ORE Researcher Series: Dr. Larry Alphs Talks PROs and Depression

Posted August 1st, 2015 by

Dr. Larry Alphs, the Therapeutic Area Leader in Psychiatry for Janssen Pharmaceuticals, shared about his research as part of PatientsLikeMe’s ORE Researcher Series. You’ve already listened to Dr. Tamara Kear and the McMaster University researchers – click below to watch Dr. Alphs speak about a new drug that could eventually treat suicidal thoughts.

 

 

What exactly is the ORE? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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Getting ready for psoriasis awareness

Posted July 31st, 2015 by

Image courtesy of the National Psoriasis Foundation

Tomorrow is the official start of Psoriasis Awareness Month. The National Psoriasis Foundation (NPF) wants people with psoriasis to know they are not alone: Over 7.5 million people in the U.S. have been diagnosed with the condition, and more than 4,800 people with psoriasis are sharing what it’s like on PatientsLikeMe.

What does psoriasis look like? It’s a skin condition caused by unknown factors, and most people have red, itchy, scaly patches, especially around their knees, elbows and scalp. Psoriasis IS NOT contagious, yet people living with this skin condition often experience stigma when others notice their symptoms.

The NPF has a calendar full of events to create awareness about treatments, and offer support for the psoriasis community. Visit their website to learn more about what’s going on in your city or town. You can join “Team NPF” to participate in a walk, run, or other fund-raising event near you.

During Psoriasis Awareness Month, check out PatientsLikeMe posts on psoriasis, including the results of our “Uncovering Psoriasis” surveys, patient interviews with MariaDavid and Erica, and learn what doctors Jerry Bagel and Steve Feldman have to say about psoriasis. And if you’re living with psoriasis, don’t forget to connect with the community at PatientsLikeMe.

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Hartfell shares about her PatientsLikeMeInMotion™ experience

Posted July 29th, 2015 by

PatientsLikeMe members hail from around the globe, and recently, 63 people gathered on the coast of Scotland for a walk to raise awareness of IPF and help people with IPF through Chest Heart & Stroke Scotland. The coolest part? The event was organized entirely online by PatientsLikeMe member Hartfell, and through the PatientsLikeMeInMotion™ program, everyone was excited to get out there and hike. Here’s what she had to say:

“My experience with being diagnosed was quite complacent, as I had never heard of idiopathic pulmonary fibrosis (IPF). But when I read about it, it was a big shock. I found PatientsLikeMe online and was so glad because there was so much information and I was able to communicate with people with the same illness. I decided to organize a sponsor walk 5 months after I had been diagnosed to raise awareness of IPF. I have been a keen hill walker (hiker) for 23 years, and I organized a coastal walk at Kippford, with 3 levels of walks to cater to all abilities. We had a fantastic day with weather views and company and we raised £1,453.68 ($2,268.44), which was brilliant. The money went to Chest Heart & Stroke Scotland, which included my donation from PatientsLikeMe. There were 63 walkers that took part that day, ranging in age from 7 years to 85 years old. I would like to thank PatientsLikeMe for pointing me in the right direction to organize this event and help raise awareness. The event went so well and was enjoyed by all!”

If you’re unfamiliar with how PatientsLikeMeInMotion™ works, check out our guidelines – we sponsor 3-star members (super health data donors) who form teams and fundraise with their local nonprofits. And these advocates receive a donation, free team t-shirts and more!

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Compassion for All: Overcoming the Stigma of Mental Illness

Posted July 27th, 2015 by

From our partners and friends at the Schwartz Center for Compassionate Healthcare.

Our partners at Schwartz Center Compassionate Care recently published a paper about how people living with mental illness experience prejudice, and how their doctors can give them better care.

“Overcoming the Stigma of Mental Illness to Ensure Compassionate Care for Patients and Families.”

