had her first gran mal. I held onto her to keep her from thrashing into something and getting hurt worse while the oldest, my son, called 911. Neither kid was scarred by the experience. In fact, they both learned what to do and  both of them were alone with her during later episodes. Each was able to get her through it and then call the doctor. It probably made them grow up a little faster but I don't think it harmed them at all. Kids are pretty tough.