129 posts in the category “Epilepsy”

Cannabidiol (CBD) oil and product FAQs: Fad or effective? Legal or not?

Posted May 29th, 2018 by

Trending: Cannabidiol (CBD) oil, gummies, tinctures and more. Why are cannabis products gaining popularity as medical treatments and in general? As more states have legalized medical marijuana, more people have shifted their views on cannabis treatments (like former Speaker of the House John Boehner’s recent change of heart). And last month, an advisory panel at the U.S. Food and Drug Administration (FDA) unanimously recommended a medication made from CBD for some forms of epilepsy.

CBD comes from cannabis/marijuana but has some key differences. So, let’s take a closer look at CBD products and some FAQs, like, do they work and are they legal?

What is CBD?

Short answer: Cannabidiol (pronounced canna-bid-EYE-ol) or CBD is a chemical found in cannabis plants that does not produce a “high.”

More info: Cannabis plants can produce more than 100 different types of cannabinoids, a type of chemical that reacts with receptors in the brain. The two most common cannabinoids found in medical marijuana are THC (delta-9-tetrahydrocannabinol) and CBD (cannabidiol). THC is responsible for producing the mental and physical effects of medical marijuana. CBD has many of the same therapeutic qualities as THC, but without psychoactive effects. (For even more info, read our report called “Weed 101: How and why patients use medical marijuana.”)

Products made purely from CBD (without THC) do not produce the psychoactive high of other medical marijuana or some CBD/THC combination products. But, as a JAMA report and some in the medical cannabis industry have pointed out, many CBD products sold online are not accurately labeled (containing much more or less CBD than the label claims, or even containing some THC when it’s not mentioned on the label).

CBD is not regulated or approved by the FDA — but they have issued warning letters to some CBD producers with misleading labels.

Many doctors (in the U.S. and internationally) are hesitant to recommend smoking cannabis or inhaling any burned plant material but may be more open to CBD products that are not smoked. (Has your doctor or provider weighed in about medical cannabis or CBD products? Make a comment below.)

Are CBD products effective?

On PatientsLikeMe, members have reported trying CBD for about 160 different reasons, including specific conditions (ALS, Parkinson’s disease, epilepsy and fibromyalgia — to name a few) and symptoms (from anxious or depressed mood to stiffness/spasticity). Below is a list of CBD or cannabis products members have reported as treatments on the site — remember to discuss your treatments with your healthcare provider, and keep in mind that treatment responses vary:

Join PatientsLikeMe to see more details through the links above and to connect with other members about their treatment experiences.

Note: CBD industry insiders advise avoiding splashy websites that offer a “free trial” of the product — by filling out a form, you may be signing up for an unwanted subscription.

Is CBD legal?

Short answer: CBD is legal under some state laws but not under federal law — so it’s pretty confusing (even to healthcare providers).

More info: As of May 2018, there are 17 states with laws specifically about legal CBD. Most state laws allowing some CBD use tend to be very specific (for example, limiting a CBD product’s THC content) and are not the same as state medical marijuana laws.

Under federal law, cannabis products (including CBD) are illegal and classified the same as marijuana (and heroin and ecstasy) as a Schedule I controlled substance. The U.S. Drug Enforcement Agency (DEA) made headlines in Indiana (where some CBD is legal) a few months back when DEA spokesman Rusty Payne told the local news that CBD is illegal under federal law, but is not the DEA’s main focus. “We are in the middle of an opioid crisis in this country,” Payne said. “That’s our biggest priority right now. People are not dying from CBD. Some would argue lives are being saved by CBD. Are we going to get in the middle of that? Probably not.”

Last year, U.S. Rep. Morgan Griffith introduced a bill called the “Compassionate Access Act” to encourage the federal government to remove marijuana from “Schedule I” classification, exclude CBD from the definition of marijuana in order to allow better medical access, and regulate CBD products to ensure they’re low in THC. So far, the bill has only bounced around to various congressional subcommittees.

Have any questions, comments or feedback on CBD products? Make a comment below or — even better — become a PatientsLikeMe member to discuss this topic in the forum and see more treatment evaluations from people living with your condition.

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Women’s Health Week: Ginny reflects on motherhood and “the perfect storm” of epilepsy and mental health conditions

Posted May 19th, 2017 by

In honor of National Women’s Health Week, Team of Advisors member Ginny (Mrslinkgetter) shares what it’s like to live with multiple health conditions – including major depressive disorder (MDD), generalized anxiety disorder and epilepsy – as well as grief following the death of her son (who also had epilepsy and major depression). On PatientsLikeMe, hundreds of members report living with epilepsy along with depression and/or anxiety.

“I’ve had anxiety from my earliest memories,” she says. In her early 30s, she also began experiencing MDD. She was dealing with a move, very active children, and worsening migraines, pain and other symptoms.

“It was the perfect storm,” she says. Read on for more of her story, plus her tips for women dealing with multiple health conditions in their family.