Read the full paper

-Lisa Halpern, director of recovery services at Vinfen

Over the years, we’ve heard from the PatientsLikeMe community that many living with mental illness experience stigma, so we thought you’d like to know what researchers have to say about how people with mental illness don’t always get the care they need:

“One of the ways people suffering from mental illness are discriminated against in healthcare settings is when patients’ symptoms are over-attributed to their mental illness. The result is that their other health problems can go undiagnosed and untreated.”

Our partnership:
Over the last 20 years, the Schwartz Center focused on providing compassionate care, while over the last 10 years, we’ve brought the patient voice and the patient story to the life sciences community. We’re excited about the alliance, which will help us better understand the patient’s perception of compassionate care. We can strengthen the relationship between patients and their healthcare providers, which leads to better health outcomes, lower costs and greater patient satisfaction.

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Q & A with Dr. David Casarett, author of “Stoned: A Doctor’s Case for Medical Marijuana”

Posted July 22nd, 2015 by

If you’ve been following the blog lately, you might already know Dr. David Casarett – he’s a professor at the University of Pennsylvania’s Perelman School of Medicine and the author of “STONED: A Doctor’s Case For Medical Marijuana.” He recently worked with PatientsLikeMe on a survey that asked members how they felt about marijuana, and the results were just released last week. Below, read what David had to share about the inspiration behind his novel, his thoughts on online communities like PatientsLikeMe and the intertwined future of marijuana and medicine.

 

What inspired you to write “Stoned: A Doctor’s Case for Medical Marijuana?”

A patient – a retired English professor – who came to me for help in managing symptoms of advanced cancer. She asked me whether medical marijuana might help her. I started to give her my stock answer: that marijuana is an illegal drug, that it doesn’t have any proven medical benefits, etc. But she pushed me to be specific, in much the same way that she probably used to push her students. Eventually I admitted that I didn’t know, but that I’d find out. Stoned is the result.

Inside the book, you say “For Caleb. I hope he found the relief he was searching for.” Can you share a little about his story and why you dedicated the book to him?

I describe my meeting with Caleb in the first chapter. He was a young man with advanced colorectal cancer who drove his RV to Colorado to get access to medical marijuana. He got there, and marijuana was legal, but he couldn’t afford it. He had access to other legal drugs like morphine and ativan through his hospice, but he didn’t use them because they didn’t work for his pain, and made him feel sick. The only thing that worked for him–marijuana–was out of reach.

Sounds like you went through some interesting research experiences while you were writing the book. (Pot wine? Marijuana paste on your leg?) How did those experiences influence your perception of marijuana as medicine?

I was trying to understand what the best way is to get the “active ingredients” of marijuana into people. I saw lots of ads for various methods, and all sorts of products are available, but I wanted to know what works. It turns out that some methods, like marijuana tea or beer or wine, aren’t very effective. But others, like vaporizing, definitely are.

What do you think is the biggest misconception about marijuana in the medical community?

The biggest misconception about marijuana in the medical community is probably that it offers no medical benefits. At least, that’s what I thought when I started researching Stoned. Actually, there have been some good studies that have shown very real benefits for some symptoms. True, there isn’t as much evidence as I’d like. But there will be more. New research is coming on line every year, and we’re gradually figuring out whether and how marijuana works.

How do you see online communities like PatientsLikeMe contributing to the medical marijuana discussion?

I think the biggest potential contribution of PatientsLikeMe is a source of crowd-sourced science. Medical marijuana science is lagging far behind the way that people are using it. For instance, in researching Stoned, I spoke with dozens of people who were using marijuana to treat the symptoms of PTSD, but there haven’t been any randomized controlled trials of marijuana for that use. That doesn’t mean that marijuana doesn’t treat PTSD symptoms, just that we don’t know (yet) whether it does.

We need randomized controlled trials, but those trials will take time, and money. That’s where communities like PatientsLikeMe come in. We can learn from PatientsLikeMe members what they’re using medical marijuana for, and how. And we can learn whether they think it’s working. Those reports can help patients learn from each other, and they can help researchers figure out what to focus on.

