Showing posts with label MAGNUM. Show all posts
Showing posts with label MAGNUM. Show all posts

Thursday, April 23, 2009

Managing Life with Migraine Teleconference

On Sunday, April 26th, at 4 pm Eastern time, Megan Oltman of Free My Brain From Migraine Pain is hosting her second monthly Managing Life with Migraine Teleconference with Michael John Coleman, Co-Founder, President, and Executive Director of MAGNUM, the National Migraine Association. Participation is FREE but registration is required. Details and how to participate can be found HERE.


Thursday, May 29, 2008

UPDATE: Getting the Correct Information on Migraine Drug Treximet

The comments I made to the The Real Cougar Woman in reference to the misinformation in the article Migraine Sufferers - This New Drug Might Help You are now showing. I don't know if they were removed intentionally or if it was just one of those "things" that sometimes happens in cyberspace.

I was hoping that because my comments weren't there, the article might be corrected. But noooooo, the article remains the same. Wait, something has been fixed. It's so small that I almost missed it. The last sentence no longer says:

If you are a migraine sufferer ask your doctor if treximent is for you.
Now it says:
If you are a migraine sufferer ask your doctor if treximet is for you.
The spelling of the word "treximent" has now been corrected to "treximet". YIPPEE!

One down, a bunch to go...

This updates my previous blog entry Getting the Correct Information on Migraine Drug Treximet

Wednesday, May 28, 2008

Who is GINA? And What Does She Have To Do With Migraine Disease?

GINA is not a "who" but a "what". GINA is the Genetic Information Nondiscrimination Act of 2008. GINA was signed into law by President George W. Bush on May 21, 2008.


On April 24, 2008, the Senate passed this bill 95 - 0. It was sent back to the House of Representatives on May 1, 2008 and passed 414 - 16 - 1. Congressman Ron Paul (R-TX) was the only person to vote against this bill.

GINA makes it illegal for insurance companies and employers to discriminate against you because of your genetic makeup. A press release issued by Coalition for Genetic Fairness explains that this legislation protects against this discrimination by:
  • Prohibiting group health insurance plans and issuers offering coverage on the group or individual market from basing eligibility determinations or adjusting premiums or contributions on the basis of an individual's genetic information. Insurance companies cannot request, require or purchase the results of genetic tests, and they are prohibited from disclosing personal genetic information.
  • Prohibiting issuers of Medigap policies from adjusting pricing or conditioning eligibility on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose genetic information.
  • Prohibiting employers from firing, refusing to hire, or otherwise discriminating with respect to compensation, terms, conditions or privileges of employment. Employers may not request, require or purchase genetic information, and they are also prohibited from disclosing personal genetic information. Similar provisions apply to employment agencies and labor organizations.
Congresswomen Louise Slaughter (D-NY), who first authored and introduced genetic nondiscrimination legislation thirteen years ago, issued this press release explaining the historical precedents for GINA:
  • In the 1970s, many African-Americans were denied jobs, educational opportunities, and insurance based on their carrier status for sickle cell anemia, despite the fact that a carrier lacked the two copies of a mutation necessary to get sick.
  • In 1998, Lawrence Livermore Laboratories in Berkeley was found to have been performing tests for syphilis, pregnancy, and sickle cell on employees without their knowledge or consent for years.
  • In 2000, the Burlington Northern Santa Fe Railroad performed genetic tests on employees without their knowledge or consent.
So, what does all this have to do with Migraine Disease?
Migraine is a hereditary condition. It is a genetic neurologically-based disease. The MAGNUM article, Migraines: Myth Vs. Reality explains:
Migraine is a genetically-based disease. We first learned this in the mid-90's, as it was specifically stated in correspondence with M.A.G.N.U.M. by Dr. Stephen J. Peroutka, M.D., Ph.D., President & CEO of Spectra Biomedical, Inc., a group of research physicians dedicated to understanding the genetic basis of Migraine and other illnesses, the "data are unequivocal: Migraine is a genetically-based illness. Individuals with a single parent having Migraine have approximately a 50% chance of having Migraine. This susceptibility is neither psychological nor induced by environmental causes."
Although Griffith University's Genomics Research Centre (GRC) in Australia is not the only one doing genetic research for Migraine disease, it is the home of the world's largest collection of DNA samples from migraine patients. The GRC has discovered different genetic regions on chromosomes 1, 19 and X where Migraine genes are found. Through genetic research, they have identified a link between hormones and Migraine and a link between Migraine genes and stroke saying:
There's a mutation in this gene that makes people more likely to suffer stroke and also increases the risk of migraine. We believe this to be a link between migraine and stroke.

It is possible for genetic testing to play a huge role in finding a cure for Migraine and other diseases and conditions. GINA will allow those of us with a genetic disease or condition to participate in testing without the fear that our insurance companies and employers find out. Those who may be predisposed to a specific genetic condition now have the opportunity to be proactive by monitoring their health and possibly preventing a genetic disease or condition.

For more information on genetic discrimination, you can read the 25-page report in pdf format: Faces of Genetic Discrimination: How Genetic Discrimination Affects Real People. (I did say it was 25-pages and in pdf format, right?)

Friday, May 23, 2008

Getting the Correct Information on Migraine Drug Treximet

I was just over at Migraine News Network reading Raingem's interesting article, "Treximet or TrickThem-et?" She provides us with good information about this new Migraine medication and points us to something:

Debbie who runs Down The Rabbit Hole blog:, has noticed something interesting - a little subversive disinformation campaign as propagated by sloppy journalists and uninformed patients alike. There are plenty of little news blips if you care to search for them that say pretty much the same as this little article: New Drug Could Be Best Migraine Medicine On Market.
I find all this ironic. Two days ago I was reading Migraine news. It seemed that article after article was bullshit, misinformation, unreliable and lies. So when I stumbled on this Treximet article Migraine Sufferers - This New Drug Might Help You on The Real Cougar Woman I started to get mad. This article was filled with inaccurate and misleading information and I couldn't take it anymore, So I did something I usually don't do. I wrote a letter to the author, pointed out the incorrect information and provided her with the correct information. I told her that she didn't have to post my comments but I would like her to fix the stuff that was wrong. She ended up posting my comments instead.

