“I’m “healthy” but would be interested in tracking my health online. Not sure what this means, or what a “healthy” person should track. What do you recommend? - David”

Great question. There are probably as many answers to this question as there are people who track themselves. But in talking to many self-trackers and through my own experimentation, a few basic measures stand out. Most people will measure:
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• sleep
• weight
• calories
• exercise

People who have an illness or condition will also measure things like pain levels, pain frequency, temperature, blood pressure, day of cycle (for women), and results of blood and other biometric tests.

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It’s a question that the media is starting to ask too:
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• Thomas Goetz, deputy editor of Wired Magazine, wrote this blog post about how we measure health.
• Jamin Brophy-Warren of the Wall Street Journal wrote this article about the phenomenon of personal data collection, which he calls the “new examined life”.
• Writers and visionaries Kevin Kelly and Gary Wolf have started a growing movement called The Quantified Self, which they describe in this blog post.
• Self-experimenters are writing books about their experiences - David Ewing Duncan (aka “Experimental Man“) and Seth Roberts (of the “Shangri-La Diet“)

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Another answer came from a Facebook friend I recently met, Karina:

“It’s just something I do, and need to do, and it’s part of my life. So, in a nutshell, on most days I write down what I ate and drank, how many steps I walked, when I went to bed and when I woke up, my workouts and my pain/medication/treatments. I also write down various comments about meditative activities and, if it’s extreme, my mood.”

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Tracking yourself can be as low-tech as a pencil, paper, watch, and scale. Or it can be as fancy as Bayesian analysis of custom spreadsheets with wifi gadgets that stream your health data live to online servers.

My answer to the question of what to track? It depends on what you want to get out of it:
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• Are you looking for greater self-awareness and a way to stick to those New Year’s resolutions?
• Do you want to compare your data to other self-trackers and see where you fit on the health curve?
• Are you interested in contributing your health data to a better understanding of condition and research into finding cures?

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Whatever your reasons, tracking is fun, helpful, and here to stay. Please keep your questions coming, and let’s continue the discussion. Happy tracking!

One man is documenting this phenomenon. In a new blog-to-be-book entitled The Decision Tree, Thomas Goetz, deputy editor of Wired Magazine, writes about predictive medicine and the future of healthcare. In his words:

“The premise is that we are at a new phase of health and medical care, where more decisions are being made by individuals on their own behalf, rather than by physicians, and that, furthermore, these decisions are being informed by new tools based on statistics, data, and predictions. This is a good thing - it will let us, the general public, live better, happier, and even longer lives. But it will require us to be stewards of our health in ways we may not be prepared for. We will act on the basis of risk factors and predictive scores, rather than on conventional wisdom and doctors recommendations. We will act in collaboration with others, drawing on collective experience with health and disease, rather than in the isolation and ignorance that can come with “privacy” concerns. And we will act early, well before symptoms appear, opting to tap the science of genomics and proteomics in order to mitigate our risks down the road.

Together, these tools will create a new opportunity and a new responsibility for people to act - to make health decisions well before they become patients. This can be characterized as a decision tree, a series of informed choices we will make to minimize uncertainty and optimize our outcomes. Indeed, we will use decision trees to navigate most of our health decisions, sometimes in overt ways - new decision support tools will both inform us and guide us, and they’ll be steeped in statistics, prediction, and the power of collective experience.”

It will be interesting to follow and participate in the discussion surrounding this book - it’s one that is sure to provoke strong opinions and heated debate. But if the end result leads us closer to a healthcare solution (within the system or outside it) that meets the needs of most people most of the time, then we all win.

*Photo from The Decision Tree

Migraine is a disease that affects 30 million Americans. The Migraine Research Foundation estimates that every 10 seconds, someone in the United States goes to the emergency room with a headache or migraine. And with the added stress of the winter holidays, some migraine doctors see a 30 to 40 percent increase in office visits, according to the Headache Institute.

To help manage their migraine pain and find solutions for it, a community of migraine sufferers is growing here at CureTogether (http://www.curetogether.com/Migraine). People are sharing treatments, rating their effectiveness, and writing reviews of their experience. This data is continually gathered into live statistical charts that show how many people have tried a given treatment and how effective it was, on average. One member commented that the statistical data was “very useful”; another said “It’s helpful to see what triggers other people have and what they’ve tried, and a good reminder to focus on avoiding my triggers as much as I can over the holidays, and afterwards!”