What did you find most interesting about the PatientsLikeMe survey results?

I was surprised that 87% of people weren’t at all concerned about becoming addicted or dependent on marijuana. We know that although the risk of addiction is small (about 10%), it’s very real. That risk probably isn’t enough to convince most people to avoid medical marijuana, especially if it’s helping them. But we should all be aware of those risks, so we can be alert for signs of dependence, like impairment of function, or effects on work or relationships.

You mention that the future of medical marijuana is the most interesting, yet hardest to answer question. But that said, what do you think the future holds for medical marijuana?

Some of the most exciting advances in the science of medical marijuana, to me, are related to what marijuana tells us about the endocannabinoid system – that’s the system of hormones and neurotransmitters and receptors in all of us. We don’t know a lot about what that system does, but we do know that marijuana ‘works’ by tapping into that system. The cannabinoids in marijuana trick the body by mimicking naturally occurring endocannabinoids like anandamide.

So although it’s fascinating to think about what marijuana could do, and although clinical trials of marijuana are essential, the really neat science of the future may focus on that endocannabinoid system – what it does, how it works, and how we can use it to promote health.

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ORE Researcher Series: McMaster University

Posted July 20th, 2015 by

Last month, you met ORE researcher Tamara Kear, PhD., R.N., CNS, CNN, and you listened to her talk about her research on hypertension, one of the factors that can lead to a person developing kidney disease. Today, we’re introducing McMaster University Professor Gordon Guyatt and students Melody Ren and Reza Mirzaie. The question they are asking is “how are patients currently receiving bad news from a medical professional, and are the guidelines doctors have on delivering bad news actually correct?” Below, listen to the three researchers talk about their work and how the ORE platform and PatientsLikeMe made their research possible.

What exactly is the ORE? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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Spoons and forks – not just for summer picnics

Posted July 17th, 2015 by

There are a ton of activities to do during the “lazy, hazy, crazy days of summer.” And whether you’re living with a chronic condition or not, it’s good to learn how to manage your energy. Christine Miserandino, who lives with lupus, created her “Spoon Theory” as a way to think about how much energy we have available.

Here’s how it works:
Pretend that you have a handful of spoons that represent all the energy you have for the day. Depending on your health, you’ll need to use some of those spoons to get dressed, make a pot of coffee or take care of your pet. Once you’ve done the daily ‘essential’ activities, you’ll know how much energy you’ve got left for other things, like going for walk on a summer evening.

The great thing about the Spoon Theory is that it works for everyone – you choose how many spoons to start with each day and know how many you have left. It’s also an easy way to communicate with others how you’re feeling at any given time. Maybe you’re not feeling like that hike in the woods. It may be hard to say ‘no,’ but easier to say, “I only have one spoon left today, and I’m saving it for cooking dinner tonight.”

Flipping it around, Jackie, who lives with multiple sclerosis (MS), came up with her “Fork Theory” as a way to communicate her pain points to family and friends. Jackie explained the theory to others in her PatientsLikeMe community:

“Forks are the opposite of spoons, you want to get rid of them. But knowing how many forks you have at any given time can help those around you understand what’s going on. For some of us, these forks take the form of chronic pain or fatigue, but for others, they may be simply a lack of motivation for the occasional family dinner (just kidding, Aunt Helen :) ).”

Support that sustains
Whatever type of cutlery makes sense to you, a summer day may offer you more chances to eat well, enjoy some exercise a bit or spend time relaxing at the beach.

If you need someone to talk to about your health condition(s) and how you are using your spoons or forks today, there are more than 350,000 PatientsLikeMe members discussing more than 2,500 health conditions. Summer wherever, but summer together. Join PatientsLikeMe and discover a place to learn and connect.