You can read them below
or read them in context on The Real Cougar Woman. Since my comments were removed two days after being approved, here's part of the article including the incorrect information in red:

...This month, a new drug is expected to land in pharmacies that combines two existing migraine drugs. It promises to offer relief without the fear of addiction. It's called treximet.

Apparently it works by combining two existing drugs that control two different aspects of migraine headaches. First, it prevents blood vessels in the head from narrowing. Second, it blocks the brain from releasing chemicals that signal pain.

If you are a migraine sufferer ask your doctor if treximent is for you.

My comments in their entirety follows:

Treximet is NOT the combination of two existing Migraine drugs. It combines a Migraine medication with an NSAID. The Migraine medication, Sumatriptan, is a Triptan (technical name is selective serotonin receptor agonists), and is the ingredient found in Imitrex. The NSAID is naproxen sodium, the same ingredient found in the over-the-counter medicine Aleve. This is used for many other conditions. You say "It promises to offer relief without the fear of addiction". Even though it's not very common, NSAID addiction can occur. Additionally, using these products separately and/or together can cause a serious condition for Migraine sufferers called Medication Overuse Headache also known as Rebound Headaches.

I know that all medications including vitamins and supplements have side effects but your article makes it sound as if there are no risks associated with using this medication. Yes, there are benefits of both medications but it should be noted that NSAIDs can be FATAL. It increases heart attack and stroke risk and can be harmful to the liver, kidneys and stomach. NSAIDs can also cause ulcers, bleeding, perforation and other gastrointestinal effects.

You're incorrect to say that this medication prevents blood vessels in the head from narrowing. Treximet does NOT prevent blood vessels in the head from narrowing. During a Migraine attack the blood vessels in the head DILATE. Sumatriptan causes vasoconstriction. This means that this medication does the exact opposite of what you said it does and constricts, or narrows, the blood vessels. You can verify this information on MAGNUM, the same site you cited http://www.migraines.org/treatment/treathis.htm

Treximet is misspelled "treximent" in the last sentence.

Using the phrase "Migraine Headache" is also inaccurate. Migraine is a genetic neurological disease. Migraines are NOT headaches. Headache is just one symptom of a Migraine and there are many other symptoms such as, aura, nausea, vomiting, photophobia, phonophobia and vertigo. Some people don't have headaches during a Migraine attack so calling it a "Migraine Headache" is misleading.

I'm not asking you to publish my comment, I'd just like you to fix the misinformation.
Pam
http://pinkpurlgurl.blogspot.com

Friday, May 9, 2008

May is Stroke Awareness Month - Do You Know the Warning Signs?


Did you know Migraine increases your Stroke risk? Information regarding the Migraine - Stroke connection can be found in MAGNUM's article Migraines: Myth Vs. Reality:
According to the New England Journal of Medicine, "migraine can sometimes lead to ischemic stroke and stroke can sometimes be aggravated by or associated with the development of migraine." Twenty-seven percent of all strokes suffered by persons under the age of 45 are caused by Migraine. Stroke is the third leading cause of death in this country. In addition, twenty-five percent of all incidents of cerebral infarction were associated with Migraines, according to the Mayo clinic. Most recently the British Medical Journal reported that after evaluating 14 major Migraine & stroke studies in the U.S. and Canada that Migraineurs are 2.2 times greater risk for stroke than the non-migraine population. That risk goes up to a staggering 8 times more stroke risk for women Migraineurs on the pill!
Can you recognize ALL five correct Stroke symptoms? Can you identify an incorrect Stroke symptom? Do you know when you need to call 9-1-1 when someone appears to be having a Stroke? If you answered "no", you're not alone.



Results of the 2005 Behavioral Risk Factor Surveillance System (BRFSS) survey that was used in 13 states and the District of Columbia (DC) to examine public awareness of Stroke warning symptoms and the importance of seeking emergency care were examined in this week's issue of the CDC's Morbidity and Mortality Weekly Report article Awareness of Stroke Warning Symptoms --- 13 States and the District of Columbia, 2005. Out of 71,994 participants only 16.4% of respondents could recognize all five correct symptoms, identify an incorrect symptom and recognize the need to call 9-1-1.

May is Stroke Awareness Month. The National Institute of Neurological Disorders and Stroke (NINDS) developed the Know Stroke, Know the Signs. Act in Time campaign to educate the public about recognizing Stroke symptoms. If you don't know these five symptoms, take the time to learn them. If you already know them, teach them to someone else. At the very least, print them and attach them to your refrigerator so that your family can learn them.
  • Sudden numbness or weakness of the face, arm, or leg (especially on one side of the body)
  • Sudden confusion, trouble speaking or understanding speech
  • Sudden trouble seeing in one or both eyes
  • Sudden trouble walking, dizziness, loss of balance or coordination
  • Sudden severe headache with no known cause
These five symptoms can also be found HERE.

The NINDS says you may not realize you're having a stroke and you may not be able to call 9-1-1 on your own. The people around you may not know you're having a Stroke and just think you're confused. Don't waste precious time. Arriving at the hospital within 60 minutes after experiencing symptoms can greatly reduce Stroke damage. If you or someone you know is having a Stroke call 9-1-1 IMMEDIATELY.


 
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