I definitely think we all need and deserve better Migraine treatments. For prevention, we do have many medications to try, but did you know that not a single one of them was actually developed for Migraine? No, not one. Why? One reason is that there needs to be far more research into the exact cause of Migraine and what happens in the brain during a Migraine attack. That kind of research is the basis of research for more effective treatments. BUT, the amount of research funding from the NIH for Migraine and headache research is abysmally low.
A new organization, the Alliance for Headache Disorders Advocacy, is working hard to increase that funding. BUT they can't do it alone. They need our help. To find out what we can do to help, please read Teri Robert's blog entry, Headache On the Hill Update - the AHDA and You!
Happy Holidays,
Abi
Friday, December 21, 2007
Wednesday, October 10, 2007
I loathe these people...
This has nothing whatsoever to do with Migraines, but I'm so angry that I had to post about this. It's still a pain trigger. A pain in the ass. I received this email this morning:Dear friend,He will expect a straight answer from me?! Of all the nerve!
My name is Sgt. David Pam, I am an American soldier with Swiss background, serving in the military with the army's 3rd infantry division. With a very desperate need for assistance, I have summed up courage to contact you.
I found your contact particulars in an address journal. I am seeking your kind assistance to move the sum of ( $ 25 million u.s. dollars ) Twenty Five million united states dollars to you, as far as I can be assured that my share will be safe in your care until I complete my service here, this is no stolen money, and there are no danger involved.
Source of money:
Some money in various currencies was discovered in barrels at a farmhouse near one of Saddam¡¯s old palaces in Tikrit-Iraq during a rescue operation, and it was agreed by staff Sgt Phillip Brain and I that some part of this money be shared among both of us before informing anybody about it since both of us saw the money first. This was quite an illegal thing to do, but I tell you what? No compensation can make up for the risk we have taken with our lives in this hell hole. Of which my brother in-law was killed by a road side bomb last week.
The above figure was given to me as my share, and to conceal this kind of money became a problem for me, so with the help of a British contact working here and his office enjoy some immunity, I was able to get the package out to a safe location entirely out of trouble spot. he does not know the real contents of the package, and believes that it belongs to a brithish/american medical doctor who died in a raid here in Iraq, and before giving up, trusted me to hand over the package to his family in united states.
I have now found a much secured way of getting the package out of Iraq to your country for you to pick up, and I will discuss this with you when I am sure that you are willing to assist me. I want you to tell me how much you will take from this money for the assistance you will give to me.
One passionate appeal I will make to you is not to discuss this matter with anybody, should you have reasons to reject this offer, please and please destroy this message as any leakage of this information will be too bad for us soldier's here in Iraq. I do not know how long we will remain here, and i have been shot, wounded and survived two suicide bomb attacks by the special grace of god, this and other reasons i will mention later has prompted me to reach out for help, i honestly want this matter to be resolved immediately.
If you are willing to assist me and also that you will not betray me as soon as the fund gets to your hand,please kindly get back to me.
I will expect a straight answer from you. Yes or no. All correspondences will be via email, for now.
Please Send me an e-mail via my private email address: sgtdavidpm1@yahoo.com
as you receive this letter for further discussion and more clarification.
Best of luck,
Sgt .David Pam
This kind of email usually just mildly irritates me, but this one totally pissed me off. I find it particularly heinous that he's claiming to be an American soldier. He's no soldier, and I am not his "friend." How dare he claim to be an American soldier! Our soldiers do not deserve to be defamed in this fashion.
If any of you receive this or similar emails -- please, please, please do not be taken in by them. No matter how sincere they may seem, they are a scam. People who need help transferring money, paying for medical care for loved ones, and other such issues do NOT blindly email strangers.
If anyone who perpetrates such scams happens upon this blog, I have one thing to say to you... There is a special place in hell for you. May you reach it soon!
Shalom,
Abi
Friday, September 14, 2007
Art exhibit accepting submissions on Migraine and other pain
American Pain Foundation and The HealthCentral Network: Call for Artistic Submissions for Creativity and Pain Exhibit
Deadline for Entries is September 20, 2007
Deadline for Entries is September 20, 2007
The American Pain Foundation (“APF”) and project partner The HealthCentral Network, Inc. (www.HealthCentral.com) is accepting entries for the 2007 APF Pain and Creativity Exhibit. This online exhibit will showcase all contributing artists and their work, including visual arts, inspirational videos, poetry, and quilt squares. Select submissions will be chosen for special promotion by APF. The Pain and Creativity community will be ongoing, but to be considered for special honor in the Exhibit, and at the APF’s 10th Anniversary Celebration in October, submissions must be received by September 20th. Entries can be submitted at www.healthcentral.com/chronic-pain/apf/
“HealthCentral.com is pleased to be working with the American Pain Foundation to host the Pain and Creativity Exhibit—a virtual space where anyone can share their painting, drawings, sculpture, and video with other individuals dealing with pain,” said Bill Allman, General Manager of HealthCentral. “Art can play a major role in expressing and working through chronic pain, and we believe that the Pain and Creativity Exhibit offers a flexible, supportive environment in which to do this.”
“Recognizing that we are all creative and have the power to turn adversity into opportunity, we would like to expand our Pain and Creativity network to connect artists and their expressions of pain through an online exhibit of creative work,” said Will Rowe, Executive Director of APF. “Our hope is that the submissions to the Pain and Creativity Exhibit come in a variety of forms, including film, sculpture, words, painting and quilt blocks, from people who have pain or from people who are affected by pain.”
Entrants can contribute poetry, prose, a digital photo of their artwork, or an inspirational video that tells the story of how pain can affect one’s life. Along with their submission, entrants also need to include a paragraph that describes how their piece of art represents their pain experience.
A related project sponsored by APF in conjunction with the Lagniappe Project of Baltimore is calling for the submission of quilt blocks for the inclusion in a quilt which will reflect the experience of pain. Quilts are a literal and figurative symbol of comfort and the joining of patchwork is a symbol of unity and community. Through the block design, construction, and joining to create a finished quilt, we hope that the artist finds comfort and unity. The finished quilts will be exhibited at the APF’s 10th Anniversary Celebration in October and will be used for fundraising purposes through the Celebration Auction and/or through other fundraising efforts. For more information on quilt square requirements, CLICK HERE.