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Results From PatientsLikeMe Survey Highlight Patient Beliefs About Medical Marijuana

Posted July 14th, 2015 by

Cambridge, MA, July 14, 2015—A new survey of 219 PatientsLikeMe members has found that patients with certain conditions who use medical marijuana believe it is the best available treatment for them, with fewer side effects than other options and few risks. The survey, conducted in June 2015, is among the first to gauge patient perceptions about the benefits and risks of medical marijuana and their level of willingness to recommend its use.

PatientsLikeMe’s Vice President for Advocacy, Policy, and Patient Safety, Sally Okun, RN said that while the number of respondents and conditions represented is limited, the survey and its results come at an important time. “As more people consider using medical marijuana, and more states legalize it, patients need to know what others are experiencing. This survey starts to gather real world data about marijuana as medicine—information that may be useful for patients and their physicians as they explore options and make treatment decisions.”

Half of the survey respondents started using medical marijuana in the last five years, while 25% started to do so in the last two years. Smoking (71%), edibles (55%), and vaporizing (49%) were the most commonly used methods for taking the treatment. The top three conditions represented were multiple sclerosis, fibromyalgia and depression. Key findings are as follows:

Usage and Perceived Side Effects

  • About three quarters (74%) of survey respondents agree that medical marijuana is the best treatment available for their health issue. Another 20% are unsure if there is another option available.
  • 76% report that they use medical marijuana because other treatments weren’t working and/or caused too many side effects. About 21% use it to avoid the side effects of other treatments.
  • When asked about the severity of side effects from using marijuana, 86% of PatientsLikeMe members who report using marijuana indicate the side effects are either “none” or “mild.” The same group says those side effects include dry mouth, increased appetite, and sleepiness.

Perceived Benefits and Risks

  • Survey respondents use medical marijuana for more than one reason, including to treat pain (75%), muscle stiffness or spasms (69%), insomnia (67%) and anxiety (55%). The majority (63%) considered marijuana as a treatment option because they think it is more natural.
  • Most (93%) say that they would recommend medical marijuana to another patient.
  • About 61% say their healthcare provider is supportive of their medical marijuana use, and 60% have a letter of recommendation or prescription.
  • Most patients report a low level of concern (“Not at all” or “A little”) with long-term health risks, such as developing lung cancer (89%), long-term lung damage (86%), or becoming addicted/dependent (96%).
  • One in four patients (26%) report being “Somewhat” or “Very” concerned with legal problems.

Infographics on these and other survey results and the complete list of questions and responses are available at http://news.patientslikeme.com.

David Casarett, M.D., a professor at the University of Pennsylvania’s Perelman School of Medicine and the author of the newly-released book STONED: A Doctor’s Case For Medical Marijuana, worked with PatientsLikeMe on the survey. “This is an important first step in crowdsourced science about medical marijuana. Until we have a lot more large, high-quality clinical trials, patients will need to rely on each other to learn about whether and how medical marijuana might help them.”

Medical marijuana refers to the use of the cannabis plant as well as synthetic THC and cannabinoids as medicine. It is legal in Canada, Belgium, Australia, the Netherlands, the United Kingdom, Spain, and in some U.S. states.

Survey Methodology
Between May 26 and June 10, 2015, PatientsLikeMe invited 1,288 members who added medical marijuana to their profile to respond to the survey; 219 completed it. The mean age of the respondents was 49 years (SD: 12.2); the age range was 19 – 84 years. Most respondents (81%) reported their location as the United States, while 13% are from Canada and the rest are from Australia, Europe, South Africa or Israel. Four respondents did not report their location.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


When children are the caregivers

Posted July 13th, 2015 by

In 1998, the American Association of Caregiving Youth (AACY) was founded to help support a silent, vulnerable and hidden population in the United States – the thousands of children who provide care for family members, but are unable to manage their own lives independently. And to show these strong children that they are not alone, the AACY created the Caregiving Youth Project (CYP) that integrates healthcare, education and a community of support.

