“Today [my son] Jake is living a wonderful life, an extraordinary life, and now I know that’s possible.  When Jake was first diagnosed, we didn’t know that.  Now I know that…and that we’re not alone.”

- Actor Greg Grunberg, father of a 16-year-old with epilepsy

When it comes to epilepsy, what do you know now that you wish you knew sooner?

That’s the question the Epilepsy Foundation is asking epilepsy patients and their families to ponder during National Epilepsy Awareness Month, which takes place every November. Share your struggles and successes in a video submission to the “Now I Know” campaign. Visitors to Epilepsy Foundation’s Facebook page will then have to the opportunity to vote on their favorites and share top videos with their social networks.  Ultimately, the top vote getters in each of four regions will win iPads and other prizes.

Affecting more than two million Americans, epilepsy is defined by the Epilepsy Foundation as “a medical condition that produces seizures affecting a variety of mental and physical functions.”  When a person has two or more unprovoked seizures – brief, strong surges of electrical activity affecting part or all of the brain that last anywhere from a few seconds to a few minutes – they are typically considered to have epilepsy.  Symptoms can range from convulsions and loss of consciousness to more subtle signs, such as lip smacking, blank stares and jerking movements in the arms and legs.

More than 7,000 PatientsLikeMe members are sharing their experiences with epilepsy, including their symptoms, treatments and more.  Using our Seizure Meter, members are also able to record their seizure history, including the type of seizure (e.g. clonic seizure, complex partial seizure, tonic-clonic seizure).  What are our members taking to control their epilepsy – and how well is it working?  Check out the hundreds of treatment evaluations submitted for common medications such as Keppra, Lamictal and Topamax and learn from others like you today.

Yesterday, our interview with bipolar blogger Andrea gave you a glimpse into what it’s like to live with bipolar I disorder.  Today we take a deeper look into this mental health condition using the data and experiences shared by our 1,237 bipolar I members.

First off, however, you may have heard of something called bipolar II as well, so let’s talk about how bipolar I and II differ.  Bipolar I is a subdiagnosis of bipolar disorder that conforms to the classic concept of manic-depressive illness.  It is characterized by at least one manic or mixed episode, and there may be episodes of hypomania (marked by elevated mood, hyperactivity and grandiosity) and major depression as well.  In contrast, bipolar II disorder – which is slightly more prevalent at PatientsLikeMe with 1,556 patients reporting it – is marked by depressive episodes that are more frequent and more intense than the manic episodes.

Now, let’s take a look at the wealth of data found at PatientsLikeMe.  To give you a sense of the makeup of our bipolar I patients, 74% are female, more than 78% have an official bipolar I diagnosis, and approximately 40% report experiencing their first symptom prior to the age of 19.  What exactly are the symptoms of this condition?  Some of the most commonly reported include delusions, excitability, flight of ideas, grandiose thinking, hallucinations, irritability and paranoia.  As you can see, most of these speak to the “manic” side of bipolar I disorder, which involves “excitement of psychotic proportions” as well as hyperactive, disorganized behavior.

As Andrea’s interview yesterday revealed, treating bipolar I disorder can mean treating both mania and depression simultaneously.  Further, our patient-reported data shows that the two prescription medications she takes currently – lithium for mania and Lamictal for depression – are among the most commonly prescribed treatments for bipolar I patients, along with individual therapy and Seroquel.  How well do these treatments work?  Click on each treatment name to read our patients’ evaluations of their effectiveness, side effects, cost and more.

Finally, much can also be learned directly from the experiences our patients share on their profiles, treatment evaluations or forum posts.  We leave you with several patient quotes from our Mental Health and Behavior Forum that help to fully illuminate life with bipolar I disorder:

• “My manias last for about three to four months and are followed by depressions that tend to also last three to four months.  Mine is the classic form of the disease with manias characterized by hallucinations, grandiosity, and impulsivity, and depressions characterized by fatigue, guilt, and somatic concerns.”

• “The condition is every part of me as anything else. My choice to treat it arises from the consequences of living with bipolar in a non-bipolar world and not because I am broken and in need of repair. Bipolar “disorder”, well, whose order am I in disarray?”

• “Now I’m a little manic.  I know what you mean about relentless depressions.  I have those too.  At the other end of the spectrum, I become psychotic.  That’s the part that really frightens me and usually lands me in the hospital, or worse.”