The top 12 tips for dealing with migraines as suggested and ranked by CureTogether members are*:

1. Reduce stress
2. Sleep
3. Ibuprofen
4. Avoid dietary triggers
5. Avoid caffeine
6. Imitrex
7. Don’t stare at a computer/screen too long
8. Stay hydrated
9. Neck massage
10. Maxalt
11. Chiropractic treatment
12. Magnesium

For more migraine treatments, visit http://www.curetogether.com/Migraine/_treatment/.

*Please note that this list of tips and all other information on CureTogether.com does not constitute medical advice.

“Almost Half of People With a Chronic Condition Have Multiple Chronic Conditions”

This started me thinking how many CureTogether members have reported multiple conditions, so we dove into the data, and here’s what we found.

We define “active members” as people who have joined CureTogether and indicated that they have at least one condition, as opposed to “passive members” who join CureTogether but do not go on to contribute any data.

Our findings so far are that of people who report having one condition, 67% report only that condition, while 33% report other conditions as well. The number of conditions that people report seems to decay into a long tail, with some members reporting up to 19 comorbid conditions.

It is possible that some people may be over-reporting conditions that have not been formally diagnosed, but also possible that some people are under-reporting conditions that are either not yet in our system or that they have not yet had a chance to report. Either way, it will be interesting to see how this data changes as members continue to join and share their information.

Here’s how it works now:

When you log in or sign up as a new member, you will see this new home page, with any updates for your condition(s) on the left side, and a Track your Health panel on the right side.

You can enter your weight, caloric intake, sleep, and exercise for the past 2 days, and it will automatically be saved for you. To see more detail, you can click “See expanded view”, which will bring you to the next screen…
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The expanded “Track Your Health” pane lets you enter data for the past 5 days, as well as scroll backwards into the past. You may need to refresh the page or click on the arrows to go into the past/future in order for the charts to update (we’re working on that).

Soon you will be able to define your own measures to track, and see what measures other people are tracking. You won’t be able to see other people’s data unless they explicitly invite you, but we will have global statistics so you can see where you fit among all CureTogether members.
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For an example of some of the possibilities for tracking, read my post at The Quantified Self on tracking 40 things about my health.
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So start tracking, and stay tuned for more exciting developments!! We also welcome your feedback (leave a comment below), so we can make your experience as smooth and easy as possible.

They mention CureTogether in passing as part of writing about my personal story (yes, the picture is at my house, and no, that’s not my fruit), and this is what they have to say:
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“Some of the new data collectors hope to make better decisions about their activities and improve their quality of life.”
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It’s amazing to see this phenomenon emerging in the public eye after working on it for the past year ourselves. More and more people are diving into tracking, with the powerful applications to health and improving patients’ quality of life just around the corner. 2009 will be an exciting year.

Photo by Timothy Archibald for The Wall Street Journal

“What a wonderful site this is.  I’ve had problems since 1983 and I remember feeling so alone and no one could understand even though I received a lot of compassion from my family.  So this site will really help a lot of people.”
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“Thank God there is someone out there that knows how i feel.”
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“The work you are doing looking at the connections between these conditions is so amazing. It is so important to look at the big picture the way CureTogether is! You don’t know how happy I am that someone is examining these connections!!!”
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Thanks so much for your comments! We always enjoy hearing from you, and it’s encouraging to know that our work is actually making a difference in your lives.

I also want to send out special Thanksgiving thoughts and wishes to all of you out there who are suffering instead of celebrating today. May we all find one small thing to be thankful for.

- Alexandra

“I have migraines, and I have tried many things to ease the pain. While I had incidents of migraines as a child, they really started in earnest after my second child was born, over 25 years ago. I’ve listed what I’ve tried below, what worked and what didn’t, and I’d love to hear what worked for others!

* Fiorinal
The first drug I was given was Fiorinal.  Not something I would recommend. It gave me a buzz and had a rebound effect so that the headaches came back stronger after 4 days.

* Allergies
I was tested for allergies to certain foods and other triggers for migraines and I try to avoid those now: beans, corn, mountain ash.