The deadline for all submissions is Thursday, September 20.
* * * * * * * * *
About The HealthCentral Network
The HealthCentral Network, Inc. (www.healthcentral.com) is a new and unique online offering, comprised of over 30 general health and highly specific condition and wellness web properties, each committed to offering a voice in everyday and personal language people can understand and connect with at critical points in their lives. Each site provides timely, interactive, in-depth and trusted medical information (from Harvard Health Publications among others), and connections to leading experts and thousands of people who share their related experiences and inspiration.
About the American Pain Foundation
Founded in 1997, the American Pain Foundation is an independent nonprofit 501(c)3 organization serving people with pain through information, advocacy, and support. Our mission is to improve the quality of life of people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management. For more information, visit www.painfoundation.org.
Follow up to ERs from hell
As I followed ERnursey's blog after my last post, I came to like the lady. She took time to answer a couple of comments to her blog and explain the difference between her saying 'migraine' and migraine.
All in all, what she has to say is very similar to what genuine Migraineurs say. Here's a quote from one of her entries:
It's rather sad that what could have been a productive discussion soured very quickly, especially when an ER doctor decided to continue it on his blog and deliberately "baited" the Migraineurs who were trying, for the most part, to participate in a civil, adult conversation. Then there was another ER nurse who has decided to be a total cretin, making comments such as "migraine is the new fibromyalgia.
It's clear that most of these people either have never been ill or they've been very fortunate that the medical professionals who treated them were their ultimate superiors in professionalism, compassion, and plain old human decency.
Still, good doctors and nurses are some of the most underrated people on the face of the earth. Everybody wants to fuss at them if there's the slightest problem; few people think to thank them.
IMO, patients and those doctors and nurses have more in common than the docs and nurses think. Bad experiences with people with 'migraines' have left some of them highly suspicious of everyone who even says the word Migraine. On the flip side, patients who have had the horror of a doctor who was an ass or incompetent (and, yes, as with any profession, there are good doctors and bad) often don't give other doctors a fair shake.
I can't help but be sad about some of the callous and unnecessary comments I read on those blogs over the weekend. Ah, well. A few of the people posting comments mentioned Karma, something I believe is very real. That gives me comfort and yes, brings a bit of a grin to my face.
Namaste,
Abi
All in all, what she has to say is very similar to what genuine Migraineurs say. Here's a quote from one of her entries:
People with migraines are on preventative, anti-nausea and abortive meds. They come to the ER as a last resort when their usual medications have been tried and failed.
People with 'migraines' are not on any migraine management meds and will often state allergies to them. In fact they are usually allergic to everything but Demerol or Dilaudid.
It's rather sad that what could have been a productive discussion soured very quickly, especially when an ER doctor decided to continue it on his blog and deliberately "baited" the Migraineurs who were trying, for the most part, to participate in a civil, adult conversation. Then there was another ER nurse who has decided to be a total cretin, making comments such as "migraine is the new fibromyalgia.
It's clear that most of these people either have never been ill or they've been very fortunate that the medical professionals who treated them were their ultimate superiors in professionalism, compassion, and plain old human decency.
Still, good doctors and nurses are some of the most underrated people on the face of the earth. Everybody wants to fuss at them if there's the slightest problem; few people think to thank them.
IMO, patients and those doctors and nurses have more in common than the docs and nurses think. Bad experiences with people with 'migraines' have left some of them highly suspicious of everyone who even says the word Migraine. On the flip side, patients who have had the horror of a doctor who was an ass or incompetent (and, yes, as with any profession, there are good doctors and bad) often don't give other doctors a fair shake.
I can't help but be sad about some of the callous and unnecessary comments I read on those blogs over the weekend. Ah, well. A few of the people posting comments mentioned Karma, something I believe is very real. That gives me comfort and yes, brings a bit of a grin to my face.
Namaste,
Abi
Saturday, September 08, 2007
Every wonder why some ERs are Migraine hell?
Most Migraineurs avoid the ER like the plague. We want to treat our Migraines at home -- conveniently, while retaining our dignity, and without taking up valuable ER space and time.
Another reason is that so many of us have been dismissed as having "just a headache" or even been accused of being a "drug seeker," there just to try to get opioids. We've encountered ER doctors and nurses who have treated us like dirt.
I understand fully that the two biggest reasons people give for being in the ER are back pain and Migraines. I fully understand that people who don't have Migraines often lie to ER staff and say they do to get opiods. I get it! Still, there are times when some Migraineurs have no choice but to go to the ER. Most of our doctors tell us to go to the ER if we're having the worst Migraine ever, if our meds we take at home didn't work and we're still in severe pain, or if we have stroke-like symptoms that we don't usually have with our Migraines.
But some ER doctors and nurses choose to view all Migraineurs as fakes or someone with a headache who doesn't need to be taking up their time. I'm not going to stoop so low as to view all ER doctors as nurses as behaving that way. They don't, but we don't have the luxury of picking and choosing who treats us when we must resort to the ER.
To illustrate the attitudes of some ER personnel, I'm offer you a quote from a blog entry written by an ER nurse:
Now, to illustrate an ER doctor's attitude, here's part of a reply he wrote to Teri Robert's comment on the original blog entry:
This, my friends, is pathetic. The ER nurse describes herself as "A hardworking ER nurse trying to survive until retirement and if I can have little fun or have a positive impact on someone's life, all the better!" Positive impact on someone's life? I'm sure she does, but I'm equally sure she's had some cases where she had a very negative impact.
If you'd like to take a look at this blog entry, it's called "Another Blog Voice on Patient Satisfaction Scores."
Shalom,
Abi
Another reason is that so many of us have been dismissed as having "just a headache" or even been accused of being a "drug seeker," there just to try to get opioids. We've encountered ER doctors and nurses who have treated us like dirt.