PatientsLikeMe is partnering with these two organizations to help shine a light on the lives of these caregiving youths. But who are some of these hidden heroes? Meet Katrina. She’s the oldest of three siblings, and growing up, she cared for her bedridden uncle, her sister (living with down syndrome and heart problems) and her brother (living with apraxia). But as she says, “this situation is a privilege because it is a challenge.” Read about her experiences in her own words below:

Katrina’s story
“Not many children grow up having a completely bed-ridden uncle living with them. Or a little sister with Down syndrome and severe heart complications. Or a little brother who could hardly hear as a young boy and who has Apraxia; but, those who do have a unique privilege. Why, you might ask, do I use the word privilege? Doesn’t the word “problem” or “difficulty” or “burden” describe the situation better? No. This situation is a privilege because it is a challenge. And it is in and through challenges that one may grow. Because my family has had these challenges, we have increased in love for one another and have been unified into a solid family. My parents have made enormous self-denying concessions to do what is best for their extended and immediate family in caring for those with physical and mental needs. 

As a child, my parents encouraged me and my siblings to help our uncle with simple needs, and we loved it when we were able to help. When my little sister was born, I was so proud and excited to be able to help care for her; it made no difference to me that she had Down syndrome–she was my sister. My mom was and is very disciplined with her time and responsibilities and taught me do the same. The importance of diligence and staying focused on the task at hand was important in general, but also because we never knew what might come up. My uncle, at that time, needed help almost every two minutes, and understanding my little brother was sometimes very difficult because he couldn’t communicate well with words.

I am thankful for my parents’ example of self-denial, discipline, and hard work, and I was able to carry those qualities, though probably not quite as well, into high school and apply them when doing homework, training for basketball, and leading the honor society. I am also thankful for their example of and passing on of a positive attitude; devoting time and energy to our family members and others is not a bothersome burden but a joy when looked at with proper perspective. Yet with the demands of household responsibilities, it was often hard to stay balanced getting my homework done while finding time to help my uncle and still be patient with my little sister too. But I made it through and finished on top and now feel somewhat prepared for the challenges ahead. And not only have these situations made me stronger and more mature as a person, but they enable me to help and sincerely empathize with those in similar situations.”

You can learn more about the AACY and the CYP by visiting their websites.

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Throwback Thursday: Are you sleeping?

Posted July 9th, 2015 by

It’s time for another Throwback Thursday, and today, we’re rewinding back to the summer of 2013, when the staff at PatientsLikeMe shared about how they sleep. Sixty one employees helped kick off the “Are you sleeping?” campaign in a quick poll, answering questions about how long and how well they sleep each night. Check out the highlights below:

How well are you sleeping?
All in all, we found that the majority (89%) of our staffers were sleeping OK or better.

How well are you sleeping?

 

On average, how much sleep do you get every night?
Although our Zzzz’s were OK, 61% of respondents were only getting between 5-7 hours a night (and according the Center for Disease Control and Prevention, that’s way less than the recommended 7-8 hours for adults).

How many hours?

 

Do you have a problem…
For those who confessed to having sleep troubles, more people said it’s staying asleep that was the issue (77%).

sleep problems

 

What have you tried to help you fall asleep?
When it came to needing sleep aids to catch Zzzz’s, more of our employees turned to solutions like books (60%), lifestyle changes (50%), TV (31%), relaxation (31%) and sex (33%). Some tried over-the-counter interventions (22%), prescriptions (16%) and homeopathic techniques (14%). We also asked what was least helpful, and found ‘watching TV’ topped that list.

Tried to fall asleep

 

Since joining the PatientsLikeMe team, do you…
And last but not least, since joining the PatientsLikeMe team, only a handful had changes in their sleep, with 13 people saying they slept less (23%), and surprisingly, 5 (8%) actually slept more.

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If you’ve been struggling with sleep, read what PatientsLikeMe members Lori (living with idiopathic pulmonary fibrosis) and Marcia (living with multiple sclerosis) had to say about their insomnia. And don’t forget to reach out to the community in the Sleep Issues forum on PatientsLikeMe – over 40,000 members are sharing about everything related to their sleep.