* Biofeedback
I then tried biofeedback which was at the time an experimental process. They monitored the body’s involuntary physical responses: such as breathing, pulse, heart rate, temperature, muscle tension and brain activity through an electrical device that was attached to my finger.  The objective was to see if changing breathing patterns affected the incidence of migraines.  It did not but it did reduce the severity at times.

* Demerol/Gravol
On occasions when I have been immobile from the headaches and vomiting, I have been given Demerol and Gravol injections.  They put you to sleep and eliminate the symptoms.

* Botox
I have also tried Botox since studies show that it assists in migraines.  It’s effective but expensive and who really knows what the long-term effects are.

* Meditation
Now I try to meditate as much as possible and at severe times, I take Gravol followed by Tylenol 3.

* Early detection
The trick is to catch the migraine at the beginning.  If I can, sometimes just some Advil gel will work because it dissolves instantly.  Once a migraine starts there is nothing to be done but endure it.  This can sometime take up to 4 days and is both debilitating and unproductive.

* Acupuncture
It has provided some temporary relief. But be careful who you use.  The first acupuncturist I tried was  a local chiropractor who said he specialized in this practice.  He placed the needles in the wrong places (directly to the head instead of the back of the neck) and immediately triggered a massive migraine.  The second acupuncturist I tried was the head of a college for acupuncturist.  His results were better.

* Herbs and vitamins
I have tried a variety of herbal remedies such as feverfew and vitamin compounds which included B vitamins which are labelled as helpful.  Again not much relief.

* Heat
One of the things that really helps, if you catch the migraine early enough is applying a hot pad at the base of the neck for as long as you can stand it.  It relaxes the neck and, when combined with a strong cup of coffee, seems to work.  But the trick is to catch the migraine at its outset.  Since I get most of my headaches overnight, it is not always easy to catch.

* Selective serotonin receptor agonists (triptans)
They work by reversing the dilation of blood vessels in the head, stopping pain signals from being sent to the brain, and reducing inflammation in the tissues and nerves surrounding the dilated blood vessels. They did relieve the headache almost immediately but had unfortunate side effects of dizziness, violent diarrhea and uncontrollable vomiting.  Needless to say I only tried it once. However, there are now seven medications in this class (Imitrex, Maxalt, Zomig, Amerge, Relpax, Axert, and Frova), so trying more than one can be a good idea.

Just writing about migraines is almost bringing one on. Thanks for reading and I hope it helps.”
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Thank YOU for writing. If anyone would like to share their experience with migraine, please either leave a comment below, or see what others are saying on the CureTogether Migraine page. Wishing you a pain-free day.

Take Fibromyalgia as an example. People who checked off Fibromyalgia symptoms at CureTogether also reported symptoms for the following conditions:
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• Endometriosis
• Vulvodynia
• Discoid Lupus Erthematosus
• Interstitial Cystitis
• Irritable Bowel Syndrome
• Obstructive sleep apnea
• Pelvic Congestion Syndrome
• TMJ Disorder
• Anemia
• Arthritic Hips
• Bipolar Disorder
• Candidiasis
• Chronic Fatigue Syndrome
• MCSS
• Neuropathy

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The fact that Fibromyalgia and these other conditions occur simultaneously in the same bodies is a huge challenge for people living with these conditions, but also an important clue to consider for research.

It’s also helping members directly. One member wrote in to say that it was “interesting” to see TMJ (lockjaw) and endometriosis listed as related conditions. She had both conditions but had never considered that other people might have the same combination or that the two conditions might be connected in some way.

Another example comes from recent news. Researchers at the Fred Hutchinson Cancer Research Center in Seattle reported last week that women who have a history of migraine headaches have a 30% lower risk of developing breast cancer than women who have no migraine history. The link between these two diseases is thought to be the lower estrogen levels that is often found in women with migraines, which also has a protective effect against breast cancer.

Given these examples, it looks like studying the overlap between multiple conditions, what they have in common and where the differences lie, may be a key to finding important insights into how these diseases work and how to treat them. This is step one on a long road of discovery ahead, but what an exciting first step.