I understand fully that the two biggest reasons people give for being in the ER are back pain and Migraines. I fully understand that people who don't have Migraines often lie to ER staff and say they do to get opiods. I get it! Still, there are times when some Migraineurs have no choice but to go to the ER. Most of our doctors tell us to go to the ER if we're having the worst Migraine ever, if our meds we take at home didn't work and we're still in severe pain, or if we have stroke-like symptoms that we don't usually have with our Migraines.
But some ER doctors and nurses choose to view all Migraineurs as fakes or someone with a headache who doesn't need to be taking up their time. I'm not going to stoop so low as to view all ER doctors as nurses as behaving that way. They don't, but we don't have the luxury of picking and choosing who treats us when we must resort to the ER.
To illustrate the attitudes of some ER personnel, I'm offer you a quote from a blog entry written by an ER nurse:
"...If we have to do a patient satisfaction score, let's ensure that they are only given to the people who really needed to be in the ER to begin with. And that leaves out the vast majority of the prompt care patients. Don't give them to the 'back pain' and 'migraine' crowd, give them to the pneumonia, kidney stone etc and make sure to give on to everyone that was admitted..."
Now, to illustrate an ER doctor's attitude, here's part of a reply he wrote to Teri Robert's comment on the original blog entry:
"...Headache without neuro symptoms? Sorry, we have to see the sick patients first. Please wait in your room."
This, my friends, is pathetic. The ER nurse describes herself as "A hardworking ER nurse trying to survive until retirement and if I can have little fun or have a positive impact on someone's life, all the better!" Positive impact on someone's life? I'm sure she does, but I'm equally sure she's had some cases where she had a very negative impact.
If you'd like to take a look at this blog entry, it's called "Another Blog Voice on Patient Satisfaction Scores."
Shalom,
Abi
Sunday, August 26, 2007
Migraine and Stroke -- Video
Migraine and stroke risk, although nothing to sound extreme alarm bells over, is definitely something all Migraineurs should know about. It's in our best interests to talk with our doctors about how we live and what we can do to reduce other risks of stroke.Looking around today, I came across a blog entry by Teri Robert at MyMigraineConnection that features two YouTube videos. These videos were made by a woman who had a stroke that her doctor attributes to Migraine.
Take a look at this blog entry and the videos in Video from woman who had stroke from Migraine.
Shalom,
Abi
Saturday, August 25, 2007
Diagnois is the first step with Migraines
It's estimated that half of those living with Migraine disease haven't been diagnosed. I know several people whom I really think are among the undiagnosed.
Take Sylvia (not her real name) for an example. Sylvia has severe, throbbing "headaches" accompanied by:
Actress Marcia Cross is a Migraineur and was part of a campaign to educate people and encourage diagnosis. Here's video of a television commercial from that campaign.
Please, take Ms. Cross's advice and see your doctor if you have unexplained "headaches."
Shalom,
Abi
Take Sylvia (not her real name) for an example. Sylvia has severe, throbbing "headaches" accompanied by:
- heightened sensitivity to light (photophobia) and sound (phonophobia),
- horrid nausea,
- and mood swings.
Actress Marcia Cross is a Migraineur and was part of a campaign to educate people and encourage diagnosis. Here's video of a television commercial from that campaign.
Please, take Ms. Cross's advice and see your doctor if you have unexplained "headaches."
Shalom,
Abi
Wednesday, July 11, 2007
Wikipedia has really gone too far!
Dear Friends,
I would seldom even consider doing something like this, but I've been driven to it. I'm asking that we ALL stop using Wikipedia. You may think I'm exaggerating, but they are setting back Migraine DISEASE advocacy by years in the minds of anyone who takes them seriously.
Somewhere along the line, some misguided soul decided that the experts who had worked on the Migraine page and added many, many valid references were wrong; that Migraine is a disorder, NOT a disease. For proof, they went to the NINDS site, which most of us realize is always years behind current science. They also went to the NHF site. Now, on the NHF site, there are places were Migraine is referred to as a disease and some where it's referred to as a disorder. The "discussion" went into their dispute resolution process, and they will hear no more discussion on it, even from some of the world's leading experts in the field.
My blunt and honest opinion -- what started out as a good idea has turned into a site that sucks. There are all these "editors" who don't know their butt from a hole in the ground who think they're experts because they know how to go read a couple of web sites. They don't care how old the data is that they find; they only care about winning their point.
So, let's just stay away from Wikipedia. There are plenty of good sites. Wikipedia is no longer among them, and I see little hope for their return to sense and good information.
I would seldom even consider doing something like this, but I've been driven to it. I'm asking that we ALL stop using Wikipedia. You may think I'm exaggerating, but they are setting back Migraine DISEASE advocacy by years in the minds of anyone who takes them seriously.
Somewhere along the line, some misguided soul decided that the experts who had worked on the Migraine page and added many, many valid references were wrong; that Migraine is a disorder, NOT a disease. For proof, they went to the NINDS site, which most of us realize is always years behind current science. They also went to the NHF site. Now, on the NHF site, there are places were Migraine is referred to as a disease and some where it's referred to as a disorder. The "discussion" went into their dispute resolution process, and they will hear no more discussion on it, even from some of the world's leading experts in the field.
My blunt and honest opinion -- what started out as a good idea has turned into a site that sucks. There are all these "editors" who don't know their butt from a hole in the ground who think they're experts because they know how to go read a couple of web sites. They don't care how old the data is that they find; they only care about winning their point.So, let's just stay away from Wikipedia. There are plenty of good sites. Wikipedia is no longer among them, and I see little hope for their return to sense and good information.
Saturday, July 07, 2007
Whining about Migraines -- Here's some honesty!
It can be really hard to know what to say to someone suffering with a Migraine or headache. You want to be kind, sympathetic, helpful. I would imagine that if you're a professional in the field -- educating, supporting, and advocating for Migraineurs -- you have to walk a fine line. You'd want to do all that being kind, sympathetic, but you might not know how to handle (drum roll, please)... the whiners and drama queens! OK. I've said it, the "w" word. Some of us can be whiners. If you frequent message boards, you know the type. About once a week (if you're lucky, it's ONLY once a week), they post virtually the same "vent" they posted the week before. Some of them will even ask for advice. The problem is that they never take anyone's advice, and they never get off their butts and do anything about their situation.
