7 posts tagged “headache”

A Q&A with Alec Mian, CEO of Curelator

Posted December 23rd, 2015 by

Our partners at Curelator Headache enable individuals with migraine to discover their personal triggers, dismiss supposed triggers that are not associated with attacks, and identify factors that reduce the risk of having an attack (“protectors”). Understanding your personal triggers – environmental, physical, or emotional – and how they may be acting in combination to provoke attacks is the first step to taking back control and managing your migraines. Read our Q&A with Curelator CEO, Alec Mian, below.

Q: Alec, you have a background in the biopharmaceutical industry. Can you tell us a little bit about yourself and what drew you to Curelator?

I last worked for a biotech startup called Genmedica Therapeutics in Barcelona, Spain. Genmedica was one of the first companies that targeted the cause of diabetes; one of the major causes is depletion of the insulin-producing beta-cells in the pancreas. In animal testing the Genmedica drugs had some of the best results any of us ever saw. These drugs are now in phase 2 clinical trials in humans. But the truth is – for people with early type 2 diabetes, the disease is actually reversible through dietary changes and exercise – unfortunately only a small percentage of the population actually invoke those changes and avoid pills altogether.

Q: Can you tell us where the concept of Curelator came from?

My goal was to create a Company whose mission is to confer long-term benefits for people with chronic conditions, such as migraine, through a non-pharmaceutical approach.

Curelator was the offspring of two needs. The first need is for a non-pharmaceutical approach that can identify all the factors – habits, environment and diet –  that may influence a migraine attack.

The second need is for a fully individualized technology, one that identifies each individual’s personal factors – not the factors that might be common in a population and irrelevant to the individual. Curelator acknowledges that everybody is different.

Q: Can you explain Visual Migraine Language (VML) and the Individual Trigger and Protector Maps?

Curelator requires each individual to self-report and track their exposure to about 60 factors everyday using a smartphone. We’ve made this an easy 2-3 minute exercise by developing a Visual Migraine Language. It is a fun series of icons representing factors that users can quickly learn and facilitates rapid, game-like data entry.

After 45-90 days of data entry Curelator users generate three highly individualized map:

  • The Protector Map will display all the factors associated with decreased risk of attack.
  • The Trigger Map shows factors associated with increased risk of attack.
  • The No-Association Map lists all the factors that have nothing to do with an individual’s migraines. This is actually quite important since many migraineurs walk around needlessly avoiding a catalogue of things for no good scientific reason.

People usually know a couple of their factors, are surprised by others that they did not suspect and inevitably, they also realize they were avoiding things they had no need to avoid.

Q: How can Curelator help people living with migraines? What does Curelator do with the data submitted by migraine patients? (i.e. research, etc.).

The maps equip our users with the knowledge they need to start changing starting their dietary habits and other behaviors. Early results show that people seem to be reporting a 30-40% decrease in attacks and days with migraines after 3-9 months of use – which is fantastic.

You can view some of our results (generated in collaborative studies with National Headache Foundation and Migraine Trust) in an unusual visualization we call a Population Trigger Map:
https://curelator.com/migraine-trust-population-trigger-map/
https://curelator.com/nhf-population-trigger-map/

Q: Are there any success stories you’d like to share, from either the neurologist or patient perspective?

Many patients thank us for discovering simple things, learning that they can actually eat chocolate or drink red wine again –  before getting their maps they were absolutely convinced that they couldn’t.

We have a very interesting case study with a well-known migraine advocate who is active in our PatientsLikeMe forum and is also a registered nurse, Sharron Murray. She was one of our first testers and Curelator successfully confirmed what she had previously found to influence her attacks – but in three months, not five years. We recently interviewed Sharron and she has also has a very popular migraine site.

Q: What advice would you give to people living with migraine? What do you wish more people knew about migraine?

Anyone with migraine should see a good doctor – preferably a neurologist. We have a free coupon referral program with many neurologists so migraineurs can try out Curelator for free and their data will be part of a large research study we are conducting. They just need to ask their doctor for it.

In terms of educating migraineurs, there is a lot of false information about migraine on the Internet. Please don’t assume that there is such a thing as “common triggers.” This condition affects people quite differently.

Q: We’re very excited to be partnering with you. How do you think those using Curelator will benefit from an online community and health-tracking site like PatientsLikeMe? How can PatientsLikeMe migraine members benefit from Curelator?

PatientsLikeMe is an incredibly valuable place to share the experience of your journey, your trials and errors and to learn from others. But shared information is best if it is scientifically based. Otherwise you’ll lose time and be frustrated chasing red herrings. If you have scientifically generated information about your condition, you have the basis for real progress in terms of managing true triggers and embracing true protectors – and getting back control.

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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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