If you have one or more related conditions, join in the research process and let us know (anonymously of course!) by posting a comment below or visiting CureTogether’s conditions page and clicking on your conditions. Every connection, every person, every click is a new piece of the puzzle.

“The first day I had sex again I cried. But this time it wasn’t because I was in pain. The uncontrollable tears came from what felt like years of my life lost to vulvodynia and now finally having a chance at a pain-free life. I don’t know how I got through my trial with vulvodynia, there were times I really felt like letting go. It was the most horrible period of my life and now all I want to do is to help other women from ever going through the torture I went through to becoming cured.

It’s hard to say exactly when it all started, as my case of vulvodynia gradually reared its ugly head over time. I began seeing doctors for it probably about 4 years ago, and last year it became so debilitating I could barely get out of bed. My case actually started with what was diagnosed as vestibulitus (the typical q-tip test) with pain only on contact. Later it became full-blown vulvodynia: red, raw, inflamed vulvar pain all over with no cause in site.

I tried everything! I tried the typical and somewhat forced abstinence from any sex for a full year (while I had a boyfriend). Upon doctor’s recommendations I took treatments like Nyastatin, Clobetosol, Lidocaine, Vitamin E, tea tree oil, boric acid, Estrace creams, testosterone ointments, anti-yeast creams, Diflucanzole, SSRI’s, anti-histamines, and antibiotics. I visited other types of doctors, allergists, naturopaths, nurse practitioners, muscle-testers, acupuncturists, herbalists, and nutritionists. I tried natural approaches like fasting/detox with colonics, exercise, and dieting (non-oxalate, raw foods, and elimination diets) for months at a time, as well as regular yoga and meditation. I went to counseling and emotional therapies because some experts will say we’re holding negative emotions inside that exert as physical pain. Every day I meditated, used the power of positive thinking, and visualized my inflammation going away. I even envisioned having sex that felt good (which is really hard to do when you’re in that much pain). I minimized every last ounce of stress from my life. I fanned my “area” dry everyday. I stopped wearing underwear. I tried so hard people thought my problem might be from trying too hard. (But what else can you do when you’re in that much pain?) I was asked to embrace the pain and thank it for sharing, to let go, and everything would get better. Well, that didn’t work either.

Perhaps some of these things were working or could have worked, but the problem was deeper. My vulvodynia was so relentless it couldn’t be resolved until I addressed the real health issue. Through tracking my symptoms everyday and graphing them over time, I was able to identify an extreme hormonal imbalance. I had inadvertently gone into menopause at age 25. I desperately didn’t want to do hormone replacement therapy because I felt the birth control pill (artificial hormones) is what had gotten me into this mess in the first place. With enough time working at my hormones through natural approaches (especially high quality vitamins and herbs), I finally conquered the condition I thought was going to rule the rest of my life.

Since my cure all I’ve wanted to do is help other women avoid going through the painful trials and errors I did. I considered becoming a doctor to fill a dire niche and makeup for all the help I didn’t receive. Fortunately this all could be done on a grander scale. I came across a scientific team of like-minds who endured vulvodynia for more than 10 years and all the effects of such debilitating conditions. It was clear we could have suffered a lot less if we only knew what treatments were working for other people with our specific symptoms and what experiments had already failed. Their vision was to bring patients, doctors, and researchers together to share and learn from each other at a central hub called CureTogether. With research being chronically under-funded, we knew together we could help it go faster in the lab and outside the lab. In addition to treatment reviews, we specifically wanted to open up research to everyone. Symptoms could be tracked over time and evaluated in graphs to find unique problem areas. Patients could have the option to anonymously compare their results and graphs with others to learn even more. The possibilities for discovery were endless. Because of our personal experience with vulvodynia, it was one of the first conditions studied: http://www.curetogether.com/Vulvodynia/

For my entire emotional experience with Vulvodynia visit my blog “The Full Vulvodynia Story” here with EmpowHer. Leave me comments and questions, I’m all ears. You can also find detailed reviews of all the specific treatments from me and others (successes and failures) at CureTogether’s Vulvodynia-Treatment page. Please share your experience too. We’re all in this together, and we can all help each other.”
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Thank you so much for sharing your story!! As always, if you would like to share your story, please write to Alexandra. All stories will be posted anonymously.