I don't think I've used this word to describe Teri Robert before, but she's brave. Yesterday, she wrote a blog entry entitled "Yes, Migraines and headaches are awful, but don't be a whiner or drama queen!" Damn! I almost spit coffee all over my monitor when I read it. She was more diplomatic about it than I could have been, but that's Teri. If anyone knows what a Migraineur goes faces, she does. If anyone understands the dangers of falling into whining, she does.
What Teri did in her blog that maybe nobody else knows how to do is to explain the difference between "venting" and "whining." She even explains how to vent without whining.
Way to go, Teri, and thanks!
Namaste,
Abi
I don't think I've used this word to describe Teri Robert before, but she's brave. Yesterday, she wrote a blog entry entitled "Yes, Migraines and headaches are awful, but don't be a whiner or drama queen!" Damn! I almost spit coffee all over my monitor when I read it. She was more diplomatic about it than I could have been, but that's Teri. If anyone knows what a Migraineur goes faces, she does. If anyone understands the dangers of falling into whining, she does.
What Teri did in her blog that maybe nobody else knows how to do is to explain the difference between "venting" and "whining." She even explains how to vent without whining.
Way to go, Teri, and thanks!
Namaste,
Abi
Tuesday, June 26, 2007
Wow! A "Top Migraine and Headache Site" Award!
Today, I received an email from Dan Marschinke, the producer of MyMigraineConnection.com. Part of it read:
Here's the HealthCentral press release, which explains more about these awards:
ARLINGTON, VA- June 27, 2007- The HealthCentral Network, Inc. (www.HealthCentral.com), a leading online consumer health destination, today announced awards for the top Web sites and blogs dedicated to educating and supporting individuals living with Migraines and fostering the online Migraine community.
HealthCentral.com’s First Annual Top Site Awards recognize the Web’s best sites, from individual blogs to small Web sites, each committed to providing personal, quality information, support and inspiration to Migraineurs, caregivers, and their family and friends. The recipients of the award share HealthCentral.com’s mission in highlighting the patient voice in health information.
“We rely greatly on the advice and personal experiences of friends and family in all facets of life and managing a health condition is no different,” said Chris Schroeder, CEO and President of The HealthCentral Network (THCN). “This year’s Top Sites recognize the importance of sharing and learning from other people who have real life experience dealing with Migraines and join HealthCentral.com in providing trusted, personal information and support to the Migraine community.”
A team of experts from THCN’s Migraine site, MyMigraineConnection.com, chose this year’s top Migraine and Headache sites after reviewing and analyzing the most popular and influential Web sites focused on living with Migraines.
“The face of healthcare is changing. Studies show that patients who are better educated about their conditions and take part in the decision making process are more compliant with their treatment regimens and have better outcomes,” said Teri Robert, founder of Top Award winner HelpforHeadaches.com and Lead Expert Patient on MyMigraineConnection.com. “That's in no small part due to the impact the Internet has made on making information available. Paired with well researched and written content, online communities provide Migraineurs a place to share information, ask questions, and get vital support -- support from people who truly understand their situations. That kind of support can make the difference that keeps us looking for effective treatment rather than giving up and living in pain.”
The 2007 HealthCentral.com Top Migraine and Headache Sites:
The HealthCentral Network, Inc. (www.HealthCentral.com) is a new and unique online offering, comprised of more than 30 health and highly specific condition web properties. Each site provides timely, interactive, in-depth, and trusted medical information from organizations including Harvard Health Publications among others, and connections to leading experts and thousands of people who share their related experiences and inspiration.
The HealthCentral Network was acquired in 2005 by Polaris Ventures, Sequoia Capital, The Carlyle Group and Allan & Company, and has built a management team that combines decades of experience in interactive media and medical, science, and news journalism. The company received top recognition from the International Health and Medical Media Awards with a 2006 FREDDIE Award for MyDiabetesCentral.com and the Health Care Standard of Excellence WebAward from the Web Marketing Association.
"I just wanted to congratulate you and let you know that we’ve selected Abi’s Migrainous Wanderings as one of our Top Site Award Recipients! We’re honoring the ten best Migraine and headache blogs and sites on the Web, as picked by our experts."Especially since I've been watching MyMigraineConnection become better and better, I'm very honored that my blog has received this award. Thank you
Here's the HealthCentral press release, which explains more about these awards:
HealthCentral.com Recognizes Top Migraine Web Sites and Blogs
ARLINGTON, VA- June 27, 2007- The HealthCentral Network, Inc. (www.HealthCentral.com), a leading online consumer health destination, today announced awards for the top Web sites and blogs dedicated to educating and supporting individuals living with Migraines and fostering the online Migraine community.
HealthCentral.com’s First Annual Top Site Awards recognize the Web’s best sites, from individual blogs to small Web sites, each committed to providing personal, quality information, support and inspiration to Migraineurs, caregivers, and their family and friends. The recipients of the award share HealthCentral.com’s mission in highlighting the patient voice in health information.
“We rely greatly on the advice and personal experiences of friends and family in all facets of life and managing a health condition is no different,” said Chris Schroeder, CEO and President of The HealthCentral Network (THCN). “This year’s Top Sites recognize the importance of sharing and learning from other people who have real life experience dealing with Migraines and join HealthCentral.com in providing trusted, personal information and support to the Migraine community.”
A team of experts from THCN’s Migraine site, MyMigraineConnection.com, chose this year’s top Migraine and Headache sites after reviewing and analyzing the most popular and influential Web sites focused on living with Migraines.
“The face of healthcare is changing. Studies show that patients who are better educated about their conditions and take part in the decision making process are more compliant with their treatment regimens and have better outcomes,” said Teri Robert, founder of Top Award winner HelpforHeadaches.com and Lead Expert Patient on MyMigraineConnection.com. “That's in no small part due to the impact the Internet has made on making information available. Paired with well researched and written content, online communities provide Migraineurs a place to share information, ask questions, and get vital support -- support from people who truly understand their situations. That kind of support can make the difference that keeps us looking for effective treatment rather than giving up and living in pain.”