My name is Ginny. I had 12 years of misdiagnosis, until I was appropriately diagnosed with epilepsy, psoriatic arthritis, major depression and anxiety.

In the middle of dealing with my own health issues, my son was diagnosed with epilepsy. I felt overwhelmed – extreme exhaustion beyond the norm for a mom and wife.

When I started Topamax, a seizure medication for my epilepsy, it raised my anxiety and I told my neurologist I had to have a depression/anxiety medication. While Topamax increased my anxiety, it also helped to lower my seizures and helped me regain my ability to think. Seizures were robbing my ability for complex thought. I still take Trokendi XR, a form of Topamax. Everyone’s response to these medications is unique, so talk with your doctor about how they affect you, especially if you have suicidal thoughts.

As a mom, I was unable to see how much my depression was impacting my parenting until I was on medication (Cymbalta) and started feeling less anxiety and depression. One month later I was traveling alone and I suddenly realized that I felt zero anxiety on the plane, elevator or city taxi – I felt freedom for the first time, ever!

“I realized my spouse and kids had a less than effective mother than they could have had during some of those years. I do not dwell on this since I cannot turn back the clock. I use this to tell other parents: I did the best that I could during those years – part of the time I did not even realize that I had depression and anxiety.”

Doctors and specialists were reluctant to diagnose me with depression. I was even placed on a depression medication at one time “to help with the migraines.” I was concerned because I did not want to be thought of as “crazy.” If my doctor had been more honest and said she felt I was depressed and I should try this medication, it would have been wiser. A doctor who can say, “sometimes depression also causes physical symptoms” – true fact – helps the patient to understand this and make informed health care decisions. 

“Being a mom when you have many physical and emotional issues is very challenging. I often put my children’s needs first. I got to the point when I knew I had to take care of my needs.”

When I did this, I knew I was doing the best for all of us. I could not take care of them if I was too depressed, too anxious or in too much physical pain. I teach this to other parents, at well.

My son’s anxiety was noticeable even at age 3. He was diagnosed with it formally at age 11, but not placed on medications for depression and anxiety until after his first two suicide attempts at age 15.

Sam’s mental health issues seemed intermingled with his epilepsy. They can be bi-directional, meaning they can occur before or after one another, according to Dr. Andres Kanner, who has studied how they’re related. Depression is the psychiatric disorder that occurs most frequently with epilepsy (affecting 20 to 50% of people with epilepsy, depending on epilepsy type). Learn more here. The suicide risk in people with epilepsy is more complicated. If you or someone you know expresses suicidal thoughts, please seek help through crisis resources like these.

Sam’s health issues taught me that we are so much more than a list of conditions. He taught me how to deal with – as well as how to advocate for – a person trying to cope with these life-and-death conditions. I learned how to speak to him and the importance of including people – a child, teen or adult – in decisions about their care.

I became an advocate at the national and state level so that our representatives could begin to understand what patients and families endure.

I found a program through the Epilepsy Foundation and asked if he wanted to apply to go to Washington D.C. to talk to senators and congressmen. He got in and we went. That began our lifetime odyssey.

People around the world learned about Sam’s life and death because others went on telling his story through the Epilepsy Foundation and the websites we went on. People had watched him grow from a little boy to a 20-year-old man. At 16, Sam used his artwork to help others with depression to find hope and help by creating Preventing Teen Tragedy.

I cope with my grief through continuing to help others. I had a non-profit for six years that worked with the Epilepsy Foundation. I was trained as a grief specialist. I use portions of Sam’s story with my clients at work as a Mobile Crisis family partner. I also talk to others online.

PatientsLikeMe has been a safe place for me to come and share, first while Sam was still alive. Now, having a safe place to come and read and talk has been such a great coping method for me. I cannot always share about my son fully in other places because people become uncomfortable. Sam died of suicide on his fourth attempt. 

“People forget that when a mother talks about her son, it is not about his death, it is about the fact that he lived. I have lost so many of my friends because they do not know what to say so they just stay away from me because they are not comfortable.”

Mental illness is not a weakness. Depression and anxiety are conditions of an organ in our body and should be treated as such. I can come to the website and know that others have answers to help me through the rough times. I do not need to weather this journey alone.

My tips for women and moms living with mental health conditions: 

  • Take care of yourself through a healthy diet. Depression may cause under- or over-eating. Do your best to work on changing how you eat.
  • Exercise, even when you don’t feel like doing it. I am 54 years old, work a 12.5-hour shift four days a week and do not feel like working out a lot of the time. I am adding in yoga, stretches, walking, and whatever else I can to keep moving. This helps all of my conditions.
  • Involve children in eating well and exercise. We used to kayak, play tag, walk and do what we could to stay active. When I felt moody around the kids I would tell them, “OK, it is time to walk the grump.” Before we would reach the end of the road, all of us would be in a better mood.

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