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Food for Thought: July (chocolate) edition, take 2

Posted July 7th, 2015 by

Last year, July’s Food for Thought revolved around MS members sharing their experiences with chocolate. This year, we thought we’d continue the tradition – check out what a few members had to say about their relationships with the delicious sweet:

“I have been trying a dairy free diet for a couple of months due to me having a problem with milk protein which is an antigen to the lungs and acts like any other substance that can affect our breathing. I have a treat of dark chocolate now and again and have been grateful for a plentiful supply of dairy free products.”
-IPF member

“For me, I don’t deny myself a little sweet treat.  What I do deny myself is massive amounts of sweet treats. I buy a few high quality dark chocolates and allow myself one per day. Or I buy the sugar free mousse packs in the refrigerator section or the sugar free Jell-O puddings. They seem to work. I also make my own brownies and cookies using high fiber ingredients and sugar substitutes. I have been using Xylitol with good success too.”
-Diabetes member

“I will take a teaspoon or two of coconut oil (organic, extra virgin) and add to it a bit of cocoa powder and a drop or two of Stevia to sweeten.  It tastes like real chocolate. The coconut oil is firm and melts in your mouth just like real chocolate…I can hardly tell the difference.”
-Diabetes member

If you missed our other Food for Thought posts, read the previous editions here.

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Visualizing insomnia

Posted July 2nd, 2015 by

Jenna Martin is a photographer living with insomnia, and her sleeplessness is the inspiration behind much of her work. Much like the Seeing [MS] campaign, she tries to visualize her experiences through unique photographs that capture what it feels like to manage bouts of insomnia.

Her photographs were recently featured in the Huffington Post, and as she told the organization, “on average, I only get a few hours of sleep every three days or so. During a bad bout, I’ll go close to five days with no sleep. When that happens, reality and the dream world become switched in a way: reality is very hazy and hard to remember, and any sleep I do get has dreams that are incredibly vivid. Everything starts to blend together; I’ll begin seeing things from a third person perspective and it’s hard to tell if I’m awake or if I’m dreaming.”

Check out some of her pictures below, and see more of her work on her Facebook page.

Jenna Martin Photography

Jenna Martin Photography

Jenna Martin Photography

If you are living with insomnia, you’re not alone – over 2,200 people on PatientsLikeMe know what you’re going through. You can also visit the Sleep Issues forum to ask questions and learn more about sleep (or lack thereof).

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Chris Hannah, founder of CHSG, talks cluster headaches, clinical trials and more

Posted June 29th, 2015 by

In the beginning of June, we posted about National Headache and Migraine Awareness Month, and today, we’re continuing the conversation with Chris Hannah, the founder of Cluster Headache Support Group (CHSG). He recently sat down for a PatientsLikeMe blog interview, and he spoke at length about everything related to cluster headaches. Below, read what he had to say about PatientsLikeMe, new drug treatments for cluster headaches and his own personal experience with “the worst pain he has ever felt.”

What do you feel is the most important information people should know about cluster headaches vs. other types of headaches?

First and foremost, if you are a cluster headache sufferer, it is important to know that you are not alone. It may seem that way since so many have never even heard of it and often mistake it as just another name for a regular headache. It is actually one of the most painful conditions known to medical science (you can Google that). It’s also not a form of migraine, it is a primary headache disorder but is quite different from migraine in many ways, especially given its odd periodicity where sufferers will have attacks at the same time of day, even the same time of year, over and over again. The pain is excruciating, typically centered around the eye on one side of the head. It also is accompanied by parasympathetic nerve response, causing tearing of the eye, eyelid drooping, running or blocked sinus, and ear ringing. It is quite disorienting when it occurs, and may occur 8 or more times in a single day lasting from 30-90 minutes typically. An attack may also be triggered at any time by consuming alcohol, chemical or perfume smells, second-hand smoke, and many foods.