The 2007 HealthCentral.com Top Migraine and Headache Sites:
The Daily Headache http://www.thedailyheadache.com/About the HealthCentral Network
MigraineCast http://www.migrainecast.com/
Abi's Migrainous Wanderings http://abimigraines.blogspot.com/index.html
Migraine Blog http://www.migraineblog.com/
Her Life in a Nutshell http://joannab.wordpress.com/
Help For Headaches & Migraines http://helpforheadaches.com/
Migraine Chick http://migrainechickie.blogspot.com/
Weathering Migraine Storms http://weatheringmigrainestorms.blogspot.com/
A ClusterHead’s Life http://versilleus.blogspot.com/
Somebody Heal Me http://migraineur.blogspot.com/
The HealthCentral Network, Inc. (www.HealthCentral.com) is a new and unique online offering, comprised of more than 30 health and highly specific condition web properties. Each site provides timely, interactive, in-depth, and trusted medical information from organizations including Harvard Health Publications among others, and connections to leading experts and thousands of people who share their related experiences and inspiration.
The HealthCentral Network was acquired in 2005 by Polaris Ventures, Sequoia Capital, The Carlyle Group and Allan & Company, and has built a management team that combines decades of experience in interactive media and medical, science, and news journalism. The company received top recognition from the International Health and Medical Media Awards with a 2006 FREDDIE Award for MyDiabetesCentral.com and the Health Care Standard of Excellence WebAward from the Web Marketing Association.
Saturday, June 23, 2007
Congrats - The Daily Headache Celebrating Blogiversary!
A belated happy blogiversary goes to Kerrie at The Daily Headache! The Daily headache has become one of the best headache and Migraine blogs around. Kerrie celebrated The Daily Headache's second "blogiversary" this past week.If you aren't familiar with it, check it out. You'll love it!
Friday, June 22, 2007
One chiropractor's claims - arrogance, ignorance, or delusion?
Yesterday evening, I came across a post on the MAGNUM guestbook that I'm now told was approved by accident and has now been removed by their Support Advisor, Teri Robert. It was from a chiropractor who claimed, "EVERY single migraine sufferer I've ever cared for has no longer suffered from migraines after, some had 100% relief after just 1 visit." He had included the URL for his Web site. I call that post "spam;" he says, "I only put on the link so you and other could see the testimonials." His name isn't important, and I'm not going to give him the benefit of Internet exposure by posting it.
I made the mistake of emailing this "world-class doctor of chiropractic" thinking he might actually have something of value to offer Migraineurs IF he would just understand that no treatment is effective for everyone and that effective treatment often includes treatments from more than one modality of treatment.
In his reply to me, he made several assumptions...
I guess I enjoyed the laughs. Although attempting an adult, professional conversation with him was a futile attempt at best, such attempts are still worth a shot.
This exchange does leave me a bit puzzled though. I can't decide if I think this man is speaking from arrogance, from ignorance, or if he's just delusional about his own knowledge, skills, and expertise.
Thanks for the laughs and verifying that you're a total ass, Mr. "world-class doctor of chiropractic!"
Namaste,
Abi
I made the mistake of emailing this "world-class doctor of chiropractic" thinking he might actually have something of value to offer Migraineurs IF he would just understand that no treatment is effective for everyone and that effective treatment often includes treatments from more than one modality of treatment.
In his reply to me, he made several assumptions...
- that I needed help with my Migraines;
- that I needed to "open my mind and wise up for my own good;" and
- "those you've encountered so far in your search have all had training or vested interests in keeping you a prisoner of your migraines."
- "You medical people generally make things waaay to complicated. 99 out of 100 migraines (at least) are simple to resolve." In a way, he's not far off in one respect. Probably 85 out of 100 Migraines ARE simple to resolve. Whether the Migraineur employs biofeedback, meditation, or (heaven forbid) medications, the Migraines experienced by the majority of Migraineurs are simply treated. It's that other 15% that are difficult, potentially debilitating, and need expert care.
- "Seems liek you are too booksmart for your own good. I've studied real healthcare for 25 years, not what you would call "healthcare". I am not some symptom-chasing pawn of the medical establishment." He's studied "real healthcare for 25 years?" Hmmmmmmmm. He graduated from high school in 1989, 18 years ago. Maybe he was a precocious teenager.
- "Great minds are always at first ridiculed and unpopular, so your comments have not affect on me." Great minds? He seemed to be speaking of himself. Oh, well. He does have a healthy ego.
- "Open your mind, reverse your direction, seek a world-class doctor of chiropractic and you will find better success." He said this with absolutely no knowledge of my treatment or my current state of health. I had four Migraines in 2006, and I've had one so far in 2007. Do any of you think I need "better success?" I'm actually quite satisfied with my success.
I guess I enjoyed the laughs. Although attempting an adult, professional conversation with him was a futile attempt at best, such attempts are still worth a shot.
This exchange does leave me a bit puzzled though. I can't decide if I think this man is speaking from arrogance, from ignorance, or if he's just delusional about his own knowledge, skills, and expertise.
Thanks for the laughs and verifying that you're a total ass, Mr. "world-class doctor of chiropractic!"
Namaste,
Abi
Wednesday, June 13, 2007
News, news, and more news from the American Headache Society conference!
Every Migraineur's dear friend Teri Robert at MyMigraineConnection spent last week in Chicago at the 49th Annual Scientific Meeting of the American Headache Society. Teri attends this conference every year and always returns home with fodder for many articles in which she shares with us what she learned -- written in a way we can actually understand! To me, her articles are always more valuable than most "news" articles written on Migraine because she goes deeper and into more detail than most people who write on Migraine and Migraine news.
Already, her blog entries from the conference and the first article to come out of the conference proceedings have me waiting with great anticipation for more. Here's some of what she's shared so far:
To Teri -- Thank you, as always, for looking out for all of us and sharing so much valuable information. Oh, and a belated happy birthday!