• “A month ago, I truly would have been leveled by all this drama.  I’ve come quite a distance in a short period of time.  You guys give me such strength.  I know that with your help, I can make it through life’s ups and downs while keeping mine under control.”

If you’ve got something to share about bipolar I as well, join the conversation today!

How do we know we’re truly living in a Health 2.0 age?  Recently, we’ve discovered that a number of PatientsLikeMe members have fascinating blogs chronicling what it’s like to live with their respective health conditions.  For example, we told you in August about the acclaimed gastroparesis blog “My Broken Stomach,” written by one of our members, Mollee Sullivan, and last month, we spotlighted diabetes patient Michael Burke’s blog “Life on the T List,” which shares his experiences before and after a kidney transplant.

As a result of this growing trend, we’ve decided to begin a blog series featuring some of the other amazing bloggers that are part of the PatientsLikeMe community.  To start things off, we’d like to share our interview with Andrea, a three-star member who started a candid blog about life with bipolar I disorder earlier this year called “Lithium and Lamictal.”  (The title refers to the two treatments she’s found that work best for her.)  Tune in below to find out why she began blogging and what she hopes to achieve.

1.  Why did you decide to start blogging about bipolar disorder?

I decided to start blogging about bipolar disorder after 21 years of living with this health condition. I was diagnosed with manic depression (now referred to as bipolar disorder) in 1989, and the main reason I bought my first computer in 1997 was so that I could try to connect with other patients and research bipolar disorder using the World Wide Web. I just knew there had to be more information out there than what I had gotten from my psychiatrists and the few pamphlets and books I had read before everyday people began using the Internet for research.

I’m still trying to learn as much as I can about bipolar disorder and health and wellness. I have always been interested in finding information about how people are living day-to-day with the condition. When I decided to start my blog, I wanted to give readers a view into my life so that I could provide an example of someone who is trying to do her best to manage the condition. I hope that my blog will inspire others to take charge of their physical and mental health, and also to remain hopeful and positive.

2.  Your blog is called “Lithium and Lamictal.”  How long did it take to find this treatment combination, and what difference did that make in your life?

When I was first diagnosed with manic depression in 1989, I was given lithium as a monotherapy. It prevented mania, but I still got depressed and I just had to deal with it because psychiatrists wouldn’t prescribe antidepressants since I had a history of severe manias and psychotic breaks. I think it was 2001 when my then-psychiatrist recommended that I try Lamictal at a time when I had been stable for a while. I took it and I didn’t get depressed for a few years, but I did have some unpleasant side effects, so I discontinued it and eventually experienced a serious depression.

Last year, when I was going through another serious depression, my new psychiatrist suggested that I try Lamictal again. After several months, my depression lifted, and after reflecting on my experiences with the medication, I realized that while Lamictal wasn’t great at relieving my depression, it definitely seemed to prevent my depression. At this point, I plan to take it indefinitely. I am taking a lower dose than with my old psychiatrist, and I also take medication and supplements to counteract the side effects. So now I take lithium and Lamictal and feel healthier than ever. All things considered, they are the best medications I have tried with the fewest side effects. Together they prevent mania and depression, and I hope I’ve found a combination of medications that will work for me for years to come.

3.  What have you gotten out of being a member of PatientsLikeMe?

I really like tracking all of my health conditions and medications as well as exercise and sleep. It’s a good way of figuring out what is working and what isn’t. It’s also a reminder that I need to continue to take good care of myself, and it lets me know when I am slipping and need to get back on track. My psychiatrist likes it when I bring the charts to my appointments. She has also started asking me to bring my blog posts.  The [PatientLikeMe] forums are a good way to learn from other patients about what is working for them. I post my new blog posts in the forum in the hope that they might help or inspire people.

4.  Your username at PatientsLikeMe is Yoga Lover.  What role does yoga play in your self care?

I was taking yoga from a great yoga instructor when I chose my username. Yoga is excellent for increasing strength, flexibility, relaxation, learning about mindfulness, and more. Not every yoga instructor focuses on spirituality, but mine did. We had candles burning, dim lighting, a picture of B.K.S. Iyengar and houseplants in the studio. We also had short discussions before class that everyone was encouraged to participate in.

Later in the class, as we went through the poses, he would talk to us about things we should be focusing on. Something that helped me the most was when he explained that just as a stomach digests, a mind thinks. The thoughts aren’t that important. We can decide who we are and what we want to do regardless of our thoughts. We don’t need to be embarrassed about our thoughts or judgmental of them, we just need to observe them.  He recommended reading the book Light on Yoga Sutras of Patanjali, by B.K.S Iyengar, which I did. If you are interested in yoga, I would recommend it highly.