For those who know someone diagnosed with cluster headache, please know that they are dealing with an insidious and debilitating condition. They are most likely under the guidance of a highly skilled neurologist who specializes in headache disorders. It may be hard for them to socialize as they did before onset, even with family and close friends, because they fear having an attack in public. Where migraineurs can lay their head down, cluster headache sufferers are unable to stay still, often including odd behavior like slapping their head or walking in small circles. This is not a conscious choice, rather the body’s way of dealing with the intensity of the pain. Please give them space but also your compassionate support. They are not looking for things to try that you may have heard about. They are probably experts in all options available to them as is the case with many chronic pain conditions and rare diseases.

How do you feel CHSG.org members might also benefit by becoming members of PatientsLikeMe?

I think one of the key benefits of PatientsLikeMe is codifying anecdotal data that all too often gets lost in the daily dialog of our support group. I think both are still very important, especially in terms of the experience and expertise of the community. Keep in mind that as a global organization, we benefit from the patients of some of the greatest minds in healthcare from all of the major headache centers, along with the many years of experience of many of the members. Although we have that information capital, turning that into quantifiable data for research can be quite challenging. PatientsLikeMe helps us translate each person’s experience with treatments, symptoms, co-existing conditions, and emotional well being into aggregated data that may help clearly identify new research targets, correlations to other disorders or demographics, even the number of patients who suffer similar disorders. It is done so in a positive way, helping the patient with excellent recording and tracking capabilities, even a doctor’s visit report. At the same time, it is helping to accumulate data over time across a diverse patient audience all living with the same disorder. We have a name for this ongoing data collection, reporting, research cycle, called SpiralResearch. We frankly see this collaborative approach as the future path of medical research for rare disorders in comparison to the onerous process of enrolling people in a point in time survey or one-off study that eventually gets published in summary as a document in hopes that someone will take it further, or better, correlate the results across many publications. We think there is an opportunity for greater synergy and insight in the process of continuous data gathering and analysis.

Do you have a personal cluster headache story you’d care to share with the PatientsLikeMe community?

I was in the prime of my career in the pharmaceutical industry when I initially encountered the worst pain I had ever felt. I was at a Harry Potter movie with my family and had to go straight to the emergency room. I truly thought I was going to die. It took six months from that point to get a diagnosis of cluster headache. Unfortunately, due to its rarity, approximately .3% of the population, even healthcare professionals are not all that familiar with it and may have never seen a case. I ended up getting a clear diagnosis first at the Jefferson Headache Center in Philadelphia and a second opinion confirmation from the Cleveland Clinic Headache Center. Until then, I was prescribed opioid pain killers which were largely ineffective. I was having on average 8 attacks per day interspersed with an ongoing baseline headache that made it hard to do anything. Of course, I didn’t sleep much either during that time and actually was housebound for most of the time, like I dropped off the face of the earth. That’s not easy for a man with a family, friends, a high profile job, and an avid golfer and outdoorsman. I had no idea such a thing even existed until I got it myself.

I searched out any and all information about cluster headaches. I found some online communities, but frankly, I did not like them much. They were full of people who were self medicating, self harming, and there were frequent issues of suicide. In fact, cluster headache is nicknamed the “suicide headache” because the effects are so profound on daily living. I decided there must be a better way, especially a way to work within the healthcare system, with pharma and other organizations to improve the quality of life and the resources available to cluster headache sufferers. There remain no preventive treatments specifically indicated for cluster headache although there are some partially effective off-label medications typically prescribed with varying results. For some like me who are chronic sufferers, finding relief is a long path. It is a life-long disorder, incurable currently. We hope to change that. In fact, since starting CHSG in 2010 and incorporating in 2012 as a 501c3 nonprofit organization, we have contributed to several new clinical studies and have even introduced effective treatment options through the headache centers we touch. We also offer a safe, compassionate place for sufferers to learn, share, connect, and engage with activities like our integration of PatientsLikeMe in our overall strategy of spiraling toward a cure.