Shalom,
Abi
Already, her blog entries from the conference and the first article to come out of the conference proceedings have me waiting with great anticipation for more. Here's some of what she's shared so far:
- Greetings from Chicago - the American Headache Society Conference. This is a fun post where Teri shares a video of her "remote headquarters."
Reporting from Chicago - A new Migraine abortive in trials. Merck has released results from their Phase II trials of MK-0974, an investigational oral calcitonin gene-related peptide (CGRP) antagonist. Teri spoke with Dr. Tony Ho, senior director of Clinical Neuroscience for Merck Research Laboratories to give us a great report on what's happening with this new medication. It looks very hopeful, even for Migraineurs with a history of heart or stroke issues!
- Back from the American Headache Society conference! Ever wonder what some of the "famous" doctors we read about look like? Teri has shared some super photos of a few of them.
To Teri -- Thank you, as always, for looking out for all of us and sharing so much valuable information. Oh, and a belated happy birthday!
Shalom,
Abi
Thursday, March 15, 2007
The "Gentle Dentist" and his philosophy.
I have Google News Alerts set so that I receive emails about news and new blog entries related to Migraine disease. They're generally interesting, and help me learn and stay up-t0-date. There are times, on the other hand, when one of the catches my eye for another reason -- doubting what I'm reading or even the reason someone wrote it in the first place.
Case in point, is a Blog Alert I received about half an hour ago. The title was "Migraine headache treatment," and it led to a blog titled "The Gentle Dentist." The description on the blog reads, "Press Releases and Ask The Dentist Q and A. This particular blog entry is of the Q & A variety, and the question was about Imitrex and the person asking the question having read that "there may be something I can do about it that doesn't involve drugs."
In his response, "The Gentle Dentist" states that, "Medications such as Imitrex have been used to help, but only in about 50% of the cases is there a resolution from the pain." Hmmmmmmm. That figure seemed low to me, so I did a bit of research. According the the University of Maryland, "Unfortunately, recurring headaches with sumatriptan develop within the first 24 hours in 20% to 40% of people who have taken the drug... Studies on the newer agents (triptans) have reported pain relief within two hours in between 60% and 91% of patients." That would seem to contradict the dentist blocker, but let's not go on just one source.
On the American Council for Headache Education site, I found this, "About three-quarters of migraine sufferers will report significant improvement within an hour after taking sumatriptan by injection. One-half to two-thirds will have a good response 2-4 hours after taking the oral form of sumatriptan.
The Gentle Dentist goes on to say, "There is a new dental device that has been approved by the FDA to treat migraine headaches and has been actually shown to be more effective than the medications." He's referring to the NTI-TSS, developed by Dr. Jim Boyd. The NTI device is excellent. However, what the blogger dentist doesn't mention is that it's not for acute treatment, bur for prevention, and is effective for a subset of Migraineurs, those with triggers related to the temperomandibular joint and the effect it can sometimes have on the trigeminal nerve. The main web site for the NTI-TSS device, www.nti-tss.com, states, "In a large percentage of migraine sufferers, the motor root which travels within the conduit of the (sensory) third division is hyperactive, commanding tremendous amounts of potentially damaging activity from the jaw muscles during sleep. This results in a bombardment of noxious (negative) information going back to the sensory nucleus, thereby sensitizing it, making the patient far more susceptible to migraine attacks."
Comments were closed on the Gentle Dentist's blog, so I couldn't leave him a comment there. If I could have, I'd have
******************
Notes:
The Gentle Dentist can be found on his own blog.
My info on Imitrex success rates came from:
Case in point, is a Blog Alert I received about half an hour ago. The title was "Migraine headache treatment," and it led to a blog titled "The Gentle Dentist." The description on the blog reads, "Press Releases and Ask The Dentist Q and A. This particular blog entry is of the Q & A variety, and the question was about Imitrex and the person asking the question having read that "there may be something I can do about it that doesn't involve drugs."
In his response, "The Gentle Dentist" states that, "Medications such as Imitrex have been used to help, but only in about 50% of the cases is there a resolution from the pain." Hmmmmmmm. That figure seemed low to me, so I did a bit of research. According the the University of Maryland, "Unfortunately, recurring headaches with sumatriptan develop within the first 24 hours in 20% to 40% of people who have taken the drug... Studies on the newer agents (triptans) have reported pain relief within two hours in between 60% and 91% of patients." That would seem to contradict the dentist blocker, but let's not go on just one source.
On the American Council for Headache Education site, I found this, "About three-quarters of migraine sufferers will report significant improvement within an hour after taking sumatriptan by injection. One-half to two-thirds will have a good response 2-4 hours after taking the oral form of sumatriptan.
The Gentle Dentist goes on to say, "There is a new dental device that has been approved by the FDA to treat migraine headaches and has been actually shown to be more effective than the medications." He's referring to the NTI-TSS, developed by Dr. Jim Boyd. The NTI device is excellent. However, what the blogger dentist doesn't mention is that it's not for acute treatment, bur for prevention, and is effective for a subset of Migraineurs, those with triggers related to the temperomandibular joint and the effect it can sometimes have on the trigeminal nerve. The main web site for the NTI-TSS device, www.nti-tss.com, states, "In a large percentage of migraine sufferers, the motor root which travels within the conduit of the (sensory) third division is hyperactive, commanding tremendous amounts of potentially damaging activity from the jaw muscles during sleep. This results in a bombardment of noxious (negative) information going back to the sensory nucleus, thereby sensitizing it, making the patient far more susceptible to migraine attacks."
Comments were closed on the Gentle Dentist's blog, so I couldn't leave him a comment there. If I could have, I'd have
- asked him to check his statistics on the success rate of Imitrex
- suggested that it was a bit narrow of him to only mention one of many Migraine treatments
- pointed out that it would be helpful to say that the device is appropriate for a subset of Migraineurs, not all.
******************
Notes:
The Gentle Dentist can be found on his own blog.
My info on Imitrex success rates came from:
Saturday, March 03, 2007
The Daily Headache
UGH! A daily headache or Migraine isn't something I'd wish on anyone. BUT, there is a great blog entitled "The Daily Headache." If you haven't read it, you're missing out on a great blog written informatively and with superb wit and humor.