Because of financial considerations, I stopped attending that yoga class and joined my local YMCA. I take a spinning class three times a week and walk on the off days, as well as doing some swimming and strength training. I’m not going to a yoga class currently, but I still focus on things I learned in yoga about breathing, meditation, relaxation and mindfulness.

What does it mean to be “seizure smart”?  It means being knowledgeable about how to help in the event that someone has a seizure in your presence.  Given that one in 100 Americans has epilepsy – and one in 10 adults will have a seizure sometime during their life – this type of basic seizure first aid could help save someone’s life at work, at a restaurant or just walking down the street.

In honor of Epilepsy Awareness Month, the National Epilepsy Foundation has created a short interactive quiz that helps you become “seizure smart.”  The goal is to get five million Americans to take and distribute the quiz.  Once you’ve gotten “seizure smart,” you can then help raise awareness and proudly post your completion certificate on Facebook for everyone to see.

Got an affinity for posting things on Facebook anyway?  You’re the perfect candidate for the Get Seizure Smart Photo Contest.  Categories include “Funniest or Silliest,” “Most Impactful,” “Best Animal” and more.  All photos must be submitted by November 30th at 3 p.m. EST.  Learn about other Epilepsy Awareness Month activities taking place each day of the month here.

At PatientsLikeMe, we have 4,456 patients who report having epilepsy, with 71% of them female and 29% of them male.  Some of the most commonly reported symptoms include excessive daytime sleepiness, headaches and memory problems, while some of the most commonly reported treatments include Levetiracetam (Keppra), Lamotrigine (Lamictal) and Topiramate (Topamax).  (Click the links for each of these anticonvulsant medications to read hundreds of treatment evaluations submitted by our patients, who share their experiences with dosages, side effects, efficacy, costs and more.)

If you have epilepsy, join our growing community to share treatment data, support and advice with those who can relate.  For everyone else, get “seizure smart” and help make a difference today – and quite possibly in the future.

Launched earlier this year, the PatientsLikeMe Epilepsy community now has more than 3,000 patients.  In honor of Epilepsy Awareness Month, here’s a snapshot of what patients like you are sharing and learning about in this community.

Did you know…

• You can search for patients by more than 10 seizure types, such as simple partial, myoclonic, atonic, and tonic-clonic.
• You can also search by 19 different epilepsy types, including temporal lobe, frontal lobe, occipital lobe, juvenile myoclonic, Lennox-Gastaut syndrome, and epilepsy with grand mal seizures on awakening.
• Others in the community have indicated a causative comorbidity for their condition, such as:
  • Head injury (242 patients to date)
  • Brain tumor (70 patients to date)
  • Stroke (38 patients to date)
  • Encephalitis (34 patients to date)
• 543 patient members were diagnosed recently (5 years or less) and 823 were diagnosed 20+ years ago.
• Nearly 500 patients have completed the first in a series of surveys that measure their mental, physical and social well-being. (See “Manage your epilepsy like a PRO”)
  • As part of this first survey, members told us the top issues most important to them – indicating the top three as overall quality of life, seizure worry (i.e., impact of seizures) and mental activity (i.e., thinking, concentrating, memory).

How are our members treating their condition?

• Patients are using thousands of treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, procedures, and more.
• The top procedure reported by our patients is vagus nerve stimulation (VNS).
• The most widely used prescription drugs reported by members are Levetiracetam (Keppra, Keppra XR), Lamotrigine (Lamictal, Lamictal XR) and Topiramate (Topamax, Topamax Sprinkle); the top 3 supplements are Folic Acid, Calcium plus Vitamin D, and Multivitamins.

What are their major symptoms?

• The 5 most common symptoms reported include: Memory problems, problems concentrating, fatigue, excessive daytime sleepiness (somnolence) and depressed mood.

What are they talking about?

• Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Keppra, Lamictal, Vimpat and Topamax), as well as seizures, seizure triggers, driving, and doctors.
• Members share a lot about their experiences switching medications and managing side effects.
• Members motivate each other to make the most out of their doctor visits by encouraging you to ask certain questions and be proactive in seeking care.

What else do you know?  Learn and share with PatientsLikeMe today.