In your opinion, what are the most promising drug treatments available to people suffering from cluster headaches? What about clinical trials—do you feel people with cluster headaches are good candidates for new drugs still in clinical trials?

We (CHSG) have most recently been working to trial ketamine infusion therapy in the hospital setting with excellent results that will, in fact, be published this year in Cephalgia and Neurology. Ketamine got a bad name from illegal street abuse, but in fact it is an approved, safe, and effective treatment for several neurological disorders, pain, and anesthesia. It is also opioid reducing, meaning it reduces dependency on opioid pain killers for chronic pain. Opiods are highly addictive and in the case of chronic pain conditions, often have diminishing efficacy, so people take more or seek stronger pain relievers. It’s not a viable path. Ketamine, on the other hand, is effective, non-addictive, and has a short half-life in the body. One of the most compelling effects of ketamine infusion therapy is based on neuroplasticity, meaning the brain actually has the opportunity to create new pain pathways, eliminating the “broken” and overexcited pathways common to chronic pain conditions. This is currently my primary treatment.

Another interesting avenue we are pursuing is that of TRP Channel antagonists, specifically TRP V1, A1, and M8. TRP channels are a basic mammalian sensory system that react quickly to certain noxious stimuli, including bright light, chemical smells, certain tastes like the hot in hot pepper, atmospheric pressure change and mild temperature increases. Interestingly enough, these specific stimuli are also the most common triggers for both migraine and cluster headache. There are several candidates currently in the pipelines of both biopharm and pharma as TRP channel antagonists. We do have some work to do to initiate evaluation for cluster headache and migraine and are actively in pursuit.

For many sufferers, there are viable medications that show efficacy at least for a time. Most do have to switch medications throughout their course due to taking relatively high dosage levels of “borrowed” medications primarily indicated for blood pressure regulation, anti-seizure, or serotonin gating. The high dosage levels prescribed for cluster headache introduce many side effects, including heart arrhythmia, low blood pressure, dizziness, severe fatigue, and even confusion. There are also two very good abortive approaches. Sumatriptan injection is effective for most, but limited to no more than 2/day and 4/wk which leaves quite a gap. High-flow oxygen at 12-15LPM also works for many and is quite safe with little side effect. Unfortunately, there is no complete solution yet for most sufferers.

How to you feel tracking or logging on to websites like ours is useful in terms of identifying headache triggers, learning about pain-management therapies, and moving researchers to find treatments for cluster headaches?

There simply can’t be too much real information, but making sense of it can be quite a challenge for the patient, especially in the mix of so much misinformation on the Internet. PatientsLikeMe and CHSG both help distill that information into a quickly understandable and informative format that is based on both experience and research. There is always more to learn, more options to consider, and new information coming from the ongoing collection of data across a wide base of users. Distilling that down into an easily digestible form is what PatientsLikeMe does best, in my opinion. It’s not just about patient tracking and learning about their own conditions, which is quite important; it is also about looking at the data across the patient base and identifying key commonalities and correlations that may not have been visible previously. This information is shared freely with all patients, ongoing. That “informing” process makes better patients, frankly, and puts the knowledge in their hands to help them better manage the dialog with their healthcare provider and others. It builds up the community both individually and as a patient group.

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The Patient Voice- PTS member David shares his story

Posted June 27th, 2015 by

Today is PTS Awareness Day, so we wanted you to meet PatientsLikeMe community member Cpl. David Jurado, who lives with post-traumatic stress (PTS). David developed PTS while serving in the military. After he retired, he continued to deal with daily symptoms, and he encourages members to connect with others on PatientsLikeMe, because “if you want to make changes for yourself and the PTS community, you’ve got to share your story. The same thing may be happening to them.”

David is not alone – and neither are you. There are more than 1,000 vets living with PTS that are part of the community. We’ve heard members like David talk about how important it is for them to connect with people who ‘get it.’

Not a veteran living with PTS? You’re not alone either. With more than 8,000 PTS members, it’s easy for anyone with PTS to share their story and get support.

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