The so-called "Migraine personality" was debunked years ago. Well, at least that's what I thought. Now, some fools in Italy who call themselves doctors are bringing it up again.
I'm not going to write more on this because Kerrie at The Daily Headache already said what I'd say. So, I'll just suggest that you go read her blog entry. Thanks, Kerrie!
The so-called "Migraine personality" was debunked years ago. Well, at least that's what I thought. Now, some fools in Italy who call themselves doctors are bringing it up again.
I'm not going to write more on this because Kerrie at The Daily Headache already said what I'd say. So, I'll just suggest that you go read her blog entry. Thanks, Kerrie!
Thursday, February 01, 2007
Leading Migraine Author and Advocate Joins the Team at The HealthCentral Network's MyMigraineConnection.com
ARLINGTON, Va., Feb. 1 /PRNewswire-USNewswire/ -- The HealthCentral Network, Inc. today announced that Teri Robert, prominent Migraine patient, author and advocate, will join the MyMigraineConnection.com team as Lead Expert Patient. Robert, who has personally struggled with Migraines, will educate, support, and empower patients through regular articles and blogs on THCN's Migraine site. MyMigraineConnection.com provides targeted clinical information and resources, as well as a community of patients, like Robert, who share the details of living with a disease from a personal perspective.
Robert is also dedicated to staying up-to-date on developments in Migraine research. She studies medical journals and books, attends medical conferences on a regular basis, and has earned continuing education hours from the American Headache Society, the Primary Care Network, and the Center for Health Care Education.
About The HealthCentral Network
The HealthCentral Network, Inc. has more than 30 general health and highly specific condition and wellness web properties, each committed to offering a voice in everyday and personal language people can understand and connect with at critical points in their lives. Each site provides timely, interactive, in-depth, and trusted medical information, personalized tools and resources, and connections to vast communities of expertise for people seeking to engage in, manage and improve their health.
The award-winning, multimedia experience combines medically-reviewed articles from doctors and researchers, as well as news, information, video and extensive engagement from people who have great experience and empathy in specific health areas. The Company recently expanded its health and wellness offerings with the acquisition of FoodFit.com, a leading healthy eating and active living Web site, and produces the Medical Breakthroughs television, seen around the country. The HealthCentral Network received top recognition from The International Health and Medical Media Awards with a 2006 FREDDIE Award for MyDiabetesCentral.com and was awarded the Health Care Standard of Excellence WebAward from the Web Marketing Association.
Founded in the late 1990s, The HealthCentral Network, Inc. was acquired in 2005 by a team of blue-chip investors, including Polaris Ventures, Sequoia Capital, The Carlyle Group and Allen & Company. With a management team that combines decades of experience in interactive media and medical, science and news journalism, The HealthCentral Network aims for the highest standards of quality, relevance and community for patients and their caregivers.
SOURCE The HealthCentral Network, Inc.
"Optimal health care can be achieved only when patients are educated about their health, and patients and physicians work together as treatment partners in an atmosphere of mutual respect," said Teri Robert. "MyMigraineConnection.com provides visitors with advice and insight from expert voices and people who have actually dealt with Migraines, so individuals are not only informed, but given the support they need to actively manage and participate in their health -- I'm excited to be an active part of that community."After a life-long struggle with Migraines, Robert's career as a writer and advocate started at About.com, where she was the Guide to Headaches and Migraines for nearly seven years. During this time she released her first book, "Living Well with Migraine Disease and Headaches." Published in 2005 by Harper Collins, it remains a top selling book in the field. Robert is also a well known patient advocate, and was awarded the National Headache Foundation's Patient Partners Award in 2004 for her "ongoing patient education, support and advocacy." She is the Support Advisor for MAGNUM, the National Migraine Association currently collaborating with THCN on Internet resources for Migraine sufferers, and an active member or advocate for the following organizations: O.U.C.H., the Organization for Understanding Cluster Headaches; The American Heart Association's Go Red for Women initiative; and the American Diabetes Association.
"The expert voices on our sites are essential because they have first-hand experience and years of commitment to help others manage and take control of their health," said Chris Schroeder, CEO and President of The HealthCentral Network. "Teri Robert's vast experience and dedication to Migraine education and support is an incredible addition to MyMigraineConnection.com."
Robert is also dedicated to staying up-to-date on developments in Migraine research. She studies medical journals and books, attends medical conferences on a regular basis, and has earned continuing education hours from the American Headache Society, the Primary Care Network, and the Center for Health Care Education.
About The HealthCentral Network
The HealthCentral Network, Inc. has more than 30 general health and highly specific condition and wellness web properties, each committed to offering a voice in everyday and personal language people can understand and connect with at critical points in their lives. Each site provides timely, interactive, in-depth, and trusted medical information, personalized tools and resources, and connections to vast communities of expertise for people seeking to engage in, manage and improve their health.
The award-winning, multimedia experience combines medically-reviewed articles from doctors and researchers, as well as news, information, video and extensive engagement from people who have great experience and empathy in specific health areas. The Company recently expanded its health and wellness offerings with the acquisition of FoodFit.com, a leading healthy eating and active living Web site, and produces the Medical Breakthroughs television, seen around the country. The HealthCentral Network received top recognition from The International Health and Medical Media Awards with a 2006 FREDDIE Award for MyDiabetesCentral.com and was awarded the Health Care Standard of Excellence WebAward from the Web Marketing Association.
Founded in the late 1990s, The HealthCentral Network, Inc. was acquired in 2005 by a team of blue-chip investors, including Polaris Ventures, Sequoia Capital, The Carlyle Group and Allen & Company. With a management team that combines decades of experience in interactive media and medical, science and news journalism, The HealthCentral Network aims for the highest standards of quality, relevance and community for patients and their caregivers.
SOURCE The HealthCentral Network, Inc.
Saturday, January 27, 2007
The Demise of Wikipedia's Migraine and Headache Pages
It's sad, really. The Wikipedia pages about Migraine disease and various forms of headaches such as tension-type and cluster headaches were, at one time, excellent resources. What they've become is just more flotsam on a sea of questionable Web content.
Wikipedia is a good concept -- a sort of online encyclopedia that anyone can edit. And therein lies the problem. Anyone can edit. The "policing" of editing isn't well monitored by anyone other than those doing the editing. On the Migraine and headache pages, some editors have become quite territorial. God forbid that you add an external link or make a minor edit if you don't have a long history of edits to your name. God forbid that you be new or an actual expert in the field with limited time. The more territorial (and bitch) of the editors will rip you to shreds on the "Talk" pages or worse -- accuse you of spamming and plaster it all over the talk pages to ruin your reputation.
Point in case: I noticed that author, advocate, and lay expert Teri Robert has a modest list of edits to these pages as well as having created the Hemicrania continua page. At some point, she added a link to some content on HelpForHeadaches.com. That offended a nurse who edits under the ID THB, who proceded to post to more than one page, "Teri Robert spamming book." Even when Teri apologized to this ahem, person, she continued to quite rudely berate Teri. Now, a civil human being would have accepted her apology and offered to help her work better within the poory communicated "rules." Of course, a civil human being wouldn't have been so pissy about it in the first place.
As a cluster headache sufferer, I took a look at that page today. A new statement has been added, "Sluder's neuralgia(syndrome) and cluster pain can often be temporarily stopped with nasal lidocaine spray. If successful, outpatient nasal septoplasty and splinting can resolve the condition." There is no citation for this asertion of fact. Where is THB now? It will be interesting to see if anyone does add a citation for this supposed fact as I've talked with two headache specialists about it. The more polite of their responses was, "That's BS if ever I've seen it. There's just no way that treatment could "resolve" the condition."
I feel rather sorry for the many people who have earnestly and diligently worked on Wikipedia pages. The way Wikipedia is run moves it from my list of "dependable content" to "questionable content to be read for amusement value only."
Oh, and to THB, I'm really sorry that you're so unhappy that you take it out on other people the way you do. Miserable circumstances don't have to make you act like a miserable person. That's a choice.
Shalom,
Abi
Wikipedia is a good concept -- a sort of online encyclopedia that anyone can edit. And therein lies the problem. Anyone can edit. The "policing" of editing isn't well monitored by anyone other than those doing the editing. On the Migraine and headache pages, some editors have become quite territorial. God forbid that you add an external link or make a minor edit if you don't have a long history of edits to your name. God forbid that you be new or an actual expert in the field with limited time. The more territorial (and bitch) of the editors will rip you to shreds on the "Talk" pages or worse -- accuse you of spamming and plaster it all over the talk pages to ruin your reputation.
Point in case: I noticed that author, advocate, and lay expert Teri Robert has a modest list of edits to these pages as well as having created the Hemicrania continua page. At some point, she added a link to some content on HelpForHeadaches.com. That offended a nurse who edits under the ID THB, who proceded to post to more than one page, "Teri Robert spamming book." Even when Teri apologized to this ahem, person, she continued to quite rudely berate Teri. Now, a civil human being would have accepted her apology and offered to help her work better within the poory communicated "rules." Of course, a civil human being wouldn't have been so pissy about it in the first place.
As a cluster headache sufferer, I took a look at that page today. A new statement has been added, "Sluder's neuralgia(syndrome) and cluster pain can often be temporarily stopped with nasal lidocaine spray. If successful, outpatient nasal septoplasty and splinting can resolve the condition." There is no citation for this asertion of fact. Where is THB now? It will be interesting to see if anyone does add a citation for this supposed fact as I've talked with two headache specialists about it. The more polite of their responses was, "That's BS if ever I've seen it. There's just no way that treatment could "resolve" the condition."
I feel rather sorry for the many people who have earnestly and diligently worked on Wikipedia pages. The way Wikipedia is run moves it from my list of "dependable content" to "questionable content to be read for amusement value only."
Oh, and to THB, I'm really sorry that you're so unhappy that you take it out on other people the way you do. Miserable circumstances don't have to make you act like a miserable person. That's a choice.
Shalom,
Abi
Friday, January 19, 2007
Looking for Migraine & Headache Writer Teri Robert?
OK, I'm biased. Virtually everything I know about Migraine disease I learned from Teri Robert. Reading her articles taught me that Migraines are a disease; that I have not only the right, but the responsibility to ask my doctors questions AND get some answers, that I do not have to live with nearly daily Migraines. She's the reason I capitalize the word Migraine. So, I'm biased. Teri is my hero. I want to grow up to be Teri Robert. (Well, not literally. She's only a few years older than I am, but you get the point.)
I first discovered Teri's writings and Herculean patient advocacy efforts on About.com. Last weekend, I was dismayed to find her picture gone from her site there and "Apply Now" where her name had been. Whatever About.com did to make her decide to leave or didn't do to entice her to stay, it's their loss. I, for one, won't be returning to their site or their forum since I won't find her there.
Fortunately for all of us, a quick email to Teri revealed that she is well and that after she resigned from About.com, she went to MyMigraineConnection, which is part of the HealthCentral Network. She told me she'll be doing mainly the same things there that she did at About.com -- "writing articles and other content, blogging, and hanging out on the forum." Yesterday, "Teri Robert's Blog" had a new entry - "New Year's Resolutions for Migraine Doctors."
So, if anyone is looking for Teri, now you know where to look! :-)
Shalom,
Abi
I first discovered Teri's writings and Herculean patient advocacy efforts on About.com. Last weekend, I was dismayed to find her picture gone from her site there and "Apply Now" where her name had been. Whatever About.com did to make her decide to leave or didn't do to entice her to stay, it's their loss. I, for one, won't be returning to their site or their forum since I won't find her there.
Fortunately for all of us, a quick email to Teri revealed that she is well and that after she resigned from About.com, she went to MyMigraineConnection, which is part of the HealthCentral Network. She told me she'll be doing mainly the same things there that she did at About.com -- "writing articles and other content, blogging, and hanging out on the forum." Yesterday, "Teri Robert's Blog" had a new entry - "New Year's Resolutions for Migraine Doctors."
So, if anyone is looking for Teri, now you know where to look! :-)
Shalom,
Abi
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